Wow! That's all I can say about Hayden's appointments today. I don't like to be caught off guard and we were today. We left early this morning for Minnesota again. Thank goodness we didn't have to get on the road before Starbucks opened. No road trip should begin without a Caramel Macchiato! This time to have our first appointments with a ortho and the sleep clinic. I don't even know where to begin. We are not used to having a doctor who tells us what to expect in the future and the ortho doc did just that today. While I was completely stressed out by what he told us, I was very grateful for the information. I LOVE to know what we can reasonably expect for Hayden's future.
His legs were very tight on exam, especially his hamstrings and his knees. Neither one of his knees could be straightened. When laying on his stomach, his pelvis could not lie flat on the table. We see this in him every day, so that was not what caught us off guard, it was the x-ray of his pelvis. Thankfully, I reminded his physiatrist that she wanted to take x-rays when we were there in February so there was something recent to compare today's x-rays to. Hayden's left hip is 70% out of socket!! Dr. Sundberg was visibly concerned about such a large change in his hip in such a short time. He told us Hayden needed surgery on that hip ASAP. He wouldn't know if he could just cut the adductor muscle or if he would have to shave bone to get the hip back in socket. He would do a dye study of both hips at the same time Dr. Deshpande (the physiatrist) had him scheduled for his Botox and phenol injections. The results of the dye study would give him the best information to determine which surgery he would have to do. The type of surgery would also determine if Hayden would be in the hospital overnight or for a week. It would also determine if he both of his legs will be in casts from toes to hips with a bar in between his legs, or if he will be in a body cast. It was obvious that he wanted Hayden in the OR as soon as we could work it out, but he said that Hayden's hip wasn't going to suddenly dislocate. So, we had time to get things worked out with our jobs and someone to watch Nicholas.
As if we weren't already freaking out about possible bone shaving and a body cast, he also talked to us about a Baclofen pump for Hayden when he is big enough. This thing is huge! A little bigger than a hockey puck. The though of another thing implanted in his little body that would be connected to his spinal cord and resting in his abdomen is very scary. I can feel my heart beginning to race just thinking about it.
It was very clear that we were going to have to find even more time to devote to Hayden's legs that are becoming tighter and tighter each day. He needs as much time in the stander as he can tolerate and there is no such thing as too much stretching or massage for him. The more loose we can keep his muscles, the less his inner thigh muscles will pull his legs across to the other side of his body causing his hips to be pulled out of socket.
By the time we got to the car, I wanted to throw up and cry. I was completely devastated for Hayden. I did learn a fun new word...acetabulum (hip socket). It is very fun to say. I am pretty sure I will be working it into every conversation that I can.
Next, we went to Hayden's sleep clinic evaluation. That had to go better, right? After speaking with Dr. Garcia, a fellow Iowan, it is pretty clear that Hayden has sleep apnea and will need a sleep study to determine treatment. He was very impressed about all of the things we knew about Hayden while he sleeps. We just told him things that he usually asks parents and they do not know the answer to. Tony and I were completely stunned that parents wouldn't know something as obvious as their child's snoring changing based on position. We discussed CPAP for Hayden at night and decided that we would probably not pursue that unless it is absolutely necessary since he is already covered from head to toe in braces at night. It is very likely at his age he would keep it on anyway. Removing tonsils or adenoids may be a possibility. Hearing that all I could think was...NO MORE SURGERY, PLEASE! The best words we heard all day were that we didn't have to worry about Hayden passing away suddenly in the middle of the night from sleep apnea. That one sentence made the entire day better. Since he has had it for so long and done well, that was not something we need to worry about.
So...sleep study it is. We will do the sleep study the night before we come back up for hip surgery and injections. We really need to find Hayden something besides doctors to collect!!!
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