Tuesday, May 27, 2008

All Fixed Up!

Monday couldn't have gone more smoothly...shocking, yes, I know!!

I called our home nutrition nurse first thing Monday morning, who arranged for Noah to go to radiology after his ultrasound. So we went in for his kidney ultrasound...the "stone" or "whatever it is" as the doctor stated, is still there and unchanged. He was a bit more convinced this time that it was a true stone, but still not entirely sure. But, since it doesn't seem to be causing any problems, for now we will just continue to monitor it and see what it does. Then it was off to radiology who took Noah in immediately and within 10 minutes, his GJ tube was back in place and ready to use! We were thrilled that everything went so well and that we avoided having to go through the ER!

And yesterday Noah finished off his 6 weeks of antibiotics. It's always a bit scary going off them. I always feel safer with them on board, but it is certainly nice to not have to run them every 6 hours! It makes our daily routine so much easier! TPN clinic tomorrow, and then hopefully the rest of the week is quiet.

Sunday, May 25, 2008

A Little of This & That...

It's been a busy week here. We spent tuesday and wednesday night in Brandon hanging out at the hotel while Brad was teaching. The kids had a great time and loved the special room with bunkbeds just for them. Noah did well and even allowed me to dip his toes in the pool for a couple of minutes.

But, of course, in true Noah style, things can't stay status quo for long! On Friday night, he managed to yank out his GJ tube by getting it caught on the deck outside. This always seems to happen on the weekend. And usually he ends up getting admitted because there is no radiologist available to put the tube back in. So, I decided not to take him in until Monday, and just run fluids and our emergency bag of TPN to get us through the weekend. Hopefully tomorrow we can figure out a plan to get it put back in and avoid an admission. He also has his kidney ultrasound tomorrow to check on the status of his stone. I'm just praying that we don't have to go through the ER for the tube issue!

To top it all off, he's got a nasty head cold and his poor eyes are constant fountains of drainage. Poor little guy just looks miserable!

Monday, May 19, 2008

Still Stuck with Oxygen

I was looking forward to posting a farewell message to Noah's oxygen concentrator, but no luck...his overnight oximetry study showed some significant desats so we are stuck with it a while longer. Our respiratory doctor is recommending another formal sleep study to follow up in the near future. He is battling yet another cold (his 3rd since we came home almost 4 weeks ago), but thankfully he's been fighting them off with the help of the IV antibiotics. We haven't been able to take him out much over this long weekend. Today we had rain, and Saturday we had an unbelievable windstorm that even tore the roof off our local community center. http://www.winnipegfreepress.com/local/story/4174859p-4763580c.html

We are off to Brandon tomorrow for a couple of nights. Brad is teaching, so we decided to take the kids out of school and tag along. The kids are counting down the hours until the pool with the waterslide!

Thursday, May 15, 2008


It's been a pretty uneventful week. Physio on Monday and more bloodwork today. We also did an overnight oximetry study last Thursday without Noah's oxygen, to see if he still needs it. He did have some desats that we noticed, so I don't think we will be able to stop the oxygen, but we are still waiting to hear the final results. Oh, what a joy it would be to not need the oxygen anymore. Although, we have become so used to having it, I would be very nervous to give it up.

The weather is finally cooperating around here and we have been able to enjoy some beautiful afternoons outdoors, where Noah is happiest. I think he could quite literally live outside! We picked up our wagon from the children's rehab center today. They modified it by adding a waist and crotch belt so that Noah can sit in it safely. The kids have no school tomorrow so I think we will try it out at the zoo.

Noah enjoying the backyard...

Noah sporting the new portable Prism pump that we are trying out in place of the Infusemate. It's a bit heavy for him, but he manages. We are now able to concentrate his formula so that he gets 2 hours off his feeding pump in the afternoon (one less thing to drag around). During this time off, I belt the fanny pack to him and he does well dragging it around...

Monday, May 05, 2008

Wacky Weather

. Can't beat the wierd and wonderful Manitoba weather. A fresh blanket of snow yesterday, and now today, a beautiful 14C evening. Noah absolutely loves being outdoors as much as possible, and spends much of his day banging at the patio door until we finally take him out!

Noah is doing well and seems to have beaten this cold on his own. Thankfully we managed to avoid another hospital visit. It's gone through the household though, and it's really taken me out over the past few days. He is completely off his basics again and just on lipids at night, plus his continuous tube feed at 31cc/hr. We are also trying out a new ambulatory Prism pump to run his D5W during the day... so far so good, although it is heavier for Noah to drag around. Still doing IV antibiotics every 6 hours for another 3 weeks, which is exhausting in itself.

Not really any weight gain (still around 16 1/2 lbs) with so many ups and downs over the past few months, but he is growing... or else the truck is shrinking...

~June 2006~