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.

Hospital Update

It's been a long stressful week and I've been without computer access, hence the lack of updates. Noah was admitted on Monday, requiring oxygen, fluids and antibiotics. Unfortunately, an error was made in the ER, and instead of recieving a 150cc fluid bolus, he got 500 over an hour. This is a huge amount of fluid for someone his size. He began having even more difficult breathing once we got on the ward, which we thought was likely from the fluid overload. So the resident decided to restrict Noah's fluids overnight. By Tuesday morning, Noah was once again getting dry, but it took all day for the service to sort things out and get some fluids running. All these things, plus the fevers and high respiratory rate have put Noah in quite a spiral with his fluid balance. His potassium dropped to a frightening 1.8, and we are still having trouble getting his electrolytes sorted out. He has recieved multiple potassium boluses and yet his potassium is still not up to a normal value. No one has figured out where he is losing all this potassium. But, as we know so well from the past, Noah tends to have wierd and wacky blood work results when he is septic.

And yes, septic he is once again. His cultures came back growing a staph bug (MSSA). Staph is a nasty bug that likes to seed in bones and in the heart. So Noah had a bone scan done today. It showed some hot spots on his knees, hips and his left big toe of all places. We are unsure if these are infections or signs of chronic anemia. He will also have an ECHO tomorrow to check the status of his heart. I was planning to write that he has been fever free for the past couple of days, however, this evening Noah spiked a fever once again and so once again, we are waiting on new blood cultures. He is still very lethargic and just plain miserable. We did get a couple of smiles today with Cecelia from music therapy showed up with her guitar!

It's been a particularly difficult and stressful hospital stay. I've been having to fight so hard just to be heard and it is both frustrating and exhausting. Memories of what we went through during our last stay make being here so much worse, and there are many here that I don't trust and likely never will. But Noah..our strong, brave little fighter...his health is still most important here, and so I will continue to do whatever I have to do to advocate for him and protect him the best I can.

Here We Go Again...

Noah did not wake up his bright and cheery self today. Still spiking and I am not liking the way he is breathing. It is a beautiful spring day this morning and we are off to the ER once again... I am just so frustrated.

Thief River Falls

We managed to get away this past weekend with some friends to Thief River Falls. They have a wonderful hotel/casino with a huge waterpark for the kids. Kailyn & Joshua had a blast and are already asking when we can go again. Brad tried his hand at poker...didn't go so well! But a fun time was had by all. Noah did enjoy watching all the waterpark action. I tried sticking his toes in, but he wasn't having any part of that and literally clung to me for dear life! Too much like the bath I guess, which he hates with a passion.
But unfortunately, he was not well all weekend. Starting friday he began running temps. He responds well to Tylenol, Advil and Ventolin, but the fevers just keep returning. So, poor little guy spent most of the weekend sleeping in his stroller, not really caring about a whole lot. I am getting more and more concerned that we may be dealing with a line infection once again. And so I am now in hospital "prep" mode here...unpacking, doing laundry and repacking. And I guess we will see what the night brings. Praying that Noah will wake up his bright, cheery self tomorrow with NO FEVER! I am just SO not ready to go back in and I haven't quite figured out how I will make myself bring Noah back there if he does not improve. I am going to need a whole lot of strength and prayers from above. I just don't have the fight to do it on my own.

3 Weeks!

Noah has been home from hospital for 3 weeks now. This is usually about the time he ends up going back in, but so far so good! Brad has been away in Texas http://www.findfirstaid.blogspot.com/ so I've been a bit nervous, but apart from a bit of a line scare a couple of nights ago, all is well. As for the line scare, Noah's line running his Infusemate must have gotten kinked off sometime during the day. Since there is no alarm on it to tell me if it is actually running, I had no idea it was kinked and not running. So when I tried to hook up his lipids in the evening, the pump wouldn't run and his line was blocked. The thought of having to go to the ER with a clotted line had me panicked! But after about 45 minutes of working on it (flushing with heparin) and lots of prayers I finally got it going and now it seems to be working well again. On Friday we are getting a new portable pump to try out instead of the Infusemate, which will hopefully have an alarm on it!

Noah is busy, busy, busy these days. A big change from last time he was home when he still spent alot of time lying on the floor. Now he is in constant motion and gaining strength each day. He is now weight bearing and will stand for a couple of minutes at a time against the couch or coffee table. It's exciting to see so much progress in this area. He is looking like such a big boy!!

Our most recent stats: At 2 1/2 years, Noah is 28 inches long and 16lbs 7oz (7.47Kg).

Spring Break

Just got back from our mini vacation... we spent a couple of days at my parents and a couple of days at Brad's parents. All went well and Noah is doing great!

Our afternoon with Great Grandma

Noah with cousin Judah...holding the toy he loved to bang on Judah's head, poor kid!

Noah loved the sunken living room step. He did take a couple of tumbles off it onto the carpet.

Here's trouble! Cousin Maddy and Olivia

Grandma Harder with Noah

Emptying Grandma's cupboards. Pie anyone??

Kailyn & Noah with cousin Bethany

The Loewen grandkids (minus baby Natalie)