~Walk For Noah~

On Sunday, September 7th, the Investors Group is sponsoring a walk/run for children http://www.investorsgroupwalkrun.com/default.shtml
So our family has decided to participate in the 3K fun walk/run in an effort to "give back" to our children's hospital. If you would like to make a donation, please go to http://www.runningroom.com/dashboard/donations/findathlete.php?guest=1
Search for Noah Loewen.

Donations can be made online and you will recieve a tax deductable receipt.
All proceeds go to support the Children's Hospital Foundation of Manitoba.

Back Together Again

Noah is all fixed up and back together again. It was a difficult insertion this time and it took many tries over 2 hours, but his GJ tube is back in. I asked if someone could maybe superglue it in this time...I was only half joking! Really, someone out there needs to invent a better tube, or an easier way to insert it. Hopefully we can take a bit of a breather now before September rolls around and the kids are back in school, dragging every virus home with them. Despite the little blips, it has been a good summer, so much better than last year and for that we are so thankful!

Weekend at the Cabin & Tube Woes Again!

Noah has been doing well since discharge. He is now on Ancef IV until mid September which will hopefully help to keep him out of hospital. And once the antibiotics are done, we are hoping to try ethanol locks in his central line. It feels good to have some plan of action to hopefully try to break this vicious cycle of infections. No guarantees that it will help, but it's worth a shot.

We were able to spend a wonderful weekend at my parent's cabin at Lake Metigosh. The weather was perfect and we spent lots of time out on the boat. I forgot my camera, so I don't have any pictures to post, but hopefully you can email me some, Mom. This week the kids are at Vacation Bible School here in town and we are slowly getting back into school mode. Still have a couple of elusive school supplies to buy, but for the most part, we are all looking forward to September!

And now today Noah's GJ tube came out...again! It's becoming a huge frustration and I just don't know what we can do differently. He is just so busy and constantly tugging at those lines. I wish we could somehow super glue that thing to his stomach! His stoma is still a bit of a mess with yeast (we've been painting it with Gentian Violet), which doesn't help the situation. So tonight we will just run fluids through his central line and tomorrow afternoon Noah has an appointment to have it put back in. No, we are not very popular with the radiologists!

Home

Discharge finally! We are home.

Still Waiting

I'm starting to think there is some conspiracy to keep Noah inpatient. We went back in first thing this morning, only to discover that we were no where closer to getting things lined up for discharge. So after a long frustrating day, we were finally allowed home on a pass for the night, to return again first thing tomorrow morning. Hopefully things will be organized for discharge tomorrow, although I won't hold my breath. Doris, we miss you!!

Enjoying the Sunshine

Noah is technically still inpatient, but after lots of arm twisting and frustration, we finally managed to get him a pass for the weekend. My side of the family was out at St Malo for the weekend, so we met them there. It was a perfect weekend full of sunshine and we were so thankful to be out at the beach and not staring at the same four hospital walls. Noah did great and certainly doesn't look like he should be in hospital, however he still has to go back in tomorrow morning to tie up some loose ends. So many people have been on holidays, that it is taking longer than usual to get things sorted out for discharge. Surgery needs to take a look at his central line, which is growing granulation tissue around it, and home IV needs to be lined up again. But hopefully he should be home for good very soon as they are no longer doing anything for him that we can't do at home.

Klebsiella

Well, it seems as if Noah thinks that the August long weekend must be spent in hospital as we are here once again. He is growing a gut bug this time called Klebsiella (a gram negative bug that was not being covered by the Cloxacillin he was on). The gram negative bugs always hit Noah fast and furious, so he had a rough few days and got pretty sick. We hit him with lots of fluids, and after puffing him up like a marshmallow, we finally seem to have his fluid balance under control. His platelets dropped to almost nothing, and he was transfused twice. We also had issues with his potassium again and he needed a couple of potassium infusions. His hemoglobin is still quite low, but his platelets are slowly starting to come back up. And of course, with all these antibiotics, he's got yeast growing again around his stoma. He is back on full TPN, but we have slowly started reintroducing his tube feeds and they are going well.

Today Noah is looking much, much better, is off the oxygen (other than a crappy cold he caught here in hospital) and he's ready to bum scoot the hallways. Too bad he's under isolation again! We are still waiting for a plan to be formulated to spring him out of here. A team meeting is being planned to discuss where we go from here to stop this constant "same old" every few weeks. Thankfully, everyone is in agreement that something new needs to be tried, but no one is quite in agreement as to what that should be. I have been pushing to try ethanol line locks (that we learned about at the Oley conference), but we need to figure out the technicalities of actually doing this, when right now we have so many other things that need to run through his line. Praying that an answer can be found to reduce the amount of infections.

It is so much more difficult being here when the sun is shining and we are aching to just be outdoors. The hospital is such a very lonely place. Yes, we are thankful for the summer we have been able to have, and this makes me even more thankful for our trip, but 6 weeks out of hospital is just not enough time!

Something Brewing Again

Just a quick update.  Noah and Nichole went back to the hospital on Thursday with an unknown infection causing Noah to be lethargic and just not himself.  It is indeed a gram negative bacterial infection.  The exact bug is yet to be determined and with that a plan of action for treatment.  I will try to keep the blog updated as I know more.  For now, we simply ask for prayers for Noah's health and for comfort for Nichole as she spends these beautiful summer days in the hospital once again.  It seems like each hospital admission becomes a little more routine and with each one a few less ripples in the waters.  It may seem to some like it is just "what we do" but we continue to seek your prayers as much today as ever before.