June 19, 2015 4:00pm

HOME!!!!!

Thank you to all of the amazing people that contributed to Kaylee's care. Although we have been through this before, the experience of bringing her to, and waiting during the surgery, was harder than anything to date. There are many aspects of this week that were harder now that she is older and can comprehend what is going on. Both for her, and for us.
To all of the unbelieveable professionals at Children's Hospital:You have again given us the amazing gift of extending, improving and ultimately saving our Kaylee's life. For that we could never find words strong enough to express our thanks.
Until next time friends-

June 19, 2015 4:00pm
Kaylee had a pretty good day. She walked to the gift shop and bought a couple things with some very hard earned money. (she was given dollar bill incentives to do some of her physical therapy.
Her meeting with AK was a little unusual, as he showed up with a camera crew. Kaylee will be part of a marketing video produced for the hospital spotlighting AK and the cardiology floor. During this visit, AK said he felt we may get discharged this weekend. They will check her chest x-ray tomorrow to make sure that there is no fluid accumulation in her chest.
Fingers crossed to be home.
She should be able to resume the majority of her normal activities by 6 weeks from this past Monday. July 27th should be the date for her to be back up to speed.

June 18, 2015 5:00pm
Kaylee had her last chest tube removed today. This was, again, not a fun experience, but it is over. The fat content in her drains seemed to be less today. Hopefully they will allow her to stay on a normal diet because of this (not a high fat diet)
We have to do a chest x-ray to make sure everything looks ok after the chest tubes are gone. She is now down to just an IV in one arm. Hopefully this helps to reduce her discomfort and gets her up and about more.
Kaylee was allowed to take a trip off the floor today, in a wheelchair, outside and to the gift shop.
We hope to be given our next plan for moving forward, hopefully during rounds tonight or tomorrow morning.

June 17, 2015 11:00am
Kaylee will NOT be getting her second chest tube out today. She had too much volume come out of the tube for them to feel comfortable pulling it. In addition to the larger than hoped fluid accumulation, the fluid started to have a milky color throughout the night. We have been told that this is called chylous effusion. This is where fat is building up in the chest, and we were told that this was due to part of the lymphotic system being knicked during surgery. The nursing staff felt that this may require Kaylee to be placed on a low fat diet for obvious reasons. (these diets could last for a month or more while that system heals itself). With her less than stellar eating habits, this is a concern to Michelle and I in terms of weight gain
AK stopped in and reviewed Kaylee's most recent chest x-ray as part of his overall assessment of her. He feels that she can try a normal diet for the time being and they will decide what to do tomorrow. Until then, the chest tube stays in.
Kaylee is certainly not acting like herself. She is very volitile, and finds herself in fits that she cannot control. Between the steroids, and all of the general unpleasantness who can blame her.

June 16, 2015 1:00pm
We were moved to the floor (out of ICU) at 1pm today. This morning they pulled out most of kaylee's IV's leaving one in her hand for meds and labs. They removed one of her chest tubes, and her external pacing lines while she was awake, which I thought was not the best thing for her to witness. Also gone is the catheter, so she needs to walk to the bathroom now when she needs to go. She was a champ through the whole thing. She is now left with the one IV, and one chest tube.
She is in a noticable amount of pain, which is being managed through narcotics.
We do not have a plan yet for what we should expect here on the floor.

June 15, 2015 9:00pm
They removed Kaylee's breathing tube after about a half hour or more of her being awake with it in. She was very uncomfortable, and frustratingly trying to comunicate with the tube in. Once the tube was pulled, she immediately asked for her new Ipad. Right now she is playing with the new toy in her bed, she is cranky, and groggy, but she is making jokes and showing bits of her personality.
Right now she does need supplemental O2, and has most of her lines still in.

June 15, 2015 2:00
Met with AK in the consult room. He was very pleased with the way things went today. He corrected the ASD from around 3/4" to around 1/8". They got the conduit replaced with one that was 21mm which is large enough for them to replace the pulmonary valve in the cath lab if need be in the future.
AK said that the original conduit, which he replaced, was heavily calcified and restrictive. Once replaced, the pressures were measured by echo, coincidentally, by Kaylee's main Cardiologist (Dr. Brown) who happened to be in rotation for that duty today.
Dr. Brown was very happy with the results as they are about 1/3 systemic, better than we have seen at any point in Kaylee's life.
They were able to close up Kaylee's chest, and we were told that they do not feel there is any reason for them to keep her intubated. Once she wakes, hopefully later today, they will try to remove the breathing machine.
The next 12 hr will be critical, but so far we could not have hoped for better results. Kaylee should be up to, and settled into ICU, around 3:30. We have been told we can go up there then.

June 15, 2015 12:50
Kaylee is off of the heart/lung bypass machine. They are working on installing the pacemaker right now. The steps left, are to get the pacemaker in and set up, which is going to involve Dr. Mah and the EP team. The most concerning part right now, I feel, involves the closing the breast bone. This has historically been a problem because of Kaylee's limited space in her chest cavity. (excess space allows room for swelling, limited space does not) We hope they are able to close her chest bone in the OR, but if swelling does not allow it they could leave it open. The final piece of the puzzle will be to remove the "link" they put in last February to record the heart events. This will no longer be necessary as the pacemaker should provide similar data, and will fix any electrical problems if they occur.

Depending on the chest issue, we should get a good idea of when they wil allow Kaylee to wake. The last we were told was she would not be allowed to wake until tomorrow.
Not sure when the next update will be.

June 15, 2015 12:30
The nurse just gave us the update letting us know that the corrective portions of Kaylee's surgry are done. They are doing an echo right now to make sure they are happy with the results. If they are, they will take her off of bypass.
We did not ask whether or not the pacemaker was placed yet.

Next update should be when she is off of bypass. we will ask the pacemaker question then.

June 15, 2015 10:45
They are still not into the chest yet. There is allot of scar tissue that forms between the heart and the chest bone from her prior surgeries that takes time to seperate before they can get her on bypass. Basically AK has to gently seperate the heart from the chestbone. They said she is doing well, it is just taking longer than normal due to the scar tissue. AK said this was a possibility when we met with him on Friday, and that he planned to take his time throughout this step.

****Nurse just came back, and the head anesthesiologist came out of the OR to let us know they were through the chest and she is now on Bypass. (11am). They said she is doing good, and that she is now at the actual corrective phase of surgery. We were told that they are indeed going to stop her heart (this was not a gurantee) to do the work.
For some reason they felt that this would be a reason for us to breathe and feel a sense of relief. Not the case, but the fact that they feel this is a good milestone helps some.

Next update should be around 12:15 or sooner.

June 15, 2015 9:20
Latest update is brief. She is doing well. They just made their incision. We were told next step is placing her on bypass. Next update will be 10:30 or earlier.

June 15, 2015 7:45
Kaylee was incredibly brave this morning. She was obviously nervous, but met the day head on. She was in good humor, and happy they gave her an IPad to play with while the meds kicked in.
While we were waiting for the meds to kick in, we met with AK and went over the plan for today. He confirmed that they will be replacing the conduit, putting in the pacemaker, and repairing an ASD (although he will leave it open a bit as a pressure relief).
They took Kaylee back at around 7:45. Our first update is to be around 9:45 when they hope to have her on the heart and lung bypass machine.

Pre-Op June 12, 2015
Met the pluthera of people that will be contributing to Kaylees care today. She had a bunch of tests, one of which was another CT scan to determine the game plan to work on her lung restriction. This CT did not correllate with the bronchoschopi <-(killed that word). It seems that the problem that was noted in the prior test, and did not show up in the CT, is likely something that will have to be managed with medication not through a surgical solution. **we will be following up on this at a later date*** Long story short, this new data removes one aspect of the surgery, leaving the replacement of the conduit, possible ASD correction, and installation of the pacemaker. We met with the surgon, A.K. who was very nice and comes with high regards from the team who has been following Kaylee since before she was born. They are very comfortable with him for this operation. In talking with him, we had three choices for the conduit. The first is a cadaver conduit, the second a pig part, and the third a synthetic part. He recommended the pig piece for a few different reasons, and that appears to be the route we will be going. This should be large enough for Kaylee to have future necessary valves put in through the cath lab which is good news. AK informed us that this conduit would not be a final solution to Kaylee's problem which came as a pretty unplesant blow. He gives the longevity of this about 7-12 years before another surgery will be necessary for replacement. Another unexpected tid bit he shared with us was the fact that Kaylee will require a cath within the next 6 months to open up the veins in the lungs to accept the new blood flow provided buy the conduit. This makes a bunch of sense, but we just did not think of it. We were given the first case (they do two surgical slots a day) which is good because people are fresher I would think in the morning. We will be getting to the hospital for a 6am check in on Monday. After that, a normal timeframe should be about 8hr for the operation we were told (could be longer if they find allot of scar tissue from her prior operations). Given this, we would expect to have her in around 7am, and out around 3 or 4pm on Monday. Best case, whe will remain unconsious until Tuesday in the ICU, then woken enough to try to remove her from the breathing machine. Coming out, she will have chest drains, a set of pacemaker leads (additional to the new perminant ones) and the breathing tube. Hopefully she hits the floor in a few days, then around a week we were told is the average to return home. Recovery we were told will involve about 4 weeks for the incision to heal enough not to be a high risk for infection, and a solid 6-8 weeks before she can ride a bike, climb things etc.

Beginning Stay June 2015

7/31/2014 11:30am Kaylee woke up this morning at 6am with a smile on her face. She had a lung scan and echo, and was discharged at 11:30 to go home.

7/30/2014 7:30 met with the cath doctor. he was very happy with the results of todays procedure, and very happy that the prior caths have held up very well. He says that he has made the conduit as large as they can safely do in the cath lab (150% or the original size 12mm i believe) This will be our sticking point now and will require open heart surgery to fix. He is talking next summer... pressures and heart functions are all good he says. not normal but good. we will learn more of the gameplan when we talk with doctor brown tomorrow. Kaylee is much happier nowthat she has food.

7/30/2014 5:45 Last update for a while. Kaylee is out and breathing on her own. we are with her. she is cranky and hungry but did good. we hope to have a visit from the doctors soon for an overview. i will try to put that out tonight

7/30/2014 4:30 almost done. they have completed the right side dialations and are working on the conduit. They may need to stint that

7/30/2014 3:30 This is going to be a long one... We just received our call and were told Kaylee is doing well. she has had multiple dialations on the left side and they had to put a stint into the left PA. They just started on the right side.

