Update

Jack is still having a hard time. He is not eating and he is drinking minimal amounts. I called the ENT and they wanted to see him. He said he is borderline dehydration and he said that he was on the fence about admitting him for hydration. He is not pleased with his eating, drinking, and urinating. He said he didn't want to have to put a IV unless totally necessary. We decided to watch him the next 24 hours and go from there. I feel confident that I know what to look for. I also think disease wise Jack is better off home. He lost a pond and a half. For Jack that is not good. The doctor wrote me a script for some anti nausea medication and told me to fill it if necessary. He doesn't want me to fill it unless necessary due to some of the side effects. It is hard because Jack is having all the GI issues to know exactly what is the cause of the not wanting to eat. We are suppose to travel this Friday to Rochester for a GI second opinion. We hope Jack is well enough for a trip.
Jack himself doesn't want to go back to the hospital . I have told him unless he starts drinking that is were he will have to go. He is doing a little better the last few hours with the drinking. We are hoping to see him perk up. Day 5 is a hard day after this surgery according to the ENT. Due to Jack disease any surgery or procedure is harder. It can throw him into a down turn. Hopefully this will not last too long and Jack will bounce back. He was having a lot of GI and leg pain before the surgery so this just adds to it. It is just hard to see him in pain. Seeing someone you love, especially someone so little in pain day in and day out in one way or another is tough. It is just amazing how well Jack does. He is such little trooper. He is brave, strong in spirit, and just plain amazing. God is good!

keep praying PLEASE

Please keep praying for Jack. He is having a really rough time. A simple procedure for most kids is seeming very difficult for him. Part of me is not sure debating the doctors and talking them in to him coming home was necessarily good. With Jack we never know what decision we make is the better one. He is sleeping better here, but hydration is becoming a huge issues. He also cant get he anti nausea medication at home. He perked up the eight hours he had it. Then yesterday was not eating or drinking well again. Then last night perked up a little. Then in the middle of the night or should I say early morning started throwing up. He couldn't even keep water down. He will not eat and we might be at the ER tonight if he doesn't improve. He did in the last two hours begin to hold down water. He was trying to nap and coughed and woke up crying. The lack of fluid also seems to be causing extra leg pain. So his legs hurt and his throat really hurts. Due to all of this and the disease he is full of fatigue and very low endurance. He has black circles under his eyes and this is taking a lot out of him.We are also still on the watch for some of the complications that may arise. I think I am possibly starting to see one. We will keep a close eye the next few hours. Some of the complications can arise as late as week three.

Anyways I wanted to update the blog for those of you who are wondering. Also the only thing we can do is ask for prayer. It is are human nature to worry, but we are trying to put it in God's hands. Please pray if you have a minute, and ask the Lord to help Jack get through this.We are hoping we don't end back up in the hospital, but if it is best for him then so be it. Please pray that the Lord gives us strength and wisdom.

update / thank you

Jack just got home a half an hour ago. They wanted to keep him because this morning he was not doing well. He was not eating and drinking and was throwing up and just lying around. Once they gave him some anti nausea medication he started to drink. He did not sleep well and we convinced them to let him go. The medication should last eight hours. After that if he starts throwing up or not eating or drinking again then we will not have to take any chances because of the disease and possible bleeding and go right to the ER. As far as the surgery he had the adenoids and tonsils taken out. He did have a hard time coming out of the anesthesia, but not to horrible and they expected it a little due to the disease. Please pray he doesn't keep up with the GI stuff when the medication wears off. He was crying all morning and has really been down and out. We gave him a bath and he is resting and acting OK right at this moment. He slept very poor and is having a lot of pain throat and legs. He is experiencing a lot of fatigue and his mito stuff is acting up probably because of the stress of the procedure and his endurance issues. We just ask everyone keep him in your prayers for the next week or so. He will have to lay low and he is at risk of infection.

We also want to thank those of you who called or emailed to see how Jack was. It means the world to us.

Prayer

We are just asking that everyone keep Jack in there prayers this week. His surgery is this Thursday. Even though it is just to get adenoids and tonsils out for Jack it is a big deal. It is not a in and out the same day thing for him. He has to stay in the hospital for a couple days and that is if everything goes fine. Being put under for Jack is a big deal. If that all goes well then he is at a much higher rate for some complications due to his disease. That is why he has to be watched for a couple days. Please pray that one, Jack stays well and can have the procedure done. Please pray that all goes well and he doesn't experience any of the complications that he is at a much higher rate to experiences. Please pray the time in the hospital goes well and Jack is not in too much pain. If all goes well we will only be in the hopital for a couple days. Depending on if we are there longer or not will depend when I can update the blog again. I will update the blog on how Jack did as soon as I can.

Jack has still been having a lot of leg pain at night and increased pain during the day. The GI issues are still there also. Please pray this all gets less in the next week.

Thanks for all of you that sincerely care for us and are praying.