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Jul. 9, 2009
some answers, some questions
We got back from the doctor safe and sound. :-)
On one hand, Noah is most certainly acting "perkier" today. I had a blast with him while waiting in the exam room - he wanted Jeff and I to make an alligator, a whale, and Dorie and Nemo (from Finding Nemo - BIG passion in Noah's life) out of linking blocks. Now, I'll be honest - these were pitiful creations (Nemo was literally a yellow block LOL), but they were good enough for Noah and his wonderful imagination! From that point on, we enacting all sorts of versions of Nemo stories, with Nemo sometimes being Nemo and sometimes and being Marlin (the dad). Of course, there is no alligator in the movie, but Noah really loves alligators and apparently felt that adding a predator to the plot really improved things. I know it sounds goofy, but Noah had so much fun using his alligator and whale (who knew whales were so fierce, or that they roar?!) to hunt the fish, "swim" on the exam table, get into swordfights using a couple of tongue depressors as swords - and, of course, try to eat me. :-) He was silly and giggly. It was wonderful.
On the other hand, Noah's line site does not look any better. Today it looked considerably worse than it did yesterday and was swollen with a good bit of drainage. The doctor told us that he doesn't feel that any of the drugs are doing anything for the infection, and that he just doesn't know what we will end up needing to do with the line. He cultured the drainage, drew a blood culture from the line, and re-drew the infection marker labs that we did yesterday.
The plan is to stay the course until A) Noah gets worse, B) the cultures show up with something, or (my personal favorite, even if the doctor didn't mention it) C) Noah gets better.
We've got a pretty low threshold for taking additional action. I'm honestly not convinced that we are going to be able to save the line, and I'm honestly not sure I want to keep trying. NO ONE, including Jeff and I, want to see central line #6 going into a 2 year old who will need access for his entire life, but I just feel that pulling the line may be the only way to clear the infection. Of course, I could be wrong! Fortunately, I think that Noah is going to make it very clear whether this line can stay or not, so I think that it should eventually become crystal-clear that the line can stay or that the line must go.
Please pray for wisdom regarding the line. Of course, we want to be able to save the line, but if it has to go I would rather take it while Noah is minimally affected (relatively speaking!) as opposed to thinking we cleared it but having the infection come back bigger, badder, and meaner.
Please also continue to pray for Jeff and I as we maintain Noah's current VERY complicated and busy schedule. He has a nice long "break" in the morning, but the rest of the day involves one procedure or medicine after another until about midnight. I'm blessed with a husband who has done almost all of the late night and early morning stuff so that I can sleep - and done it without being asked! I know some dads of special needs kids can be very hands-off - even clueless about their children's care, but Jeff has always been AT LEAST as involved and hands-on as I am. Over the years, we've settled into a certain division of labor - I usually mix antibiotics while he usually administers them, he usually mixes TPN while I usually mix and administer the subQ IG, etc. In a pinch we can do the other person's job, but most days we have a pretty smooth rhythym and each know what to expect from the other. Even with things as complicated as they are right now, our teamwork allows our entire family to "just keep swimming" and be able to entertain, visit friends, go to church, etc. even while keeping the medical schedule working properly. I just can't tell you what a blessing that is to me!!
A week from Monday Jeff and I will be celebrating our 18th wedding anniversary.  While neither one of us ever dreamed that our life would one day look like this, I'm humbled every day when I see so clearly how God chose the two of us to be together, and how He's equipped us for His various callings in our life!
Dinner (eggs, bacon, and hot homemade blueberry muffins) is calling. I'll need to post that thank-you list in another post. I hope to get up some pictures of Hannah's birthday AND to do a slideshow of our Disney trip very, very soon.
Blessings,
Kate |
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Posted by 
Posted by Anonymous 
Posted by 
Jul. 9, 2009 - Untitled Comment
Oh Kate, your stamina amazes me - it must be the Lord working through you, and holding you up. Thank you for the update. I'm SO glad that Noah is perkier today, though it is upsetting to hear about his line.
18 years!! Your marriage is almost old enough to vote! :) I hope you'll be blessed beyond measure on your anniversary. I'm sure this isn't what you pictured, but God is SO using the two of you, and your precious family - and of course nothing is better than being at the center of His will!
Grace to you, sister - praying for your little guy, and his mama too,
The Wilsons in VA