7/30/2014 2:30 All of the tests are complete, We were told that kaylee is in the middle of having vessels dialated. No idea how long there is left. should get another update at 3:30

7/30/2014 1:20 So the lung guys went first because kaylee is being given blood thinners for her heart work and those thinners would increase the chance of bleeding or inability to clot and be an additional risk. We were called by the lung doctor to give us some initial findings. The biggest finding was that her left bronchial tube, just after where the right and left tubes split is closed off to about 50 - 25% of normal meaning that she is able to use about 25% to 50% of that main tube to breathe and clear any built up mucus that develops with virus etc... They think that this tube is narrow because of the heart basically pressing up against it. There was o sign of any infections, blood or other bad things. Her pig bronchus looked clear. There was some spotty mucus buildup in soe areas which makes sense as she has a cough. we are told she is doing good and is now having her cath work which should involve pressure readings, pictures, and dialation of narrowed vessels.

7/30/2014 12:45 Kaylee was just brought back into the operating room. They gave her a drink to mae her sleepy/silly. Plan is to do the cath work then the lung people will take over and send cameras into her lungs as well as take some sampes of fluids in her lungs to better understand why she has so many repeated pneumonias. We will get our first update around 1:30 to let us know how things are going

7/30/2014 11:45 its a go. just got brought back.

7/30/2014 10:45 Just met with the pulmonary people. Had to sign concents for a bronchosopy sp? still hoping to get a bed. We were told to hold tight and they will let us know if this is a go. The doctors are waiting as well.

7/30/2014 9:30 so far so good. We are checked in. Not turned away yet

7/29/2014 (6pm) We had good luck today at pre-op, and are schedualed to be second case tomorrow (9am). HOWEVER, we just got a call at 6 tonight telling us that they may not have room upstairs for us on the floor which is necessary for the procedure because she is required to be monitored overnight.. They have a surge of cases right now and the floor is full. They may not be able to discharge enough people for us to allow the surgery to move forward. We are rolling the dice and hoping they will be able to take her as the alternative will likely involve missed school, and we would rather not have her subjected to excess radiation etc.. that was required as part of the pre-op work we had done today. More updates tomorrow.

7/29/2014 (7pm) Many missing cath reports. last of which was in 2012

5/4/2010 (6pm) Kaylee is up and awake. She is uncomfortable, but herself. Dr. Brown just stopped in and had a chat with us. He pretty much reiterated what Dr. Machelhenney stated to us earlier. He thinks that we will be pushing forward with a focus on the next surgery not future cath work. Dr. Brown said he thought her PA's looked very good which is surprising to him considering the work that they needed to do in Kaylee's first year of life. Normally with children who require that much work would not have PA'ss that look as good. He thinks this may be the result of the aggressive approach that they have been taking with her. Dr. Brown is hopeful that we may be able to make it another year, hopefully two until her big surgery. He explained the cow jugular and cadaver options, and we discussed the fact that her Surgeon is no longer with the hospital. We will be determining a new surgeon as we get closer to a date. Kaylee has been cleared to be around other kids officially once she recovers from this procedure. All doctors are pleased, and hopeful. For now we are waiting for Kaylee's food, which she ordered herself. Pizza and Mac-Cheese

5/4/2010 (3:15) Kaylee is out of her cath and is resting in her room in the lab. She will be spending the night here with mommy. Dr Macelhenney <-sp? Who has done most all of her cath work was pleased with where Kaylee was prior to, and post cath. He said he needed to do very little work on the left side. He only needed to do one dilation on that side. Kaylee’s right side needed more work and they did 5 dilations in total on that side. We were told that the areas in the lungs seem to be growing nicely as she grows. The main focus for us going forward is the conduit itself, and its valve. Kaylee had the original conduit put in during her first open heart surgery. I am not sure what size it was, but they currently have it stented as large as it can be which is 12mm. When asked what a normal adult has for a PA size, he said around 28mm which is somewhat oversized. The following is what he thinks will be our next steps, although the actual course of events will be determined by Dr. Brown our main cardiologist. We should hear from him later. Anyway, Dr. Macelhenney feels that we will be on a watch and wait program most likely coming back in 6 months for an echo to evaluate things. They will be trying to strike a balance between getting Kaylee as big as she can be without hurting her heart function. When they feel we are nearing that balance point, they will schedule an open heart surgery to replace the conduit and valve. There are options that the doctors will be considering at that time that have recently become available. One option, the �old, or current way would be to replace the conduit with a cadaver conduit as large as they would be able to fit in the space. The cadaver conduit would have a valve in it and would be rigid. There is a newer method that could be considered which is a jugular from a cow. This jugular would have wire mesh sewn into the outside of it, and a synthetic valve on the inside. This contraption, once installed would be able to be expanded as Kaylee grows allowing for her to increase its size in the cath lab as opposed to open heart surgery in the future. Another nifty little device that was just approved in January is a valve which could be installed in larger conduits through the cath lab which will be handy for future valve blow outs. After meeting another family whose child has the same diagnosis who was treated in another hospital, we feel very very fortunate to have this particular hospital and doctors treating Kaylee. (I will put up more information after our meeting with Dr. Brown)

5/4/2010 (1:30pm) Kaylee went into her cath this morning on time. We have had two updates so far. The first telling us that she was doing ok, and that they were taking the measurements to determine a game plan. The second update was at 1PM telling us that they were doing work on the Right Pulmonary Arteries. The nurse was unable to tell me what the game plan was, or how much more they were planning on doing. We are due for another update at 2pm.

5/2/2010 (8pm) Kaylee is going back to Children's hospital again this week. She is going in for pre-op tomorrow (Monday) and will be going for a Cath on Tuesday to open up some of her vessels. I will update this page as I find out information on Tuesday.

6/3/2009 (3pm) We are home. Kaylee was discharged this morning and is doing well. We spoke with our team of doctors about the results of this cath and what is going to be required going forward. It seems all parties are in agreement that Kaylee will need another open heart surgery within the next 6 months to replace her pulmonary conduit, a valve, remove some muscle growth and open the pulmonary arteries by the filet method they used back in August. We were hoping that this operation would not be necessary until Kaylee reached the age of 6. Guess not. We will be trying to block the impending surgery out of our minds as much as possible and hope we make the full 6 months with no problems.

6/2/2009 (3pm) Those that read this know that we have actually had one surgery between my last post and now. Kaylee had a broken sternal wire (used to hold the rib cage together after open heart). That was back in April. NOW we are here again for another cath. Kaylee has just come back from another VERY long operation (roughly 5hr). She is in the general recovery area right now which means her breathing tube has been removed. So far so good. Our report from the doctor, post cath, is a mixed bag of good and bad news. The good news is that he is happy with the look of the blood vessels out towards the lungs. He feels that the pressures in the lungs are good and he feels the work from our last procedure actually held up well. This leads us to the bad news. He found that there are two main areas of her heart that are adding significantly to the overall pressure problem. The first is the conduit that was placed in Kaylee during her first open heart surgery. The second is a muscle buildup at the intersection of the conduit and her heart. Both of these problems add about 30pts to her overall pressure problem. I guess thirdly there is an additional related pressure contributor which is the valve in the conduit which has been destroyed and rendered useless because of the pressure problems. There is only one way to fix these problems, open heart surgery. We definitely were not planning on this, and unfortunately we are looking at about 6mo from now. I will post more details as we find them out. The date of an open heart surgery will be up to her surgeon, and team of specialists who have not reviewed this yet.

2/25/2009 (8am) We are feeling much better this morning. Kaylee woke up at 1:30am hungry and took a pretty good bottle. She followed this up with another reasonable sized bottle at 5am and again at 7:30. She managed to keep all of these feedings down, and her energy level seems to be picking up. Hopefully we will be able to keep this as my last post for 6+ months. 2/24/2009 (7:45pm) We are home. We were released from the hospital this evening under not very optimal circumstances. She has not really proven that she can eat, she has only had about 30cc of food total in the last two days. She is awake and alert, just not feeding well. They chose to let us go because there is a nasty bug that has infected the floor. It is a stomach bug called the rotavirus and they did not want her to risk contracting it. We are home cautiously, but home all the same. It is everyone’s hope that Kaylee will feel comfortable and eat better here. Hopefully I am done updating this for a while, but you never know

2/23/2009 (9pm) Kaylee was just taken off of the breathing machine. She was being monitored for a good time to remove the tubes. She was in a deep sleep on the machine, then all of a sudden she awoke, quickly looked around in a panic, and flipped herself over to a crawl. She tried to scoot up the bed swatting at the breathing tubes placed in her mouth. We were told this was a first, and all the people in the room were laughing. They were impressed with how much of a fighter she is. This is a good step for us, and we are quite a bit happier.

2/23/2009 (4:30pm) Just got through with the doctor consult. He stated that he was happy with the results (we achieved a final pressure of 70), although he is not thrilled. He says there is more work to be done and he will determine whether they sign us up for another elective cath, or wait to have her go high again. This will be a team decision. If elective we would be looking at 4-6 months most likely. Without going into great detail, the big things to note are that the VSD (hole in the heart is closed). This is what gives pressure relief if pressures rise and we wanted this open a little due to her anatomy. Another biggie is that the constrictions that are causing her pressures to rise are in a variety of different locations and there is no magic bullet (so to speak) that he can find and cure. Kaylee's radiation is being monitored, as the contrast used in the lab contains radiation, and she has had 7 caths. Nobody knows the long term effects of high radiation, but it appears we will need to weigh the benefits of the radiation versus her heart function. At this point, heart function is first and foremost. Not a fun dilemma. We have been told that surgical options (another open heart) is on the table depending on the timeframe of her pressures increasing again, and certainly in the not so distant future to replace the conduit and valve. On a brighter note, the doctor feels that we should, perhaps not for a few years, but we should get to a point where the frequency of Kaylee’s trips to Boston should span years not months. To sum what we know so far today, it seems we are at the same point that we were at when we left the hospital in March. We have not seen Kaylee as of yet, she is getting settled in the ICU. I will update this further if anything changes.

