Monday, April 28, 2008
Sunday, April 27, 2008
Friday, April 25, 2008
Monday, April 21, 2008
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.
Saturday, April 19, 2008
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.
Thursday, April 17, 2008
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.
Monday, April 14, 2008
Sunday, April 13, 2008
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.
Wednesday, April 09, 2008
Our most recent stats: At 2 1/2 years, Noah is 28 inches long and 16lbs 7oz (7.47Kg).
Wednesday, April 02, 2008
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)