Monday, February 27, 2012

Of irony and honey

Tomas had several appointments over the last week so we were at the hospital quite a bit. He has been here long enough and often enough now that people recognize him. Several times over the few visits people would stop us and say hello, comment on how good he looked, and say that it was nice to see him as an outpatient for a change. Ironically, I cringed. Here we were nearing the end of February and I longed to make it through a month without an admit. And as you all know God and I have this clearly established pattern of Him bending my will to His. The idea occured to me that if I expressed this desire out loud, then surely God would pounce.

The first visit was to pulmonology. The doctor didn't have much in the way of encouraging news. He said that because of Tomas' immune issues and lung issues he is prediposed to getting frequent pneumonias. Since we are already doing everything we can do to prevent them and it is not working than this is just going to be the way it is. All right, next. A series of skeletal xrays to check why he won't bear weight; those showed Bilateral Coxa Valga deformity - a type of hip dysplasia. All right, next! Nephrology, a new service for him. That doctor had better news. Although she is not going to reduce the high amount of TPN volume Tomas is getting because he is at a very high risk for getting kidney stones since he doesn't pee when fluids are not running, she doesn't think there is anything else that needs to be addressed right now and only wants to follow him once a year. Woohoo, now we're talking.
The next day was his bone marrow biopsy and lumbar puncture. Good news is that for the first time ever he did not need airway support while going under general anesthesia. No intubating, no LMA, no nothing. Just a bit of repositioning every now and then. This combined with the fact that for the last 4 surgeries/procedures he has had no severe waking up issues makes me think that he has turned the corner where anesthesia is concerned. Bad news is his lumbar puncture showed his opening pressure higher than it was in late August, which means that his intracranial hypertension is worse, and that trying to reduce his medication a few months ago didn't work. So the doctor ordered the dose back to the original strength while we wait to follow up with him. After that came a chat with Hematology. That doctor wanted to wait to start the Neupogen injections so that she could track Tomas' neutrophil count while he was healthy. I agreed because I wanted to see if adding in the second Ethanol lock per week would make a difference. Then she did it, she said "After all, it is already the 23rd, you are only a few days away from making the whole month." Ack, that was it. Now I had to respond. "Yes", I squeeked out, hoping the omnipresent One wasn't. That was Thursday.
Tomas was admitted yesterday. He has a fever and a dry cough, feeding intolerance and retching. Nothing has come back positive yet so they are still looking for the source of the infection. This makes the 12th month in a row he has been admitted. For one complete year he has been in the hospital at least once per month Sixteen admissions in 12 months and only one of them was overnight. To say I am tired, that my girls are tired, my husband, his employer, our family, friends and bank account are tired is the exact opposite of a hyperbole.
But while God has not put down his pruning shears, His salve is of the sweetest kind. Once again friends have come to my rescue offering childcare so I can have peace of heart while I am once again separated from my daughters. And wedged between those doctor's appointments and this admission was a day spent in His house with my homeschool group. Because it was on a Friday during Lent, we walked the Stations of the Cross.With each station Jesus grew weaker, falling several times. With each station, bowing and rising, I grew stronger. With each step to His crucifixtion Jesus drew me one step further from the abyss of discouragement and the darkness that surely lies in a heart filled with despair. With divine irony, while I was remembering His pain and suffering, He poured out His graces to soothe my wounds. It is the ironic fate of the sacrificial lamb; only through His blood can I be cleansed.

No comments:

Post a Comment