2/23/2009 (3:30pm) We arrived in Boston today bright and early despite the snow. With a 7am check in, Kaylee was taken into the operating room at 10:30am. As of right now, Kaylee is still in the OR and is going through a very aggressive procedure. We have been told that due to the length of this procedure and the amount of blood flow that they anticipate achieving, Kaylee will be brought directly from the OR to the ICU. She will remain on the breathing machine there perhaps overnight. They do this because as the lungs receive more blood flow than they are used to, they start to build up with fluid.

10/15/2008 (1pm) We were discharged from the hospital this morning at 10am. Kaylee is eating again, by mouth, and appears to be happy being home. It is everyone’s hope that we will not need to have any more procedures until after Kaylee's birthday, about 6 months from now. We will hope and keep our fingers crossed.

10/14/2008 (5:30pm) Kaylee just got out of a very long cath procedure. Actually she was in there about as long as the doctors felt reasonably comfortable. They use something called contrast during the procedure which they do not like to give too much of, so that dictated how much work they were going to do today. In speaking with the doctor who performed the procedure, he could have done more, but did not stop before feeling good about the work he was able to accomplish. They found a pretty significant source of the high pressure was in her conduit. It seems that our surgeon who performed the open heart surgery shortened her conduit (the part that Kaylee was not born with, and she had installed in March during her first open heart). The conduit was shortened to reduce the likelihood of it's kinking the pulmonary arteries. When he shortened the conduit he cut a piece out, and sewed the tube back together. When this healed, it created a fold on the area of the stitching, and that created a pretty significant block shortly after we went home from the hospital. To remedy this they placed a stent in the conduit to keep this area open. The stent is pretty big, roughly�. In addition to this they ballooned open areas out towards her lungs where the pulmonary arteries branch again. As of right now Kaylee's pressure is about 75% of systemic, about 70 inches of mercury, the lowest we have seen so far, and the best results as of yet. We have never really been below systemic so this is promising. The doctors found there to be muscle built up just before the conduit in the heart that is also causing some obstruction and increased pressure. The muscle built up due to the large amount of work the heart has been required to do so far in Kaylee's life. We will be watching this area, and may need to remove that muscle surgically. The most likely time for that to happen would be when she needs the conduit replacement, hopefully not for a few years. We are with Kaylee now in the cath lab, where she will be staying the night with her mom. It is our hope to be discharged tomorrow.

10/13/2008 (5pm) We completed pre-op today and were released back home for a good nights sleep. Kaylee is second case surgery tomorrow most likely having her operation around noon. We will be checked in at 9am.

9/05/2008 (7:30pm) Kaylee was released from the hospital today. She woke up in a much better mood and has stayed in a good mood all day. Thank you to everyone in Childrens that worked to make Kaylee better and get her home so quickly. We also wanted to thank everyone who keep Kaylee in their thoughts and prayers. We have our next cath procedure scheduled for October 14th to dilate further down in towards her lungs in the hopes of getting her pressures to almost normal levels (ystemic). Until then we will be working on keeping Kaylee smiling, and growing.

9/04/2008 (8pm) We are still here at the hospital. The doctors are watching Kaylee's food intake as it has been a bit pokey. I think we might just sneak in under their minimum threshold if Kaylee has a fairly decent feed at midnight. Kaylee has been very cranky all day, and would only stop crying if we took her for walks. So we got some exercise today. Home tomorrow we hope.

9/3/2008 (7pm) We were moved to the floor today. It took a while due to a major shortage of bed's over here, but we are now settled in. Kaylee’s feeding tube was removed last night due to her meeting the minimum requirements for feeding, and looks very cute without all of the hardware attached to her face. For some reason she is pretty cranky here in the new room. We are trying to figure out if it is an environmental thing, or if she is in some discomfort. Her feeding has not been as strong since we transferred either… Hopefully she will do better. Kaylee and dad were allowed to take a walk in the gardens this afternoon allowing mom to do her work. I think the fresh air was good as she is sleeping now. Our doctors think we should be home for the weekend if things continue to go well, we are really hoping they allow us to leave tomorrow. I am not sure what they will be looking for to give us the green light to leave. That is about it for her condition today, although we did make a discovery this morning. When Kaylee was feeding the nurse noticed one of her teeth poked through her gums. It's cute, its small, but she now has a little tooth. Hopefully tonight will be uneventful with eating, sleeping and good numbers on the monitors.

9/2/2008 (6:30pm) We came in this morning and found Kaylee only had one peripheral IV and an art-line. (not sure what that was but it went through the stomach and was removed this afternoon). Her oxygen was removed as well today, and we were given the go-ahead to move to the floor. Although we are cleared for the floor, we can not go there because there are no beds available. We have been waiting all day but the outlook is grim that we will move there today, but I have been told that we are the next to go. All and all it has been a pretty good day. We were able to get Kaylee to smile, first at 11pm last night and occasionally throughout today. She has been eating fairly well, with her minimum feed just over an ounce, and her last few feeds around 3oz. They are looking for about 1.5oz per feed as a goal. Hopefully that would mean we could go home without the feeding tube if Kaylee keeps up the good feeds. We have been keeping a close eye on her respiratory rate, oxygen levels and heart rate. It is very apparent that the VSD was opened, as she drifts to oxygen levels in the mid 80’s while she sleeps, and is in the mid to low 90’s for the most part while she is awake. There is still some diminished performance in her lungs because of the junk built up in them, and she does better after coughing, but she will be running lower in oxygen saturation now. We have not received any more information on her over inflated lungs, although we do plan to see our cardiologist (Dr. Brown) tomorrow. He has a great way of explaining things to me. Funny, his ears must have been burning, he just stopped by. We were told he had not seen the xray yet, but he feels the hyper inflated lung issue should go away with time. Dr. Brown just told us the results of the echocardiogram performed on her today. He said her RV pressure is about 70-80. Our goal is 50, and we will be back in 6-8 weeks for another cath to try to get there, but this should drastically help her heart not need to work so hard. He said the opening in her VSD was smaller than he had hoped but did not say what his plan was. Dr. Brown seems pleased with her, and hopes for our stay to be short, possibly only a few more days if things continue well. Below is a picture of her from this afternoon:

9/01/2008 (9:30pm) Today has been yet another roller coaster of a day. Early this morning we were told that Kaylee looked better and was not struggling so much to breathe anymore. As usual there was a caveat. Her respiratory rate was very high and this proved to be a concern to the doctors. We were told, second hand, that the doctors thought that Kaylee had developed lower respiratory disease. We made the mistake of googeling this and decided it would best to have the doctor explain things. It has taken all day, but the doctor finally came by and explained that from the xray it appears that Kaylee has hyper inflated lungs. This is a condition where the lungs have more air in them than they should, and in turn are difficult to fill. I am not entirely sure, even after the explanation, what this means. I do know that they are relating it to her high ventricular pressures, and blocked mucus sacks in the lungs. We will find out more of this tomorrow I am sure... Although there was a concern over Kaylee's respiratory rate, the doctors allowed for a reduction of the high volume oxygen. As of about 3pm Kaylee was completely off of the high pressure oxygen and was on ½ litre of regular oxygen. We did a feeding experiment at that time with pedialite, 60cc. She ended up drinking the whole thing, which after our past feeding problems is encouraging. A few hours later Kaylee was given regular 20cal Good start formula, she consumed 40cc. Just an hour ago we fed her again with 20cal good start and she ate 85cc. We are hoping not to need her feeding tube, but that will be up to Kaylee. Our nurse, who coincidentally is the same one who made the mistake a few days ago, will be removing another iv tonight, and hopefully the oxygen. We are looking good to be released to the floor tomorrow if we continue down a good path. We have mixed emotions right now, concerned about the lung abnormality, and pleased that we could be one step closer to home tomorrow. On a side note, our decision to keep the nurse who made the mistake was a good one. She has treated Kaylee very very well, and went to bat for me (dad) when I was fit to kill someone the other night when people would not listen to me. She is actually someone we will look forward to seeing in the future when we find ourselves back here. We have crossed fingers for a good night.

8/31/2008 (10pm) We had another setback last night. (what a surprise) When Kaylee was taken off of the breathing machine she was working very hard to breathe. This is normal, although a few hours passed and her breathing was not getting better. The staff here have been working on trying to figure out why she is having these problems. She has good blood gasses which indicates her system is working well, but it is taking allot of effort to breathe. Early this morning the attending cardiologist decided to put her on a high volume oxygen setup. This is to try to help her inflate her lungs with every breath, and hopefully open up some areas of the lungs that may be obstructed. She had an early morning chest x-ray that showed she had fluid in her lungs, as well as a pocket of fluid outside of her lungs that was placing pressure onto her lungs. Both of these things could lead to labored breathing. The initial step to treating this was ot give her medication to try to remove fluid from her tissues, reducing the fluid pockets and relieving the pressure on her lungs. If this did (or does) not work they would need to place a chest tube into her to drain the fluid off directly from the outside of her lungs. As of the last chest x-ray the lungs looked as though they had shed some of their fluid, and the fluid outside of her lungs was unchanged. We are going on 27-28 hours now post extubation (off breathing machine) and Kaylee is still struggeling to breathe. They have her on a cautious watch, with bi-hourly chest pounding and nebulizing to try to break up phlegm deposits in her lungs. She seems to have more energy tonight than she has had yet, and is exhibiting some of her personality, although she is visually frustrated with the heavy breathing, and is far from cracking any kind of a smile. It is becoming worrisome that her situation does not seem to be improving much if at all.

