The new doctor wasn't a big fan of jumping into phenol and botox together. I was elated to find out they were capable of doing it at this new hospital though. She wanted us to try dantrolene orally 1st. She thought it may cause less side effects than baclofen. Currently he was only taking 10mg at night time because any daytime dose would knock him out for the day. I wasn't very happy about trying this new medication because it came with a risk of liver issues. He even had to have blood work prior to starting it. Then there was a fight with insurance to pay for it and a pharmacy to compound it. After a few months of trying to get this medication 1. It didn't near nothing for his tone. 2. He slept worse than he did on the baclofen. He barely work up for 2 days and we had not even tit-rated to the full dose yet. I email them back asking to please go forward with what I know works. We are going into the time frame that we can do injections since you have to wait 4-5 months from the last dose to do it again. About 3 weeks ago we took him into the hospital and the doctor did phenol in 2 different areas of his legs and botox to his arms and hands. I was very surprised at how well the botox worked in his hands. I have never seen it work that well without phenol. I didn't want phenol in his arms this time because it makes them to weak. On his legs come apart nicely, but unfortunately his hamstings are still tight even after the phenol. In the past he had botox in his legs as well and maybe that is why we did not have the same good results this time. He had the start of a contracture behind his knees because he likes to keep them bent even when sleeping which like I mentioned before he has never tolerated night splinting. So she wanted to do casts on his legs for 2 weeks. I was worried about this because I know how very sensitive his skin is and how easily even his braces that come on and off and cause him issues. I was reassured by the Ortho techs that they do this all the time and they take them off every week, how well they are padded etc. I let them put the casts on thinking it is in his best interest. I don't want the contracture behind his knee to get worse.
So the casts are on both legs from toes all the way up to the top of his thighs. I'm freaking out at the loss of control to take these things off when he is crying. I really haven't allowed myself to think this though I don't think. I take him home and withing 2 hours of the casts being on he is fighting them mad as hell. I literally have to carry him around and hold him the rest of the day that day (Friday) for him not to cry. He slept on top of me all night. If he felt me move him and take my hands off of him he started crying. I did start giving him a morning dose of baclofen (it is prescribed at night and PRN every 6 hours as needed) to help him not fight the casts. I had also given him extra valium (also prescribed the same as baclofen) I had even given him a few doses of the course of 3 days of ibuprofen thinking it would help with anything muscle pain (Ill get to why that is important in a minute) Sunday I really started freaking out about not being able to see his heals. He has never ever had a pressure sore, but I know in his DAFOS (which of course are only worn with socks) the way he braces and pushes down he can make his heals red so I am worried about what these are doing because I know he is doing everything he can to try and push out of these. I considered going to the ER and having them cut cast windows into the heal part of the casts to ease my concerns and talked myself out of it. Thinking I know how much padding was between the hard part of the casts and his foot plus I didn't know if they would even do it just because I wanted them to. At this point by Saturday afternoon and Sunday he was back to his happy giggly self only crying when he needed his legs repositioned. He went to school and therapy on Monday and seemed fine, but Monday night he cried a lot but stopped everytime I changed his postion. I sent him to school on Tuesday. A this point I had already made arrangements to have the casts cut off on Thursday and made the decision that I was not putting him or myself though a 2nd week of this. I can't stand not being able to see his skin. The school calls me a few hours into the day saying he as crying after his feed and they vented his tube and got a copious amount of rust colored fluid back that appeared to be blood. I called his GI, Nemours (he had started a new drooling patch and I wanted to make sure that it was not a side effect I didn't know of) and his pediatrician waiting on someone to call me back before I took him to the ER. I pick him up and arrange baby sitting for the rest of the kids and I am about to head toward Arnold Palmer in Orlando when Nemours finally calls back. She suggests that I go ahead and bring him in to have the casts cut off and they can test the fluid for blood and call our GI and see what they say. I told her I was upset because I thought he was crying over casts and never thought to vent his tube and that I just wanted them off. So I head to Nemours. They are waiting on me to get there (I really do love the nurse there!!) They cut the casts off and the 1st thing Jacob dose is bend his knees up to his chest and laugh like he just won. As we start dealing with the GI issues and figuring out why he would have blood in his stomach the nurse asked if I had given any ibuprofen. As a nurse myself I should have realized, but it didn't cross my mind, I had given him a total of 3 doses of Motrin since Friday the last being Monday morning and this was Tuesday afternoon though. After discussing the GI I was told to just watch him and not given anymore Motrin. He has been fine since on the GI issues...back to the legs.
The more we sat there waiting on GI stuff the more color Jacob showed in his legs. I was watching his left foot mainly because I noticed his heal looked like it had a white area at the back of it.It seemed to blanch okay though. Then shortly before leaving I looked at his right heal again and OMG how did I miss this he had a nickle size purple area to the back of his heal from the cast. (the right leg is the stronger of the legs and the 1 we have to most issues with) I am so upset at this point. I feel so guilty for letting them put the casts on and not listening to my own intuition on Sunday about having the heals of the cast cut out. I can tell they feel bad as well. We make a plan on how to deal with it. I try not to cry. As of right now the heals are not looking as bad as they did on Tuesday. Today is Friday. They were afraid the right one may open and so far it has not. They look like blisters but have not raised. We are keeping him in keep immobilizers as much as possible and keep is heals elevated off all surfaces. She said no weight bearing either. We go back on Tuesday March 4th for her to reevaluate his heals. He is defiantly happier without the casts and is tolerating the knee immobilizers fine.
|The day we got the casts|
|This is how he slept the 1st night. I was not allowed to put him down.|
|Jacob's victory of getting the casts off.|
I ordered Jacob a bigger special tomato chair as well. We went up from as size 2 to a size 3. The size 2 still fits, but is much easier to get him in and out of the 3. I also wanted to 2 anyway so I can use 1 in his new stroller Advance Mobility Liberty. It fits well. It is nice having 2 so I don't have to constantly move them back and forth to. I have 1 that I can keep in the car for when we go out places. I really love the speical tomato. The straps they built into it are very handy. We use it in the back of shopping carts, the front of some shopping carts like the 1 that are cars, it fits inside like an insert in the special needs swings at the park so he does not bang around in it. On a few ghetto occasions even though this is probably not 1005 safe we have even rigged the seat to a standard swing at the park so he can swing to when they have no special swings. It fits in his stroller for better support and it comes out so he can sit in chairs at restaurants or friends houses. They way he arches and thrusts. It is important that he has something that can stop him from bucking out of things. Still 1 of my very favorite things I have every bought him and I am very happy to have 2 now.
|The NEW chair!|