One Month and Counting

We have now been here in the hospital for an entire month, and since nothing has really changed with Lynnea's condition since my last post, we still have no idea how much longer we will have to stay. For the record, Lynnea's lifetime totals are now: 81 hospital days, 33 at home days. In the spirit of trying to stay positive about everything, I have come up with a few good things about spending so much time here (no, it's not another top 10 list because I wasn't able to come up with ten things). First of all, I seem to have pretty much missed out on most of winter, and I have to admit that I'm not at all disappointed about this. I hate winter driving, and so far this year, I haven't done any, so that's something to be happy about. Plus, I just don't like cold weather in general, and hanging out in the hospital has certainly cut down on the number of times that I have had to go in and out of the cold. Next, even though I am so tired of hospital food that I rarely find anything that really seems worth eating anymore, I have to say that not having to do the dishes after meals is a definite perk. Last, because of all of the free time I've had on my hands lately, I have finally been able to not only watch the entire TV series Farscape on DVD (again. . . and if you want to get technical, I still have two episodes left, plus the mini-series), but this time I was also able to watch all of the DVD extras that I've never had time for before. I am now a complete Farscape expert. Too bad the show only ran for four seasons, and hardly anyone has ever heard of it, so now my head is just crammed with even more useless trivia.

Trying to Stay Positive

Lynnea's fever went up yet again today, so again, blood and urine cultures are being done. The doctors also decided to put her back on Digoxin. Digoxin is a drug that is used to help heart function, specifically, to help the heart pump more efficiently. Lynnea was on Digoxin before this surgery, but I think that the doctors were hoping to avoid putting her on it again.

Lynnea did manage to give out a few smiles to people today, which is always a nice thing to see. Also, the doctors have decided to try switching her from a continuous feed through her G-tube to a more normal feeding schedule (but it will still all be through her G-tube for now; hopefully though, at some point, we will begin attempting bottle feedings again).

Nothing Exciting

Still nothing has really changed as far as Lynnea's condition goes. She's still not stable enough to be moved to the floor -- the main concerns are still her fever and low saturation levels. All of the cultures that were taken the other day have come back negative so far, so they still have absolutely no idea why she keeps running a fever. She had another echocardiogram today because they were concerned that maybe some of her symptoms (fluid retention, sweating, and the low saturations) could be due to poor heart function (which I've been worried about all week). Everything looked the same as it did on her last echo that she had two weeks ago, which is good news, but still doesn't provide any real answers about the cause of her symptoms. Not knowing the cause makes it very hard to know how to treat them. The doctors don't expect us to get to go home any time soon.

Not Getting Better

Lynnea's fever was higher today than it has been the past few days. Again, blood cultures were done, along with urine cultures, and this time they are also running cultures looking for fungal infections. Hopefully the doctors will find the cause of Lynnea's fever soon. The good news for the day is that Lynnea actually tolerated her Physical Therapy and Occupational Therapy better than expected. The doctors increased the diuretics that Lynnea is on because she is still retaining more fluids than they would like, and they increased the amount of blood pressure medication she is on because her blood pressure has been higher than they would like lately.

Still Nothing New

Lynnea is still in the PICU, and not much has changed. She's still running a fever sometimes. Her saturations were pretty good today, with only a little bit of oxygen needed. She is now receiving help from an Occupational Therapist to help encourage her to do some "normal" baby things like track an object as it moves in front of her, grasp at objects when placed in her hand, and move her arms around more, especially encouraging mid-line play. She will also be getting some Physical Therapy while she is here in the hospital (and they'll do a lot of the same things as OT).

No Answers

Lynnea's temperature was a little lower today, which is good news. Her saturation levels varied greatly throughout the day, which is very frustrating. No one seems to have any real explanation for this -- as always, chest x-rays were taken, but showed nothing new. On a positive note though, throughout most of the day, she required less oxygen than she has the past few days overall. Unfortunately, she has been retaining a lot of fluids, so they cut back on the amount that they are feeding her, hoping that this, in combination with the new diuretic that she is on, will help solve that problem.

The Fever Returns

Last night Lynnea's fever returned, and she has had a fever all day, so more cultures were taken. She also needed more oxygen today than the past day or so in order to keep her saturation levels up.

Higher Saturations

Lynnea managed to keep her saturation levels higher today than they have been the past few days; unfortunately, she still seems to need to be on some oxygen to keep them up. Her temperature was a little lower today, so maybe she is getting past her infections. She continues to struggle with symptoms of withdrawal.

Another Day at the Hospital

Today Lynnea received a blood transfusion because her hemoglobin levels were low. This seemed to help her keep her saturation levels up a little bit higher than they have been during the past few days, which is a good thing. Other than that, not much else is new today. She's still running a fever. They still don't know why. The rapid results for her viral scan are all coming back negative. If Lynnea would keep her saturations up, we could move over to 5A, but until then we're still stuck here in the PICU.

I am adding to Tina's post. While sitting next to her I found a poem someone had left sitting on a table. Reading it really hit the soft part of the heart for us. We have become so numb to all of this it was weird finding something that actualy hit that spot. It is posted on the sidebar there for everyone to read and not get lost in our daily posting. It seems to convey the feelings we have become so used to ignoring.

PICC Line

Lynnea successfully received her PICC line this morning. It took longer to put in than originally anticipated, but in the end, all seemed to go well. Her saturations have been low all day, but the cardiologists don't seem too concerned about it (I'm beginning to wonder at what point they will become concerned). She's still running a fever. They decided to do a viral scan to check for influenza and RSV, even though she doesn't have any symptoms of any sort of upper respiratory infection. This means that she will be in an isolation room for the time being, which is not really a big deal.