8/30/2008 (8pm) There was a pretty significant mistake in Kaylee’s care last night. The nurse in charge of Kaylee administered a pain killer through the use of one of the IV pumps. The pain killer is called Dexmedetomidine. As a result of a very severe mistake, Kaylee was overdosed. She was supposed to set the machine to deliver a dose an hour. When she set up the machine, she set it to a dose per minute. This went on for 40 minutes before the mistake was noticed. She basically got 3 days of pain killer medicine in 40 minutes. We are of course very angry, and are doing our homework as to the side affects of this medication, both short and long term. We are being told that the medication has a half life of 2 hours and should have run its course through her system in a matter of hours. As this happened at 3am, we hesitate to say she is in the clear right now. All of her vital signs look good, so: so far so good. We are in talks with management here to determine why something like this was allowed to happen, to find out what the long term effects are and what will be done to reduce the chances of this happening in the future. Obviously, had this been a different type of drug a 60X dosage could have been lethal. We just met with one of the senior doctors (management) about the over dose issue and pushed for some follow up tests on liver and kidney function. The consensus is she should be fine overall, but there is no data to back that fact. Our second biggest concern, next to making sure Kaylee does not have adverse affects from the medicine is to find out how the hospital limits the possibility of this happening again. Michelle happens to be a quality engineer and has already been pushing them for a corrective action, and offered some pretty good ideas. We were told we will get the report and will be able to offer our opinion on that report. The hospital is taking this very seriously, as they should. We actually requested the same nurse from last night to watch Kaylee tonight. Some people may find that odd, although we feel that she was a good nurse yesterday, and will be a very good nurse now. I do not feel anyone else here in this hospital knows the consequences of a mistake as much as she does, and in turn I think she will be over careful from here on out. This is based on both my and Michelle's judgment, and that is that. So in conclusion, this is not a dead issue, we are working to make sure Kaylee is checked out thoroughly, monitored thoroughly, as well as working with the hospital to reduce the likelihood of these human errors happening again. ON A BETTER NOTE, Kaylee is off of the breathing machine, and her chest tubes have been removed. She is now on oxygen administered through her nose. This is at a very low setting and hopefully will not be the case for long. This is standard procedure after someone is extubated. She is laboring somewhat while she breathes so they are not allowing us to feed her until she is working less on the breathing. Kaylee is somewhat awake and alert, and is confused as she is now beginning to realize what is going on. We are hoping to get her feeding sometime tonight.

8/29/2008 (3pm) The surgeons just finished closing up Kaylee’s chest. We have been told things went well. The next step in getting Kaylee better is to get her off the breathing machine. In order to do this the nurse just shut off the paralytic drug drip. This drug has been keeping her from breathing and moving. She still will be unconscious due to another drug she is on, but this will allow her body to begin taking control of her own breathing. Once the paralytic has worn off the breathing machine will start to show breaths initiated by Kaylee in a graph. The repertory technetium will continually play with settings on the machine to slowly work Kaylee into breathing on her own. The goal is obviously getting the graph filled exclusively with Kaylee breaths. We hope for her to be ready to breathe on her own tomorrow, and have the machine removed. Somewhere during this time her chest tubes will need to be removed; I am not too sure when that will happen. With the breathing machine removed, and the chest tubes out, they will allow her to wake, and we will begin the process of trying to get her to eat again. Michelle and I decided to place some pictures onto the surgery page of this website. These pictures are very graphic, and definitely not for most people to view. These pictures show her chest open and tubes in. We made the decision to post these because it is impossible to describe correctly in words what these visits involve. I would not recommend looking, but they are there. Thankfully we are getting positive responses from our cardiologist (Dr. Brown) and surgeon (Dr Basha), in terms of the results of the surgery.

8/28/2008 (7:30pm) Kaylee has been taken off of the pacemaker. Hopefully this will last, she was taken off of the pacemaker around 3 this afternoon. We were told that she will not have her chest closed today; the plan is to close it tomorrow. Our fingers are crossed for no surprises tonight, and for her to get her chest closed early in the morning tomorrow. Once her chest is closed they will be able to lift the paralytic. The paralytic is keeping her from moving, but also keeps her from making any effort to breathe. With the paralytic off, they will be toying with the breathing machine working with her to get her to a point where that could be removed. In a perfect world, she would be off the breathing machine and eating by tomorrow night. Unfortunately we have not had much luck with perfect scenarios but we are hopeful. It will just be nice to see Kaylee open her eyes again tomorrow.

8/27/2008 (10pm) Kaylee is having rhythm problems with her heart. It is not uncommon, so they say, although this did not really happen to us last time. Because of this they have her on a pacemaker, and they are adjusting the settings on it to try to take control of the heart rhythms for now. I am sure we will find out more of what this means tomorrow. This aside, we have been told her bleeding has stopped and her chest opening looks good. They are hoping to be able to close the chest sooner than later. I am not sure what this pacing problem will do to that plan

8/27/2008 (4:30pm) Our surgeon just stopped by to let us in on what he found. Apparently they had to leave the chest open because there was bleeding from an area of her pulmonary artery. They have stopped the bleeding but it will be a few days before they will close up the chest. We have been told Friday or Saturday. Last time around it took five days. This leaves Kaylee unconscious again for a very long time… Our Surgeon also told us that he opened things up as much as he could, although he found there to be narrowing further down in the lungs. Because of this, Kaylee’s pressures were not reduced to where we had hoped. She is about 20% below systemic pressure where she should be 50%. Because the pressure reduction was not as much as they had hoped they opted not to replace the conduit and valve as per our original game plan. We were told the pressures are still so high she would just blow out the new valve so there is no use. He told us that we are to expect more conduit replacements than we originally thought. We were originally told to expect two more conduit replacements, and now he says to expect more. He would not commit to a number, just more. Every conduit replacement means more open heart surgeries, more days like today and more risk. Because her pressures are so high, we have just bought ourselves another trip to Children's hospital in 6-8 weeks for more balloon dilations. We hope to know more when we speak with our cardiologist later. We are still waiting for Kaylee to be released to ICU.

8/27/2008 (4pm) It seemed like things were taking too long and it appears that it was. We just found out that they will not be able to close Kaylee's chest today. This is the exact same scenario as the last time we were here. Recovery will be substantially longer now as they will have yet another step, closing the chest, prior to their even thinking of extubating. They are in the process of sewing a synthetic patch over the incision area and will leave the rib cage open and the chest open to allow for her heart swelling to go down. This was not part of the plan, and very frustrating news. Hopefully sometime soon our surgeon will come out for our consultation to find out what happened, and what he feels were the results of the repair.

8/27/2008 (3pm) We were just told that Kaylee is still warming, and she is still on the heart lung bypass machine. They have decided to do an angiogram to check all of the vessels past the pulmonary arteries. We were told they might do this when we were here last, although it was a bit of a surprise that it was not mentioned on the last update. We were told they have only had the technology to do this within the last two years and our surgeon seems to be incorporating this into most of his cases. (and is unique that way). Anyway she is still on bypass, ok literally she just got taken off bypass while I was typing this… This is a good sign, that means her heart is back up and running her blood throughout her system. We were told we should hear from someone shortly regarding the surgery. It was at this point last time when our surgeon delivered us bad news, so we are still on the edge of our seat at this point

8/27/2008 (2pm) We just received word that the surgeon is warming Kaylee back up to restart her heart. They will be checking to make sure their repairs were successful, and if it appears they are, they will try removing the heart lung machine, then close the chest. If they find problems they will try to make adjustments at this time. If all goes well, hopefully they are able to get her heart started and get her off that machine. She will then still be on life support (breathing machine) as well as other things. Hopefully we get another update within a half hour.

8/27/2008 (11:15am) Kaylee went into surgery at 8:45 this morning. She was in a very good mood this morning smiling and playing (despite our being up at the crack of dawn). She was given a light anesthesia around 8:30 so she would not fuss too much when they took her away from us. I think they should issue some meds to us for the same reason, but they were unwilling. We were just told that Kaylee went on the heart lung bypass machine at 11:10am, and her heart is now shut down for the repair work. We will hear more in another hour.

8/4/2008 (4pm) Today has not been one of our better days. Kaylee left for her surgery on time this morning and everything seemed to be pretty much on track with our game plan from last night. Shortly after dropping her off our cardiologist (Doctor Brown) stopped into the room which surprised us. He hit us with the good news bad news line and we asked for the bad first. He informed us that Kaylee was indeed going to need to have another open heart surgery because the area of constriction was the same place we dilated our past 4 visits. Because of this our cath lab surgeon decided not to do any “work” on her, and opted to do some pre surgical exploring to map out what was determined by the team as an impending need for open heart surgery. This news sucks. Our options were laid out, first option was to take an open slot this Wednesday or wait for our surgeon another 2-3 weeks (he is going on vacation). As every day passes Kaylee’s heart function deteriorates, so the decision to go with Wednesday is a necessary one. We have the first surgery position on Wednesday as of right now. This will be another pretty involved procedure, although not quite as involved as before. They will be cutting open her rib cage again, place her on the heart lung bypass machine and will open up the constricted areas by slicing and patching. Since they will already be in there, they will also be replacing the conduit (the part they placed in her during the last surgery that connects the right ventricle to the pulmonary artery) this needs to be replaced because the valve no longer functions in it due to the high pressures kaylee has been dealing with, and the diameter could use to be increased now that she is a bigger person. She will also need this replaced at least two more times as she grows, hopefully years and years apart. Lastly they plan on opening up the hole (VSD) that has closed in-between the right and left ventricles. This will serve as a pressure relief in the future if arteries constrict and pressures rise. Hopefully she will not need it. So since all of this news sucks we asked for the good news. Dr. Brown said the good news was she was out of her cath and we may possibly be able to go home tonight. (only to return on Wednesday morning…..) It will probably take a few days to come to grips with the fact that Kaylee will have chest tubes, breathing machines, heart bypass machines an extended period of unconsciousness amongst other very scary things. I guess it is good that we will be able to do this at home, and not at the hospital. Wish her luck.

8/3/2008 (7:30pm) Well we were scheduled to have another cath on August 19th, although at our last cardiologist visit we found out otherwise. Kaylee had maintained slightly high RV pressures up until last Thursday. Upon review of her echo, they found her pressures had risen, her Right Ventricle function is starting to degrade, and one of her valves has started to fail and leak. You would not know this by looking at her, but the problems are serious and we needed to come down and get her fixed sooner than later. The plan is to dilate her Pulmonary Arteries, try to open her VSD, dilate any other constricted vessels beyond the PA, and possibly enlarge her conduit. We need to substantially reduce the pressure in her RV to stop any further deterioration of her RV function and valves. We were told functions of the degraded areas should get better when we reduce the pressure. It seems that the doctors are preparing us for the very real possibility of another open heart surgery very soon. The surgery that seems to be all but a certainty will involve slicing the pulmonary arteries lengthwise (filleting) and patching them to increase the diameter. We are clinging to the possibility that we will not have to go there, but the reality is it seems that is where we are headed. We will find out more tomorrow. As for now, Kaylee is pretty much done with her pre-op workups. The only things left to do tonight is put in an IV and give some blood for labs. As of right now we are first in line for the Cath Lab tomorrow. That puts Kaylee in there at about 7:30-8am.

