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So we are back in the hospital. J was a mess on Monday just totally not himself and I knew SOMETHING was up. Then he started vomiting horrifically and screaming in pain. Called the ambulance and brought us right in for emergency surgery. J's intestinal tube migrated. We were warned this may be a problem because the original tube they placed was on the larger size for his weight. 4 grueling hours later he was out of surgery and recovering well. MUCH better than the last time. We spent most of yesterday just monitoring him. We let all his insides just drain and gave him IV fluids for hydration giving his entire digestive system a rest. They did a contrast scan to check the tube placement and found that his stomach is emptying even slower than before. (He already has delayed gastric emptying) so it took forever and poor mister ended up vomiting up most of it We had a nice calm night draining and you could see his little belly deflate. The difference was shocking. I didn't realize he was so distended but it was So scary to see him so skinny :'( Then they tried to clamp his drains and he started retching and screaming again they brought him back down to xray and we came back up to wait for the results. We were watching TV when a bunch of doctors came rushing in and explained he needed to go for another emergency surgery right away for a small bowel perforation. J already had one surgery on his small intestine a few months ago and had a small part removed well in a nutshell the pressure from all the air building up as well as the pressure from the food coming and the length of the internal tube being so close to that old surgical site caused it to weaken and tear a bit. It was small but still an emergency. They went back in and repaired the tear and shortened the tube so avoid the compromised area. They slowed his rate and now on a different venting/air regiment. New meds to help his bowel motility and keep his belly soft and the air outside where it belongs. It breaks my heart to spend another holiday here, another away from my girls. My little princess had her first Valentine's day at preschool and I wasn't there to do her valentines or help her open her cards or anything and it tears me to pieces. On the bright side J is doing fantastic now after surgery. He came out of recovery quickly and was all smiles. Everyone remarks how he is the "happiest little sick kid!" The entire time we have been on this journey I have always looked around at all the other patients and my heart poured tears for these families going through so much with their kids so sick. I remember thinking God bless us that our son is not that sick- well it is a very real raw beach slap in the face when you realize sitting there with food and drain bags and tubes and wires and everything else that your son IS that sick. It's a very earth shaking experience. But we push on one moment at a time. We work with what we have and give incredible thanks that we are in the best care. We rejoice that J is still with us and we give praise that we will be taking him home in a few days where many here do not have that blessing.
Aw, Jenna I am so sorry you have had to go through so much! I hope they get it sorted out this time so you can finally be home and find a routine for him that works well. So glad you got through the blizzard (loved the pic of him in the big hotel bed!) and thanks for keeping us updated!
Owen James (7/12/08)
Natalie Laura (9/14/10)
Harrison Dean (2/22/13)
Proud Member of the September 2010 Playroom
Oh, Jenna! I can't believe how much this poor sweet little guy's already gone through! I hope those emergency surgeries completely fixed the issue and he doesn't have any more problems with his digestion in this. You have a blessed little miracle on your hands. He is here to remind us of the importance of life, love and laughter and I bet he has a HUGE, wonderful future ahead of him!
__________________ Gwynne, celebrating the newest of our four precious miracles Hat's off to Vicki for my cute siggy, thank you!
What a tough little cookie you have there! I am sorry you had another holiday away from family, but I promise those girls see you as such a strong supportive mommy. You are doing absolutely amazing with all this. I will keep praying!