We came home last Thursday with Liam from the hospital. He was really doing well and then BAM, we hit a wall when he began to have multiple BMs on Saturday. That is, 15-20 BMs a day. By Sunday his bottom was red, raw and bloody. I was NOT prepared for this at all. Our surgeon said that he may have a couple "accidents" thinking he was potty trained, but that should be it. REALLY....you could have told me the amount of BMs he would be having!!!! I would have totally protected his bottom and would have used preventative measures to keep his bottom healthy. I called the doctor's office on Sunday concerned with what was going on and got the doctor on call who said that it was completely normal for him to be pooping this much.
When Liam woke up on Monday morning two of his steri strips had come off and one side of his incision looked like it was opening, so I took him in the the office. His incision was fine but the doctor said we needed to get Liam's bottom under control - You think????? (insert sarcasm) I ordered some paste that they recommended because no pharmacy had it or could order it for me (national back order - of course right?) We have started using the paste and he seems more comfortable with it on, but it is a wrestling match trying to get him cleaned up and the diaper paste on. Now let me say that the paste has been great for comfort, but it is a pain in the you know what to clean up. It turns to a glue like substance once he has soiled it and becomes very sticky.
Believe me I have done my research and I am trying everything I can to get this under control while he is having so many BMs. Baking soda soaks in the tub in the AM and PM, Maalox on his bottom for the acid, no stink barrier wipes and stoma powder (from his colostomy), Ilex & Vaseline. No more wipes. Only tissue and mineral oil to clean the bottom.
Have any other solutions that have worked for you....please let me know. Remember this is not your normal diaper rash - his skin is so broken down that it bleeds.
Hoping and praying that we get a breakthrough soon. Fred and I are leaving on Saturday to visit family in CT and go to his 25th high school reunion. My mom will have the kids and will have to manage Liam's bottom while we are gone. This is a large undertaking!!! God bless her, she is an angel to do this for us. I am a little nervous about leaving him like this, but we really need to go see some family that has had some really bad news recently. We will be coming home on Sunday, so we will only be gone one night.
On Wednesday, Lily will have her bone graft done and possibly a revision on her lip (again). I am still in limbo about the lip. She will only need to stay one night in the hospital. My mom will be helping out with the kids again. I don't know what we would do without her!!!
praying for you guys and we love y'all dearly!!!
ReplyDeleteKelly, that is horrible. My mother-in-law always said burnt flour was the best for diaper rash. I didn't even try it until kid #4 and it's amazing. You put flour in a pie dish, put it under the broiler until it's browned. I put it a little spice jar so I could sprinkle it on. I warn you, it smells, especially after it gets wet, but it worked for my kids (although their bums were never as bad as Liam's). I'm sending prayers for you! Hang in there!
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