Baby's surgery

[scared_mom]

It's been so long since I've gotten around to get online much. Grier (14 month old) had a colon resectioning surgery on April 20th, and a temporary colostomy was put in place. Initially, she was supposed to be released from the hospital on the 27th, then we'd be outpatient for a week and be able to go home, returning in a few months for the colostomy reversal. Well, she was not healing well at all, she developed a bad infection, and we were delayed on being released. There is a ton that I could put in here that happened but I'm to exhausted to go into that much detail. To make a long story short, this morning Grier had a full colectomy. She now has a permanent ileostomy. On the plus side, she's still a baby, so she this is something she will have grown up with, not something she'll have to adjust to. She'll never remember anything different, it will be a way of life for her.

The diagnosis of Crohns disease is still unsure. Right now they say general IBD. Now we have to stay in the hospital for another 2 weeks, then we can go home, but have to come back for frequent follow ups. Home is a three hour drive from here, and I have not been home since April 13th, so it's already been 3 weeks since I've been home, making it a total of 5 weeeks.

My daughter has been in the hospital since April 19th, and I've been sleeping in a little chair-bed at her bedside since then. Let me tell you, at almost 8 months pregnant it is NOT the best place to sleep. Not sure how much more of this my body can take. I can't wait to get home.

In a way I'm glad the surgery is done, there is no more wondering, but I'm extremely sad that she has to have the ileostomy for the rest of her life. It is still a hugely long road ahead of us, the recovery process will not be easy, so prayers would be much appreciated.

 

[mommy1st]

You and your family will be in my thoughts and prayers. My question for you is where do you pick up your mother of the year award. Grier is so lucky to have a mommy like you by her side, I am sure that it has been hard physically and emotionally for you, not to mention that you are carrying another baby, but you will soon be home with your precious little girl. I am so sorry to hear that her ostomy is permanent but like you said this is all she will know so it might actually be a blessing in disguise. Best of luck on finally going home and on your upcoming delivery. Let us know how everything is going whenever you get a spare moment.

 

[kello82]

wow scared mom, im so sorry it got complicated.

can i ask how she got infected? what happened that she suddenly needed a total colectomy?

i really hope this means that she has a life free of pain though. like you said, this is all shell ever know. she wont remember the pain of the surgery and she will grow up with her stoma just as we all have grown up with our exits on our bums!

hey...and at least you dont have to do diaper duty this time round! the poo poo mess comes pre bagged hehe (i really hope that that was funny and not obnoxious to you. sorry)

im thinking of you and your lil ones, one on the way included.
good luck

 

[kromom1]

Wow, my heart goes out to you and your family! Things will get better, just hang in there and best of luck to Grier and the upcoming birth of your new little one. I will be thinking of you!

 

[Guest]

i'm so sorry to hear what you and your little girl have been through since you last posted. i hope with all my heart that the worst is in the past now, and it will only be good things ahead for you all from this point onwards.

i know this might sound so strange to you, but speaking from the point of view of an adult who suffered from a young age with joint pains, then from 13years old until my 20s with bowel pain and other issues - when i finally had my ileostomy formed, i wished they'd done it years before. i missed out on so much of my childhood and teenagehood because of Crohn's. sports and phys ed lessons at school were painful for me, disco's when i was a teenager and going on dates with boys were always something i would suffer from afterwards, if i managed to go at all! all this was because of no diagnosis, then mis-diagnosis. so if i say your little girl is lucky to have had all those possible years of suffering and surgery over & done with by this age, you'll understand where i'm coming from, i think.

i know it must be upsetting to know that she has this for life now, but i think you may find it's not going to be the negative you feel it is. kids adapt and accept so much easier than us adults sometimes, and having the stoma is all she will ever remember. mine is as much a part of me as my nose, and i am grateful for the healthy years it brought me. she's been given a second chance now, and she has a wonderful mum - she'll be ok