Decorating for Christmas

Today we put up our Christmas tree and decorated for Christmas. This was kind of exciting because last year we were in the hospital most of the month of December (Dec. 3-20) so we didn't get a chance to decorate. Ashlyn enjoyed putting ornaments on the tree -- she had a system: she tried to always match the color of the ornament with a colored light on the tree. It was funny to watch because she was so serious about it. Lynnea thought the Christmas tree was pretty great. She laughed and laughed when she saw me putting a tree up in her house. She has a fascination with trees in general, so having one in her house is pretty exciting. The only issue we had with all of this decorating was trying to convince Ashlyn that, once we were done hanging the ornaments on the tree, they needed to stay on the tree, they aren't for her to take off and play with. She's having a tough time with the concept, but I'm sure she'll figure it out eventually.

Happy Thanksgiving!

We have many things to be thankful for this year. I am especially thankful that this year Lynnea was not in the hospital for Thanksgiving and we were able to celebrate it together as a family. I am thankful for my entire family, especially my two beautiful, amazing little girls. I am also incredibly thankful that Corey finally found a new job. As a family, we are all very thankful for everyone that has supported us through all of the challenges this past year, and continue to support us through the challenges that are ahead.

Mundane Cardiology Visit

Lynnea had another cardiology appointment this morning. According to Dr. Gruenstein, her echo today looked OK. For now the plan is to wait a couple more weeks, then do another heart catherization to see if her pulmonary veins are continuing to close, or if they are finally beginning to improve; from there we will plan the next surgery...for now the plan is to hopefully put it off until sometime after Christmas.

Celebrating Lynnea's Baptism

A little over a year ago, on November 7, 2008, we brought Lynnea to the Emergency Room at the hospital in Princeton, and it quickly became apparent that the belief was that she would not live through the night. At that time, we chose to have her baptised in the hospital. Even though baptism is always a special event that is worth celebrating, that night the celebration of her baptism was the farthest thing from our minds as we watched her struggle to stay alive. Today we were able to bring Lynnea to church to reaffirm her baptism, and to celebrate her new birth in Christ the way that it deserves to be celebrated. She behaved like a typical one-year-old through the church service -- she played peek-a-boo with people sitting behind her, she dropped all of her toys on the floor hoping that we would pick them up for her, and she played "pass the baby" during the prayer. We hope that eventually she will learn how to worship in a more appropriate manner, but today we were just happy that she wasn't too frightened by all of the strangers around her. Thank you to everyone that has kept Lynnea in your prayers over this past year, and for continuing to pray for her as we anticipate more medical challenges to come.

No Tears!

Since birth, Lynnea has not been particularly fond of bath time. She typically screams through the whole thing, turning several shades of blue and purple because she gets herself so worked up. Well, tonight Ashlyn and Lynnea had bath time together; this isn't the first time we've tried this, but it is the first time that Lynnea seemed to actually enjoy it. They played nicely together in the tub for nearly ten minutes before Ashlyn decided that it was time for her to wash Lynnea. Even this went OK at first, but then Ashlyn decided to dump water all over Lynnea's face, and Lynnea got mad at her. We're still just really happy at the progress that Lynnea is making tolerating baths, and we look forward to being able to bathe the girls together more often.

Well-Child Check-Up

Lynnea went to see her pediatrician today for her 12-month well-child visit. I always think that it's ironic to bring her in for "well-child check-ups" because, obviously, she's not really a well child. Anyway, she's now completely caught up with all of her immunizations, which is a good thing for her, even though she absolutely hated going to the doctor to get poked again.

