Update

Jack has had a bad cold since last weekend. It is frustrating because he is on two different antibiotics for the stomach issues. He is on allergy medication also. Still when he got this cold it was pretty nasty. He was not sleeping well and of course it went to his chest. He is doing better the last few days. He is still snotty and having a cough, but doing better.

Jack went to the ENT last Monday. His specialist here had refereed him a while back. It was one area that had not been on the priority list and He thought we should check it out. The appointment was OK. I have mixed feeling to say the least. They want to take Jack's adenoids and possibly his tonsils out. He said it would stop the snoring and possibly help with the recurring colds. There are some issues that can happen to any kid who has this procedure. Jack is at a greater risk for complications due to his disease and low tone. If some of these complications occurred they should be able to fix them , but it would require more surgeries. Also normally this is an in and out the same day procedure. Jack would have to stay in the hospital to be watched for these complications and due to the disease. For Jack it would be a minimum of 36 to 48 hour stay. The ENT is sending the report to both his specialist's and his pediatrician. He is setting us up for a pre operation appointment and we can go from there. I am very unsure at this point what to do. Jack has gone through enough in the last year. It is not just a simple procedure like it would be for a regular kid. There are so many what ifs.

Jack is scheduled for the MRI for this Monday. He is still sick so I called them. Last time we got there and they would not put him under due to the cold and reflux. They were afraid of him aspirating. When I called yesterday they said since we have already put the appointment off and they cant get him back in for about 4 to 5 weeks for me to wait till Sunday. They will have an anesthesiologist call me Sunday and we will go from there. He is getting better so hopefully we can have it done. The procedure it self is not what worries me. It is the fact that this procedure he will be under for possibly two hours. They said if everything looks fine and it goes quickly he would be under 45 minutes to an hour. That is the best case scenario. Jack has done fine with anesthesia during the scope and the surgery in Cleveland. He also had a MRI about two years ago and he was OK. It was a brain MRI though, and they do them quickly. Him being out for a longer period of time increases risks for him. As of today he will be getting it done on Monday. We will be up at the hospital a long time. They have us come an hour early to begin with. Then the procedure set up time, procedure, recovery ect... It is hard because Jack's father works two jobs and I will end up being on my own. It will be a long day!

Please keep Jack in your prayers. Pray he is well enough to have the MRI done. Please pray that him being under longer doesn't cause any issues. We ask that everyone pray all goes well.

Keep us in your prayers regarding making the best decisions for Jack. It is very hard to know what the right decisions are for him. He is doing better right now and seeming to be coming out of this down turn he had been in since April. It is easy when he is doing better for people to under estimate the disease and how serious things can be for Jack. Please pray we as his parents make the best choices for him.