Austin was doing okay on Monday morning, but then the vomiting started again around noon. Dr. C sent another referral to Children’s on Tuesday and we were on our way. Austin had another xray and sure enough, he was still severely constipated. Due to low muscle tone, children with DS are more likely to battle constipation. They are also more likely to have Hirschsprung’s disease . While Austin does not appear to have any abnormalities that would point to Hirschsprung’s, it’s still a possibility. More on that later.
Abbie explained to me that there’s a procedure that will clean Austin out. However, he would need to be admitted. This procedure also entailed a NG tube. They had to insert a tube through the nose, past the throat and down into the stomach. The process of holding Austin down to insert the tube was traumatizing. My poor baby vomited all over everyone, his nose was bleeding. Finally, after the tube was in, we went to Radiology for an xray to make sure the tube was inserted correctly. Right as we were going through the door Austin pulled out his tube. I can’t blame him, but still…they went through so much to get that tube in and now he would have to go through it yet again. The ER nurse (bless her heart) didn’t realize that Austin’s skin was so sensitive (especially his cheeks). They have to tape the tube to his face. Well, when she tried to pull the tape off his cheeks were really irritated. THEN, Austin tried to rip the tape off, which resulted in his cheek bleeding like crazy. He looked really bad and was really upset. Abbie thought it would be best to give him a little break and came to the conclusion that we would be transferred to a hospital room and they would reinsert the tube later that night.
I was nervous to leave Abbie’s area(The ER), but she said the doctor on our floor was really good. She was right. Dr. G made me feel at ease and decided that they would take Austin to the procedure room to insert the tube and I did not have to be there. That way, Austin would not associate his hospital room with the trauma and he would be brought back to Mommy and feel safe. THANK GOD! They taped diapers over Austin’s hands to keep him from pulling out his tube. He did well with the clean out procedure, which took about a full 24 hours. We saw numerous doctors, all of which were amazing! I can’t say enough positive things about the staff at Children’s Medical Center on C6! One of the doctors felt that Hirschsprung’s was a possibility…and if anything, we could rule it out. She also felt it would be important to test for Celiac Disease and re-test his thyroid. Celiac Disease and thryroid testing are done by a blood test. However, the Hirschsprung’s test is much more invasive and involves a biopsy. Austin had his biopsy in the procedure room with the GI department on Thursday. The results for his thyroid came back normal. The results for Celiac Disease and Hirschsprung’s will take a little longer to come back. I’m praying this was just due to severe constipation and that Austin does not have any of these diseases.
HE'S SO HAPPY TO BE HOME!!
As most of you know, Austin is a very selective eater. Therefore, I used to give him A LOT of milk and Pediasure. Apparently, milk causes a lot of constipation. I was more worried with the amount of calories he was taking in that it never occurred to me that MILK in excess causes constipation. The doctors ordered him to be completely off of Milk and Cheese (not that he ate cheese to begin with.) Yogurt is okay. They also want him to drink 32 ounces of fluid a day…water, juice and ONE Pediasure a day is okay since Pediasure is lactose free. He needs to eat foods that are high in fiber. He also takes Miralax 3 times a day. No more cheetos. No more Sandwiches with White bread. We are really trying to shy away from enriched flour too. Here’s the strange, yet really cool thing…AUSTIN IS EATING ANY AND EVERYTHING WE PUT IN FRONT OF HIM. My child ate Raspberries today. Raspberries!! He ate a veggie burger on Whole Wheat Bread with Flaxseed. He ate Brown Rice, Peas and carrots. He ate whole wheat pasta with tomato sauce and beef. He is devouring food. It’s like he finally has an appetite after 6 months!! Poor Cagle (our dog) isn’t getting any treats from Austin because Austin is actually interested in eating his food for the first time in…forever. This is very new for us because in the past, Austin could not have cared less if he ate solid food or not. He’s taking his new diet very well and I couldn’t be happier!
I’m trying to remain optimistic while waiting for the test results. Either way, we will just deal with what we’re handed, like we always do. The most important thing is that Austin is feeling better, looking better and eating better.
I guess it’s obvious that with our hospital stay, I did not fulfill my 31 for 21 obligations this year. I think I had a good excuse for not updating. However, I will ALWAYS continue to advocate, educate and promote awareness all year long!
I think this goes without saying, but I’m ready for October to come to an end. I look forward to a happier and healthier November!
Thank you for your prayers!