Thursday, August 22, 2013

Dental Surgery Update

Yesterday was the day 6 months in the making. When we last met with the oral surgeon and saw the issue we had. Alvin had 2 extra adult front 2 teeth. While having one extra tooth isn't all that rare, having 2 the way he did wasn't something she sees every day.

We got to Seattle Children's around 6:45 and got checked in. By about 7:10 we were back in a pre-op room getting ready. By getting ready I mean we were doing a lot of waiting between nurse and anesthesiologist visits. By about 7:45 we had seen the nurses and met our anesthesiologist.
getting ready to go back
On a side note one of the things I thought was quite funny this time was how many doctors and nurses I recognized. While we were waiting in our room I saw quite a few nursing assistants, nurses and anesthesiologist that I remember from past visits. Just another sign that we have been there in and through that process far too many times.

We tried to have him take a pre-medicine to help him relax before we went back but this time it back fired and he threw up all over the place.

When we finally went back he was anxious as expected. First elmo got some of the medicine, then bear and then Alvin laid down and fought a little but did  pretty good going to sleep. The anesthesiologist and nurses were all impressed that he eventually relaxed a little and didn't even cry.

When surgery was over I met with the surgeon she told me what the damage was. His first set of adult teeth were deformed and she went a head and took his baby teeth as well. The issue now is that his next set of adult teeth aren't completely formed yet. It could be another 6

months or longer before he has front teeth again! So once again we are on a watch and wait prognosis and have to follow up with his dentist in a few months to check and see how he is doing.

When I saw him in recovery he looked pretty rough. His mouth was swollen and I could see all of the stiches in his mouth. The staff in the recovery room did all they could to comfort him, but he was so upset that nothing helped. His pain was under control but he was so distraught he couldn't stop crying. Finally the nurse decided he was stable enough to go back to a room and get dressed and recover there for a while. Once in his normal clothes he felt a little better and started trying to drink some apple juice. Then he started throwing up blood which just made things worse. After about 45 minutes in recovery he finally started to keep some fluids down and we were sent home with pain medicine.
recovering after surgery.

Now at home he remains pretty swollen. His mouth looks really rough and he is supposed to be on a soft/ no chew diet. This hasn't been easy for him since all he wants to do is eat everything in site and just avoid his front teeth.

Sleeping at home with his bear after surgery
Day 2 and you can see how swollen he is.

So now we watch and wait. School starts in 2 weeks and with any luck he will be back to normal by then.

Sunday, August 18, 2013

The long awaited meeting and next steps forward

A few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.

First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.

The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.

The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.

Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.

The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.

So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.

Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.

Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.