We have lots of good news to report.

Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The dosage for cyclosporin is changed based on regular lab draws, and the medicine absorbed changes based on the method of administration, so I imagine that is why they are changing this one to NG first.  All meds will need to be changed to NG before we can leave.

Her IV nutrition has been turned off, and she is back on NG feeds, kind of like baby formula.  We learned today that the IV nutrition is harder on the liver than the formula, so it is good to get off as soon as she can tolerate it.  She has been vomitting more than she has been, though it turns out her Ativan was accidentally stopped on Sunday.  The nurse said that sometimes meds are prescribed for a certain number of days, and so sometimes they get turned off automatically without anyone realizing it, though she also said that typically they would taper down the meds, so perhaps that is the reason for his vomitting.  There are lots of variables, she is moving more, she started drinking a little (no eating yet), her formula, etc. so it is hard to know what the cause of the vomitting is.

She has started going to the bathroom again! - parents at the hospital get excited about these sorts of things...

She hasn't asked to go to the playroom yet, but Heather did bring her out to rounds the last couple days.  Her nurse tonight hadn't seen her in a couple days and was quite happy to see how well she is doing.

She has a hard time going to sleep tonight - she slept a few hours earlier this evening, but now has been "reading" her book via the light from the oxygen probe.

Reading by the light of the oxygen probe

It seems like there are other things as well, but I can't think of them right now. Oh, if we haven't announced it before, we have raised $1,800 for David's House so far!

The main thing to pray for is for her VOD (veno-occlusive disease), her liver is basically clogged up and causing fluid to backup and leak everywhere in her abdomen.  Her doctor says she would hope that it will heal itself in maybe a week, and should be before two weeks.


Posted by Jon Daley on March 5, 2024, 10:54 pm | Read 18 times
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Nothing tells me as much about how bad the past week has been as your "We have lots of good news to report" followed by news that taken out of context could seem quite grim. But good news is good news, and we'll praise God for it!

To add something else to your list of possible reasons for her vomiting: I have a sensitive gag reflex, and can imagine that if you stuck a tube through my nose and down my throat, I'd be near gagging all the time. It wouldn't take much to induce vomiting.

How's her ANC?

Posted by Linda Wightman on March 6, 2024, 8:11 am

So good to hear this!! Will continue to pray especially for her liver. Tell her hello for me! :)

Posted by Heidi Johnson on March 6, 2024, 10:40 am

ANC is 1230 this morning.

My mom also has a severe gag reflex - the famous story was when she started gagging when the doctor was going to get the Popsicle stick to hold her tongue, and the doctor pointed out that the stick wasn't out of the jar yet...

However, Grace doesn't seem to mind the NG tube too much. Apparently some kids are quite sensitive to the temperatures or slight pressure/expanding of the tube when medicines or foods are pushed down it. She did ask for a Kleenex this morning when she had it flushed (I assume it was flushed because of the cyclosporin, which is sticky, because she does usually have it flushed.

She has had some nausea today, both times when we were talking about food (The first time, I asked her if she wanted anything to eat or drink, and the second time, we came to the food page in the sign language book). She vomited the first time, but not the second. The doctors have agreed to lower her formula to 30ml/hour (down from 35ml, previously she was at 25ml pretty successfully, but they have been trying to get it higher).

Posted by jondaley on March 6, 2024, 11:14 am
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