Medically speaking, she's doing OK for the moment (still waiting for a surgical plan, but again, we're not really expecting to get a plan until after next Monday's cardiology appointment), but she's having some sleep issues. Or, rather, she's causing me to have some sleep issues. The problem is that she has decided that Mommy is supposed to stand next to her crib all night. She falls asleep, and I am able to sneak out of the room, but she periodically (at least once per hour) decides to open her eyes and look around to make sure I'm still in the room; if I'm not there, she cries. When I come in to calm her down, I don't have to actually do anything -- she doesn't want to be picked up, she doesn't need me to rub her back, or sing to her, or anything -- she just wants me to stand there. Unfortunately, since I haven't mastered the art of sleeping standing up, this has been a bit problematic. If she were a normal, healthy child, I would let her cry herself back to sleep, but with her, that's not really an option. So, until we somehow manage to convince her to turn her "Mommy Radar" off at night, I guess I'll have to live with being completely sleep deprived.

Home Sweet Home

Lynnea was discharged again this morning. She was taken off from all oxygen support during the night last night, and has done OK breathing on her own. Her lungs still sound a little wheezy, a little crackly, and up until an hour ago (after we gave her a PRN dose of Lasix, an extra diuretic that we have around for special occasions) a little "wet." But these are all things that our home-care nurse and I feel OK dealing with, so the doctors were all OK with sending us home. Her blood-oxygen saturations have been good, and her heart rate is back down to normal. She's really grumpy -- my suspicion is that she's going through a bit of withdrawal after being on so many sedatives (24 hours of high doses of Fentanyl will do that to a person), so I won't be surprised if we have a rough night. Hopefully she'll be in a better mood tomorrow.

So, for the short-term, she's doing fine. This morning the cardiology team discussed her longer-term situation in their weekly conference. Essentially, they came to the consensus that she needs more surgery relatively soon, but they don't know exactly what or when. She is out growing her B-T shunt, which in turn, is limiting the amount of blood flow to her lungs. This is a bad thing. The options that they are considering are replacing her B-T shunt with a bigger one, or possibly doing half of the Glenn procedure (yeah, I didn't realize you could do have of that operation either). There was also much discussion about her aorta, and whether or not it deserves some attention right now; the debate is still raging. She has two or three areas that appear to be a bit narrow, but none of them are really bad enough to warrant more surgery right now; the fear is that the cumulative effect of them is enough to overwork her right ventricle, and thus would be worth trying to repair soon. When I asked what kind of time frame we are looking at for surgery, I was told 2-4 weeks, but realistically, we're probably looking at surgery in early December. I will give more details when I learn more.

Once Again, "Impressive"

At one point last spring when Lynnea was in the hospital during her really long stay, the cardiology team had made a comment about her being "unusual and impressive," and I wrote about this in one of my blog posts. Well, yet again, the word "impressive" is being thrown around, and I have come to understand that when doctors use the word "impressive" they are really using it as a euphemism for bad things. Yesterday during evening rounds, Chuck (Dr. Shepherd, one of the Cardiology Fellows) told me that on the preliminary C-T scan results he "hadn't noticed anything impressive about Lynnea's aorta" meaning that it might not be as bad as Dr. Gruenstein had thought. This morning during rounds, the doctors all decided that Lynnea had bought herself another night in the PICU because of "how impressive she was after extubation yesterday." Yes, last night they took Lynnea off the ventilator around 5pm, and it didn't go very well (but, in some ways, we've kind of come to expect stuff like this from her -- Lynnea doesn't like to do things the easy way). She had a very difficult time breathing on her own, and nearly had to be re-intubated; fortunately, after a few different nebulizer treatments, some IV steroids, and giving her a helium/oxygen blend through a high-flow nasal cannula, she managed to avoid being put back on the ventilator. She had us all a bit worried during this time; I've been around long enough to know that when they start moving extra items in the room (like rocking chairs) out into the hallway, and begin bringing extra carts (like the emergency intubation cart, and the crash cart) into the room, things are not going well. Because of this little incident, there was really no chance of going home today, but since she has done pretty well today (she was taken off the helium/oxygen blend this morning, and we've managed to wean her high-flow steadily throughout the day) there is some talk of possibly going home tomorrow, and at the very least, if they decide not to send us home tomorrow she should be able to move out of the PICU to the general floor. She will be a topic of discussion at the weekly cardiology conference tomorrow morning to decide whether or not she needs any surgery in the near future.

