I originally intended to keep all the updates on Jon Jon from Momma bear in one post, but it might get a little hard to follow. I'll keep links in the bottom to previous entries in case you are following along with his progress.
Yesterday, Jon Jon has his second of many surgeries. Momma Bear always explains it best so I'll give you a direct quote:
Just spoke with the surgeon. Jon Jon is doing great and the bowel is healthy and has good blood supply. He was not able to give Jon Jon the J pouch as hoped. Jon Jon's pelvic area is severely scarred due to his disease. There was enough bowel with good blood supply to make the J pouch but the scarring made the area too small to accommodate the pouch. So they attached the bowel directly to the rectum and removed a portion of muscle to allow the bowel to expand. Over time (maybe a couple of years) the bowel will dilate and create a pouch on its own. For now...we can anticipate accidents and more diapers. After the final surgery, Jon Jon may need to be in diapers for up to a year. Some patients do so well that they never need diapers. However, because to the amount of scarring and the severity of Jon Jon's disease, it is likely that he will be in the other group. His next surgery will be in 3-4 months. They have to be sure that the area around the new stoma is completely healed. If they close it too soon, there could be damage to the blood supply going to the bottom part of his bowel. That would make the bowel die and create the need for a permanent Ostomy.
Please be in regular, genuine prayer for our friend! Jon Jon is such a fun guy and I wish all of you who don't know can meet him one day. I know no matter how his recovery goes, it's not going to keep him down for long. There's too much fun to be had and he's not going to miss a moment!
6:00 p.m. - You prayer warriors are impressive! When you take something to the throne - you take it to the throne!! Here's what Momma Bear had to say:
Jon Jon was asking to go home this afternoon but the surgeon wants to wait til in the morning. So...Jon Jon is attending the "summer social" for the GI patients. Poppa Bear and I get to meet with other parents walking this same road, and tomorrow we get to go home!
7/17/14
9:00 p.m. - From Momma Bear:
Update on Jon Jon: Although he is up and around much more than last time Jon Jon is having decreased breath sound on both sides. They are concerned about pneumonia. I asked for suction and saline for his nose so it doesn't drain down his throat. We had to get him out of bed and in a chair so his oxygen levels stay above 90. Even though he was awake they were dipping into the low 80s. If he develops pneumonia that will keep him here and slow down his progress.
7/16/14
2 p.m. - Jonathan was up in the chair for about an hour and even took a stroll around his floor. Momma Bear posted the below comparison picture of his first time sitting up - the top is from this surgery, the bottom is from his April '14 surgery. You can really see the difference! One of the hardest things for me personally is watching Jon Jon lose all color and energy. This is just so exciting for me and I'm not even Momma Bear. I cannot even imagine her indescribable joy!
10 a.m. - Momma Bear says "Good morning! Jon Jon's day will be very eventful.... He already had the tube to his stomach removed. Catheter removed. And he will be getting up to walk today. He is able to cough without too much pain. He did tell me that the worst pain is in his bottom.....of course. His eye is better this morning also." Yesterday after surgery, Jon Jon's eye was swollen. Momma Bear suspects he had an eyelash or fuzz in there that irritated it. Glad to hear it was a short lived irritation!
Yesterday, Jon Jon has his second of many surgeries. Momma Bear always explains it best so I'll give you a direct quote:
Just spoke with the surgeon. Jon Jon is doing great and the bowel is healthy and has good blood supply. He was not able to give Jon Jon the J pouch as hoped. Jon Jon's pelvic area is severely scarred due to his disease. There was enough bowel with good blood supply to make the J pouch but the scarring made the area too small to accommodate the pouch. So they attached the bowel directly to the rectum and removed a portion of muscle to allow the bowel to expand. Over time (maybe a couple of years) the bowel will dilate and create a pouch on its own. For now...we can anticipate accidents and more diapers. After the final surgery, Jon Jon may need to be in diapers for up to a year. Some patients do so well that they never need diapers. However, because to the amount of scarring and the severity of Jon Jon's disease, it is likely that he will be in the other group. His next surgery will be in 3-4 months. They have to be sure that the area around the new stoma is completely healed. If they close it too soon, there could be damage to the blood supply going to the bottom part of his bowel. That would make the bowel die and create the need for a permanent Ostomy.
Please be in regular, genuine prayer for our friend! Jon Jon is such a fun guy and I wish all of you who don't know can meet him one day. I know no matter how his recovery goes, it's not going to keep him down for long. There's too much fun to be had and he's not going to miss a moment!
Continuing Updates
7/18/146:00 p.m. - You prayer warriors are impressive! When you take something to the throne - you take it to the throne!! Here's what Momma Bear had to say:
Jon Jon was asking to go home this afternoon but the surgeon wants to wait til in the morning. So...Jon Jon is attending the "summer social" for the GI patients. Poppa Bear and I get to meet with other parents walking this same road, and tomorrow we get to go home!
7/17/14
9:00 p.m. - From Momma Bear:
Update on Jon Jon: Although he is up and around much more than last time Jon Jon is having decreased breath sound on both sides. They are concerned about pneumonia. I asked for suction and saline for his nose so it doesn't drain down his throat. We had to get him out of bed and in a chair so his oxygen levels stay above 90. Even though he was awake they were dipping into the low 80s. If he develops pneumonia that will keep him here and slow down his progress.
7/16/14
2 p.m. - Jonathan was up in the chair for about an hour and even took a stroll around his floor. Momma Bear posted the below comparison picture of his first time sitting up - the top is from this surgery, the bottom is from his April '14 surgery. You can really see the difference! One of the hardest things for me personally is watching Jon Jon lose all color and energy. This is just so exciting for me and I'm not even Momma Bear. I cannot even imagine her indescribable joy!
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| Top - Today, Bottom- April 2014 |
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| Just going fro a stroll |
10 a.m. - Momma Bear says "Good morning! Jon Jon's day will be very eventful.... He already had the tube to his stomach removed. Catheter removed. And he will be getting up to walk today. He is able to cough without too much pain. He did tell me that the worst pain is in his bottom.....of course. His eye is better this morning also." Yesterday after surgery, Jon Jon's eye was swollen. Momma Bear suspects he had an eyelash or fuzz in there that irritated it. Glad to hear it was a short lived irritation!
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Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests to made known to God. — Philippians 4:6