6/20/2008 (6pm) We were released from Childrens Hospital this afternoon directly from ICU. We thought this was a little strange, because you commonly have to spend a night on the floor prior to discharge. Regardless, we were sent home around 3pm. We spoke with our primary doctor this morning and he discussed how he felt about our progress, his oncerns, and his gameplan. He is not very happy with how high, and how quick Kaylee's pressures go up in the right ventrical. He stated that if that if we were to continue down this road we could actually damage the right ventrical. Because of these concerns, they have decided to place a pretty hefty emphesis on when we come in for the next cath. Should we have to come back in less than two months, and if the pressures are extremely high when we come back we will be one step closer to another open heart surgery. They will, if this happens, try to open up the hole connecting the right and left ventricals. This is the hole that was partially closed during the last open heart surgery. Normal hearts have no hole between these two chambers. They originally left a small hole in the patch to allow a kind of pressure relief valve for the right ventrical. Since her surgery it has decided to close on its own (not unexpected) and does not allow for the pressure relief. So, if we have extremely high pressures when we are due for the next cath, they will try to open this hole back up during the cath procedure. After that procedure, we would monitor kaylee and see if her pressures rocket up again. If that happens, we will be forced into an open heart procedure. This will involve the heart and lung bypass machine, something we are not fans of... The surgery will involve slicing the arteries open, and placing a synthetic patch into the slice increasing the artery diameter. Lets hope that does not happen. It is our hope to not have to update this for two months or more, although kaylee's arteries will dictate when I update this again. Wish her luck-

6/19/2008 (6pm) Kaylee had her procedure today. The doctors were able to enlarge quite a few areas and seemed happy with their results. Unfortunately, they ended up needing to put in a stint. They managed to place this stint in the same place that they placed the stint before. They were able to get the cath between the old stint and the pulmonary artery wall, and actually replaced the old stint with the new by crushing the old one against the arterial wall. This new stint is able to be expanded more and is actually placed better. All of this being said, Kaylee was taken to ICU post-op. She had quite a bit of blood loss, and built up acidity in her blood stream throughout her procedure. Because of this she was kept unconsious and coninues to be on a breathing machine. Funny how we saw these things coming... We hope, and are pushing very hard to have her breathing machine removed asap, we were told most likely tonight or tomorrow if all goes well. This means we have bought ourselves at least another day in the hospital perhaps even more. The doctors are concerned that her pressures were as high as they were when we came in this time so close to the last procedure. The doctor eluded to the possibilty that they might explore the possibility of another open heart surgery if she comes back as high on the next visit. He said a few possible procedures that I personally want nothing to do with. (sorry about any spelling errors)

6/18/2008 (5pm) We are back in Childrens Hospital again. This was somewhat of a planned visit. We found out we would be needing to come back last week when Kaylee had an echocardiogram that showed her pressures had increased once again. We were admitted 12 o'clock this noon, and as of right now we are settled into our room, Kaylee has had most of her pre-op work done, xray, ekg, scary paperwork, and her physical exams. She is due to have her IV placed in a little bit, they will then take bloodwork and we will wait for tomorrow. We have been told we are on the schedule for the second cath tomorrow morning, which usually means around 10am. She will require a breathing tube tomorrow which we have developed a bit of an adversion to because of the problems we have had waiting for its removal in the past. We have our fingers crossed, and hope for a successful, uneventful procedure tomorrow. The goal is, once again, to enlarge the pulmonary vessels by means of baloon dialation. We were preped for the fact they might need to put some stints in. Everytime they say might about things here it turns out to be a certianty. So I expect she will have a stint or two installed tomorrow. For anyone who didnt notice, I posted the video from her last surgery on this website. The video is not for everone (there is no blood it is all xray image), but you can find the link on Kaylee's main page under "surgery".

5/19/2008 (9pm) Kaylee was discharged from the hospital today. She has a mild fever that we will be watching, but she is home. We now have oxygen tanks in case she has trouble breathing, and we were able to get an oxygen saturation monitor to check her if we feel she is having blue spells. This will help us considerably in evaluating if she needs a trip to the doctor or emergency room. Our doctor feels we have bought ourselves a couple of months before her next procedure, although he will not be scheduling one. They have decided to monitor her weekly with echocardiograms to see where she is and set a date from there. All in all we are very happy to have Kaylee back home again, and feel very fortunate for the brisk trip in and out of the hospital this time. In reality, the surgical process only took part of Sunday through today. Kaylee's feedings are still not up to par, so she continues to have to supplement oral feedings with the feeding tube. We will again be focusing on this issue while we are home. We were cleared to bring Kaylee to the supermarket and other places with the understanding that we are to use great discretion in terms of the health of those who come in contact with her. We are pretty happy about that as we were obviously not thrilled with the notion that we would be bubble people... Hopefully no real updates will be necessary for a few weeks, I will plan on adding only pictures once a week on weekends as progress reports until we find ourselves back at Children's Hospital.

5/19/2008 (8pm) Kaylee has completed yet another surgery. She was in the cath lab between 12 and 3:30 today, and had considerable dilation work performed. Most of the constriction happened to be on her left side (the side with the sitint). Fortunately our scare of breaking the stint loose and not being able to reach the left side were never realized. The doctors stated that they made enough contact with the stint to say pretty confidently that the stint is secure. Overall the doctors are happy with the way the procedure went, although pressures in the right side are still high. She is down to about 80, from 110. The ultimate goal is to have her at around 40. There are limits to how much they can go on each trip. It is not good to leave her where she is now, so we will be back again. The doctors feel we bought ourselves about 2-3 months before our next trip. Judging by our luck so far, we will most likely be here in another month... Another thing the doctors found in the procedure today was that the VSD (hole between the right and left side of the heart) is closing or is closed on its own. Back when she had her open heart surgery the surgeon purposely left a hole inbetween the two chambers to give somewhat of a high pressure relief valve for the right side of the heart. Normal hearts do not have a hole there, and ultimately she would have had this hole closed in her next open heart surgery, so we do not know exactly how we feel about this. This is something we will talk more with the doctors to get a handle on. The really good parts of today are the stint not posing a problem, the dilation's going well, and Kaylee was released bact to the floor without being tied to the breathing machine. With any luck we might even be released tomorrow. Kaylee is tired, but is eating. Her first feed was 40cc of sugar water. Her second feed was about two hours later, and she took 43cc of a diluted formula mix. She is a very strong willed little girl.

5/18/2008 (8pm) Pre-op work has been done and we are ready for tomorrow. Like always, there happens to be a catch with this surgery. It seems that the stint that they placed into Kaylee a few weeks back is going to be a pretty significant obsticle. Since she is so small, the stint size they had to use was larger than they wanted. As a result of using this lare stint, some of the stint is actually sticking into the pulmonary trunk. (where the blood flowing from the right ventrical splits and goes both to the right and left lung) So this stint is sticking into the intersection and most likely is going to block access to the right pulmonary artery. This is not very great news because the right pulmonary artery is most likely where the narrowing will need to be dialated the most. It was the doctors hope to have more time for this stint to fuse with the arterial wall. Since we are so close to the last surgery, it most likely is not fused, and could become disloged if it is hit with the cath. Ultimately we may be looking at opening her up to remove this stint surgically. These are things they are preparing us for, not necessarily what will happen. What they have told us is that this cath will be very dificault, and they will do their best. On the bright side, Kaylee is happy, eating pretty well and has no idea what is in store for her tomorrow. Her weight this morning was 7lb. Down about 4oz from Friday.

5/17/2008 (8pm) Slow day today here. We had limited visits from doctors, and nurses. Kaylee did not really have any real bad episodes of turning blue or labored breathing thankfully (so far). We switched rooms today, our nurse was nice enough to notice we had the neighbors from hell, and moved us to a room with VERY nice people. Their daughter has a similar condition (Tetrology of Fallot), with an added problem of only having one lung. Things can always be worse... We have been told that some pre-op work will be done tomorrow during the day which will include paperwork and some baseline stuff. Monday morning Kaylee will have a lung scan. This will tell us how and where the blood flow is in the lungs. This should help the doctors performing the cath pinpoint narrowed vessels that could need dialation. This also will set a baseline lung blood flow which will be compared to a lung scan that will be performed after the surgery. We are schedualed for the second cath procedure on Monday's schedule which should be around 10 or 11am.

5/16/2008 (9pm) We are back in Childrens Hospital again. Looks like, once again, Kaylee was unwilling to wait for her schedualed appointment. This time we were able to come on our own, in our own car and not an ambulance. We drove into the emergency room today around 2pm, she was evaluated and then admitted. Kaylee is schedualed for her cath surgery monday morning. She will be under the watchfull eye of Childrens between now and then. We had to come here because she started having "blue spells" where she actually turns blue, she is having increasing feeding problems, increased trouble breathing and increased irritability, and an echocardiogram from yesterday that showed her right ventricular pressure went up to 110 (she was discharged at 70, most people are around 35). So, here we go again. We will be on the general floor until Monday morning, then off to CICU after her surgery. She will be placed on a breathing machine again, and all of the lovely business we went through before.

5/06/2008 (9pm) Kaylee was discharged this afternoon. She has not needed to use her tube all day, and we hope through the night. If all goes well, we hope to have her tube removed after her antibiotics are complete. We are scheduled to have her next surgery June 6th. This will be another pulmonary dilation in the cath lab. As I write this, Kaylee is swinging happily in her swing, a much diferent, and happier girl than we brought home before. Hopefully I will not need to update this again before June 5th. If all goes well, we will be updating pictures. For anyone keeping track, Kaylee is 6lb 6oz, 1oz less than her birthweight. She did not gain any weight at the hospital, but we hope to pack on the pounds now.

