Thursday, September 25, 2014

More GI struggles.. Our life.. #53

Well this past month has been a struggle to say the least. We thought about 4 weeks ago Isaac was sick from a viral stomach bug or possibly a Hirschsprung's related infection. We did antibiotics for the first time as a preventative to be safe. Which totally messed up his whole system. We've been trying to get him back regular. Working closely with his surgeon, chiropractor, and nutritional practitioner. Fast forward to now.. a few weeks later and we are having issues again.

First it starts with stomach cramping, loose mushy stools (not diarrhea), and this past week has been accompanied by blood and mucus. This is leaving us stumped because nothing has changed in his diet. He has been food allergy tested. We don't do dairy, limit soy and gluten and absolutely no GMO's. We started thinking back to this past year and really believe all these situations are not all viral but some type of other GI episodes.

We saw his surgeon today who also feels the same.. this is not viral but some type of other GI issue. She does feel it is not Hirschsprung's related though. Which is good. She decided to consult with our GI dr (they work in the same clinic) and have him get in touch with us and see Isaac asap. She feels maybe more food allergy testing is needed or maybe our GI will have some other ideas of what it could be.

This week has been stressful, to say the least. More questions, some answers, and a lot to think about. We enrolled Isaac in a toddler parent program at a local private school.  He was unable to attend today because of what has been going on. We only go one day a week so it was a bummer we didn't get to do that today.

His 3rd birthday in about 2 weeks away. I can't believe it. I having planning a party last minute because of the issues he has been having. This year the theme is Ninja Turtles :) His current obession. I hope we can be healthy for his party we are so excited to celebrate. ♡ I will update more as I get it..
As always, thanks for following our journey!

Tuesday, September 2, 2014

What does it mean to be a Hirschsprung's parent?.. #52

The past couple weeks have been a bit rough. Isaac had an ER visit about 2 weeks ago because he was having abdominal pain, loud gastric noises, diarrhea, and just plainly uncomfortable. It was determined to be some type of viral stomach bug. Fast forward to today and he is not feeling 100% again. Not exactly sure what is going on. His stool was pretty formed which means he could be constipated. So we are treating accordingly. I really hope nothing is going on. For the first half of the day he laid on the floor and didn't want food or water. We had to give him an irrigation to figure out what was going on. The return was all clear saline so which means his immediate bowel was clear. Then about 20 minutes later he has a well formed large stool. But did give us the conformation he was constipated - higher up into his large intestine. Just by the texture and look of the stool. The irrigation definitely loosened things up, enough for it to come down. He started to perk up and even ate breakfast and drank his smoothie. But now we are back to laying on the ground and just looking kind of sad.

Hirschsprung's is so anxiety provoking and just so frustrating. Being a HD parent is so hard sometimes. I can't even explain it. You watch your child suffer and struggle and there is nothing you can do. I don't mean like well we just didn't do anything for him and let him suffer, we gave him an irrigation and took him to the chiropractor right away, I meant that I can't cure this disease. No one can. So there will probably be a lot more days like this. And it sucks. It sucks. We are constantly having to watch what he eats, making sure he has lots of fruits and veggies, pushing water, making sure his bowel moves regular. And sometimes it's just not enough. And then we end up in situations like this. It puts a lot of stress in our house because everything has to stop because of this disease. I had to watch my husband go to work because we need the money, which stressed both of us out, then I had to take Isaac out when he's not feeling well because I had to pay bills and go to the bank. Things that couldn't wait. Meanwhile, my house is not tidy, I have not planned dinner, and I haven't showered. People don't understand what's so hard about having a kid with a medical condition. Well read above and maybe you will understand. Everything stops when your child is having problems. We spent all morning on and off the phone with his surgeon.. That took up most of our morning. It's just never ending. I am not asking for sympathy, just some compassion. Sorry if I missed your bday or some big event in your life. Sorry if I don't call much or don't answer when you call. Things are just not good for us right now. Trust me, I wish we could share all these special moments with our friends and family, but we have an everyday battle for us. Much like today.. ♡