Tuesday Update: A Step Backwards

Annie had a rough night last night. Some of her evening meds were given through her G-tube port. Because she hasn't had anything in her stomach for such a long time, she didn't tolerate the meds very well. She vomited all of them up and we suspect that she has aspirated. Annie's oxygen saturations wouldn't come out of the 80s and her breathing was very labored. She received some deep suctioning from the respiratory therapist, but that didn't seem to help her O2 levels. So Annie was started on oxygen last night and has been on it most of the day. Her breathing has been labored with a fair amount of chest retraction with each breath--working so hard to breathe. Along with that, her heart rate is pretty high--around 130 or higher even when she's asleep.

Annie had a chest x-ray at noon today and it didn't show any signs of pneumonia, but we will continue to monitor her for pneumonia symptoms which could still show up in a day or two. We'll just have to wait and repeat the x-ray once more has developed.

In other news, they are increasing the rate of her pedialyte through her J-tube just a little. If tolerated well, in a few days we'll start her on quarter-strength formula at a super slow rate through the J-tube and slowly work towards her tolerating her normal feeds through the J-tube. That is her feeding requirement in order to be discharged. Then once we're home and doing well, it will be up to us to try to transition her back to just her G-tube again. We are able to give all her normal daily meds through her J-tube except for the one that keeps her ulcerative colitis in remission. And it can't go through the new G-tube port either. The GI has switched her UC med to a liquid one that can go through the J-tube, but it's not a great long-term option, so we really hope to get Annie well and back to her regular G-tube.

Annie is still receiving her bactrim for the pyelonephritis via IV. Her lab values are still not quite right, so they are still making adjustments to her TPN. We'll check her white blood count again tomorrow too. If it's gone up, that would be another indicator of pneumonia.

This has been a rather discouraging day, especially since Annie seemed to be doing so well yesterday. This afternoon she was up in her wheelchair and was able to come off oxygen for a little while, but this evening now she's back to requiring it. Her heart rate got up to the 150s but now seems to be in the 120s again. Still not great, but better than it was. We really appreciate continued prayers for Annie.



Today we have a nurse with OCD like me! She got Annie a new IV pole that keeps all her pumps nice and tidy. It's the little things...

Don't let the smile fool you... I took this picture while Annie was having a gelastic seizure last night--also known as laughing seizures. They're fun to watch until you realize they are actually seizures, but we'll take our smiles however we can get them!

It's been interesting to watch the hospital construction right outside our window, and watch this guy work today. I'm glad I don't have his job!