5/05/2008 (8pm) Kaylee had her barium swallow test today. This tested to see if fluid would go down into her lungs when she would drink. They do not believe, initially, that there is a problem. They will be taking the results and reviewing them further, but things look good so far. With these results in hand, Kaylee was allowed to start taking the bottle again. So far she is performing about as well as before, but we will be focusing heavily on this issue. We plan on bringing her to a speech pathologist (apparently they are feeding experts) to have them work with her to get the feeding thing down. One of Children's staff will be in to see Kaylee in the morning to begin this process. It sounds like they have decided on a termination date for the antibiotics. She will receive her last dose Thursday at 8pm. We may be able to come home earlier than that if things go well. They plan on switching her from IV antibiotics to oral antibiotics, which will allow for our early return. She will need to go back for her next cathordization in the next few weeks. It would be nice if we could actually keep this appointment, instead of taking the ambulance again. Her saturations and heartrate are maintaining good levels, much diferent than the last time we were released. (so far). ***As I was typing this Kaylee slurped down a full ounce of formula by mouth. Big burp too. (happy parents)

5/04/2008 (9:30pm) Pretty good day, no real surprises. Kaylee, as of 8pm tonight is up to her full regular feeds, (about 1.5oz every 3hr). So far she has kept the food down. She will hopefully be having her Barium test tomorrow. We should also be moved to the floor tomorrow, and out of ICU.

5/03/2008 (7pm) Kaylee turns 8 weeks old today. On her 8 week birthday they were able to get the feeding tube back in. They placed the tube in at around 8am, and started her on feeds at around 2pm. She is being worked into it, through continuous feeds, and should be up to a full calorie diet at 11pm tonight. They removed a large line from her vein just a little while ago, and placed in a standard IV line. She is off the oxygen completely and actually has a shade of pink I cannot remember seeing on her. She looks (visually) very good. The lab here at Childrens has not grown any staff "bugs" from the blood cultures drawn after her admittance. She was on antibiotics at the time these were drawn. The doctors feel that eiher the anitbiotics did the trick quickly on her, or the samples taken from Exeter hospital were contaminated. Regardless, they are thinking that they will not have to do a full 5-6 week dose of the antibiotic, perhaps just one. We will be getting more information on this topic. The doctors will not allow her to bottle feed, or attempt to, until they perform a barium swallow test. We will be pushing for this sooner than later. My assumption is they will sandbag this until Monday now that we are into the weekend.

5/02/2008 (10pm) The doctors removed Kaylee's breathing tube today. She is now on about 1.5litre of oxygen through the nose. We hope to have her off of that soon. The cultures taken from Exeter hospital showed that there was in fact staph in Kaylee's blood (assuming the samples were not contaminated). The good thing is that the staph that was found is treatable and will be taken care of through the antibiotics already in use. Since there is staph in the blood, and she just had her surgery, they will be giving her antibiotics for 5 weeks (most likely). If this is the case Michelle and I will probably bring her home and do the IV thing ourselves. They are planning on a berilium (spelling?) swallow test to see if she leaks fluis into her lungs when she eats. They are trying to schedule that now. In a few hours she should have her feeding tube back in to start her back on food.

5/01/2008 (5pm) Kaylee made it through her surgery this morning pretty well. The doctors found her left Pulmonary Artery (PA) to be extremely narrow, and her right PA to be small but open. They decided to place a stint in the left PA and baloon dialate it. The effect was good and dropped her pressures dramatically. Because they put a stint in the left PA, they did not want to push their luck with trying to dialate the right PA. Insted they left well enough alone, and chose to leave the other side for a future cathordization in a month or so. During the procedure they also coiled off the last remaining collateral artery. This was a surprise to us, as we thought that Kaylee would be needing another invesive procedure to attach that collateral artery to the pulmonary trunk. The doctors found that with the left PA opened up, that the left lung was receiving enough blood flow and that collateral was actually redundant. So we can scratch that surgery off our list I guess. The doctors are anticipating being able to remove the breathing tube tonight. Quite a bit needs to happen in the meantime as Kaylee still has not waken from the drugs given during the surgery. Since things were going too well today, we received bad news that the blood cultures taken in Exeter hospital started to grow Staph bugs. This is not a good thing, but we really do not know how much of a bad thing. The doctors are having many discussions on the topic, and are watching the cultures taken here very carefully. The cultures taken here were taken with antibiotics in her blood stream, so I really hope they come back negative... Exeter is preforming tests to see what antibiotics, if any, kill the Staph in their samples. Nobody has answered what they will do if it is an antibiotic resistant form of Staph. This is a high priority for this evening as well as the breathing, and POSSIBLY adding calories with a feeding tube.

4/30/2008 (10:30pm) As an update to the 8pm post. We just met with the doctor on call here. He filled us in on exactly what the big rush is, and answered some of our concerns. First, he said her right ventrical pressure is high, which we knew. What we did not know is that it is at 140. So we asked what normal is and he said 35. This is very dangerous, and makes her body shut down with any kind of stressful situation. We experienced this a few times at home unknowingly and it really peaked this morning right before they placed her on the breathing machine. There is some helpful information from this data. The big thing is how it relates to her eating. Eating is stressful to a baby, and with these pressures so extremely high, it makes babies like her shut down. Babies with high RV pressures do not grow, do not eat and are easily pissed off. Kaylee is an extreme case of high RV pressure, and this sort of explains why her eating has been getting worse as we have been going along. Her RV pressures have continued to rise presumably making thngs worse and worse. The doctors do not feel she will come down to a normal pressure tomorrow, rather they hope to hit 80 or better. (hopefully better). With any luck this will relax her and help her to want to eat and grow (without the feeding machine). This doctor seemed to confirm my suspicion that they are planning to use stints tomorrow. He did explain their use, and made us feel more comfortable with them. We were told to expect to take 15-20 trips to the cath lab by the time Kaylee is two or three years old. We were told to expect multiple stints in the process. He did say that this hospital has pioneered this process for kids with pulmonary atresia and that this is the best way to keep Kaylee's heart and body happy.

4/30/2008 (8pm) Today has been difficult to say the least. We seemed to be on a plan this morning of waiting until tomorrow to determine a cath game plan. As of 10am Kaylee was starting to feed again, by tube. We left for a quick lunch and things just seemed to change. We were called and told that the chest incision area began to pus. The surgeon on call came over to try to get all of the pus from the area and Kaylee went into, what must have been, a considerable amount of distress. The doctors were concerned enough where they needed to place a breathing tube into her and place her on paralytics. She is now paralyzed, although somewhat conscious. The doctors also determined that they needed to have a way to administer drugs directly to the heart and to get a better blood gas and pressure monitor. To do this they needed to place vinus and arterial lines into her. This took from 1pm to 7:30pm and they were not even able to get the arterial line in. The doctors believe she has a pneumonia in her lung, and know she has an infection in her chest incision area. She is now on 3 different antibiotics to aggressively treat these problems. Compounded on those two issues, she has pressures in her right ventricle which are way too high. This is forcing us into the cath lab tomorrow under much less than ideal conditions. She is sick with infection, and one week less than the recommended 6 week post op waiting period for the pulmonary dilation. Unfortunately the risks are higher to wait than to go forward. We have been briefed on the procedure, filled out our scary paperwork and will be waiting until 11am-ish for her to go to the lab. I guess it is good to mention that the work being done will be, from the best they can determine, a dilation of the pulmonary arteries closest to the trunk. That is where they connected the missing conduit a few weeks back. They mentioned putting in stints, which we asked for them to avoid as they are not great to use on children her age/size. I feel they already plan on using them, though the doctor gave us the politically correct answer that they will have to make that determination in the lab.

4/29/2008 (10pm) The results of the echocardiogram are back. We met with the doctor on call and he said there are no major surprises beyond what they would expect. There is, however, a much higher pressure on the right side of her heart than they want. This is something that needs to be addressed sooner than later with the cath trip. It is very likely they will be sending her sooner than expected, how much sooner will be determined after watching her throughout the night. I asked if that was the reason she was not breathing correctly, and he said no. He said he thinks she had some fluid enter her lungs which is making it hard for her to breathe. They are administering antibiotics for that, and he hopes that the problem will clear itself out. He stressed that they really want to monitor her throught the night to see how she does with no feeds, the antibiotics and the oxygen. As I type this she is sleeping very soundly with no grunting. We will meet with GI tomorrow to look into a few tests to find out how she may be ingesting fluid. We will hopefully be having a barium swallow test.

4/29/2008 (7pm) We are back in Childrens ICU again. Kaylee woke up about 4am this morning very uncomfortable. We just met with the GI people yesterday to work on her feeding issues, and they had us add rice to her formula. Since we made the formula change late last night, we attributed the uncomfort to the change in formula. As time went by and she was still not calming down. Her crying was under control, but she grunted every time she took a breath. We did not find this very normal and called our local cardiologist to schedule an appointment and to explain to her the symptoms. Her response was to immediately hang up and call 911. So we did and made friendly with the local police fire and rescue people then Michelle rode with Kaylee in the ambulance to Exeter's emergency room. At Exeter they checked vitals and monitored her while she waited for the Childrens hospital team who came up in their "baby buggy" a pretty sophisticated ambulance truck. Her labs are coming back ok so far. Her chest xray is consistant with the discharge xray, her blood work looks good so far, and they do not see a need as of right now to put a breathing tube in. We are waiting on the results of the echocardiogram, this is where the doctors expect to find the source of her respitory distress. They are thinking one of her collateral arteries, or her pulmonary arteries have a constriction. We were due to have the cathordization for just that reason, although we are one week away from being in the necessary 6 week post op period. I will update when we find out the results of the echocardiogram.

4/23/2008 (9:30pm) WE ARE HOME! Took us a while to find the place, but our house happens to be right where we left it. We were a bit surprised that we were discharged today as Kaylee dropped in weight again from yesterday to today. We are all a bit surprised at that because she kept her food down pretty well yesterday. We had our first visiting nurse appointment tonight, conveniently in our family room. The nurse basically went over our meds and how to dose them, she also went over the feeding machine, and some of Kaylee's vital signs. We are schedualed to go to our doctor on Friday as a follow up. It should be interesting to see them, as we created some pretty good excitement the last time we were there. As it stands, we will be heading back in for our cath procedure on the 12th of May, we pray no sooner. This SHOULD be a three day thing. We appretiate anyone and everyone who was interested in Kaylee's progress, and all those who have been thinking and praying for her. Hopefully our little bundle of joy will gain some weight now that she is at home.

4/22/2008 (11pm) We are still here at Childrens Hospital Boston. Kaylee dropped ever so lslightly on her weight again, and had a low grade feaver this morning. We met with feeding, and they gave some recommendations to get Kaylee to eat, and some encouragement that she should be ok. We should be out of here tomorrow, it seems much more likely now, as we have been through some of the discharge protocols. We feel pretty confident that if her heart is well, we will be able to take care of the feeding thing for the next two weeks until we are in the cath lab (May 12). We have been assured that from her heart standpont she seems to be doing fine. Should we go home we will have visiting nurses for a while (probably until cath), and regular doctors visits. Hopefully my next update happens from home.

