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We’re going to spend the night again in Cincinnati, we were packed and ready to go to his appointment with Dr. Harris and Michael was in a lot of pain. We went to the appointment and it got worse so they called and set up an appointment with the surgery nurse just to make sure all was well. We were pretty sure it was because of the Tylenol with Codeine, but they wanted to make sure. The surgery nurse said everything looked good and sent us back to the hotel for the night to make sure he doesn’t get a fever or anything. If all is well, we’ll be heading home tomorrow early afternoon, if not they’ll check him again at the hospital.
As for the appointment, we talked with Dr. Harris about the upcoming surgery and came up with a plan for pre and post surgery. Dr. Harris talked to our local hematologist before we left to set up IVIG treatments starting in the next couple weeks and going until after surgery. Those are monthly IV treatments to boost antibodies. We’re continuing his every other day shots, of course, and a month before the surgery they are putting him on anti fungal and anti bacterial meds to continue after surgery as well. They just want to try and eliminate any possible infection before and keep them away after. They are also looking to see if he should get on a medication to harden his bones and also possibly putting him on pancreatic enzymes during the 6 weeks+ of tube feedings to help him absorb nutrients better. Unfortunately he lost 2.5 pounds since our last visit, he just cannot afford to loose anything. I’m going to see about him seeing a nutritionist when we get home, they stressed that nutrition plays a role in healing and we just need to get him some sort of buffer. He also mentioned that if this surgery improved his lung function we would have to consider a bone marrow transplant, which totally freaked me out and I’m trying not to think about. One massive thing at a time, I have to just set that aside.
So, hopefully we’ll be heading home tomorrow around noon, we’ll see how the night goes.
Monday: The surgery went very well and very fast. The followed the tube down, stitched the stomach closed, then cut the tube away and pulled it out, then closed the layers up to the skin. He spent the night and has had some pain, but the Tylenol with Codeine works pretty well. He was most irritated with not being to eat until Tuesday.
Tuesday: The hospital wanted to make sure he was eating fine, breakfast and lunch, which worked out well as then we could just go downstairs to the orthopedic appointment. They re-did all his spinal x-rays and a couple we hadn’t had done before, including a traction one that was a bit painful on his stomach and put his pain up there pretty good. We dosed him with some more Tylenol+ and by the time we got back to the hotel his pain level was down. Unfortunately, the orthopedic consultation was very difficult and he seemed to have been listening well. His spine has curved significantly since September and he has moved “past the point of no return” (as the song from Phantom of the Opera kept going around in my head). Whether they can do anything to fix the airway or not becomes, while not irrelevant, no longer the deciding factor. The doctor said that at the conference the biggest issue was trying to figure out where the pressure was coming from that is pinching the airway and how they could relieve it. There doesn’t seem to be a good way to separate the spine and the front, but they are going to try to tweak things as they go in the surgery and hope that it will have an impact on his airway.
The surgery will be in early summer, most likely, I should hear more in a week or so–it sounds like June or early July. There are, of course, a lot of concerns and issues to be dealt with…consults with pulmologists and anesthesiologist to try and come up with the best way to get him safely through the surgery process despite his serious lung issues which will be about 8 hours long. His nutritional (too skinny) factor is a problem as well and 6 weeks before the surgery (give or take) he will have a feeding tube placed down his nose, past his stomach, and directly into his intestines for maximum nutrition absorption. We’ll do feedings through that to pump him up and bulk him out, it will also be used after the surgery when he will not feel like eating due to drugs and pain issues. We’re to start iron and vitamin C build up now and work to a certain level by surgery. We’ll be seeing Dr. Harris tomorrow who will help us make a game plan from the immune system end of things which will probably include the IVIG infusions before and after surgery.
Seeing his September scans next to his scans from today was heartbreaking, along with thinking about the surgery and recovery ahead. Michael was terrified, his words, and very overwhelmed, as we all were. We all had a good cry before we could leave and the nurse was very compassionate.
I’m not sure what we expected from today, I think I expected to hear that because it probably wouldn’t help the airway, there was no point in going through the spine surgery. There hadn’t been a big shift from Sept 2007 to Sept 2008 so we were not expecting to see such a dramatic shift. Although, seeing him without a shirt is becoming very painful for me, so I had some idea that things were not right.
Anyway, it was a difficult day for all of us and a difficult a difficult few months ahead as we do whatever we can to get him in the best health possible going into the surgery.
Tomorrow is an appointment with Dr. Harris and an attempt to get our van home. As some may have heard, right when we got off at our exit here our van’s transmission gave out on us. Luckily we were only a few miles from the hotel and they sent a shuttle to get us. We had the van towed to the hotel and have been able to use the hotel shuttle to get back and forth between the hotel and hospital. Mike’s friend can fix the transmission for more than half what it will cost here and thinks if he can get it on 75 he can get it home if he doesn’t stop. A transmission guy here agrees, so we rented a vehicle for me to drive my mom, kids, and myself and all our luggage home while Mike makes a run for it. Life is certainly never boring!
We’re heading out to Cincinnati this afternoon, starting to get all packed up and ready to go, we really do have it pretty well down to a science. We got a hotel just down the street from the hospital as we have to be there at 6:15am tomorrow morning for surgery. I’m not sure what the exact time is, I would guess around 2 hours from when we get there. They will be cutting out an eye shaped “plug” around scar tissue and a “tube” that formed and keeps the site from healing shut. Then they’ll close it all up and finally Michael will be done with the bane of his existence. He’ll spend the night at the hospital and as long as everything looks good and he is eating and drinking fine, he’ll be released Tuesday morning.
Tuesday afternoon we’ll see the orthopedic doctor we saw in December, he took Michael’s 3-D images to a conference of surgeons and pulmonologists the end of January and we’re going to find out if anyone came up with any suggestions or ideas to fix his pinched off airway, back, and rib cage (the airway being #1 priority as the others aren’t going to help without that). As I said somewhere else, I feel like we have been on the yellow brick road since last March and we’re about to see the apparition and booming voice of the The Wizard pronouncing our fate.
Wednesday morning we’ll see Dr. Harris, the hematologist and specialist in Shwachman Diamond Syndrome for a 3 month checkup. As long as everything is good with his numbers and the surgery site, we’ll head home after the appointment.
