Sunday, October 31, 2010


So I guess I forgot how absolutely exhausting it is to sit in the hospital and do ABSOLUTELY nothing! I fell asleep and forgot to update the blog yesterday, and proceeded to take a three hour nap this morning. I'm sorry as I gotten quite a few phone calls and emails, so I have worried you guys unjustly. But I do have some good news. I think things are looking up.

  • We did a urine specimen; and it was fine, not sure where the blood was coming from??
  • Matthew is now 100% independant in the emptying his bladder department (at least since 10/30/10 @ 2pm). Just as quickly as the switch got turned off almost 2 weeks ago; it mysteriously got turned back on yesterday. So I guess I was wrong about the re-tethered cord thing. A hit to my pride; but I'll take it anyday over surgery for Matthew. Dr. P was right (again) and it sounds like it doesn't mean that this can't happen again. I guess the nerves can take up to 1 year to figure out what they need to do.
  • We tried Matthew back on his feedings yesterday; and with in 1/2 hour he was wretching again. So it was back to IV fluids. And the retching quit. Until his 8 oclock meds. We put his meds in the j-tube also; and within 2 minutes of administering his meds, he started vomiting. He slept perfectly all night, with NO mucous problems and woke up this morning with CLEAR lung sounds. We gave 1/2 of his 8 am meds and he started violently retching. We let him rest about 1/2 hour and then I decided to be creative and give his medications in his g-tube (vs the j tube) to see if that made a difference. He absolutely did perfect with it.
  • So we talked with the GI doc and the hospitalist this morning. We agreed to put all meds in the g-tube, and to try the j-tube for feeds 1 more time. If it doesn't work, we feel it is reasonable that all the excess mucous/retching is for some unknown, medically unexplainable reason linked to to the j-tube. Prior to the j-tube insertion, Matthew had issues with reflux/vomiting but not retching (they are two separate, very distinct issues). We will take out the g/j tube (at the bedside) and place a g-tube. If vomiting is still an issue (which it realistically may be) and as long as it is not accompanied by retching, Matthew will need a fundoplication surgery, in which to wrap the stomach around the top of the esophagus; which makes reflux not be an issue. The fundoplication is something we've tried pretty hard to stay away from, but we are reevaluating his need for this surgery. We are a couple steps away from that, and I am trying to take one step at a time!!
As I am sitting here writing this, Matthew's feedings have been restarted in his j tube for about 20-30 minutes. He is already starting to sound mucousy and is coughing. I have a feeling plan B (or P as I call it..we've been up and down the alphabet of plans with Matthew )will be happening at some point today.

As I was finishing typing this..Matthew threw up a ton of mucous. After 13 cc's of formula. 13 cc's. and now his tube feedings are off. The nurse is off to talk to the Dr. She will pull the g/j and put in a g tube.. we'll see how this goes.


Diane said...

Thank you so much for the update, but don't worry about us. You need to get your rest too. I continue to pray for Matthew.

Kristen said...

Thanks for the update Jill. We all know and understand how exhausting, boring, yet at times very busy, hospital stays are. Don't be worried about all of us. I am glad to hear you got some sleep instead of sitting at the computer pressured to spill out an update.

We continue to send you all our love and prayers.

Anonymous said...

So glad to hear that things are moving along again for Matthew! Keep us updated on how the tube switching goes. Hope you are home soon! Let me know if you guys need help with anything.

Carla said...

Yay for pee! I never thought I would say that but, cathing is no fun. Glad the improvements are coming. Praying for a plan to go home soon:)

Lisa said...

Lizzy had the fundo surgery and it really wasn't that bad. It's been so good for her reflux.

Hang in there (and take a nap for me, will you? )