4/21/2008 (8:30pm) Kaylee has gained back the weight she lost so she is now 6lb-11oz. She did not take much by bottle until the last feeding, where she took 20cc. We are to meet with the feeding team tomorrow, hopefully they will be able to offer some insight into the feeding problem. There were rumors last week that we might be discharged tomorrow, hopefully those rumors are true.

4/20/2008: (9:30pm) Hard to tell how today went. Kaylee dropped a bit in weight this morning down from 6lb-11oz to 6lb-10.5oz. Not a huge change, but it did go down. This could be due to the stomach problems (loose stool) and some screaming fits yesterday. We also removed the calorie additive yesterday, which dropped the caloric intake (obviously) but could deffinately contribute to the drop in weight. We have been worried about the caloric additive being a cause of some of her discomfort, and it seems she has been better since coming off of it. Whatever the case may be, we will continue to keep her off of the calorie additive, and boost her calories through larger volume feedings. This was approved by the nutrition lady today. We also felt some of her feeding problems (by mouth) were due to an unpleasant tasting formula. We switched to a new formula this morning to test that idea. She was doing pretty well up until her last feed where she spit up about 10cc of her 50cc. Earlier today we were able to get her to take two feedings of 20cc a piece, tube feeding the remaining 30cc each time. It did not appear to be a result of the formula or taste (though that may have contributed) what did seem to work was changing the position she was in during the feed, to where she was laying down on her rignt side. I have no idea why that seemed to work better, but we will bring this up to the feeding team on Tuesday, and will explore this and other positions to note the effect. All in all she seemed pretty comfortable throughout the day. She had a visit by her cousins, aunt Cheryl, and uncle John. She went outside in the garden for a walk, and was again mesmorized by the great outdoors.

4/19/2008: (9pm) Today Kaylee is 6 weeks old. For her birthday we were able to unplug her and do something she has not done before. We were able to round up a stroller for her and took her outside in the garden here. It was pretty funny to see her facination with the surroundings. She has only really been outside a few times before when going between the car and the hospital. She is really not doing well with feeding, so we have backed off considerably from trying to get her to eat with the bottle. It is really a mystery why she is having such a hard time. Our goal is to bulk her up, and get her to stop being uncomfortable with the feeds.

4/18/2008: (4:30pm) We are not going to be going home as expected this weekend. We will be in the hospital until at least Tuesday now. They are performing an upper GI on her this afternoon to find out what exactly is happening between her mouth and her stomach that is making her throw up.

4/17/2008: (8:30pm) Better night last night Kaylee was on strictly on tube feed, and did not throw up. She did pretty well today, she took some bottle feedings around 15cc per, with one throw up for the day so far. She will be on continuous feed through the tube all night tonight to allow her to gain weight. The doctors reviewed her EKG and found her to have a high heart rate, and are putting her on (surprise) another drug to control that. This drug wil also help her heart pump and take some pressure off of her right ventrical which is doing too much work right now due to the narrow pulmonary arteries. Surprisingly, we were told we will probably be going home this weekend. We will be issued a feeding machine and her NG (feeding tube) will remain in. We will have visiting nurses come by probably daily until her cath work which has now been schedualed for May 12th. Hopefully we are able to make it to the cath lab with no problems inbetween, and we are going to be focusing on trying to get Kaylee to remember how to eat in the meantime. Today marks our one month post op.

4/16/08:(10:30pm) Worst day yet for feeding as she will not take to the bottle, was very upset, and vomited with every feeding. The surgeon is unhappy with her weight gain, or lack of it as she is still at her birth weight, and told the nurses to strictly tube feed at night with added calories to every feed. People here seem a bit confused with her symptoms so she has another drug added now. I believe the drug is called reglan. So she is now on a cocktail of reglan, prilosec, zantac, malox, lasix, asperin, methadone, tylanol, mylacon and malox. Hopefully one of these will do something to make her eat. She had an EKG today to try to see if they are missing something related to her heart function, unfortunately we were unable to obtain the results prior to our team leaving this evening.

4/15/2008: (9pm) The GI doctors came in today and evaluated Kaylee. They are agreeing with the cardiac team and the nurses that Kaylee is suffering from severe acid reflux with lactose intolerance. This is good because that should be treatable. They put her on a combination of Prilosec and Zantac. They will be fiddeling around with the dosages to determine the right mix to hopefully remove the pain from eating, and allow her to become comfortable eating without a tube again. They stated this could take plus or minus a week...... Kaylee's blood saturation has been trending down. She was hanging around the mid 90's and now she is hanging around the mid to low 80's. The cardiac team is aware of this and are not phased. They seem to think she is settling out in that range and should not drop lower. I guess we will see. Fortunately, the cath trip we will be taking at 6 weeks post op should improve the blood flow to the lungs, reduce pressures in her heart and have a good effect on her saturations. We will be at 4 weeks post op this Thursday. Right around the corner now.

4/15/2008: (12:30am) Just turned the corner on 3 weeks in this place. Kaylee did not react well to the soy formula. We have now switched to a lactose free regular formula. Added some other drug to the mix. Wait and see time again

4/13/2008: (9pm) Kaylee is still having a hard time with food. She is having reactions to both bottle fed and tube feed. She is not bottle feeding really, about 10cc is what we can force down, and she really shuts down after that. Doctors changed her to a soy based formula this afternoon, with no real benifit as of yet. They feel she may be dehydrated, although continue with diuretics (sp?). They pumped some pediasure into her this evening to try to boost her fluid content... There were no GI doctors in today so Kaylee will meet with one tomorrow. The malox also did not seem to help, and she did really like the taste.

4/12/2008: (11pm) Kaylee did not want any feedings by mouth today. We put all her food through the tube. They have added malox to the mix to see if that would help her be more comfortable feeding. We need her to take all her food by mouth for 24hr straight before the tube comes out. 24hr after that to be released. Opefully the malox will work. They have contacted a GI doctor to review her case. Chest X-ray showed she is retaining fluid in her lugs, this caused lower oxygen saturation, and requires more drugs to remove the water.

4/12/2008: (11am) Kaylee was on a good streak from Wednesday night around 7pm through thursday early morning around 5am putting down all of her food by mouth. At about 5am that stopped. She has not eaten on her own at all yesterday, and has not as of this point today. The doctors are going to start her on Prilosec (sp?) to see if that will help. Until she does eat on her own she will continue to be tube fed, and will not be able to go home.

4/10/2008: (9PM) Kaylee was taken off of the oxygen today. She fluxuates on her levels due to the hole the surgeon had to leave in her heart, but her numbers on an average are good. In the long term they will hopefully be able to completely close the hole, most likely during her next open heart surgery around age 3 or 4 (we hope). She is still ot feeding well, although she did put down two small bottles without needing the feeding tube this evening. She will now need to prove she can gain weight and maintain good vitals before we can leave. Her potassium and other blood work is also getting better. Methadone spans 8hrs now up from 6hrs. We have been told to expect to be released early next week.

4/09/2008: (9PM) Not a whole lot of progress today. Michelle was able to get Kaylee to take two 45cc bottles successfully(this is good). The doctors performed some tests, and will perform more tomorrow. They are not happy with a blood draw where she was high on potassiem, and low on sodium. Funny thing is they drew the test after giving her potassiem suppliments, which she has coincidentally been given since her surgery.? She will be stuck again as a follow up to see where she is after not having the potassium suppliments for a while. They have not reduced Kaylee's oxygen yet unfortunately, although she is so close to being off of it. She is on 3/4 litre. She was originally placed on 2 litre and we seem to have hit a bit of a stalemate for awhile here at 3/4 litre. The surgeon thinks Monday/Tuesday to come home, the nurses think this weekend. Hope the nurses are correct.

4/08/2008: (9PM) Two weeks in the hospital today. On our two week anniversary here we were moved to the floor. This is our next step to going home. Our goals here will be to get her off of the oxygen suppliment, off of the methadone, and to get her to feed. She is not feeding well yet (about 20cc by mouth, and the remainder has to go in by tube 30cc). Her oxygen is at 1 litre or about 25 percent (normal room air is about 22 percent) We have been told we will be here for three more days at a minimum. The goal is to have her cath lab dialation (spelling?) in 3 or 4 weeks. The collateral artery surgery will be determined at that time, but they think about 3 months from now. Hopefully she hits all her marks in the next few days.

4/07/2008: (10pm) Not too much happened today. We spent the day trying to get Kaylee to feed from the bottle which she has not really done since last night. Her feeding tube is back in until she figures it out. We also found out she does not have the 22Q11 deletion syndrome. This is something we have been worried about since it goes hand in hand with the Tetrology-Pa problem. Tonight our nurse will focus on trying to get Kaylee to bottle feed and reduce her oxygen suppliment. We will be moved out of ICU tomorrow and will be on the floor. With any luck we will be home soon. Our fingers are crossed.

4/06/2008: (8pm) Well we are having a very good day so far today. We were successful with removing the breathing tubes at about 4:00 this aftenoon. Surprisingly, Kaylee is actually doing better without the breathing machine then she did with it. With some limited oxygen (28 percent) she is currently saturating her blood above 95 percent. As a matter of fact, as I write this she is in her mother's arms very content registering 100 percent. We are down to just 3 iv's and are able to hold her (obviously). There is talk we may be headed to the floor soon... that means out of icu... We will see what our next steps will be surgicly speaking, tomorrow, but for now we are all very happy. (11pm) Kaylee successfully drank from a bottle again, about 1oz, but this is good as feeding can become a problem for kids after these types of surgeries. She is still on iv fluids, and the nurses will continue to try to feed her throughout the night. We have been told by nurse Stephanie that she called dibbs on at least one feeding. Kaylee really likes nurse Stephanie, as do we.

4/05/2008: (9pm) Kaylee spent considerable amounts of time awake today. She is not quite all there due to the drugs, but it is great to see her animated. The doctors performed a trial today where they allowed her to take her own breaths while only providing pressure and oxygen assistence. She did pretty well, but they feel she is still retaining fluid in her lungs which they would like reduced before she has the breathing tube removed. They are hopeful that she will shed the water tonight, and possibly remove the breathing tube tomorrow. I am eager to see how she reacts, and what the doctors have to say about our next steps will be. Oh yeah, Kaylee turned 4 weeks old today.