Hospital Time

Due to communication deficits here at the hospital, Lynnea will not be going home today, but hopefully she will make it home tomorrow morning. The C-T scan that was supposed to happen first thing this morning (yesterday we were told that it was scheduled for 7:15am) didn't happen until 10:45am. During morning rounds, I asked whether or not anyone had ordered, or was going to order, a lung profusion scan, and everyone just kind of looked at me like they've never heard of such a thing, then after some discussion, Dr. Kochillas (attending cardiologist this week) said that he thought it would be a good idea to do one while she is still sedated (and intubated...and for the record, keeping her sedated gets harder by the minute). Well, even though Dr. Kochillas thought she should have a lung profusion scan, no one ever bothered to put an order in for it. So, after her C-T scan, I asked again when she was going to have her lung profusion scan, and was told that "one wasn't ordered, so they must have decided she doesn't need it." After demanding that they double check this with cardiology (and, if they said they didn't want one, I wanted a specific reason for not doing it) an order was placed, but the soonest that she could get one was 3:00pm (again, keep in mind that she during this entire time she is still intubated and sedated, with so much sedation on board that her blood pressures started dropping -- for a while they were sitting as low as 50's over 20's). Lynnea didn't actually leave to go for her scan until 3:30pm, again due to some communication issues. Hopefully as soon as she gets back from her scan, they will allow her to wake up and then promptly extubate her. Because it is so late in the day, they want to hold her in the PICU overnight to make sure she does fine after they take her off the ventilator. They also need to re-start her feedings to make sure she is tolerating them. The good news for the day is that her temperature has returned to normal and has remained normal all day.

Today's Heart Catherization

Lynnea made it through yet another heart catherization without any problems during the cath itself, though she did spike a fever afterwards, and no one is really sure why. I'm not sure if she is still running a fever (it was still above her normal temp the last time the nurses checked, but "technically" it wasn't a fever -- probably because she was given Tylenol; we'll see what it is after the Tylenol wears off).

The first issue of concern was her pulmonary vein stenosis. For the past week and a half, or so, at home, Lynnea's sat's have been a bit low, her heart rate has been high, she has been wheezing (and has not really been clearing after her nebulizer treatments), she gets sweaty even when she's not upset, and she hasn't been tolerating her feeds as well as usual. These symptoms typically point to some sort of a cardiac problem, and these are all symptoms that we have seen a few weeks after each of her cutting balloon dilations, so it was no surprise that her pulmonary vein, once again, had narrowed and needed to be ballooned open again. This is the third time that Dr. Gruenstein has performed the experimental cutting balloon dilation on Lynnea. Prior to the first dilation, her vein had narrowed to 1 millimeter; after the first dilation, it opened up to 3.5 mm. One month later when she had the second dilation, her vein had narrowed back down to 2.4 mm, and after the second dilation it opened up to 3.5 mm again. Today her pulmonary vein had narrowed down to 2 mm, and after the dilation it only opened up to 3 mm. So, Dr. Gruenstein isn't sure if this is really working, considering that we don't seem to be making much progress. He's not willing to give up on it yet -- the cardiologist in Cleveland who has done this on three or four other patients warned that it typically takes three or four times before any real progress is seen. So, Dr. Gruenstein plans on trying at least one more time before giving up on this process.

The second issue of concern was her aorta. The spot that was stented during her last cath still looked pretty good, though Gruenstein attempted to open it up a little bit further by sending a balloon through it. The real concern was an area near the stent that had narrowed since last time, and because of its location, cannot be ballooned or stented open. To tell how bad narrowing is in the aorta, they measure the gradient of blood flow through it. A high gradient is bad, a low gradient is good. Prior to stenting last cath, the gradient across the narrowed area was 40. After stenting, it was 10, which is good. Today the gradient through the stent was still 10, but the area near the stent was up to 40. Dr. Gruenstein feels that, because he can't balloon or stent the spot that is narrow, she will probably need more surgery to repair it sometime in the near future (he was pretty vague about when he thought this would need to be done, and when I talked to Dr. St. Louis briefly in the hallway today, he hadn't had a chance to look at the cath results yet).

