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Michael and I headed to the hospital at around 7am as he had an 8:30am appointment with endocrinology and with construction and traffic going into Cincinnati, I wanted plenty of time! We met with Dr. Rutter, who is coincidentally the wife of the Dr. Rutter that did his scoping in September, and she took a loooong time with us going over test results, measurements, history, etc. She was very thorough and very unrushed. We didn’t really come to any conclusions in this appointment, but she had them do a bone age scan which will determine how much growth his bones have left potentially. If he has a significant amount of growth left–we will consider stopping his puberty (which is only in the early stages) giving him more time for natural growth. (His growth hormones were fine so giving growth hormone shots wouldn’t work, not that we would have as we have been advised not to all along due to his respiratory issues.) If his bone age is close to capping, then we’ll just allow things to go along. She feels most of his extreme fatigue issues are related to his lung function and respiratory distress as throid and etc. came back fine. The other bit of possible good news is that she thinks his bone density may not be low depending on if it was read properly given his height and build. She was quite concerned about it, she said, until she saw him in person. She is going to rework the numbers and get back to me on whether or not they were done accurately. She did a test on his vitamin D just in case they are correct to help determine the best dosage of vitamin D needed if his density is as low as it reports in the testing.
They also tested all his vitamin levels and did a CBC, Theresa called and gave me the basic results and will email the rest, his white count is okay (with shots every other day) at 2.9, his hemoglobin was normal/low at 13.3 which is pretty much around where he stays, but his platelets were lower even than his normal low. He tends to hover between 65-68,000 (normal is 135-466,000) but his was at 46,000. This makes sense to me as the last shot I gave him he bled more than normal and at the office when they drew blood it seeped more than normal and he has a very large bruise which he doesn’t normally get. I let her know that this morning. Once I get the emailed results I’ll forward them to his local hem.
After that we had lunch with Pattie who has two boys with Shwachman Diamond and is the person I emailed back in Sept from the hotel after they mentioned the possiblity of Michael having SDS–she was very helpful then and since with articles and booklets and support. So I was very happy to meet her and her boys and Michael was excited to meet them (pictures later when I recharge my camera enough to get them off the camera.
Next up was a surgery consultation about Michael’s unhealed feeding tube hold. We really liked this doctor a lot, he was very easy to talk with and listened to Michael’s frustration patiently and sympathetically. While it seems his most minor issue, for Michael, it is the most frustrating. The doctor said it was an easy fix, they would cut an eye shape around the whole scar tissue circle and close it up. He said it could not be done with another surgery as the risk of infection outweighs the risk of putting him under twice. He also said that it is a short procedure and that they could put him under only mildly, less so than the scoping even, and then use a lot of local anesthetic. He would be out, but not sedated so heavily. As long as he doesn’t have any extra infections going on he is comfortable doing it despite his other issues. He was very perceptive in Michael’s emotional issues about it and said that sometimes there are so many big issues going on that cannot be fixed or cannot easily be fixed that it helps to find something seemingly small that CAN be fixed and fix it. I have to admit I almost started bawling after the ortho visit and wanted to hug him as he was right. We have to go back to Cincinnati in February to see Dr. Harris and we can do it during that visit. He’ll spend one night after the surgery and leave in the morning if he is eating and drinking fine. Michael was literally on cloud nine about it and you could see a weight come off.
WHEW. Sorry, another long post, yet again, but a full day! After this visit, we went to Pattie’s hotel just down the street and met up with her and her boys and Amanda and her daughter and sons–it was really nice to meet them both and get to just sit, talk, and pull Amanda onto Facebook! Pattie is going to email me pictures as my camera died! We stayed there until we had to be back at the hospital for the sleep study.
A picture speaks a thousand words:
That one is a self portrait! You can see the rest of them here, they were all taken on my phone as my camera was dead. As you’ll see from the other photos, he was wired every which way and could hardly get comfortable-it took an hour to get it all glued on! He had a bit of a breakdown at midnight exhausted and unable to sleep but then finally fell asleep about 1am–they came in at 6am and we headed back to the hotel. We’ll get the results in a few weeks.
That’s the end of another long missive, we’ll be heading home in an hour and a half weather permitting!
We visited orthopedic today and at first it was very disconcerting and awkward as we got a resident who hadn’t seemed to have looked at his history, x-rays, anything. He was like, “the curve is 45 degrees and we don’t do surgery until after 50, usually 60 so we’ll see you in 6 months or a year and see what has progressed.” I had to have looked incredulous, but I pulled my jaw up and calmly explained that his right airway was pinched off, the lower lobe was collapsed and we’d probably need to address these being THE PURPOSE FOR COMING HERE! That last I didn’t say, just thought very loudly. Then the ortho came in and he asked why we were there and I explained it all and he said, hm, well, that isn’t something we do (meaning the collapsed airway). I was thinking, oh great, this is going to be a completely wasted visit! I had heard the fellow outside the door filling him in and can only imagine that he told him the same thing he said to us. Anyway, I explained that the pinched airway was, it was thought, connected to the spine and we were referred here specifically for this reason! It was very odd, as if we just wandered in off the street and everyone wondered why we were there and I’m thinking have you SEEN the ct-scans?? Anyway, he went to the computer and pulled up all the 3D images and all of a sudden it was like we were talking to a new doctor.
