August 1, 2005
August 1, 2005 | Updates
Samuel fell asleep last night about 9 pm and slept until about 5:30 am this morning. He started posturing as soon as he woke up, and continued for quite some time. We went down for the baclefin pump trial at 9 am and there was some confusion because it apparently hadn’t been scheduled. But we got it done anyway at about 10 am. They just poked Samuel in his spine and extracted a small amount of spinal fluid and replaced it with baclefin. They told us it would take 2-4 hours to really work. About 3 hours in, we could see some change in his posturing. His episodes were shorter in length, and his joints were a little looser. Because his posturing is so bad, they didn’t expect to see a huge effect on him with the dose that they can safely insert during this trial (75 micrograms). And we didn’t see much difference, but there was enough for them to decide to go ahead with the surgery to insert the pump. (They can feed up to 1000 micrograms a day through the pump once it is in place.)Also, I had been misinformed about them being able to leave a catheter in his back so they could feed him the medication until the surgery could be performed. Apparently, they don’t do that. We were really frustrated about that and basically begged and pleaded with the doctors not to make him wait until next Monday for the surgery. Thankfully, they scheduled it for this Wednesday.
In the meantime, they are doing their best to keep him calm and comfortable. But he is on a ton of medication - adavan, meletonin, clonadine, verset, baclefin, tylenol, motrin, transine, magnesium and 2 others I can’t remember that help with his blood pressure and 1 that keeps his stomach from getting ulcers. None of them seem to really do a lot of good, but they are helping him some.
They will reintibate him on Wednesday because they will need to sedate him for the operation and also he will be sedated for several days afterwards in order to give his incision time to heal before he awakens. In that time, they will slowly increase the baclefin pumped into his spine so he doesn’t posture when he wakes and tear the incision. That means we will be headed back to the ICU, but it is a step forward, not back. And although it is a scary thing to do - sending him in for surgery - it is well, well worth it because he can’t continue on the way he is now.
We again don’t know how to thank everyone for all that you are doing. We wish we could be there to thank you in person, but we know you understand how hard it is to leave him. We are certainly getting an education in medicine and feel like we need to be with him as much as possible to watch him and help the doctors know what is and isn’t working for him and what may be best to try next.
I wanted to specifically thank the primary children in the Paradise 2nd Ward for the pictures you sent to Samuel. Will someone please make sure they are thanked and know how very, very much they meant to us? We have taped them all over the walls in Samuel’s room and they really brighten it.
Thanks to all of you. We are touched every day by the things you are doing for us!
Love,
Tom, Teresa & baby Samuel
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