4 Months Old

Lynnea is now 4 months old. Her weight today was 11 lbs. but some of that is water weight because she's been retaining fluids again. They changed her diuretics from every 6 hours to every 4 hours to help with that. This afternoon her nasal cannula kept coming off, so finally the nurse just left it off to see how her saturations were without it, and when the doctors did rounds this afternoon they said she could keep it off as long as her saturations remained OK. So far it has stayed off, which is really nice because she absolutely hates having it on. She had a chest x-ray this morning, and her lungs looked "wet" again. This concerns the doctors, but other than increasing her diuretics, there's not a whole lot they can do about it right now. They also decided this morning that they want her to run a 6 week course of antibiotics; she has been on one consistently for about 2 1/2 weeks now, so the plan right now is to just keep her on it for another 3 1/2 weeks. Unfortunately, that means that we will be in the hospital at least that much longer because, even if she would stabilize enough to take home, the antibiotic needs to be given through an IV (in this case her PICC line) and I refuse to go home with any IV lines in. I can handle her feeding tube, and I could handle her needing to be on oxygen at home if absolutely necessary, but I have to draw the line at IV's. So, we're staying in the hospital for the full course. Other than that, not a whole lot has changed since yesterday; she's still running a fever, and this morning she had a long coughing/gagging fit and had to be suctioned again.

Being Suctioned is No Fun

For the most part, Lynnea didn't have any major changes today: still running a fever, still dropping her saturations pretty regularly. Unfortunately, she did need to be suctioned out more frequently than usual today because she appeared to be choking on her own spit. She thinks that this is an absolutely horrible thing to experience, and it takes the nurses who suction her a long time to make friends with her again. She gives them the evil eye whenever they come near her until they do something great (like giving her Sweet-Ease, aka sugar water) to win her over again.

Another Thursday

Thursday is Bingo day at the hospital, and it turns out that Lynnea is a stellar Bingo player. Actually, this is nothing new; she wins at Bingo every week, even when I'm not around to help her play. I had every intention of playing today, but I was eating lunch and chatting with another mom and completely forgot that I was going to play Bingo. Fortunately, Lynnea's nurse was kind enough to help Lynnea out and mark the Bingo card for her, so she won her weekly stuffed animal. She has quite the collection of little stuffed animals now.

Anyway, there was absolutely no change in Lynnea's condition again today. And, because of the snow, Ashlyn didn't come to visit today, so overall, it was a very boring day.

Out and About

The most exciting part of my day was taking a walk with Corey. Lynnea's nurse told me that I couldn't hold Lynnea again until I actually spent some time outside of the building, so we went for a walk. Yes, I know it's kind of sad when the nurses have to order me to leave the hospital for my own sanity, but it's so hard to leave. Anyway, not a whole lot new with Lynnea today. She smiled at me, which is always great. She also has her wound-vac on again; she had one on very briefly a week or two ago, but they couldn't get it to stay on the way it is supposed to, so at the time they discontinued it. Hopefully it will help her chest wound finally begin to heal the way that it should. The belief is still that her wound is the most likely source of her infection (despite negative cultures), so if they can get it to heal properly, maybe her fever will go down. They also started her on another antibiotic (in addition to the wide coverage one that she's been on for the past two weeks). This one is also an antifungal, so they are hoping that if there is any sort of fungal infection that may not have shown up on the cultures is will go away. If her fever remains unchanged after a few days of being on this new medication, they will discontinue it because there's no sense in keeping her on drugs that aren't doing her any good. I talked to one of the doctors about her CT scan. For the most part, the narrowing of her aorta was about what they had expected, and doesn't require any immediate attention, though in the long run (after she stops running a fever) they still want to go in and do a heart catherization so that they can see exactly what's going on, and then they will probably try to push a balloon through the narrow area to open it up a little bit more.

