Friday, March 26, 2010

Jonathan's medical update

Jonathan is starting to feel better from the nasty virus that ran through our home. He has a cough, yucky nose, and low grade fever as of today. On Wednesday he was very sick and started having stomach pains. He kept pointing to his side and placing his hand over his G-tube. Around his G-tube site he was having some clear drainage, this isn't a good sign. I change his tube out every 3 months and just changed it on March 14, so I didn't think the balloon was leaking. I checked it and the balloon was filled with the right amount of fluid. So, we knew then the drainage was coming from inside....sigh*

Arthur and I decided it would be best to take him to T.C.Thompson Children's Hospital where he could see his GI doctor. They took Jonathan right in and first thing checked his weight. He was due to go next week for his weight check anyway, as I mentioned in January last G-tube Update Jonathan has lost a little over 2 pounds in the past 3 months. May not sound like much but for him it's a big deal, he needed to have maintained his weight or gained. He did however grow 2 inches, that was a big surprise. So, Jonathan has gone back on his Pedisure 2 cans a day, to help supplement his diet again. Now to the drainage, it was indeed coming from inside. They think we may have to change out the size of G-tube he has to a bigger one, because the drainage is coming out around the sides. We are going to keep an eye on it and make sure it doesn't continue to do this (it has already slowed down). The cause for all the pain Jonathan was experiencing was from the virus and the drainage. The virus has set in around the skin/opening where the tube goes in, and the drainage is acidic and irritating his skin.......can we say inflamed! Poor boy it was like his skin was on fire. They (burned) the inflamed skin area with silver nitrate to help deaden the area. (I do this at home once a month, but they really fixed him up!) He never likes that to be done, and this time it seemed even more painful. Yet, as always he was a brave boy and took it all like a big man, such a trooper!

On another medical note, Jonathan was scheduled to have another set of PE tubes put in this month. Just 2 days before he was to have the surgery insurance said that they wouldn't pay for the surgery, because they don't find it medically necessary. Not sure how they can say this, when the ENT remember Dr. Guru from PE tube set #11?! Well he was very nice and said Jonathan "needs" this surgery NOW! He also did another hearing test and said Jonathan's hearing is worse than it has ever been. (Dr. Guru and Jonathan's pediatrician are doing all they can to help us stinks!) This he didn't have to tell us. It has gotten so bad that often times he doesn't hear me talking to him at all, because of the tone/pitch of my voice. He always hears his Daddy, but even he has to speak loud. We are geared up to fight for his rights for this surgery. Again I know it's not a cure, but it helps so much even if it's temporary. We also know one day the tissue won't allow for another surgery, but until then we will face this battle head on.

My last post on Jonathan's feeding tube, I mentioned several things that we would be praying for and about. We have continued to pray for these things because we are a family that believes in the power of prayer. One might think we would be disappointed that what we have been praying about hasn't been given. We aren't disappointed at all for we know that the God we serve knows better than we, and HE has been ever so faithful to us time and time again! So, we rejoice for what we have been given , and take our burdens and lay them at His feet. We would welcome prayers for Jonathan and his health.


Rachel Addison said...

Munck Family ,

I will be in prayer for you all!

rachel bryant

misslynda said...

Poor Jonathan - - he has had a very rough week! I know you have, too, because it is tiring to care for children but it is even more difficult to see your child suffer physically.

Amy said...

Sorry to hear about Jonathan but you're right that God's ways are not our ways. Thy will be done, Oh Lord, for Your glory alone. I will be praying for Jonathan and you during this difficult time.

BTW, be praying for us as well. Rob is being ordained for the ministry and will be added as the second pastor at our church tomorrow night. He has been preparing for this for several years.

Beth said...

Poor Jonathan!! What a trooper he sounds like! Will keep him (and you all) in our prayers!

JennyH said...

I have never had to deal with a G tube (or any feeding tubes) but that sounds a little painful. If he gets a bigger one, that means surgery, right? I hope the ooze has stopped and he is not bothered by it.

What a pain about insurance and his tubes! Hopefully the ENT will get them straightened out.

Jonathan sounds like a trooper!