Day +22 - Central Line Surgery Today

Sorry for the update delay. So much has been happening; it’s hard to keep up with it all. Noni went back to Lake City today. It was hard for her to go, and it will be hard for Sarah too, since Noni was able to take night shift once in a while. Now with just Sarah and I here, Sarah will be in the hospital every night.

Right now Gracie is downstairs in surgery to have her central line replaced. The cuff from her old line was slipping, so the consensus decision was to go ahead and replace the line. This is a good idea, if for no other reason than to stop having to worry about the line constantly. Up to now, every dressing change has been a stressful struggle to make sure the line doesn’t move. This should reduce that concern by at least 50%.

Gracie definitely has some minor liver issues. Her skin and eyes are a little bit yellow, but the docs don’t seem too concerned. They are monitoring her bilirubin levels to keep tabs on it. There’s a slim chance she has some minor VOD, but again it doesn’t seem like anything to worry too much about.

Gracie is on extra precautions because she is producing a lot of snot and sneezing sometimes. They took a sample to rule out a rare respiratory disease that (if she has it) must be controlled, especially on a unit with immune-compromised kids. As a result, all of the staff needs to wear gowns and masks when entering the room. We learned today that family members are supposed to gown and mask as well. Even mommy has to wear a mask. Frustrating that we learned this a couple of days later than we should’ve. Definitely some issues here with consistency of nursing staff - some just aren't very good, some are still in training, and some are awesome. That sid, communication between them is not so good... Anyway, we were worried that the mask would scare Gracie, and while she doesn’t like it much, she’s learned to play peek a boo with it. She actually ripped one of sarah’s masks already.

I know this sounds a little scary, but it’s just a precaution. We need to continue this until we get final culture results back (assuming they are negative). The preliminary results are back and all clear, but we need to wait for the cultures. Docs expect all to be clear.

Hmm. What else. Oh, Gracie is totally off of her pain meds. She can still get a one-off dose if need be, but so far she’s been doing ok. She has learned to talk to herself to self-console. I think she must have learned this from Muntz. He talks to himself all of the time. :) She will lay there and say nigh-nigh-nigh-nigh-nigh and chew on a binky until she is ready to sleep. It’s so cute.

When Noni was here, Gracie spent a couple of night sleeping in the crib, which was great. Unfortunately, when Sarah is around, Gracie wants to be closer to her, so they brought the bed back in last night and returned to the less than ideal sleeping arrangements. Oh well. Fortunately both Sarah and Gracie are used to it.

Gracie’s numbers continue to look good. After they took her off of growth hormones, the numbers dropped (as expected), but today they started to rise again. I don’t have them in front of me but her total white blood cell count is around 3.4, and Neutrophils are at 2.0; both up from yesterday. Her leukocytes are a little bit low, but that’s ok. Neutrophils are more important.

As far as her weight, she’s still retaining fluids, but she is starting to reduce that a little. Her weight is slowly dropping, but needs to drop a bunch more. I’m thinking of putting her on a treadmill with me. :) Her kidney function tests are a bit elevated as well. This is likely due to the volume of drugs and fluids pumping through her. It really puts the kidneys to work. They aren’t too far out of normal range today, but they’ve consistently been a little above normal.

All of this said, Gracie “seems” to be doing really well. She is up and playing a lot. She’s doing great with both physical and speech therapy. Her white cell numbers are up, and her demeanor is generally really good. One of the best diagnostic tests is just how the baby looks and behaves. On those parameters she is great.

That’s it for now. Please pray for successful line replacement surgery and recovery. Please pray for good kidney function so that Gracie and eliminate all of the excess fluids. Pray for clean cultures, and of course, good nights of sleep for both Mommy and Gracie. Also please pray for our friend Rylie down the hall, for her continued progress. We love you guys, and I’ll try to update more frequently.

Uncle Mack