Our Hospital Stay

My mommy instincts were unfortunately correct. I KNEW something was not right. I knew it and it scared me. We were sent back to the ER on Tuesday and thankfully our ER Doctor this time was Abbie. Abbie and her son, Noah are friends that we met at Mommy and Me. While Abbie is an amazing Pediatrician, she’s also a mom to a child with Down syndrome. Therefore, she truly understands all of the medical problems that can arise in a child with Down syndrome.

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!

Day 24 Praying For A Miracle

I spoke too soon.

We are back to square one. He's not keeping anything down. I switched to clear liquids only. He's not keeping clear liquids down.

He's weak and lethargic. He doesn't even play with his toys. This is NOT like my child at all.

I hate seeing my sweet baby in pain...even inconsolable at times. We cried together this afternoon.

This is hard. I'm exhausted physically, but mostly mentally. I'm ready to break down...but I know that's not an option.

I pray that tomorrow brings answers and solutions. Please keep Austin in your prayers. Also, please pray that his doctor can figure out what's causing this.

31 FOR 21, Day 23

Sick Mommy- check.
Toddler with projectile vomiting- check.
Grumpy Mommy and Toddler- check.
Spending 5 hours in the ER and learning the cause of the week long projectile vomiting is due to severe constipation- Priceless.

They performed a procedure to "clean out" Austin and make him feel better. Who knew that severe constipation could cause projectile vomiting? Let's just say I have a new found respect for all people in health care. I'm so thankful they were able to fix my little man's problem. He's on his way to a full recovery and new diet that will entail a lot of fiber.

31 for 21, DAY 22

Today, I really hate some of the medical aspects of having Down syndrome. It’s rare that I have these days, but today is definitely one of them. The purpose of writing a blog post every day during the month of October is to promote awareness for Down syndrome. A lot of people don’t realize that there are several medical issues that come along with Down syndrome. While this post will make you aware of that, it will also reflect the struggles (and sometimes anger) that come along with being a parent of a child with Down syndrome.

Austin is still vomiting and has very little food intake. Dr. C ordered an Xray of his stomach and found no abnormalities or foreign objects. I’m thankful for this news, but Austin is on day 6 of vomiting. Projectile vomiting. Last night, he woke up screaming and sure enough, he vomited all over the place. He ate some toast this morning, which made me very happy! However, he ended up projectile vomiting several hours later for no apparent reason. He refused to eat lunch, so he hadn’t eaten in at least 5 hours when this vomiting episode occurred. He doesn’t have a fever, but he’s VERY irritable and NOT himself at all. Something is bothering him and I hate that I don’t know what it is. This isn’t a stomach bug. He doesn’t have diarrhea. Yes, I just said diarrhea. I can do that, I’m a mom. He does have reflux, but he’s NEVER had the kind where he spits up. Besides, he’s not spitting up… he’s projectile vomiting. I’m not sure what is causing this, but I’m making myself sick with worry. Did he suddenly forget how to eat? Swallow food? Why doesn’t he have an appetite? Furthermore, why is he vomiting…even when he doesn’t eat?

To add salt to the wound, I asked Dr. C to look at Austin’s hair at our appointment on Friday. I’ve noticed some bald patches on the back of his head. It’s so bizarre because they seem to have appeared overnight. They aren’t very noticeable unless you’re really inspecting his hair or when his hair is wet. In fact, I can comb his hair over the spots so that they aren't as visible. I remember reading that people with Down syndrome are at a higher risk for developing the Dermatologic Condition known as Alopecia Areata, which is the term used to describe patchy hair loss which is not due to infection or drugs. The bald patches have distinct borders, with no hair thinning in other areas of the scalp. It is believed to be due to an autoimmune process, meaning the body is making antibodies against hair follicles. People with DS are more prone to autoimmune diseases, such as diabetes, hypothyroidism and celiac disease. Alopecia areata is more common in people with DS, occurring in 5 to 9% of the population (compared to 1 to 2% of the general population). A gene implicated in the cause of alopecia areata has been found on the 21st chromosome


This isn’t a health issue, per se. It’s more of a cosmetic issue. Dr. C referred us to a Dermatologist. She also mentioned that there are creams that the Dermatologist can provide that can stimulate the hair growth. I’ve also read that Alopecia is highly unpredictable. In other words, people with alopecia can have several episodes of hair loss and regrowth during their lifetime. The hair regrowth can be partial or complete, or there may be no regrowth at all. In most people, hair will eventually regrow to some extent within one year

I don’t think this would have bothered me as much had I not been worrying about Austin’s unexplained vomiting and loss of appetite. However, I couldn’t help but think…my son already has Down syndrome. Yes, it makes him different and he will face bullies and judgment because of this. And now…he also has this rare Dermatologic condition that causes sporadic bald spots that may or may not grow back? I guess I just don’t think it’s fair that he has to face another challenge that makes him different and gives bullies another reason to mock him.


I suppose today was one of those days where I focused on negative rather than the positive. It’s hard to focus on the positive when you’re drenched in vomit, cleaning up vomit and trying to figure the mystery behind your child’s inability to eat and unexplained vomiting.

For the sake of advocating, children with Down syndrome can experience or are more prone to the following health complications:


• Congenital heart disease - (heart disease that is present at birth)


• Hearing problems


• Intestinal problems, such as blocked small bowel or esophagus


• Celiac disease (a digestive disease that damages the small intestine)


• Eye problems, such as cataracts (a cloudiness in the lens of the eye)


• Thyroid dysfunctions (problems with the gland that affects metabolism)


• Skeletal problems


• Dementia—similar to Alzheimer’s (occurs in adulthood)


 
Tomorrow is new day. Please pray for my little man.

31 for 21, DAY 21