The third issue was her B-T shunt. Just like last month, Dr. Gruenstein feels she is outgrowing it and it needs to be replaced. Again, we're hoping that Dr. St. Louis will be able to replace it and address the issues with the aorta at the same time.

Due to the concern about the aorta, Lynnea is scheduled to have a CT scan in the morning to get an even better picture of things. Because of this, the doctors decided to keep her intubated and sedated until morning. As has become the pattern with Lynnea, keeping her sedated has been a challenge. She has built up a bit of tolerance to many of the sedatives that they give her, and manages to wake up even after she has been given significant doses of medication. Since Fentanyl, and Versed were having very little effect on her (she was awake and trying to sit up despite the several boluses of each she had been given), she was switched to Ativan, which so far seems to be doing the trick. Hopefully she will have a peaceful night, and be able to go home sometime tomorrow.

Making Potato Soup

Yesterday, Ashlyn, Lynnea, nurse Michelle, and I made potato soup for supper. Lynnea enjoyed sitting in the middle of the kitchen floor playing with two potatoes that we gave her. She would hand one to me, and one to Michelle, and then want them both back again. She thought this was a really fun game. Ashlyn helped wash the potatoes, and then helped stir the soup, and tasted it to make sure that it was good. It was fun to have a "normal" day cooking with my two little girls.

Home Until Next Tuesday (Hopefully)

Today we played the all too common "to discharge, or not to discharge" game all day, and this evening they finally decided to send us home. Lynnea's triponin levels that they checked last night still looked fine, and she seems to be in stable condition, so the cardiology team felt that it was fine for us to go home for now. She has another heart catherization scheduled for next Tuesday...I don't have an exact time, but she is scheduled as the second case of the day (so probably late morning). The doctors feel that the most likely cause of her extra high hemoglobin levels is her narrow pulmonary vein. The narrowing of her pulmonary vein causes her blood-oxygen saturation levels to dip even lower than her usual, which makes her body think that it should try to compensate by producing more red blood cells, which contain hemoglobin. Hemoglobin is the part of the blood that carries the oxygen, so more hemoglobin should mean higher sat's. Unfortunately, in Lynnea's case, this doesn't really bring her sat's up, and it can cause extra problems because more red blood cells means thicker blood, which is more likely to clot off her B-T shunt (this is why she takes daily aspirin as a blood thinner). Hopefully, another heart catherization which will include another cutting balloon dilation should open up the pulmonary vein enough so that her body stops producing extra red blood cells, and her hemoglobin levels should return to normal. If her hemoglobin remains high after the cath, they will look at other options, including changing some of her medications (most likely increasing her aspirin, or adding an additional blood thinner).

Back at Our Home Away from Home

This morning Lynnea had an echocardiogram and appointment with her cardiologist, Dr. Gruenstein. After looking at her echo results, Dr. Gruenstein "didn't like what he saw" and decided to admit us to the hospital again to run a few more tests. Lynnea had a chest X-ray, an EKG, and some lab work done. During afternoon rounds, there was some debate about whether, or not, Lynnea's echo really showed a decline in heart function, and increase in her tricuspid valve regurgitation (this is not a new problem, and often varies in severity, which is generally a pretty good indicator of early heart failure for her). Dr. Pyles, the attending cardiologist this week, and Dr. Bass, head of the cardiology department disagree on the echo results, but the both feel that her EKG from today actually looked a little bit better than the last EKG that she had done. Her lab work showed that her hemoglobin is higher than normal (her levels always run a little on the high side, but today's results were high even for her) which the doctors can't explain. It also showed that her triponin levels were normal, which is a sign that she is not in heart failure. She had more labs drawn this evening, again to check her triponin levels, just to make sure that the earlier results were accurate. I haven't heard the results of her chest X-ray. For now, the plan is to keep her here overnight to continue to monitor her, and if she seems to be remaining stable, and doesn't have any unforeseen issues, they might discharge her tomorrow.