I had a really really hard time with this surgery. Like I couldn't stop crying. Stupid I know but I don't think a day went by that I didn't call my mom bawling.I was frustrated, sad and so upset over his tone that I felt VERY alone and not sure where to even start to get him help or to figure out something.
On Monday I sent him back to school. He was still a bit gunky but nothing like he had been. Because he was clear of green stuff I thought it would be good for him ( and me) to get him back into a routine. His teacher agreed on the tone and said that when he would get excited and play really hard he could hardly keep his balance. He was encouraged to use his walker and they used the wagon a lot more than they ever have with him. It was very discouraging to me. I thought maybe I was playing the over reacting mom and was "seeing" things but nope.
Tuesday we went to PT and OT and music. He was having a rough day and wouldn't do anything for Jackie ( his OT) His PT was sick so when I went down the hall I heard him screaming so I went in to save the poor girl. Ty was not having ANY of the activities that he was directed to and was throwing major Tyler tantrums on the ground. It was not the best therapeutic session we have encountered. On a plus note Jackie said she didn't notice a increase in his hands just in his legs.
Like I said, I was a mess. I went home and bawled. Part of the day was spent frantically searching for someone who had any experience with increase tone and the other was calling his docs and specialist to figure out what and who was responsible to help us figure out the next step.
I got myself together and called his Rehab doc and left 3 messages ( and have yet to hear back from them.) I called his orthotic dude, Bret, and Brett decided we needed to be seen. He is AMAZING. We got an appointment with him on Thursday.
Before we got into Brett we were sent to do scans and a Shunt series ( the CT for his brain, the shunt series to make sure the tubing is draining in his stomach) the Shunt series was needed to figure out where the old tube was. I wish I had a picture of the scan that showed all of his tubing just hanging out in his tummy.
Right after our scans were done we headed into the Neurosurgeon for a follow up and was able to ask a lot of questions. The info that the neurosurgeon gave me was that his ventricles were so large and went so small in such a short amount of time his brain is in shock. The shock therefore causes him more tone. He rarely sees a kid that doesn't go back to baseline in a few weeks.
Till then we increase his stretching and encourage him to walk and do our best to get him off his toes. He is doing much better. It hurts my heart to see him regress. It was kinda tough on my. I cried.
Bret's appointment was on Thursday and we had a wonderful visit. We rescheduled till 11 due to Ty actually sleeping till almost 8. There was no way to make it to Downtown in less than an hour with a shower. The drive was uneventful and I even managed to make sure I didn't speed as to avoid Arizona's speed cameras.
Bret agreed that his tone had increased and that a few other spots were tight. We talked about his castings and his new braces and what is the best course of action. We have botox scheduled for April. It feels like it is all in slow motion in hopes of the botox working.
We are looking at finding something med wise that will chill Ty out enough to get a good casting. Bret is going to be calling our docs and seeing what we can find out. Along with meds and having Dad there we hope that we can get a good new casting.
We called Dallas as soon as we were done and asked if we could drop by. He had a meeting so me and Tyler decided to hit up the mills on the way home. We got to the mall and ate some lunch and shopped for several hours.
We had a great time and Ty even got to play with some puppies. He had a good time and he was such a good kid.
Friday was a bunch of errands and we had our neighbors over for a BBQ on Dallas new grill. While we were eating Ty decided to sit on my lap and "eat" with me. He had had lasagna before we all sat down. Since he "eats" my food with his hands first he was super messy. He always has to touch my food. ( I think it is his eyes but that is just me) Anyway, He took off with my corn on the cob and took it into the living room. I chased him down but took pictures before we got him to give back the corn on the cob
Ty eating dinner. He had his OWN corn at the time.
It ended up being a good week. I am glad we have some answers to his tone questions.
4 comments:
His eyes are so beautiful in that last photo!
What an emotionally draining couple of weeks you've had. I'm sorry. That's interesting about the shock theory with his ventricles going down so fast - I wouldn't have thought of that. It must be hard to see Ty going backwards a little, but good to know that he'll bounce back again just fine.
What a rough couple of weeks for you all!!!! I'm glad Ty is doing better. It sounds like Ty is getting back to his old self if he is stealing your food.
love the picture with lil man with the corn on the cob!
Although our older preemie problems are different than yours, I just wanted to say stay strong Nancy. Tears aren't weak and fears aren't weak. Frustration isn't weak. Love is strong. Stay strong. hugs,
Rory's granny Cheryl
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