On July 15th 2009 I was blessed with an amazing gift from God, my son Brody. He was so precious. They estimated him to be just shy of 37 weeks, which is why they said my son was
having such a hard time "learning to eat". For about 2 weeks after he was born he just didn't want to eat and if he did it was an amazing struggle. I was so depressed wondering why my baby didn't want to eat. Did he just not want to live? Finally after many LC appointments he began eating normally. But then his stomach got so descended he looked pregnant, and it was hard too. The Dr. saw this at his 2 month well visit check up and said he was fine. Soon after that visit he got severely constipated. This went on for 3 1/2 weeks. He would not go to the bathroom at all on his own. I called the Dr. numerous times he said to try juice & anal message. Neither worked, next on his list was suppositories. Ok that kinda worked but didn't get the results that you would expect after not going to the bathroom for a week. So I continued to do suppositories 1 time a week as the pedi recommended. Finally they stopped working too.....
2 1/2 months ago my baby boy Brody was diagnosed with Hirschsprungs Disease at the age of 3 1/2 months. Luckily after months of telling the pediatrician something was terribly wrong with him he finally listened to me. It was Thursday, October 29th 2009, my son stopped eating. He ate before bed the night before and when he woke up he just didn't want to eat at all. I remember feeling so frustrated trying and trying to feed him. I was sitting there wondering why he didn't want to eat. I also wondered if he had failure to thrive, or just didn't want to live.
I called the Dr's office again, as we had been talking frequently and this time instead of ensuring me things were fine and he was just learning to poop or whatever other line of BS they wanted to feed me, they finally agreed to see him. By the time we got in to see the Dr. it was 5 pm (19 hours from his last feeding), and he said why don't take him to St. V's children's hospital that way they can give him an IV and do some testing.
We arrived to St. V's around 6:30 (had to wait for Joe to make it home from Detroit), and they started him on an IV and took some xrays. They suspected he had a blockage of some sort or they said it could be something called Hirschsprungs Disease. That night was truly agonizing, no answers, just waiting.....The next day we met a Dr. by the name of Steven Bruch, he's in a group of pediatric surgeons at St. V's/ Ann Arbor. He said he for sure thought it was HD and would order a barium xray and biopsy his bowels to see for sure. At this time they started wash outs (they stick a rubber catheter about 12-14 inches up his butt and force saline solution up there to get air/poop to come out), my poor baby. It was absolutely hell having them hurt my baby like this. I was so upset for him. They were talking about him needing a colostomy bag and a major surgery.
We had to wait the weekend for the results to come back on Monday. So Brody spent his first Halloween in the hospital. We brought him pumpkins up and dressed him in his costume for the nurses to see (he was a glow worm). Grammy even decorated the room with a Halloween balloon and banners : ) The nurses brought "him" (read us) some candy treats and he made them a ghost card with his foot prints (the nurses loved it).
Monday afternoon it was finally revealed he did indeed have HD. Again they talked to me about the steps that could possibly follow this. They were still doing the wash outs on him in order to get the entrocolitis (infection of the intestines) under control so they could perform the surgery. If the wash outs (3 times a day) would not help he would need a colostomy bag and then later on a pull through surgery. We did the washouts with help from the nurses/surgeons and by the grace of God, he healed up enough not to need the colostomy. 2 weeks of being in the hospital he had the surgery (Nov. 12th 2009).
Surgery day was truly agonizing. I would not wish that on my worst enemy.
They took him down to the OR around 9:15, we than sat around signing paperwork and talking to the anesthesiologist. I had so many fears and all the what ifs were going through my head. I tried to keep strong but it was so damn hard. I had the nurse take one last picture of us before he had surgery and one of the pastors from our church came down to pray with us/sit with us during surgery. I kissed Brody goodbye, at 9:45 they took him to the room. We were told this would only be like a 3-5 hour surgery. So by hour 5 they still haven't told us anything besides that when he went under earlier he was doing good, I was getting very nervous. Why the hell weren't they telling us anything and why was it taking so long? Every hour felt like an eternity and I grew more upset/scared by the second. Finally around 6:30 I lost it, and Joe was right behind me. I thought they were going to tell us something went terribly wrong. Finally at 6:45 the Dr's came out with a stone look on their face and the one Dr. could tell I was reading his face wrong. He said "don't worry everything is fine".
They had to redo the procedure 3 times cause every time they did the biopsy came back bad and they had to basically start over. But they were happy with the results and pleased that the wash outs worked so well.
We finally got to see him around 7:10, he was so puffy from all the IV's and he looked so miserable. I wanted nothing more than to pick him up and hold him, but at the time they said we couldn't. That night was horrible for him. He was in sooooo much pain!! He was on a Morphine drip and on Tylenol and he still was in a lot of pain. We were moved to PICU where they could keep an extra close eye on him.
The next day he seemed to be doing a little better but was still in a lot of pain, and we were finally able to hold him again. He wasn't allowed to eat yet though. He had to have a BM/pass gas before he could start eating. Saturday day 2 after surgery he was allowed to start eating again, boy oh boy did that make him seem like a whole new little guy : ) The surgeons said we would be in the hospital till probably Thursday. So much to our surprise we were released on Monday Nov. 16th (a day after he turned 4 months old).
He continued to do well and at his 4 week check up (Dec. 8th) he was still doing well and there was no need for dilation's. They said he could get off of his antibiotic on Friday the 18th. Well on Sat he only had 1 dirty diaper, and that was unusual for him. So I called the surgeon and he said that was fine as long as he at least had 1 dirty diaper a day.
Sunday (Dec. 20th) he was so fussy and cried alot. We chalked it up to teething since he was drooling and chewing on everything. This went on till Wednesday (the day before we were supposed to go to Fla.), when he stopped eating once again. I talked to the on call dr and he said to take him back to St. V's to get checked out. He was admitted and they started him on washouts again and heavy doses of antibiotics.
We were all so upset, I mean poor Brody being in the hospital yet again and we were going to
have to miss our flight out to Fla. They kept us there till Christmas day. I think Santa wanted to give Brody a Christmas miracle : ) He did write a note to Santa begging to go to Fla, to spend Christmas with his big sister Addie and so that he could meet Mickey Mouse (we had this taped to his hospital door). Santa did come to his room and gave him 4 new toys. I think that is awesome that St. V's did that!! We were released around 1 and got a flight out the next morning!
Brody did fine until New Years Eve and then he stopped eating again. I was a nervous wreck. We were miles and miles away from home and I thought we were going to spend the rest of our vacation in the hospital. Luckily I got ahold of his surgeon and got the ok to do washouts on our own. As soon as we got one wash out done he was eating again.
We are still doing wash outs, and go back next Tuesday for a check up.
This has been such a hard emotional roller coaster so far. I hope things start to go better for my little man. Thank you all for all the prayers, love and support. We greatly appreciate it and will continue to update you all through this blog.
XOXO-Monica