I will say that I like his “style” very much, he said he was very blunt, and I said I appreciate blunt and simply want things on the table. He started explaining the multiple difficulties that we have in Michael and I responded what I knew and understood and he seemed surprised and laughed and kept testing me and saying he thought we just might work well together. Basically he reiterated what the other doctors have said, Michael’s ribs on the right side are malformed, extremely, and the lungs itself might be malformed. The problem, he said, was that while they have the ability and technology to fix his spine and put in a titanium rib cage, which might be needed more so than fixing his scoliosis, there is no surety, or possibly any likelihood that his lungs would say “wow, thank you very much” and pop into place. He then said, bluntly, though kindly, that right now we have a kid who is respiratory crippled, certainly not in a good situation–we could do all this surgery (with Michael paying the high high price of pain and etc. that happens with this type of surgery) and we could be left with a kid who has a straight spine, new rib cage, and still respiratory crippled, still not in a good situation. Frighteningly discouraging.
He also walked me through the 3D scans and followed the trachea down to where the airway pinched off almost all the way closed and explained that he was quite doubtful (actually, I’m pretty sure he is 100% sure it would not) that rotating his spine would release the airway. Forces are pressing down from the front (sternum, shifted rib cage, heart, etc., he couldn’t specify) and spinal surgery was not going to do anything for that–neither would fixing his rib cage. This was very discouraging, to say the very least, in that the whole hopes for doing surgery for the last 3.5 months was to open up that airway.
He said what he wanted to do was to take all this information (he is very interested in seeing the sleep study results from tomorrow night) and present Michael’s case at a conference of orthopedic surgeons specializing in spinal surgery and pulmonologists the first week or two of Feb. so that they could hash out all the ins and outs of Michael’s problems. He hopes that some will say, okay, did such and such, didn’t work, tried this, had some success, can’t do this due to this issue, and etc. This may have the benefit of seeing it through multiple eyes and maybe coming to some sort of consensus about what could be done, should be done, or shouldn’t be done at all.
So, that’s where we’re at. The good news, his spine hasn’t really gotten worse since last year, the bad news, that seems to be the least of his concerns, the fixing of which will not do anything for his current respiratory problems. I feel like someone who has been chasing the pot of gold at the end of the rainbow and just came up with an empty bucket.
Tomorrow we see endo, surgery consult for old feeding tube hole (which seems a little pointless at the moment but at least will be in place should the occasion arise in the future where he is in surgery), and the sleep study that everyone is quite interested in seeing.
Well we are off for our fourth month in a row to Cincinnati and I’ve already heard murmmerings about next month so I’m thinking we’ll just have to accept it as a rhythm of life for a bit!
We originally had an endocrinology appointment tomorrow afternoon but that got shifted to Thursday because they wanted him seen by a doctor who works with SDS patients in Dr. Harris’ clinic. So we’re heading up anyway as we didn’t know for sure until later this afternoon if we were going or not. It’ll be nice to just deal with getting to the hotel and settled in and relaxing, so none of us are disappointed about it. My mom, Katie, Michael, and I will all be going, Mike has to work and since there are no procedures being done, he’s fine with me relaying information.
Wednesday is the “big” day, so to speak, we have an appointment with orthopedic at 12:40p to, hopefully, discuss options for surgery. We are all quite stressed about this appointment because either way we go we are looking down a long road. It feels like the last three and a half months have all been leading to this, really, the last couple of years and to say I have a knot in my stomach is not touching the reality of it.
Thursday will be a busy day, we have the moved endocrinology appointment at 8:30am, then a surgery consultation at 1pm to look at his feeding tube hole so that if/when they do his spine they can go in and properly close it up as the clips didn’t hold from the scoping. After that we are going to meet up with a couple of families on the SDS group I have connected with the last couple of months. Michael is especially excited to meet up with Pattie’s two boys. Then at 6:15 we are due back to the hospital for the overnight sleep study. They are concerned that Michael isn’t really getting into deep sleep and also that he isn’t releasing enough carbon dioxide while he is sleeping. I’m kindof glad that this will be a long day as it might make it easier for Michael to fall asleep despite all the probes and such!
Friday we’ll be heading home barring any add on tests, which are possible as they do try to squeeze anything in they can think of while we’re down there, which is nice in a way. Then we’re home free to enjoy Christmas. I worked very hard to pretty much finish Christmas last week as I didn’t want to have to stress after we got home and I’m glad that I did. I literally only have a few misc. things to wrap, maybe a couple extra stocking stuffers to get…and that’s it! Phew! It was a necessary organization between my final week of class and this trip.
Anyway, we appreciate everyone’s thoughts, prayers, and concern as we head back down and I’ll put an update up Wed. night about the consultation.
