|
Jul. 20, 2009
spinning our wheels
The good news is that it looks like we are going home later today. The not-as-good news is that I don't feel like have accomplished anything at all here. Noah hasn't run a fever in 24 hours and his cultures are all negative. That is wonderful, and it is the reason we are going home. On the other hand, I still have a boy who is running low-grade fevers on and off and who is VERY tired almost all of the time. He sleeps 12 hours or more, lies in bed to watch a video, gets up to play quietly for a little while, then gets back into bed and sleeps until lunch. Again, he rests in bed and/or plays quietly, then naps the rest of the afternoon, sleeping as late as 6:30. He has a quiet evening and is asleep by 9 PM. This isn't normal for an almost three year old.
He loves to sit on the floor with some little plastic toys and play with either a tub full of water or a tub full of snow. Even when he is having fun sitting there quietly playing, I'll look up and find that he is lying down on the floor taking a break. It's really hard to see. Of course, he has a couple of brief bursts of activity lasting maybe 15-20 minutes each day, and it seems that he decides to get up and get perky right about the time the doctors walk in the room. As a result, I found myself frustrated all weekend that they weren't seeing the same boy that I am seeing.
I ran into our infectious disease doctor in the hall yesterday and it was an enormous blessing. He had been following Noah's labs (which all looked OK) and the reports from the other doctors (who all kept seeing Noah only at his best). He seemed very concerned when I explained the "big picture" of my concerns for Noah and seemed to take them seriously. He is also concerned about the mysterious big red spot on Noah's chest. I'm not even sure I've blogged about the spot. Noah's broviac goes into his left chest, and we've battled the redness, swelling, drainage, etc. from the actual broviac site. There is also a red spot - a perfect circle the size of a silver dollar - which is above but not touching the broviac site. It showed up when this infection showed up last month. When the broviac looks better, the spot looks better and fades in color. When the broviac site gets more red and looks worse, the spot looks worse and even gets swollen. When the broviac site really looks bad, a line will extend down from the spot to the broviac site connecting the two areas. The line looks like an ice cream cone with the spot sitting on top and the bottom tip of the cone touching the broviac site.
Yep, I know it's weird, but Noah's nurse at home and many people here have seen it. It seems like it must be related to the infection, but I've had a really hard time getting anyone to seem concerned about it. The ID doctor was concerned about it yesterday when I told him it was still there. The plan now is to have the spot biopsied. This excision biopsy will involve an incision that is small, but is large enough to require a couple of stitches. We had hoped to get that done while we are here, but it's now looking like the most expedient plan is to go home then come back this week for the biopsy. I'm really hoping and praying that this will yield useful, actionable information.
The wound care team is also coming up to look at Noah today and see if they have any better plan/procedures/advice for helping the area around the broviac heal and stay healed.
No one has any good answers about Noah's extreme fatigue, except to remind me that Noah's disease is progressive and we could be seeing disease progression here. It's possible he's feeling so bad because of the mito and not because of the MRSA. It's pretty bad when MRSA starts sounding like the best option around! Noah's birthday is in a couple of weeks, and folks have been asking what he would like. We had planned to ask for donations toward some special little trips for him - to a zoo in SC where he could actually feed some zebras and to a train station in NC where he could actually ride Thomas the Tank Engine. Now I don't know. If he doesn't feel better, I don't know if he would even be able to enjoy those special outings.
As frustrating as this can be, I do know that I know beyond a shadow of a doubt that NONE of it is a surprise or a challenge to Noah's creator. There is a reason why I was here this weekend instead of being with my family. There is a reason why this is all going on. While I might not like how Noah is doing right now, the God of all comfort is right here with us, and I know that His grace is and will be sufficient for whatever the future holds. Yes, there is discouragement and heartache, but it isn't a panicky or faithless situation.
As you think of us and pray for Noah, please pray for our business as well. The CPSIA has come very close to shutting us down. When Jeff lost his job over a year ago, we planned to take advantage of his availability to build Hands and Hearts to the point that it would fully provide our income. At a time of year when we would expect to receive 40-50+ orders per day, we are only receiving a few orders per week. Our history kits were the big draw for our business, and we can't sell them right now under this law. While we have hundreds of other really neat items that are still for sale, they are items that lots of other businesses are also selling, so we are a very small fish competing in a really big pond. I don't generally "plug" our business on this site, but did want to say that we are having a very nice sale right now - 20% off everything in our store. The coupon code for the sale is only available via our newsletter, but if you sign up for the newsletter on our site (www.handsandhearts.com), a copy of the newsletter with the code will be delivered to your inbox immediately. We have hundreds of really truly wonderful educational items on our site, and we guarantee shipment of in-stock items within 2 business days or your shipping is free. If you need items for your homeschool (or just want some neat educational items for your children), we would be incredible blessed if you would consider shopping with us. You are welcome to share that information in any way without further permisssion - on your blog, message boards, whatever. The sale ends Friday at midnight.
I can't end this post without giving public thanks for my most wonderful husband. Today is our 18th wedding anniversary. I've made plenty of mistakes in my life, but saying yes to this man is one of the best choices I've ever made. He is my best friend in the world. He is a hard worker and a diligent man. He's an incredible advocate for Noah and is responsible for at least as much of Noah's daily care as I am. He's also a wonderful dad. We had a lot of fun family plans for the weekend and Jeff made sure they all happened even though I wasn't there. I don't know many men who would take 7 children (including a baby) all over the place doing fun stuff all weekend, but it was no big deal for Super Dad. :-) He took Sarah to pirate camp all morning Saturday. It was a "Girls Can Be Pirates Too" camp at our museum. She had a blast - got her nails painted, made a pirate hat trimmed with hot-pink fake fur, played games (and won a prize!), had a wanted poster printed up, and more. It was just her speed. Saturday afternoon he drove all of the children up to a mill in Pickens for a re-enactment, then brought them by the hospital for a little visit with me. Matthew had entered a local ice cream eating contest which took place Sunday afternoon, so Jeff took them all out for that. Matthew was the grand prize winner - that child ate a pint and a half of ice cream in 2 minutes LOL. He won a t-shirt, free ice cream coupons, and an MP3 player, AND got interviewed by the newspaper. Of course, with Daddy and six siblings cheering him on to victory, I don't see how Matthew could have lost. :-) It also helps that he appears to be totally immune to "brain freeze." (I won't comment that perhaps there just isn't much to freeze . . . . LOL)
Anyway, Jeff could have pouted and moped. I know he's been struggling with discouragement on many fronts just like I have, and he could have given up on all of those plans since I wasn't around to help, but he didn't. Every time Noah is in the hospital he just steps right up to the plate and handles things with astounding grace. He makes an awfully good mom. :-) Assuming I DO get Noah home today, we'll spend this evening getting Noah settled in and all of his medical supply shipments unpacked and organized. It won't be a fancy or romantic evening, but I'll be spending it with my best friend and that is good enough. If I don't get home today, he'll be waiting for me until I do. :-)
I may not get to update if we leave, but will certainly post something if we have to stay for some reason.
Blessings,
Kate |
| �
Post A Comment! �
Send to a Friend!
|
Comments
|
|
|
|
Posted by Anonymous 
Posted by 
Posted by 
Posted by 
Posted by 
Posted by 
Posted by 
Jul. 20, 2009 - Praying!