Daniel has been home now for a month. It is more and more apparent with each day that we made the best decision in bringing him home. We cringe at the thought now of how we were almost talked into placing him in a convalescent home especially since he has become more aware than he was at the hospital. We know in our hearts that Daniel would have gone down hill being there and he is so happy and comfortable in his own home and with the family that loves him. We love having him home so very much and when we went to Children's Hospital last week for appointments I was overwhelmed by a sense of sadness of how many months I left to go home without him. We told him that this time was only for appointments and he was coming home with us after we were done!
His doctor appointments went well...not what we had hoped for but they were okay and it was a nice trip out of the house for the day. He saw Orthopedics and Neurosurgery. At his Ortho appointment they took X-Rays of his right leg with the broken femur and it is showing bone formation around the joint. He needs Physical Therapy badly, however he cannot bend his knee due to him not getting the botox injections in that leg because it was casted at the time. He received Botox in other areas of his body that had the muscle spasticity, but just didn't get it there. So they will see about him getting Botox at the next appointment...Why they wait so long is beyond me, this is Children's Hospital, one of the best in the country??? If the bone continues to grow around the knee joint, they will have to operate and shave the bone. He also got casts in both of his feet. The increased tone he has due to his brain injury is causing him to point his feet downwards and the orthopedic foot braces just aren't holding his feet in the neutral position. In three weeks, if the casts aren't helping, he will most likely have to have surgery on both of his ankles, tendon release. It's where they cut the tendons...ouch! Daniel picked out the colors of his casts, they had a whole line of colors and I asked him to stare at the color he wanted. However, green and yellow were next to each other and I was positive he was staring at yellow while Dave thought he was staring at the green. So...he got both!
Neurosurgery was a waste of our time, literally. We didn't even get to see Dr. Levy, who performed his brain surgery. We saw the nurse practitioner. She just took a look at how his bone flap was heeling and had no other answers for us regarding his progress and the possibility of rehab. They don't follow up on that, the rehab doctor does. But, Children's Hospital doesn't have a rehab doctor till January because Dr. Revino left and it is taking a while to replace him. So who follows these cases??? Nobody seems to have an answer on that one either. We told her of all the wonderful things Daniel has been working on since he's been home and apparently that's not enough. (I'm guessing they want the poor boy to jump through hoops). We were told that he would need to follow simple commands and he is doing that, inconsistently at times, but he is still doing it and working his best at it. We were told that he needs to do more. I was pretty peeved because at this time I think his muscle spasticity prevents him from doing a lot of things, but the things he has been doing I believe they could work with and he would benefit from this. He now can lift his neck up when it drops, it takes a minute or two but he can do it and you can see the effort involved. He will turn to look at you if asked. And he is still trying to lift his right arm. He is getting better each day with swallowing a little at a time and is now up to getting very small ice chips in his mouth. He chews them and really enjoys the moisture for his dry mouth. We are working with him on these things to help strengthen these efforts, but we aren't experienced in rehab and therapy.
We are still anxiously awaiting his Occupational/Physical Therapy to come through. Supposedly that will start in October. Occupation Therapy came last week to evaluate him and Physical Therapy comes Wednesday for their evaluation. He needs new braces for his arms because they no longer work. I was told that in October the Occupational and Physical Therapist will start seeing him on Wednesdays together. We were told by the hospital therapists that he would need therapy three times a week at our home, but it seems that has been changed now. I have big gripes with Children's Hospital at this point, it seems that if your prognosis is poor, they are quick to write you off. No matter what the case may be, I have learned that you have to fight for the care they need and deserve.
I want to express our family's grattitude to Light & Life Church and School. Without their support, prayers and love, I don't know what we would have done. They have been a blessing to our family. We love you!
Our first month at home and Daniel shows more and more improvement everyday!
Love, Faith, Cookies & Brownies!
Jennifer, Dave, Daniel, Sissy, Maddie and Grandma too!
