Wednesday, June 10, 2009

Last weeks "busyness"

I think I'm finally ready to blog about last week. Phew, it was a busy one. In order to keep everyone, non-confused (is that a word??) I think I'll do this post in bulleted-form.


  • this day started off innocently enough. We went to PT on Thursday morning (which he slept through-imagine that) and then to the pediatric surgeons office at 1:30 to have some granular tissue removed from around Matthew's g-button (granular tissue is skin that grows around his button because his body thinks it needs to close the hole-to heal itself--God made our bodies to know it isn't right to have a hole where it isn't supposed to be)

  • We got home late afternoon, and I got ready for supper and went off to work.

  • I received a call at 8 pm from my hubby that Matthew's g-button had 'fallen out'. Yikes. Again, God makes our bodies to heal themselves, so the button must get back in quickly or the stoma (hole in his tummy) begins to close. So he grabbed the extra g-button kit we have at home in case of emergencies and headed up to the hospital VERY QUICKLY so I could put it back in. By the time he got there, and it's a 10 minute trip no less, it had already started to close. So we decided it'd be best to head to the ER to have it replaced (BAD IDEA, you'll see why later)

  • We were admitted and roomed right away, and there was no one in the waiting room. We told the nurse that this must be quickly replaced, but that I wasn't comfortable to push very hard on his stomach, and that we had approximately 1 hour to get it replaced. At 9:30 we FINALLY saw a doctor (1 1/2 hours after his button was out) and he was a real 'not very nice guy' to say the least. He couldn't get it back in, (imagine that) but was able to get a very small catheter in it (the same kind they use to drain your bladder). They taped it down and checked placement with x-ray and radioactive dye (just curious, but I don't understand where else this tube could've went- and there was stomach contents coming out of the end of the tube-that one baffles me) and told us we would have to go to children's to have it replaced and that we would go by ambulance. UM, NO. I told them I could drive him. Not gonna happen, it's not an emergency. Well, sorta, but not THAT kind of emergency.

  • The doc gets ahold of childrens' in Omaha, but they say we can come to the office tomorrow and have it replaced. Only problem being, the catheter that is in his stomach is only held in by tape. Most catheters have a balloon that you inflate on the end of them after they are placed. That holds it in. So he had to remove the catheter and replace it with one that had a balloon. No big deal, except that that required another x-ray and dye. Oh, and I forgot to mention, the dye gives him horrible diarrhea-so a fun night was in store. (especially since he got it twice)

  • Back home at 11:30-


  • I was up with Matthew alot with diarrhea and his tummy gurgling. Poor baby. He had a ultrasound of his kidneys and a VCUG (this is a procedure to check for kidney reflux) bright and early. Poor kid. At least they sedated him! I'm hoping to hear from the doctor today with these results.

  • Then up to Omaha to the surgeons (again) to see if they can get his button back in. The surgeon sees him and forcefully gets his button back in. Hindsight, I would've asked them to sedate him. This was very painful for him. Then we had to go to radiology to check placement AGAIN (since it was a new g-button, I guess--I still don't get this--where else could it go???) In radiology he started vomiting blood (I told you he was forceful) . All done with that we headed back to Lincoln. Matthew was surprising happy in the back seat and smiling at his sister.

  • We were able to get to look at the stroller that we want to get for Matthew. We were an hour late for the appointment, due to the earlier appointment in Omaha. Our PT knew of a family that has the same stroller we wanted to look at (since I didn't really like the first one) and this family graciously allowed us to come to there home, meet there daughter Quinn and see her stroller. I liked it a whole lot more than the first one and Chrissy, our PT is going to write a letter of justification to our insurance company, so we can be in the process of getting it approved. From what I understand this is a long process, we probably won't see this till Thanksgiving (or later). The stroller is called a Kimba stroller. It is made by the company Ottobock. It looks so much more like a 'normal' stroller than the other one. And it comes in 3 cute colors, too. It has the 'tilt in space' option, and will optimally position Matthew as upright as possible. If you click on the word Kimba above, I have linked it to the stroller we will be getting.

Well, if you made it this far, congratulations! The sad part is, that's not quite the end of the story. But, it's enough to write about for now. I will continue the story tomorrow. I have to include a picture of Matthew though. This was taken earlier last week. I was making supper and Matthew was in his highchair. He was looking at his new lightbox that he got for a birthday present from his friend Cayman and her family. We tuckered himself out and was fast asleep. Too cute, huh!


Kristen said...

The lightbox must have been set on the sleepy mood setting. :-) That thing is so much fun. I hope you all enjoy it!

I felt my stomach tightening up as I read through your story about Matthew's G-tube. I was in constant worry over Cayman's that it would fall out. I carried the emergency g-tube replacement kit everywhere with us in case it happened. For me it would have been frightening to put it back in myself. That's where nursing school would have come in handy during such a situation. It's crazy how quickly a hole starts to close up!

Tyler said...

I am sorry to hear about the scary G-tube situation. I hate to hear that there is more to come. I am glad that you got through that first hurdle though. Matthew looks so peaceful in his highchair. Those lightboxes are wonderful.

Diane, Tyler's mom

Keesler Chaos said...

Poor Baby! And poor you too! Hope we get to see you soon!

Keesler Chaos said...

Monday at 10:00 in jammies is our school uniform! I hope you get to enjoy your time off!

Sherri said...

That does NOT sound like fun. Poor Matthew! And poor Mommy :( We have been fortunate enough to have an uneventful couple of weeks. Hoping God gives us a little break before the big surgery at the end of the month! Can't wait to visit tomorrow :)

Kim said...

So crazy all the stuff that happened. I feel bad for poor Matthew. Glad you are potentially able the new stroller.

Lisa said...

What a week! I was just exhuasted reading about it :)

I hope that things are calmed down a bit and that the G-tube stays in place this time!

Katie said...

THAT is a busy week.

I am sorry about al the craziness.

I am very sorry to hear about the not nice doctor. I wish that they'd understand if you go to med NEED a heart! If they cannot be nice...pick a different career!!!!!
I hope the Gtube stays in this time!!