Ian's ostomy

This post has taken me over a month to write... and I think it's partly because all of this has just been exhausting physically and emotionally, and the other part is that I haven't really wanted to relive it in my mind. On March 9th, we had a surgery scheduled for Ian because our sweet boy has had 3 terrible infections in his scrotum, (yeah, it's as horrible as it sounds) and they knew that something bad was going on there. Our doctor thought that maybe some stitches were still there from his previous surgery. So that day we planned on fixing the problem and staying one night in the hospital.

Three hours after they took Ian back for surgery, his surgeon came to find us and told us that they found the problem and it was much more serious of a surgery... and that he would need a colostomy bag, so that everything post surgery would have a chance to heal. It was a lot to swallow, and we knew we would have a lot to explain to our little boy when he came to realize what was going on.

We stayed 4 nights in the hospital and I've never seen Ian as angry. Most of the time he wakes up groggy but still smiling but this time he was throwing up and very angry. His surgery was 7 hours long and that length of time under anesthesia did not agree with him. Ian kept that voice the whole stay at the hospital, telling the nurses to "stop," and "go away." He was pretty angry about his colostomy bag as well. I felt terrible that we didn't even get to prepare him for that... and we had just gone through all the potty training only to confuse him now. All of it was very difficult, he was in so much pain and was processing a lot.

The Child Life specialists at Eggelston are incredible!! They came in with this doll that has an ostomy like Ian's and talked to him all about it. At first he did not like this doll, but later decided that he was pretty interesting.

His nurses were all incredible but there was one he grew particular fond of and even told her he would go home with her... not sure if he was just trying anything to get out of the hospital though!

 

Finally, the day he was discharged came... Ian was in a lot of pain, and came home with a colostomy bag and catheter. He wasn't up for playing much but at least these two could be sewn at the hip again. They are so sweet together.

A few days after we were home he continued having a very rough time and would not stop vomiting and we knew something was very wrong and called his surgeon. She told us to go to the Emergency room. As it turned out his ostomy was blocked. It was not a fun time unclogging this and Ian wasn't really improving. He was completely lethargic for days. Within the week we started seeing new signs that there was still a greater problem and our surgeon told us to go to the emergency room again. They figured out that he had colitis and thankfully could give him antibiotics to help him. He started the meds and within the first few hours even, started acting like himself again. Thank goodness!!

This little adventure has been especially trying... first with Ian responding so upset, then with his terrible time in and out of the emergency room and now the struggle with the bag. We are constantly battling with Ian because he removes his bag, almost daily here recently, sometimes twice in a day.  AND and let me tell you this is about the least fun thing I've had to do as a parent. It smells T-E-R-R-I-B-L-E and it's always when we are about to walk out the door that I notice all the poop all over his shirt and that he's taken it off again. Ian does have a love-hate relationship with his bag however... the convenience of not having to poop on the potty appeals to him. Lawd help me!!

We will have the surgery to reverse his ostomy and put everything back the way it was on May 11th. PLEASE PRAY for us... I am really not looking forward to another lengthy stay in the hospital. BUT we do think this will be his LAST time! For poor Ian that has gone through too much in his short life and for the whole family it's a strain... and me, It's exhausting and I stress eat and gain 10 lbs every time we go through it.

My mom and dad are incredible to watch the girls and love on them, and allow Cody and I to be there for Ian. This last time my mom's small group brought us meals and they were pure gold to us. I am so grateful to all those people that are our village and stand around this family. I don't want to think what I'd do without them.