Posted in Noah Updates
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Today's IVIG appointment went really well. Noah fell asleep quickly (thanks to the benadryl) and stayed asleep for the first couple of hours, even sleeping through all of the vitals checks. Noah's great friend Zach and Zach's mom Marla came by for a visit which was great. The little cafeteria in the building was closed so we all went out and brought back lunch while Noah napped with Jeff. When Noah woke up he was content to watch some DVD's and relax while nibbling a few crackers. When it came time for Noah's Infectious Disease appointment, his IVIG treatment was still running so his nurse came upstairs to ID with us. She just kept going with his vitals and adjusting the rate of his infusion right through the ID visit. (We have such GREAT health care providers right across the board!) ID is considering switching Noah's flagyl (the antibiotic for his C. Diff.) to vancomycin. Everyone has been reluctant to do this because vanc is the ultimate "big gun" antibiotic and he has already had to take it SO much. We are going to do some cultures to confirm that the C. Diff. is still an issue and will switch to vanc if the cultures are positive. Noah looked really "off" today. His eyes were red-rimmed, he was pale, and he is running a low-grade fever. By the time we got to ID he looked pitiful enough that the doctor ordered a full set of infectious disease labs including blood cultures. These are the labs that would be drawn if we took him to the hospital with a fever. The hope here is that if Noah does have his fever go up, we could avoid a mad dash to the ER. If the labs come back negative, we'll know not to be too concerned about whatever caused the changes in Noah today. If they come back showing something, we will need to decide how to proceed (inpatient, outpatient, or wait and see). If Noah starts to look much worse and has to go in, this afternoon's labs will be compared to the hospital labs to see if he is trending downward. Ugh. I'm voting for a good night's sleep and looking better tomorrow!!! Every time we have seen ID we've been told not to keep Noah "in a bubble" and to let him experience as much normal life as possible. Today things changed. Because influenza is so widespread and severe this year, and because Noah would be highly susceptible to serious complications if he caught it, he is on almost complete "house arrest" as of this point. He isn't to go out in public or to group gatherings of any kind (including church) AT ALL. We are to monitor this site http://www.cdc.gov/flu/weekly/index.htm and wait for it to show that there is a sharp decline in the number of influenza cases in the Southeast. When that happens we need to wait two more weeks before he can go out. All told, it will probably be at least 6 weeks before we can take Noah anywhere. We need to pray that the other children will also be protected so that they do not bring anything home to Noah. We are doing all we can on the vitamin/herb front to build up the other children's immune systems. I'll need to consolidate my errands as much as possible and have Hannah keep Noah home when I do need to go out. Jeff, Hannah, and I will probably rotate staying home on Sundays. Of course, this also means that Jeff's and my standing Wednesday lunch date (while the big kids are at the Y) is off until further notice . . . . In a way, though, this is a blessing. I've been uneasy at the thought of taking Noah out at all, but didn't want to be overprotective. It is sort of a relief to have permission to just hunker down and keep him home - like I can pass the buck and say that we are just following orders. Make sense? Well, Mr. Noah is sitting behind me doing all sorts of dear tricks (playing peek a boo with "his baby" and blowing her kisses) and I can't POSSIBLY sit here and type when I could be watching him. :-) Gotta go! Love, Kate |
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