4/04/2008: (9pm) Kaylee had her last two chest tubes removed this morning. Pretty happy about that. She is also having her morphine reduced, and is getting some iv injections of methadone. This is all in the interest of taking her off of the pain meds. She began feeding through a feeding tube today, and appears to be accepting it. She has been able to produce stools so her system is kicking back into gear. The surgeon (Doctor Basha) is pleased still with her progress, and suggested trying to removethe breathing tube as early as Sunday. She is on minimal help right now as it is, so we are hopeful. If the tube comes out on Sunday, she might be ableto start to bottle feed Tuesday-ish. We still do not know if she will be taking a trip to the cath lab, i guess we will find that out when she is taken off of all of the machines and functions on her own. Probably the best part of today is that Kaylee is spending periods of time awake which is so comforting to see after having her unconscious for over a week.

4/03/2008: (10pm) Had the lung scan explained to us today and we now understand what it means. I don't quite understand to the point of explaining though. Basically she is not recieveing the distribution of blood to the lungs that most people do. The upside is she is not terrably bad where she is, and they know why there is an uneven distribution. There are many factors at play, though the one variable that can really make a difference in balancing her system is to shed fluids. (pee) She had an echo performed today that told them pretty much things they already knew, and that is her pulmonary arteries are on the severe side of small. This will require dialation, which will be done in the cath lab in about 5 weeks from today (6weeks post op). On a very bright note, she is off of the paralitic (spelling is not my strong suit). This made our baby come back to life making small movements, starting to take some breaths on her own and even opened her eyes a few times. She will be tweaked for the next few days to ween her from the breathing machine. They will also hopefully be removing the two remaining chest tubes soon. She had one tube removed today. (phone again)

4/2/2008: (11pm) Doctors had some concerns with Kaylee's lungs today and brought her in for a blood flow perfusion test. They injected some dye into an iv and watched where it flowed throughout her lungs. The results are in, and I am not entirely sure what they mean yet. I hope to get clarification from our doctor tomorrow. Today Kaylee was switched from one sedative fentanel, to morphine. (don't kill me on the spelling please). This is a further step to their waking her. It seems they will try to wake her tomorrow morning in stages and see how she does. With any luck they may remove the chest tubes from her as well. This will make mom and dad happy as these are more things that are really not very much fun to look at. Every day seems to be a try and see type thing, and no real concrete final answer in terms of her ultimate game plan. We have been told that is the nature of the beast with her partictular situation, it just happens to be pretty frustrating. We have our fingers crossed for an awake baby tomorrow...

4/01/2008: (7pm) Kaylee had her chest closed this afternoon. She did very well with the procedure. The doctors are pleased, alhough will be monitoring her closely for 12 hours. We have been told we can expect to be in the icu for the next week at least while they try to get her to breathe on her own. It is a watch and see game right now to see how she is gong to make out with her arteries as they are now. Before we leave they will be doing cath work to see how things look. She may or may not need to have some vessle expasion. No matter what they expect to have to expand some vessels in the next few months, but that decision will be made as more data comes in. Kaylee will also need another surgery to attach the other collateral vessle, the doctors will decide when that will happen when more data comes in. they are hoping to wait a fewmonths so she can recover from this. (phone again)

3/31/2008: (9pm) Tomorrow marks our 1 week mark here at Childrens. Tomorrow is also the day the doctors are planning on putting Kaylee's chest back together and closing it up. This will be nice as it will reduce the cance of infection and will be a pretty significant move foreward. (not to mention it is not at all fun to look at). The closing of the chest will make the heart and lungs upset as they will be constricted further than they are with an open chest. This will require more support for a day or so until they get used to their normal space. I am unsure what our next step/surgeries will be. I am hopeful for a consult with our doctor tomorrow or wednesday. Kaylee is doing well as it stands right now. (phone again)

3/30/2008: (9pm) Kaylee's swelling has gone down considerably today. She is noticably less puffy. They have taken kaylee off of one of her blood pressure iv's epineherine. she is still on another iv for blood pressure but now it is just one. (although she is stil on about 12 other iv's that I am not sure the purposes of) one thing at a time i guess... Her breathing rate has been reduced to a normal rate, and her oxygen input reduced to about twice normal room air (40%) down from a high of 100%. her pressures, blood gasses and oxygen saturation have been good. She still has a way to go before they will close her chest, but they will evaluate her progress tomorrow morning during the rounds. It will be interesting to know her progress by then. (updated by phone again)

3/29/2008: (9pm) The doctors have removed the nitric oxide completely from Kaylee's breathing machine. This is an encouraging step. Kalee's kidneys have been putting out good urine today which is good, but pose a bit of a challange with the medications, as removing fluid from the blood apparently can play with blood pressure, lowered blood pressure can make the body retain fluid and stop urine production, constrict the pockets in the lungs requireing more oxygen etc. etc. etc. They are currently tweaking all of her various variables to get her to shed the retained water, reduce the swelling and maintain healthy pressures and blood gas levels. It is their hope to get her to a point where they can put her chest back together monday or tuesday. still stressful stuff, i am cautiously optimistic that we are making progress. (again updating by phone sorry about he spelling...)

3/28/2008: (10pm) Kaylee is still being monitored. they have been reducing some of the breathing machine settings to see how she will react. She was doig pretty well until about an hour ago when it appears they went a bit beyond her comfort zone on breaths per minute and on the nitric setting (nitric helps open the pulmonay arteries). They found that her pulmonary artery pressure went too high, and dioxide levels in the blood went high as well and they re-adjusted them back a bit. When questioned they told me she must need more time. On another watch list is her pee, she is not generating much pee and they would like for her to. So it seems we will be waiting and watching and tweaking with the hopes of getting her to operate nicely with no mechanical support. As a foot note she does still have her chest open as she has not completely reduced pressure, and there is still fluid in the chest cavity. The surgeon is on a watch and wait approach there as well. (again this was done on my phone so sorry about my poor spelling)

3/27/2008: (10pm) Kaylee made it out of an extremely complex surgery this afternoon. We did not receive the best of news as her pulminary arteries, and one of her colateral arteries, are smaller than they anticipated. We do not really have a handle on what that means for her right now other than it is not as good a situation as we had hoped. She will require more surgeries, and cath work at a minimum. As of right now she is recovering and under close watch for 48 hrs post op. She is being kept unconsious , paralized and on a breathing machine until they feel she has stabelized. (sorry for any spelling errors i am doing this from my phone again)

3/27/2008: (11am) kaylee was taken to Childrens hospital on Tuesday directly from her doctors office (atually she spent some time in the Elliott hospital Icu while awaiting transport) in Manchester. A team of specialists came up to take her down as her oxygen levels had dipped into the 50-60 percent range. (average people live in the 97-100 percent area) Due to this her surgery was bumped up to today Thursday. As I write this she is being worked on by the best, we are nervously awaiting word on her progress. sorry if the format looks strange, i am trying to update the website wit my phone... not too sure how it will turn out...

3/14/2008 We did end up coming home last night. Kaylee is very happy not being starved, stuck and prodded, rather fed and loved. She did very well with the car trip home and is eating, (and the other), every 2-3 hours. She will be going in for her corrective open heart surgery on the 14th of April. It seems the doctors have all of the information they need, and with any “luck” she should be in great shape post-op. Thank you to everyone who thought of our little Kaylee throughout this and going foreword.

3/13/2008 We just met with one of neurologists regarding the CAT scan. He said the results look favorable. Her major vessels in the brain look to be good. The doctor we met with does not seem to think there will be any developmental disorders associated with the areas that were damaged. It is good to note, that we would not have known any of this had we not participated in a voluntary brain research project which Michelle really pushed for. Thank god we did… Well as I was typing, our cardiologist and another cardiologist stopped by. They are happy with the scan as well and feel she should be ok. Because of the findings we will definitely be pushing the surgery out about 3 weeks, although the VERY good news is we could be released as early as tonight. We will be waiting to see what the anesthesiologist thinks as she is only hours from her last sedation. I want people to know that if we do go home, we will most likely not want people to swing by. Not that we do not want to see people, but we will be trying to keep her from coming in contact with any germs between now and the surgery.

3/12/2008 MRI results back, no other blood clots found, although they did find a small area of bleeding in the brain. We are hoping this is from the blood thinners used in the cath procedure. The doctors are concerned enough to get a CAT scan performed to see the brain’s blood flow and make sure this is an isolated incident and not an abnormality in the brain. SO again we have some answers and more questions, more tests.

3/11/2008 Kaylee was moved out of ICU today as the doctors have found her to be stable enough to be more loosely monitored. We received some feedback from the cath lab, which is pretty favorable. It seems she has her pulmonary arteries, in addition to the collateral arteries we knew about prenatally. These arteries are there, although not connected to the heart where they should be. With these pulmonary arteries present, the doctors should be able to connect them where they are intended to go. Doctors are planning on keeping some of the collateral arteries in place after the surgery to ensure all areas of the lungs are receiving blood flow. We also found out some results from the post natal MRI. The doctors found that Kaylee suffered a blood clot (stroke) in a part of her brain during labor. She was very squirmy during the MRI so the doctors can not tell if there is damage in other areas of the brain. They will be performing another MRI in the morning to better define if she has further damage. Due to the stroke, the doctors will be delaying the surgery a few weeks as surgery requires blood thinners, and people who have experienced strokes recently should not be on blood thinners. More information should follow after her test tomorrow.

3/10/2008 Kaylee spent the afternoon in the cath lab. This is a test where doctors insert probes through a vein and an artery in her groin and thread them into her heart. They did this to check the available collateral arteries to the lungs. This is to determine how, and when her actual heart surgery will go. While in there, they found a redundant artery and closed that off. We have been told that Kaylee will most likely be having her surgery sooner than later. We are waiting on the doctors to find out the final decision.

3/09/2008 Kaylee was welcomed into the world after about 20 hours of labor on her moms part. At the time of her birth we had a very large team of people who were there for both her and mom. She was immediately whisked away with dad to the ICU at Brighams hospital, then to Children’s where she is now. She was put through a series of tests and is now awaiting results. She is functioning on her own, and looks good. We hope to hear when and how the first surgery will be performed. We expect these answers Monday morning.