Posted 2014-03-21T21:27:30Z

March 21, 2014: The IVIg is working!

We are eight days out from the IVIg treatment, and all things considered, it's been a very good week. Edward has gotten a little better each day, with the exception of some fussiness and apparent discomfort the day he went off the decadron, and an overlapping day and a half of low grade fevers, during which we spent four hours in the ER at Helen DeVos Children's Hospital.

Ordinarily, I wouldn't even give Tylenol for such a low fever (between 99.6 and 100.6), let alone call a doctor, but because of his port Edward is at higher risk for infection. Our discharge instructions from hematology/oncology ("heme-onc") said to call if Edward sustained a fever of greater than 100 for more than 12 hours. His prolonged fever plus the fact that one of his ten incisions was green and goopy were enough for the on-call heme/onc resident to order some antibiotics run through Edward's port. She said if this happens in the future it might be fine to go to the ER in Muskegon to have his port accessed, but because surgery might want to take a look at the wound, it would be better to come in to Helen DeVos this time. It happened to be the last night Kameron's mom was with us (Wednesday), which worked out really well as we were able to leave Henry sleeping at home. We were so grateful for all the help she gave us while she was here!

Edward had his line cultured and some other labs done, and also had an x-ray of his chest, which he hates as much or more than being stuck with a needle. The x-ray showed slightly more fluid than when we left the hospital, but not enough to worry anyone, as Edward hadn't shown any signs of respiratory distress. He got a dose of rocephin and a visit from the surgeon who gave us permission to go home with the caveat that if the culture grew anything Edward would have to be admitted. Praise the Lord, nothing grew! The next day Edward had another low grade fever that disappeared by afternoon and hasn't come back.

I happened to talk to a friend as all this was going on, and I really think the Lord orchestrated our conversation. She mentioned putting a charcoal poultice on Edward's icky wound, which is something we hadn't thought of. I knew of charcoal poultices, but had never done one myself, so I was grateful for instructions. After just a few poultices, his wound has less redness, swelling, and green gunk, and is starting to close up!

He has been eating better, showing quiet interest in all the usual things, and having fewer OMS symptoms each day. We are feeling excited and grateful, and looking forward to finally going to church as a family tomorrow after too many weeks away!

We are grateful for all the prayers, and for so many of you who have sent mail, brought food, offered help, and even delivered wood for our outdoor boiler! Thank you so, so much!

________________________

(If anyone is interested in the charcoal poultice recipe, here it is...)

1 Tbs Activated charcoal
1 tsp Ground flax seed
Enough boiling water to make a paste--it will be a little thicker than pudding
- Spread on a paper towel just enough to cover infected area with a thick amount (probably all of it), folding the paper towel as needed to keep the paste inside. Press against your face to get a tolerable temperature, then cover area with poultice, cover poultice with plastic wrap, and use something to keep the whole thing in place (we used an ACE bandage). Replace every 6-8 hours.

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Emilie DeVasher 21 Comments

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March 21, 2014: The IVIg is working!

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