Brett loves his picture of Gantt! They miss each other a lot!
Everyone at home is doing fine. Mark felt well enough to go to school today, and Gantt did just fine as well. It was a good day with Brett today. Today he was taken off 2 of the antibiotics that are used to treat the lung infection, because we suspect he doesn't have a lung infection. He was put on those to be cautious, because it's better to treat then discontinue treatment as needed than to withhold treatment and risk the lungs getting worse (and developing scar tissue). Now he is only on one IV antibiotic to treat the sepsis. His blood cultures are still looking good - still negative for now, which means the antibiotic is effective. The broviac central line will not come out during this admission. We will finish the IV course at home and then they'll decide whether the line can be kept. We hope he will be able to get his CT scan on his chest (lungs) on Thursday or Friday. This will give us more information about what is going on in his lungs.
I haven't written much about the immune deficiency research on Brett, but checking his cells and levels of all the different antibodies in his blood. On three separate occasions in the last 3 weeks, his IgG levels have been very low, so the pulmonologists were wondering if there is some sort of immune deficiency. They got an immunology consult involved, and they have decided that they do not think Brett has a primary immune deficiency (body doesn't make any antibodies - never has). They think this because he is making all the antibodies - it's just the IgG levels are on the low end. They think he has "used up" his IgG because he's been so sick this past year. There is a lot more information on this, but too much to write about here. For now he is going to be getting one dose of IgG tonight. Although it's a blood product, it's not quite as big of a deal as getting a transfusion (of which he has had several in the past, and done well with them). It's a slow infusion - between 4 and 6 hours long - in which they come assess his condition and check his vitals every 15-30 minutes. It's probably gonna be a long night for me, but I expect he will sleep through it just fine.
Brett with his *fave* PT tech - we love her!!
The funny "clown guy" that came to entertain Brett. I wanted to ask him if he was Patch Adams!
There are so many great volunteers here! They serve family dinners (even Thanksgiving & Christmas), play with kids in playgroup and teenagers in the rec room, work in the gift shop, serenade with a guitar, provide comedy (like the guy in the pic), and even cuddle babies. I'm sure there are so many more things volunteers do here I don't even know about. Hats off to these wonderful folks!
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ReplyDeleteLook at all those teeth!!! I hope that teething process is not adding extra misery on top of everything else. What a praise that there is not a primary immune disorder! Those do sound like long nights of interruption... praying he sleeps and you can some too! I guess at some point you will become so exhausted you won't be able to help but sleep through at least some of it. :)
ReplyDeleteThe picture of Brett looking at Gantt is so sweet~ I too can testify about how much twins miss each other when they are separated! So sweet. Praise the Lord that he is doing much better and was able to come off 2 antibiotics!
ReplyDeleteThe photo of Brett studying Gantt's photo sure makes this G.G. smile. Wow! What a great new look on the blog site. Love the new art work. You are really showcasing your design and writing skills. I treasure this beautiful scrapbook.
ReplyDeletePatsy Gantt