Trip Report

The trip to Cleveland went well. Thank you to all of you who prayed for our safe travel. The weather on the way there was a little bad. The way back was fine. It was a long day, but both of the boys did well. It is easier to stay over, but this was the cheaper way.


The appointment went well. We basically just update the specialist on all that has gone on the past 6 months with Jack. He does an exam and goes over everything. He ended up giving me a letter that I was already supposed to have. It states about Jacks conditions, precautions and ways procedures should be done. It is signed from the mitochondrial disease specialist. He said that the tonsil and adenoid procedure with jack was not done in a correct manner for Jacks condition. He said that is why Jack did so badly with recovery. He said that was why he got dehydrated, sick and ended up missing so much school. He also said that all these tests Jack has been being put under for he has not been getting proper treatment for his condition. Jack is not supposed to fast. If he has to fast or be put under he needs to be admitted first and fast only while getting IV fluids. He also with the surgery should have never been released so soon. He said it would have been a minimum of 4 days in the hospital for a kid like Jack. He said Jack is being treated like a regular kid and shouldn’t. He also said we have been lucky and it could be very dangerous for Jack. I told him I spoke to the surgeon prior and told him what I new about the disease and was told he would be in the hospital a minimum of 3 days. I also said after the surgery I never saw his ENT surgeon again. The nurse new nothing about Jacks condition and the doctor doing rounds only new a little. He told me in a situation like that use the letter. If I am not being listened to I can call him at anytime. He has his beeper 24/7 and that is what he is there for. He said out of 6 months, calling him 1 time a month is normal. He said some parents call 3 and 4 times a week. He over sees Jacks case and that is what he is there for. He also talked with us about Jack's reoccurring infections. He talked to us about injections. There are pros and cons and we need to think about it. We talked about the GI issues and the tetany. He gave us a script for a pain medication to use at the onset of the tetany. He also took him off of some other medication for nerve pain he had him on. It was not helping so why leave Jack on it. As far as the GI issues he says Jacks medication has not been changed long enough to see an improvement. We will see how it goes and call him. He did an EKG. He ordered some extra blood work. He asked us to check with the specialist here regarding some other tests to make sure they have been done. Jack does something with his hand that concerns him. He wants us to watch him and update him on that in 6 months. Jacks growth looks good. Cognitively and developmentally he is still on track or above. He is concerned that Jack has had pneumonia 5 times and is only 3. We will be watching that. He said he sounded pretty good. The asthma is going to be worse because jack is sick so much. Regarding the chronic sinusitis, he said get the allergy testing finished. He also said to not let anyone do a surgery or procedure with out me and them talking to him. In 6 months hopefully I will know more about the sinus and allergies and can report back to him.


All and all the appointment went well. It is truly a blessing to see probably the best doctor in the US for Jacks disease. He does all the case studies for the UMDF. He gives us hope. He said in 2 years from now there will be more tests available for more answers. He also said some of the procedures Jack has had were not available 5 years ago. He gives us hope for Jack future. He is such a young and smart doctor. God is truly using a young doctor like this. What a blessing he has been to us. We thank God for allowing us to get hooked up with the best of the best. Jacks specialist here is excellent also. He doesn’t specialize in the disease, but has all the cases here and is a great guy. He leads us in all the right directions. He will admit if unsure and point us to the specialist for the disease. Both doctors email regarding Jack and other cases. It is good to know they are connected.


It is frustrating to know I have been right regarding how Jack has been treated. I tell these doctors and nurses and they either don’t listen or say they are going to check with the specialists and don’t. I know now I will be more aggressive then I have. I am sure they will love that. I will pull out the letter and if they still don’t want to listen I will get the specialist on the phone. I have to for Jacks sake. We are lucky he hasn’t been harmed nor had any other hard recoveries. Not many physicians know that much about Jack. They also look at him and assume it is a minor form of the disease. Little do they know his muscles are being impacted greatly and he can crash quickly. I am sick of people assuming and not understanding. I have gone through this with Jack with therapists, and even friends and family. People look at him and at times think he is not that bad. I say come live with him. Be here at night. Spend a full 24 hours with us and you will see. He has Ok days. I haven’t seen a good day in a year or more. Every day is full of obstacles and most of all pain. He has to be watched so more carefully then people realize. Yes, he could be worse, but because he is not mentally handicap he is not that bad? I have to be so careful with him and have been right so many times. He gets very ill quickly and I have to be on point.


Thank God he has had his hand on Jack. God's hand is all over Jack. I believe in faith what the word of God says. I expect the Lord will do what he says. He is the author of Jacks story and is going to use all of this for His purpose and glory.

Update

Jack is a little better. We took him to the doctors on Friday. They said his ears still looked bad but could see a little improvement. His chest didn't sound any better, but was not worse. We have to take him back this week to follow up and go from there. He still is having trouble breathing but seems to be a tiny bit better.

We are just praying the medications work and he can get rid of the pneumonia all together. Depending on how he is doing he does have a appointment on Friday in Cleveland. We will see if he is well enough to take him as the week goes on.

I will update the blog regarding Cleveland, his last GI appointment, and the pneumonia towards the end of the week.

Pray for Jack Please

Jack is not doing so well. Even though he has been on antibiotics for bronchitis he has not gotten better. Yesterday in the early morning we took him back to the doctors. That night he had been up crying complaining of his ear. He also is still coughing and was having trouble breathing. He stopped breathing 2 times. It was only for like 10 to 15 seconds, but it happened.

After a examination and a chest x-ray they said he had a nasty ear infection in both ears. The cronic sinusitis is still there. They also said after getting the report from the radiologist that he has upper lobe pneumonia. They put him on a much stronger antibiotic. They talked with his respritory doctor who put him on an oral steriod. We have to go back in 48 hours. If Jack is still not responding to treatment then we would go to the next step.The next step would be to possibly put him into the hospital.

Please pray Jack responds to this antibiotic. We do not want to have to go to the hospital.

Jack is acting pretty well. His spirit is high. When the pain medication wears off then he complains, but other then that he acts OK. I can tell he doesnt feel well because he is not eating well. He is also having diarrhea. Diarrhea alone can be a issue for Jack. We are just praying the pnemonia gets better and the diarrhea stops.

I had started a blog to update everyone on Jacks last GI appointment. He also has cronic sinusitis. The ENT and allergist are dealing with that. I will update all this at a later time.

Please keep JACK IN YOUR PRAYERS. He is a trooper. I am sure he will be fine. God is in control.