Thursday, April 30, 2015

Orthopedics and Oncology- All in one pretty package!

Mid February I called to get into one of our many specialist to get a script for AFO's or SMO's or something to get Ty braced. I was hoping to get it done before anything drastic happened. We visited with our Neurosurgery first in hopes that we could easily get the script and head off to Brett's and be done. But Dr. Shafron had other ideas.

D. Shafron felt that it was time to talk baclofen. And not just baclofen pills but baclofen pumps. He didn't feel that he could write the script for the orthotics but really wanted us to do the baclofen trial. He checked our weight and was excited to see that Ty qualified for the pump by about 4 pounds... YES 4 pounds. This thing looks like a hockey puck in their bellies. I have not wanted to even do the trial. We were even offered the trial in Utah and I just couldn't do it.

See- This is NOT going to fit in my kids belly. He is so, so little.  The other problem is adding another foreign body in his tummy makes me want to throw up a little. Adding his shunt into the mix is something I do not want to do. Adding a shunt and the pump, puts his shunt at a 90% failure rate. That is not something that I can do to him. I just can't do it. 

I tried to politely decline and he said I could call Marie, his nurse and set it up any time I wanted. Then I of course, did a shameless plug for the Hydrocephalus Association and our WALK and he said he he would get his office staff involved and he sent us on our way.

Since he wouldn't give us the braces I needed to get in with our Ortho doc. Low and behold we found out that our beloved Ortho was leaving. I was devastated. I might have cried just a little. 

Dr. Shrader has been the BEST orthopedic doctor ever. He is kind and patient and sometimes he just sits there after he talks to us and lets us cry and offers us a side hug. And he says "I understand" and he doesn't just say it he means it. You see. He has triplets. 2 of them have cerebral palsy. They have gone through summers of the same surgeries that he asking us to go through. He will walk you through everything that you ask of him.  But you see, these triplets, they grew up and are going to college. And he has done such a great job of raising them that they are moving back to Mississippi. And they are going to continue to grow and strive and him and his wife are going with them.

So we saw who he recommended. Dr. Emily. Dr. Emily is a very nice doctor. First time we met her, she was running late and we were tightly scheduled with oncology downstairs with a transfusion for Grayson. It was our last one and we just kinda wanted to get done. So she came in, and she said he needs surgery. Bracing won't work. Bracing would be stupid. I am not writing a script. I was SO mad and got SO defensive. She didn't want to tell me exactly what she wanted to do right then because she didn't have the results of his gait lab. So she scheduled another appointment and sent us downstairs to oncology.

Oncology just SUCKS. Grayson was there for his final FINAL appointment and we did do blood and a small infusion just to finally get him up to where he was finally on the scale. But we were there in he time of needing to wear masks and it was just a MESS.

Trying to keep masks on a kid with sensory processing disorder and a 3 year old is nuts. But they did a great job. We left after the infusion. Stuffed our faces with muffins and left. I always feel DEPLETED after a trip to the hospital.

We made another appointment for Orthopedics while we were there and we were allowed to pick up our BIG HUGE TOY and Grayson batted his eyes and got Tyler a BIG HUGE TOY too. ( Let me tell you, 4th floor gets NO toys. We don't even get freaking stickers up on the 4th floor, but the oncology floor, you get SETS of toys!!......) Grayson was released to go and get his blood tested monthly with his pediatrician and he was so relieved.

I do have to say, having this experience with Grayson has cause some major damage to his little brain. He is HORRIFIED of hospitals. He is OK going with us for Tyler. He is fine with watching things happen to Tyler but to take Grayson in for an appointment for himself is literally the most devastating thing that I have seen in a child. Tyler has had 100's of procedures done on his body but he doesn't have the same anxiety that Grayson does. When I was asking for advice from some moms in a sports group, I was flat out told that Grayson wasn't old enough to remember that I would be gone or that we would be at the hospital with his brother. That is by far one of the most false statements about Grayson.

Grayson has anxiety and starts to cry when he sees show about hospitals on TV. When Tyler was hospitalized back in November, Grayson came with me to check him in and the nurses were upset because Grayson was not old enough to be on the immune- compromised floor.  But he wouldn't leave my arms. His dad was on his way, but he was so anxious.

Novembers Overdose and hospitalization- 

 His dad said he didn't leave his side as they were leaving. When they got home he wouldn't even let his dad leave the room. This lasted for 2 days while we were in the hospital. While it might not damage some children, Grayson is VERY tenderhearted.  So for Grayson and this release from the oncology ward was HUGE. For Grayson for this upcoming surgery is DEVASTATING.

*For those that TRULY think that having a special needs child and having them have physical disabilities with major surgeries often ( and I don't even think we have had it OFTEN) It truly does impact the entire family, but it impacts the siblings of our special needs children. We often refer to our Special needs children as super heroes, but the overlooked heroes, are those who stand by as the sibling watching and being pushed aside.*  ( Sorry a HUGE, TALL, Soapbox!!*

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