We went to Minneapolis seeking answers and at first I felt like we weren't getting any, but by the end of the trip, I realized we really had after all.
First let me not leaving you all hanging in regards to Coleson's surgeries. His ear tube surgery went well, though we were delayed an extra hour in the pre-op room which to an already "nervous" patient just adds to the anxiety. He didn't want to put on the gown but was very good all the way to the operating room. He was only going under the gas mask as far as sedation so there were no pre-meds. I held on to him as they put on the mask which he immediately began to fight. Despite the Dr.s asking what "flavor" the patient wants the mask to be, nothing is worse than the smell of that gas! I got quite a bit myself as I was trying to hold on to him. And worse, the smell sticks to you like glue so I got wiffs for the rest of the day. Coleson woke up extremely sad and mad and almost on cue started pulling out his IV line and EKG stickers. He said how scared he was of the mask which I couldn't blame him for and I just dreaded having to do it all again the next day.
As per his usual "MO", he recovered quickly and we were off to Crayola Experience for a few hours of making colors come to life. I almost thought we weren't going to fit this important activity in with the added surgeries but this would have made him more mad than the surgeries themselves!
Though I would have rather been able to "plan" for the leg surgery, I guess the one good thing about it being more of an emergency was that I didn't have much time to dread it. It also helped make some of our decisions in regards to "where" and "when" we were going to do it and if we were going to try to get his port out at the same time. After using the sterile soap to wash two nights in a row and getting very little sleep, 5:00am came and we were off to the hospital again. The one thing I love about these hospitals is that they understand Hurler kids and how much they go through and they do everything they can to try to make it as easy as possible on the kids. For instance, I knew Coleson was not going to put on the gown and allow us to wipe him down with the sterile wipes. I knew if he saw a mask that he would get superman strength and fly off the bed so fast.... so they didn't make him do any of that. Instead we hooked his line up to his port, gave him some meds to put him to sleep and then they took him back. I don't think he even knew what was about to happen. He had 1 1/2 hr MRI first and expected about another 1 1/2 - 2 hrs to remove the plates. Right on schedule, he was done about 11:00. Dr. Walker said he did really well, no complications and there did not appear to be any infection but that it would take 48-72 hrs for the cultures to grow to know for sure. So we got settled into our room. Coleson was in a lot of pain but didn't seem to complain about the surgery. It was almost as if he knew that the Dr. was fixing his legs again and that he knew he would be able to walk again soon. I feel like he grew up a little during this trip... his birthday was October 4th (7 years old, can you believe it?) and he just seemed "older".
Paul and I were contemplating different scenarios of how we were going to get back home if Coleson ended up needing to stay as the Dr. wanted us to. Paul had a work trip he needed to fly out on Monday morning and I wouldn't be able to keep Peyton with me at the hospital, but the thought of trying to fly home with Coleson was intimidating as well. I just hoped that Dr. Walker would release us on Saturday, which he reluctantly did after I pleaded my case and his cultures showed no sign of infection yet. I was so ready to come home for many reasons, including the weather. I was really looking forward to a mid-west fall but what we got seemed like winter instead. It rained almost every day we were there, hovering between the 30s and 40s and I did not see the sun once! We got home late Saturday night only to find ourselves locked out of our house. Apparently we had another big rain storm on Saturday knocking out our electricity and wiping out our garage entry. I won't tell you how we finally broke in but it was dark, cold and the kids were scared on top of the pain Coleson was in.
Coleson wasn't able to walk at all on Sunday but by Monday he was starting to stand and as the day progressed he took a few and then even more steps. By Tuesday he was getting around by himself fairly well. He went to school on Wednesday and even though the plan was to pick him up after a couple of hours, he lasted the whole day. They get out 2 hrs earlier on Wednesday anyway. By today he was ready to get back to his usual Friday routine of going to soccer after school, but his legs still need 6 weeks to heal so we will be cutting out soccer and gymnastics until January.
As mentioned in the beginning of this blog, we went to Minneapolis seeking answers to some of our questions and I felt like we had not really received any answers in regards to continuing his weekly infusions, and his surgeries but I guess we did after all. Part of our consideration was whether we were going to stop ERT and try to get his port out with his leg surgery (so we could reduce the number of surgeries) but with that no longer being an option, I feel like there is no rush now to get his port out. And if we aren't getting out, we should continue to use it, which means we will continue ERT. We spent a lot of time talking about Coleson's GAG levels. GAG is the gunk that builds up in the body due to the missing enzyme which impacts the skeletal and organ development. Coleson's GAG levels are fairly low, even within normal range for someone without Hurlers. What I didn't understand and learned this trip is that this is the GAG level that is in his blood cells and with him having a BMT, you would expect the cells would have a normal GAG level. What it isn't measuring is the amount of GAG in his joints, organs, etc. which could only be achieved through biopsies. With this new realization that we really don't know how much GAG is still in his body and that ERT only helps try to get rid of this, we will continue ERT until new information suggest otherwise or Coleson starts to put up a fight about it.
No comments:
Post a Comment