So August started off with a bang of emotions. Joseph went in for surgery on Monday (08/01). John and I were scared that something would go wrong. Joseph was having 2 procedures done. The first was being done by the pulmonologist. He did a bronchoscopy to see why Joseph has a croupy cough when he gets sick and it can depress his O2 levels. We thought it might be due to the earlier removal of a subglottic cyst that blocked about 80% of his airway. We knew there was a large ugly place in his throat when he had the cyst removed so we were worried there was a large scar there. As it turned out the surgery from the subglottal cyst removal was beautiful! There was NO scar tissue! That was the good news but Joseph suffers from tracheomalacia. Tracheomalacia is not a huge problem per se but it can be when Joseph gets ill. When he gets sick is trachea will swell and then collapse as he is breathing out. So we will have to continue to be vigilant when he becomes ill with respiratory illnesses and make sure he is rushed to the urgent care when he gets sick.
The second part of the surgery was fixing his cryptorchidism. What is that you may ask. It is undescended testes. To be accurate Joseph only had one undescended teste and the other was retractable. So the urologist brought both testes down and put them in place. The doctor also discovered that Joseph's urethra was a little blocked with a small bit of skin so that was fixed too.
When my poor baby woke up he was in SO much pain. Of course the only thing the doctor ordered and the hospital gave him was children's Tylenol. When the doctor came by I told her he was in pain and said when he BROKE his collar bone he crawled around on it WITHOUT crying. If he was crying now it was because he was in a lot of pain. So after saying all of the the doctor said ok and walked off. No more pain meds for Joseph. :( Joseph was SLOW in shaking off the anesthesia from surgery but we were able to get out of the hospital about four hours after he was out. I got to take him home and I was able to give him some of his pain medicine left over from when he broke his clavicle. Once I did that my poor baby felt SO much better. The next day he was pretty much as right as rain. He had a few times where he cried a bit when he fell in the floor and landed on his rump but otherwise he played and had fun.
On Tuesday (08/02) Joseph missed therapy. He will be out of therapy for two weeks while he recovers from surgery but Margaret and James went. Then at 2pm the Nevada Pep worker came over and talked to me for a bit.
Wednesday (08/03) there was therapy again for Margaret and James from 10am to 12pm.
Thursday (08/04) I took James to see Dr. Moore. It was a useful visit because we were able to discuss Joseph and Margaret first. First we talked about the blood work and then I asked about adding a few more "problems" to Josephs LONG list (autoimmune hypothyroidism and tracheomalacia). Then we discussed James. James was diagnosed with autism. He is either a VERY high-functioning autistic or he has Aspergers syndrome.
On Friday (08/05) I made a TON of phone calls trying to find someone who will take the respite voucher from the Desert Regional Center. So far I have not found anyone. Then we had an appointment with the neurologist (Dr. Raja). To start off with our appointment was at 1:00 and 1:30pm for Joseph and Margaret. One o'clock comes and goes. The waiting room is small and the children only have one toy to play with. Then as two o'clock approaches we are finally called back. We go into one room where I they weight and measure the children. Then I am asked why I am there. I tell her it is the follow up appointment for my children on their MRI and I had a list of items I had put together to ask the doctor.
When I finally see the doctor James decides to act up and be a pill. We are trying to talk to the doctor but James is crying and touching everything. I ask John to take James out of the room. As I am trying to talk to Dr. Raja and have him answer the items I have on my list I get a call from John saying he is leaving and taking James home. I spent the next 20 minutes trying to get Dr. Raja to answer my items on the list but he avoids it. He wrote some lab work for Joseph to recheck his amino acids again since they were off and he ordered a microarray DNA test. Dr. Raja also thinks that the brain injury described by Dr. Orrison from her MRI is not as bad as Dr. Orrison makes it out to be.
Now what makes this interesting is that Dr. Raja is a neurologist (brain specialists) and Dr. Orrison is a specialists that reads radiological films. Dr. Orrison is so respected in the field that he used to edit a professional journal and wrote a text book. I would LOVE to be there while Dr. Raja tells Dr. Orrison that he does not see the extent of brain injury Dr. Orrison described. It would be a VERY interesting conversation!
This was my week and I am sticking to it....lol.