I'm Going to Do Things My Way

I realized that it's been awhile since I've put any pictures of Lynnea up, so here are a couple from today. Yes, Lynnea is laying sideways in the bed, and yes, she positioned herself this way, despite the nurse's attempt to reposition her. She's kind of stubborn like that sometimes.
Anyway, not much new to report as far as her condition goes. Her fever was high again today, and her saturations were low. They finally decided that all of the tests that they have run over and over and over (chest x-rays, and blood cultures) aren't telling them anything useful, so they decided to do a CT scan of her heart and brain because they are afraid that there is still some narrowing of her aorta, and that there could be an infection in her brain. The preliminary results came back this evening, and the final results should arrive sometime within the next day or so. The preliminary results didn't show any problems with her brain, and confirmed that there is some narrowing of her aorta, but I haven't actually talked to any doctors yet to find out if the narrowing is more than they were expecting or not. Hopefully we'll have a few more answers tomorrow.

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.

Deja Vu

"Gee, Brain, what do you want to do tonight?"
"The same thing we do every night, Pinky. . . "

Lynnea's evening (specifically 9pm-11pm) is going the same as it does almost every night: her saturations drop into the 50's, a chest x-ray is taken, no dramatic changes or obvious explanations are found on the x-ray, the amount of oxygen she's getting is increased, and her saturations go up slightly so that everyone is satisfied once again. As always, tonight's x-ray provided no answers. Nothing else has really changed all day with Lynnea. She will *fingers crossed* get her PICC line tomorrow morning. Because she continues to run a fever, someone from Infectious Diseases came to look at her today, but nothing was decided about where to go from here to try to get rid of whatever infection(s) that she might have at the moment. Maybe someone will have more answers for us tomorrow.

Smiles

Today there was a Valentine's day party in the family room, so Ashlyn enjoyed decorating a piggy bank, and eating her heart shaped cookie. You can't really tell in the picture, but she has frosting all over her face.

Lynnea had some more snuggle time with Mom, and she even gave me a couple of great big smiles, which was pretty exciting. Medically speaking, she's about the same today as she has been for the past several days. Her doctors decided this morning that she should have a PICC line placed because her peripheral IV's keep infiltrating and there's really no where left to poke this poor child, and it is important for her to have a working IV in at all times -- she gets all of her antibiotics through her IV, and if there were to be any sort of emergency with her, they would need to have an IV already available. Well, PICC lines have to be placed in the OR, so at 1:45pm, Lynnea and I were sent down to Pre-Op. We sat there until 5:15pm when someone (I'm still not sure if it was the anesthesiologist, or the doctor who was going to place the line) decided that, because of the gaping wound in her chest (there is a hole at the bottom of her incision site that became infected) they were unwilling to place the PICC line at this time, so they sent us back upstairs to the PICU to "get the wound issue resolved." On our way upstairs, we ran into Dr. St. Louis, who seemed extremely irritated that she was coming back up without a PICC line, but when we asked to speak to a doctor about the plan for the rest of the day, the resident came in and told us that getting a PICC line isn't that important and we'll worry about it some other time. Again, we're a bit irritated with the lack of communication around here, but as always, there is absolutely nothing we can do about it. Perhaps tomorrow they will put a PICC line in for her.

Snuggle Time with Mommy

The highlight of the day was getting to finally hold my baby again. This was the first time that I have really been able to snuggle with her since her surgery. The doctors removed her chest tube this morning, which is nice. She continued to run a fever off and on throughout the day, and they started her on yet another antibiotic. So, basically, again nothing has really changed. But it was really nice to get to hold her, and hopefully I'll be able to hold her again tomorrow.

Hanging In There

Again, not much new with Lynnea today. She is still running a fever off and on. She still continues to struggle a bit with her breathing, and keeping her saturations up. Her chest tube is no longer draining anything, and her chest x-rays are not showing any more build up of fluid right now, so they might be able to remove her chest tube within the next day or so.

