Only have a moment to post here but wanted to update on Noah. God has been so good and things are starting to settle down and feel more manageable again.
Our new private duty nurse is working out beautifully and we've been very impressed overall with all of our interactions with the new nursing agency. We do only have nursing from Mondays-Thursdays but they feel that they'll be able to fill the Friday-Sunday hours very quickly.
We continue to be truly thrilled with our hospice team. They have implemented several changes already which will be very beneficial for Noah. We already have a full stock of blood draw supplies on hand (culture bottles, various colors of tubes, etc.) but we now have standing orders for the private duty or hospice nurse to draw a full set of infection labs at the first sign of fever, AND we now have supplies on hand for me to mix and prepare IV antibiotics here at home. This means that at the very first sign of illness I can be preparing a bag of IV antibiotics while the nurse draws labs without our needed to contact the doctor first. This will enable us to have labs run to the hospital and antibiotics running within minutes of his spiking a temp. Our previous system (call Dr. B, get orders, draw/drop off labs, wait 3-4 hours for antibiotics to be delivered) was still exponentially faster than anything that could be done in a hospital setting, but our new system truly represents an incredible level of speed and responsiveness. We will of course still be contacting Dr. B and will adjust antibiotics as needed based on lab results, but we won't have any delays at all in getting in the first doses of our "front line" drugs.
The second big change is that Noah is now on oxygen while he is sleeping. He has a sleep study scheduled in October but since he is SOOOO tired and sleeping SOOOO much, hospice suggested just going ahead and trying oxygen via nasal cannula just to see if it helped. We've only done it a few days but he's woken up for at least a couple of hours every single evening since we started! It's too soon to really say that the oxygen is responsible for his increased perkiness (could theoretically be a fluke) but if this continues than the oxygen will be here to stay. Right now we are using a large O2 concentrator at bedside but if he starts using it during waking hours then we can get some small portable tanks to use outside the home.
Now, if you know Noah, you are probably staring slack-jawed at the computer screen wondering how many people had to sit on him to get him to wear the cannula LOL. He was NOT remotely interested in this new plan and was honestly pretty upset about it. I offered a variety of incentives, all of which he declined until in desperation I suggested that I could make him a nap-time playlist on YouTube and play it on his iPad while he's sleeping - THAT of all things is what worked. :-) He now has a playlist of his favorite worship songs and hymns and he'll put the cannula on himself as long as we play "his music." (He's actually listening to it and singing along right now - sweet boy.) He's been very, very clingy since he lost his beloved nurse a couple of weeks ago and he still wants someone to lie down with him for a little while at nap time and bedtime - there's never a shortage of volunteers :-) and I do consider it an improvement that he's willing to have a sibling snuggle instead of insisting on Mommy ONLY.
I am really proud of him for being such a good sport about the O2 so I also printed off a little octopus dot-to-dot picture to use as an incentive chart (draw to the next dot each time he has to put on the O2). A friend had sent him 4 mid-size Lego sets a few months ago for me to pull out when a big prize would be really helpful (things like surgery). This has been a huge blessing and since we've used them sparingly, we have one left and I've told him he can have it when he finishes his octopus chart.
Noah gets his supra-pubic catheter changed out on Thursday this week, so please pray that this goes smoothly and that he stays infection free. We'd also appreciate prayers for the following:
-- for the rest of our nursing hours to be staffed by just the right nurse(s)
-- for our homeschool year as we start on Monday
-- for continued provision for a new (used) bus. (Ours is running again - it was a loose fuse which our absolutely precious mechanic fixed right in the Walmart parking lot! This was a huge answer to prayer.)
A friend wrote this amazing article about Noah at Examiner.com http://www.examiner.com/list/a-boy-named-noah and we are praying that the Lord will use it to help with the fundraising. I am very enthusiastic about this concept of just giving a dollar. I'll admit that in the past I'd see financial needs and not give because I could only afford a dollar or two and I felt like it would almost be an insult to give just a dollar when so much was needed. Now I really, really "get it" and understand that many $1 donations can add up very quickly! According to FB, almost 3,000 people saw this article just through the Praying for Noah page - imagine if each of those views had netted $1!!! Even if you can't give $1, could you share this article?
I'll update again after we get home on Thursday and sooner if I have news (or time LOL). Thank you as always for your prayers for us.
Blessings,
Kate
