Saturday, October 29, 2016

SPML....Texas Style!

We flew all the way to Texas to see one of the BEST doctors, Dr, Yngve, whom performs this procedure. SPML is basically tendon lengthening but only TWO doctors in the US perform it less invasively which means LESS incisions, LESS Pain and LESS recovery time!! Dr. Nuzzo in NJ does not take insurance so with the amount of procedures Brendan had done the surgery would have cost over $10,000 probably closer to $15,000. So a trip Texas was still worth it and we saved a ton of money!!

Galveston was an amazing place to stay. It is actually on an island and was a fun place to drive around. We were able to have a little bit of fun before his 10th surgery! Yes number 10. I can't even believe this kid has been through that many. This number does NOT include botox injections so I have officially lost count how many times my boy has been put under anesthesia. I am estimating around 18. 18 times in his 13 years of life. Cerebral Palsy can be a cruel disability but we try to make the best of it. He enjoys his 'mom time' and traveling. We went on a duck boat tour and learned Galveston was destroyed by Hurricane Ike not too long ago. It is incredible how much they have rebuilt. We enjoyed the rain forest cafe and just driving around. He hasn't wanted to do anything since surgery and I can not blame him. Wait until you see his cast!



What did Brendan have done? Rather.... what did I make my poor boy endure because this was all based on my request. SORRY Brendan, one day you really will thank me!
Brendan had hamstring release in both legs, a left groin release with alcohol block, hip flexor alcohol blocks, right tendon transfer in his elbow and lower arm alcohol block. Why? Brendan was very crouched when walking. This causes him to tire very quickly and not gain stamina. He was also starting to hit his knees together while walking. His left hip was also 25% out of socket so all of this was to help him stand straight, walk correctly and loosen up that hip. His right arm is basically stuck at 90 degrees. He can not straighten it. He can not rotate it and he has trouble gripping his walker comfortably. Everything done to his right arm is hopefully going to help his range of motion and rotation. The arm is a tricky limb with a difficult group of muscles and tendons so he did not want to do too much at one time.


I am feeling very done with surgeries at the moment. I actually feel a bit guilty I put him through this but honestly he is seriously one amazing kid. He has his moments when he cries or yells at me or takes it out on me but seriously this kid is TOUGH! He has this huge and uncomfortable cast that practically goes from his armpit to his fingers. He has little holes all over his legs. He has very large bruises on his left leg which is typical for him after this procedure. I can not show you but I want to cry looking at them. He has NOT even complained about his legs. He just hates the cast! He vomited after I gave him the good meds so we skipped them for a few days and he only had advil. He wouldn't stop complaining today about the arm so we tried the good stuff again and so far so good. I am so beyond proud of him. I can not imagine going through what he goes through. I would be a big crying baby.

I have always worried about anesthesia. I have always been anxious while he is under. I think it has lessened over the years. I don't quite have the sickening feeling I once did. I think I got too comfortable because of course he had some issues this time around. They don't really tell you much and play it down but I got bits and pieces of information from the nurses and anesthesiologist. I think if I pressed for more info they would have told me more but sometimes it is better not to know.

He was so Brave before he went upstairs:

Basically he had a bronchospasm while under and they had some issues waking him up. He needed to be suctioned in recovery and his oxygen was low which bought us a few extra hours in recovery. He needed a few different treatments to help clear his lungs and get his 02 levels up. They let us leave recovery and go to a different room where he proceeded to vomit everything he ate and drank in recovery. He got it on his brandy new cast, all over the bed....everywhere. So we got him all cleaned up and then he was pretty happy and re ate and drank everything so we could go home. We didn't leave until 8:30 at night and had to fly to the pharmacy to grab his meds. It was a long day but he slept pretty well!


It is never a dull moment in this life of ours. We keep chugging along. We just live the life we were given. I am actually thankful I am a researcher and have found these surgeries and procedures that help make him stronger and keep his body from becoming completely crippled. I look back at pictures of when he was 2 and I recently realized that if I had done nothing his body would be very different. He would not be walking at all. He would have no use of his right hand. Both hands would be fisted and possibly not very functional. His body would hurt all the time. He would still be on daily medications and he would still be receiving botox yearly. I am really proud of the person he is becoming. He could be bitter, he could always be angry or sad but he isn't. He just rolls with the punches. I think he deserves a break. No more surgeries for a while. I am just going to work him out and get him strong and show him that this really is all worth it!




He has gotten so big!

We can't wait to get back to his siblings!

2 comments:

Sheila said...

So glad that it all went well! I am in awe of not only Brendan's strength, but yours too! You are both amazing!

We take it day by day said...

Thank you. I think I did realize my strength during this trip!