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.)