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.

Thursday, February 16, 2012

It's been a while...

I've come back here so many times over the last few months but never managed to sign in and update. So many things have changed and yet so much is still right where I left off in October. Line infection after line infection; illness after illness.
Then something happened yesterday morning that made me come running here to organize my thoughts. Tomas was pretty cranky most of the night and was still sleeping hard at 8am, so I cancelled his 8:45 therapy session and let him sleep. When he finally woke up, he the girls and I sat on his bedroom floor playing. After several rousing rounds of "Itsy bitsy spider", I looked at all three of them sitting there wrapped in the pure joy of being together and I was so grateful for homeschooling and the lazy mornings it affords us. But my very next thought made me tremble and I had to shove it away in order to keep from sobbing. Will this morning be one of my most precious memories one day?
In the last two weeks Tomas' mortality has loomed large. Not because anything acute is happening or because anything new and heavy has come our way, but because the chronic-ness of being Tomas is taking its toll. He saw 3 secialists last week and all of them want to trial new meds, all of which have potentially large side effects. Hematology is the one that brought the biggest.
The GI doctor approached hem/onc asking her to do something about his neutropenia in order to help Tomas fight the line infections, or better yet, to keep from getting so many. Initially she said no, the treatment for neutropenia is a growth hormone injection. It has been linked to leukemia. In the past various doctors have told me they would only use the med on Tomas if "our backs were against the wall", or "as a last resort". GI came back, presumeably after this last infection in January, asking again. This time the oncologist wanted to know if Tomas was really getting more line infections then their average patient. GI's answer was an adamant yes, so she agreed to do a 3 month trial if my husband and I approved.
I always imagined the tough decisions centering around DNRs and healthcare directives; discussions with a palliative care team, hospice care - that sort of thing. I certainly didn't see this one coming. I went into the appt. expecting it to be just his regular old oncology follow up, instead I was hit with this huge discussion on how dangerous a place Tomas is in right now.
At this point he is getting line infections every 4-6 weeks. Mike and I have wondered how long his little body could continue fighting at that pace. The dr. confirmed that was GIs thinking and why he was pushing for action and that was the ONLY reason she had agreed to do the trial. The shots do boost neutrophil count, but patients with congenital neutropenia have transistioned to AML (actue myeloid leukemia). The particular type of cancer Tomas is already at risk for. His current risk level is 25-33%, depending on what studies you read. Adding in the neupogen puts us in uncharted waters. The oncologist also told me that she did not think Tomas would fare well against leukemia, that he has too many other issues going on to effectively fight it. This was particualarly depressing because I had always banked on the Down syndrome superstar in him to pull through if he ever did transition. She said normally DS darlings do very well, and they (as a group) have an astronomical recovery rate of 98%. I know of some families that fell into the 2% group so I was not oblivious, but again it was the odds I was banking on. They're gone now, a safety net disappeared; whether we start the neupogen or not.
So this was the choice given to my husband and I: Do nothing - he may or may not continue to get line infections while we attempt to get him off tpn; should he continue to get them, they may or may not kill him. Do a 3 month trial of the neupogen - he may or may not transition to leukemia; should he transition, it may or may not kill him.

After asking many opinions we decided to go forward with the injections. The idea is if he gets a line infection during the 3 months trial then we stop the shots immediately because they are not helping and therefor not worth the risk. If he is infection free, then we face another tough decision, continually weighing the risk/benefit.

Tomas goes in for a baseline bone marrow biopsy next Thursday and then we start from there. And that flashes me back/forward to the morning on the floor. I want to forget it, I want to have so many more mornings like it that the commonness of it pushes it away from my memory banks, makes it be mundaine and forgetable.
But Lord, if I don't get 1000 more like it, thank you for that 1. Thank you for that sun shining, heart music singing, face hurting smiling morning from Heaven.