Nate will be four next month, where has time gone? Quick reminder. Nate was diagnosed at 8 months old with Hirschsprungs disease. He had a pull through with about 2/3 of large intestine removed. There were complications that lead to an ileostomy.He had a reversal at 11 months due to a prolapse (lot 6-10 inches of small intestine). He did okay after but still had troubles passing stool. At about 18 months we tried botox. It seemed to work well but with each new set of botox it worked less. The 4th and 5th time it didn’t work so we have stopped doing them. Nate has had EC at least 3 times sine his surgery and likely more. He suffers from daily bloating and sporadic vomiting. Which brings us to a month ago.

A month ago Nate got hand foot and mouth. Thankfully a mild case. However since then his body has been… well… acting off. It’s hard to explain. After HFM he started getting better for a few days. Then he got a fever, vomiting and diarrhea as well as bloating. His surgeon suggested putting him back on flagyl, He started to improve. The fever went away appetite and energy returned, after a few days the diarrhea cleared up. Then the diarrhea came back on and off and he vomited sporadically. He didn’t look sick but he wasn’t acting well and was still bloating. I started tracking his bloating by measuring his belly. At completely empty with no bloating his bely goes down to 51.5cm. Over the last 3 weeks the trend has been that in the morning Nate’s belly is at about 54cm and at night bloats to somewhere between 58 – 61.5cm. He looks pregnant. He almost never complains of pain. I don’t thin he even knows if it hurts. It is almost all gas.

Okay so Friday Nate’s appetite was down again. He refused to eat any diner and then threw up on an empty stomach (after vomiting belly measured 61.5cm). He was tired so we put him to bed and he was okay for the night. Then yesterday he woke up and began vomiting again and was lethargic. Enough was enough so I took him to Sik Kids ER. They did x-rays blood work. They started an IV because he was begining to dehydrate. The bowel showed dialation but not much stool. The blood work was fine. Nate finally stopped throwing up and was able keep food in. Sowe were sent home by a very baffeled doctor. We will be returning to do an upper GI contrast study. The ony thing Nate had yesterday was a little gatorade, apple juice 2 small freezies, 2 peices of bread with bp and 1 digestive cookie and by the time he went to bed he was bloated to 58.5cm.

Today Nate is energetic again although small apetite.

I am at a loss. Any ideas what might cause so much gas? Why he is bloating? Tests to ask the doctor to do? Any ideas at all? I feel so bad. It can’t feel nice being that bloated. In one day he will bloat up to 10cm. I have been measuring my other sons belly daily as well for cmparison and is he bloats more then 2cm he cries his belly hurts.

Sorry this is so long and thanks for reading any an ideas.

I haven’t blogged in a while mostly just out of laziness but it is time to start back and record the goings on of LIFE.

WARNING!! Maybe a little graphic.

For the last week we have been dealing with the ups and downs that are Nate. His belly is acting off again. It all started a week ago. We jumped in the van right after dinner and went to his cousin Hailie’s soccer game. The boys had a great time running around and being goofy. On our way home about 2 minutes from arriving Nate threw up ALL over himself. We got home and got him cleaned up and then it started coming out the other way and his body flushed itself. The next day his belly became very distended reaching 60cm in diameter (52cm is flat for him). He was fevered, lethargic, no appetite and not able to pass stool on his own. I gave him a suppository and 2 hours later he finally passed some. The next day was the a repeat with another suppository. On Saturday Rob and I agreed to wait and see how he did on his own. His appetite was a little better in the morning but not normal and down by dinner. More time passed and finally on Sunday afternoon he finally had a movement on his own. But all is not right. Monday on he has had a lowered appetite, diarrhea (worse then normal) and a lot of bloating. Yesterday the bloating from gas got so bad that he was doubling over in pain. My poor boy. Today doesn’t seem to be any better. He is bloated again and so far no movements. We are at a loss/I am at a loss for what to do. We have started him back on antibiotics in case it is entrocolitis (an infection in the bowel) again and we have been in touch with his doctor to help keep an eye on it. But for now we just wait and hope that it will all be okay in the end. I am so worried. I am stressed and wondering if I am doing the right thing. I spend my time play the What If game and wondering if I am doing what is best. I just needed to share to someone. Anyone. Heck even no one. Even if this is never read I needed to share this. I am feeling very stressed out by all of this and how days like these will affect him when he has started school come next month.

My head is spinning. If you have read this, thank you. I just needed to vent.

I know there are a lot of diseases out there that are just as bad or worse and I feel for the people who suffer them and their family’s.

I can’t say it enough but on days like today I have to say it. I. HATE. HIRSCHSPRUNG’S!