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.

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!

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!

Sunshine...finally!

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...

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~

Turning Around

Noah has had a much better day today and with lots of ventolin, seems to be turning around. No more fevers today!! So hopefully we will be staying put here for a while. This life of being in constant limbo gets so frustrating.

Home...But For How Long??

I was planning to write a nice update about how well Noah was doing at home, however, I think he picked up something in hospital before we left. He started with cold symptoms friday evening when we got home. Yesterday evening he started with the fevers again. This morning...fever and nasty cough. Ventolin and tylenol are helping, and he's on Cloxacillin IV every 6 hours to treat the bone infection. So we will wait and see...again.

Home

Just a quick update to say that we are home and doing well!! More to come tomorrow...

Kidney Day

Today was kidney day...Noah had his kidney ultrasound done and it came back with interesting results. Both kidneys look like at one point they sustained some damage. His right kidney is 1 1/2cm smaller than his left, and his spleen is larger than normal. And, another suprise...he has a kidney stone in his left kidney. What does all this mean? We aren't exactly sure, however, his kidneys are still doing their job, and his bloodwork looks ok, so for now, there is really nothing to be done other than be aware of the problem. It's worrisome to hear, however, not that suprizing considering all the stress those kidneys have endured. Hopefully the kidney stone doesn't cause Noah any grief anytime soon. He also had a VCUG test done today, which was normal (no sign of kidney reflux).

Over the weekend, we noticed that Noah wasn't at all interested in weight bearing as he had been before he got sick. As well, Noah's ESR doubled from Saturday to Sunday, shooting up to 110. These findings are leading everyone to believe that Noah liekly does have another osteomyolitis (bone infection). He will have x-rays done tomorrrow to see if anything can be pinpointed. If an osteo is confirmed, we will be looking at 6 weeks of IV antibiotics. However, once Noah's ESR begins to normalize, we should be able to finish out the course of Cloxacillin at home.

Despite all this, Noah is looking great and getting very bored cooped up in this room. We've been able to start up a very small amount of feeds today, which we will work on slowly increasing as we start to decrease his TPN.

Hospital Day 6

It's absolutely amazing summer temperatures outside right now...can't wait to enjoy a weekend outside as a family. Brad is doing duty at the hospital tonight and I am at home trying to get the house sorted out, laundry done and spend time with Kailyn & Joshua. Feels so lonely to be here without Noah, but it is a much needed break from the stress of the hospital. Noah is doing much better...sitting up, playing and finally handing out those precious smiles once again. And most importantly, no more fevers, no more oxygen required and his potassium is beginning to straighten itself out. So it looks as if we should be able to hang on to this line. His ESR rate is still high though, which signals inflammation somewhere in the body. We will repeat it tomorrow to make sure that it is trending down. He is still in isolation, but hopefully he will be released from his room this week and at least be able to go down to the playroom.

Nephrology was consulted yesterday in regards to why Noah had this very scary potassium problem. Below 2.5 is severe hypokalemia. Noah's lowest level was 1.8, a level low enough to easily have put him into cardiac arrest or lung paralysis. The nephrologist is fairly convinced that it all stems back to when Noah was on Ampho B (an antifungal that is particularly hard on the kidneys). He likely has a tubular disorder from this that may last for months or perhaps years. This usually wouldn't give him any major issues, except that he was overloaded with sodium in the ER when the fluid bolus mistake occured. His kidneys couldn't handle it normally and it put him in this hypokalemic state. It was a very unfortunate error, but thankfully after multiple potassium boluses, his body is finally correcting itself. Noah will have a kidney ultrasound done after the weekend to make sure there is nothing else going on.

Once again, thank you for all the prayers, meals and visits. Please continue to pray for healing and endless amounts of patience.