Thursday, May 5, 2011

Crazy Week

Sorry I haven't had a chance to update the blog with everything that's happened since the weekend. The one nice thing about the hospital was that I was able to catch a few minutes each day to catch up on the blog and email. And my sleep a bit.

We ended up being discharged from the hospital Monday evening with tons of antibiotics. They sent us home knowing that Stephen still had an infection, but that it wasn't nearly as bad as it had been. And I could continue his treatment of antibiotics via his g-tube and in his dialysis fluid. Lucky me, one more medicine and an extra five steps to set up his dialysis. But it's still much better than being stuck in the hospital!

Monday night was a nightmare. Stephen didn't sleep at all. And when I say at all, I mean not more than 30 or 40 minutes at a time. Which was so annoying because in the hospital he slept so great! I'm confirmed it's a combination of the light and sound and the soft, inclined mattress. So I've been trying all of those things, but I can't seem to replicate the hospital environment.

Being up all night Monday night though did allow me to see one thing; a hole in Stephen PD catheter. When I went in to hook up his feeding tube at midnight, I noticed his pj's were all wet on his leg. At first I thought maybe it was his catheter, but then figured it was just his feeding tube extension tube. But later that night around 3 am when it was even more wet, I knew something wasn't right, i changed his pj's thinking that if it was a hole, the new pj's would also be wet. So we changed him. But much to my surprise, the new pj's weren't wet. So maybe I'm just imagining things?

That day when I talked to Deb, his dialysis nurse, I mentioned this to her, but we both shrugged it off because he wasn't staying wet. But Tuesday night when I connected to dialysis and I watched the tubbing super closely and low and behold, there was a hole! We called the on-call doctor and told her and her suggestion was to just bring him in to the office in the morning and Deb would repair the catheter.

Deb ended up calling me the next morning and said, "well, I guess you know by now he needs to come in to have his catheter replaced."

"Nope! I was told you could repair it!" So she said to bring him into the office and she would do what she could, but there were no promises. So I quickly packed myself and Stephen an overnight bag just in case he was admitted for surgery. I didn't call Bill yet because I didn't want to worry him for nothing. So off we went to the nephrologists office.

Luckily, Deb was able to fix the hole. She cut off his catheter right above the hole and "installed" a new transfer set and saved us from a trip back to the hospital and to the OR. And luckily while we were there, we also got to see the g-tube nurse who gave Stephen a much smaller and more low profile g-tube button. That will hopefully help with some of the leaking and skin breakdown under the button. Now if I could just get rid of his horrendous diaper rash. The poor kiddo has such a raw butt from his nasty antibiotics.

Low and behold after trying a bunch of different pillows and blankets last night, Stephen pretty much slept through the night. Hallelujah!!!! I know you aren't supposed to have anything in the crib, but if a gel pillow (from the NICU) and a blanket due the trick, I'll take it. It's either that or he sleeps in his swing all night. And I'd much rather him have a little pillow and sleep in his crib than have him in his swing. The crib police are welcome to come arrest me anytime!

Here's to hoping the next few weeks are uneventful and we can actually resume a sort or "normal" life!


  1. What a week! You are seriously the most amazing mother I know. Please let me know if I can do anything at all for you. Still sending love and prayer!

  2. See if he can have oral (tube) nystatin. That is the only thing that helps with harris's really bad rashes.

  3. I wish I could offer you more, but I do have some diaper-rash strategies. If you're able to bathe him, grind up some oatmeal in a food processor and dump it in a tube sock. Run his bath water over the tube sock when you draw his bath so that some of the powder dissolves into the water. It is very soothing! Then, when you're drying him off (or just do this part if you can't put him in a bath tub), rub Mylanta or Maalox (I know it sounds weird, but you can Google it ... in all your spare time!) on his rash with a cotton ball. Give it a little time to air dry. Put diaper rash cream on top of that and diaper him up. My son's rash was markedly better the next day. I kept doing that regimen, and it was completely gone within three days. I hope this helps. I'd send you sleep and strength if I had the power to.

  4. Happy to hear that Stephen is home and doing better. We can't believe what an amazing little man you have. Hope you all are getting some much needed rest and that Stephen is sleeping better. You certainly get our vote for BEST MOTHER OF THE YEAR--Better yet-MOTHER OF THE MILLENIUM.
    Aunt LuAnn and Uncle Dick

  5. So glad to read that you are home! Hope the antibiotics work!