Waiting for Improvement

Today Dr. St. Louis again used a syringe to pull out extra fluid that's building up around Lynnea's lungs. This time he decided to put in a new chest tube to let it continue to drain. This seemed to help her breathing a little bit, but it still feels like a step backwards. She continues to run a low fever, and she's still on antibiotics.

Another Day in the ICU

Lynnea still struggles with breathing; today Dr. St. Louis used a syringe to pull out fluid that was gathering around Lynnea's lungs. He decided not to put her chest tube back in at this time, which was a good sign, but her chest x-rays continue to show problematic spots on her lungs, so they've gone back to "gently" thumping on her chest, and suctioning her frequently. She continued to run a low fever again today, and she struggles to keep her blood-oxygen saturations in the range that the doctors want them (this ties in with the problems with her lungs -- it's hard to keep saturations up if you can't breathe effectively). Maybe tomorrow things will start to get better.

Apple Spiders and Jelly Beans

Not much new with Lynnea today -- she continues to have a difficult time breathing, and at times her blood-oxygen saturation levels drop lower than they should. They did another echo on her because they are concerned about this; they are afraid that clots may be forming, so they switched back to an IV blood thinner to see if that will help. She also now has a "wound infection" (along with the blood infection that she's had for a few days now) in the site where one of her chest tubes used to be. They are giving her different antibiotics to try to kill off all of these infections.

Today when Ashlyn was visiting me here at the hospital, she was drinking her juice from her sippy cup, like usual. She handed it to me and I asked her what kind it was, so she told me that it was "apple spiders" (apple cider). I thought that was pretty funny. At dinner, we offered her some lima beans, which she's never had before, and she kept calling them jelly beans. She didn't like them (apparently, that's not what jelly beans are supposed to taste like).

"It's Touching Me"

Lynnea continues to struggle some with her breathing -- Dr. St. Louis had to put another stitch in where her chest tube used to be, which seemed to help her some. Most of the day she was not running a fever, which we were excited about, but this evening, she is running one again. Even though it is difficult as a mom to see her frustrated knowing that I can't help her, I couldn't help but laugh a little when I saw her earlier today trying desperately to get her nasal cannula out of her nose, giving me her "Mommy, it's touching me!" look. Lynnea has disliked anything touching her face pretty much since she was born, and she moves her head around, whines, and fidgets whenever anything is touching or rubbing against any part of her head, so to see her doing this today was reassuring that my little Lynnea is still the same little girl that she was before her last surgery. It just makes me even more anxious for the time when she will really be back to her old self.

Miserable Baby

The good news for today is that Lynnea's chest tubes were removed. The bad news is that she continues to run a fever, although we are grateful that it is not very high, and still relatively well controlled with Tylenol. The other bad news is, now that all of her pain medications have been switched from a continuous drip to only given as needed, she is showing signs of withdrawl. It is very hard to watch my baby whine, and shake, and look at me wondering why Mommy isn't making things better. Hopefully this will pass soon, and she will begin to feel a little bit better.

Good News, Bad News

The good news is that Lynnea' breathing tube was successfully removed this evening, and so far she seems to be doing OK without it. The bad news is that there are still some concerns with the way blood is flowing across her reconstructed aortic arch -- the fear is that there is still some narrowing, which could potentially be fixed by pushing a balloon through. In order to get a better idea of what is going on, the doctors would like to do another heart catherization to get a better look at things, and ideally, they could fix the problem at the same time. Earlier today, the plan was that they would go ahead with the catherization tomorrow afternoon. Unfortunately, last night Lynnea was running a fever, so cultures were run on all of her bodily fluids to see if she has any infections. The rapid test came back positive for a blood infection. This means that she can't have a catherization done right now (the doctors don't feel that the catherization is an urgent matter, as long as we get it done before we are discharged from the hospital). Right now the plan is that she will be on antibiotics for the next 10-14 days, and we'll see how things go from there. (Yes, this means that we're going to be at the hospital at for at least another 10-14 days, unless we're willing to take Lynnea home with an IV still in place, which I'm not OK with.)