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.. ♡

Another big day.. #14

January 9th, 2012 - Exam under anesthesia day. I barely slept the night before. Actually we only slept 30 minutes. Partially from nerves and partially because Isaac was ANGRY he couldn't eat past 1am. He was up and down most of the night. I almost broke down and fed him. He was so upset. This got me thinking again and asking God why did this happen to us? Why my baby? When would this hardship end? But then instead of asking why, I asked God to comfort my baby and protect him. After we got Isaac to sleep we tried to catch a little snooze, well a 30 minute cat nap.

We arrived at the hospital at 7am. Did all the standard "surgery" type stuff. Checked in. Got admitted. Got to our pre-op room. The nurse spent at least 45 minutes going through information and vitals and all that required stuff. Then we waited for the anesthesiologist to come by and talk to us. When he did come by he was very brief and very nice. We seemed like old pros at this. We really didn't have any questions. Just basically like that last time.

When our surgeon came by she answered any questions we had. I always felt more comfortable asking her questions. She is not only an amazing surgeon but a mom as well so she knows how I am feeling. I started crying, like usual. She told me he would be ok and she wouldn't let anything happen to him. She always knew how to comfort me. She told me I had to stop crying or she was going to cry. LOL. I was a hot mess!!!

When the nurse came by to take him to the OR, it was Shannon from his first big surgery. She was one of the OR nurses. And she remembered us! I instantly felt a little better. Isaac had a team that knew him and that made me feel better. We gave Isaac all the kisses and hugs we could. I told him I would be waiting for him with a bottle when he was done. I felt so bad, again. Like I did before his first surgery. He was older now. He knew a little more about what was going on. And some strange lady was going to take him away. I really hoped he wouldn't be scared. I have never left him since the day he was born. I felt so terrible. Shannon picked him up and carried him off to the OR. We knew the routine. Go upstairs to surgery waiting and WAIT.

We checked in upstairs at the desk. Walked over to our table we had sat at during his first surgery. We waited for our surgeons name to come up on the screen to see the progress. It flashed from in progress to done really fast. We kinda of looked at each other like what the heck is going on?? Was it like that because something happened? Or did it show that because it wasn't an actual surgery? We were so confused! Then the phone rang and one of the desk ladies came over and said they were finished and the surgeon would be up to talk to us. She escorted us to a room and we waited. We were really nervous because it was literally not even 10 minutes from when they took him away.

When she came in she told us that it was a 5 minute from start to finish procedure. FAST! She said that the area looked wonderful and she had no concerns after seeing it. She said that the inflammation was probably from his allergy and also from the surgery. She said it is pretty common for some swelling and inflammation to linger for awhile after surgery and that the allergy probably just irritated it even more. SUCCESS! His initial surgery worked! Nothing was wrong. No more surgeries at this point. Now I just wanted to get to my baby.

Our surgeon walked us down to the recovery room. Isaac was crying his head off. He was so hungry and so out of it. But they told us it should wear off within minutes because he was only under for less than 5 minutes. So he had barely any anesthetic. We fed him. Got him dressed and the discharged us within 10 minutes. We left the hospital around 10am. His procedure was at 9. The pre-op stuff took longer than the surgery and recovery! We couldn't get out of there fast enough!!

We were so happy that we could finally put this part of the journey behind us.. And hopefully wouldn't be back at the hospital any time soon. We just wanted some normalcy in our lives..