Wednesday, May 18, 2011

Day +33 Functioning Neutrophils!

We got some great news yesterday. The cell that was functioning at 0% in Jacob’s old immune system, called a neutrophil, is now functioning at 96%. That means the donor’s cells are working in Jacob’s body! Other news we got was that 78% of Jacob’s cells are donor cells and 22% are his old. The donor’s percentage should continue to grow as it takes over Jacob’s weaker cells. In 6 months or so it could reach 100%. That is what we are hoping for. The doctor sent off a test today to find out what types of cells are left of Jacob’s. That will take some time to come back.

Jacob was supposed to start taking an appetite increaser medication yesterday, but was unable to swallow any. Oral medications are going to be a huge challenge. How do you get a three-year-old to willingly take yucky medication? We are going to try a sticker chart today. We may never get out of here if he can’t learn to swallow his medications. We are not completely opposed to trying an NG tube, so we will see. An appetite increaser would be great because he would then be allowed to come off of iv nutrition; one step closer to coming home. But for now, he might not be getting enough calories and the doctor might order him an actual increase in iv nutrition a couple times a week.

On Monday Jacob had a chest CT scan to investigate the cause of his persistent cough. Originally, Jacob was supposed to be sedated, but he did so well, they let him stay awake. He squeezed his eyes shut tight and I was able to stay right next to him and touch his legs and talk to him the whole time. I couldn't help but get choked up watching his sweet little face. I’m so proud of my little man for being so brave for something that was scary. Just as the doctor suspected, Jacob had swollen lymphnodes throughout his lungs. Jacob had a lung biopsy before starting his bone marrow transplant, and the biopsy came back normal; however, fungal infections are hard to detect and frequently sneak through undetected. The doctor figures that the swollen lymphnodes found before the bmt were in fact a fungal infection and now it has spread. We are hoping that his new functioning cells, along with the antifungal medication that he is on, will take care of the problem, but it is definitely a concern. The new cells could go overboard attacking the fungus and end up causing pneumonia. We are keeping a close eye on any new symptoms and Jacob will get a followup CT scan down the road to make sure the infection is not getting any worse.


DIY REDS! said...

That is awesome about all the good news. He will be in our prayers for the other stuff. How hard to watch such a sweet little one go thru so much. We are thinking about your family!

Al and Firm said...

Hi! This is Alissa, Spencer's sis. I'm so happy to hear that he's trending upward and onward. He's such a cute little guy.

I don't have a 3-yr old, but I saw lots of little ones while I was doing my nurse practitioner rotations this past year and a half. All of the parents at my site were told two pearls by a local pharmacist. They all swore by it and it worked for their kids:

1) Chew a sour sweet tart before bad tasting meds then take the oral med afterward. Apparently the sour candy takes away the nasty med taste.
2) 1 teaspoon of soda before the med works similarly.

Obviously not ideal to have Jacob eating sweet tarts and drinking soda all the time, but worth a try! :)