Off on another wild adventure for the McNair’s!! We head down today for the week and will get at least 8 appointments in while there…..actually a “light” week for us!! All three see Pulmonology on Tuesday, Madison will see her rheumatologist and be hooked up for a 24 hour halter monitor on Wednesday, and Chance will see the motility GI nurse and the girls will get sleep studies done on Thursday. Easy peasy…easy peasy.
Prayer requests for the week…..
That our pulmonologist is not too annoyed with me that we have still not started oxygen with Chance & Madison. There are a hundred excuses…..not one good enough….but I will spare you all. If I am honest, it’s mostly me struggling with the idea. I am still trying to wrap my mind around it. Reality is though, it might make a huge difference for the kids and I just need to get over myself and help them go into it with the right frame of mind.
That our rheumatologist finds a decrease in inflammation in Madison’s knee’s, indicating that the steroid injections have worked for now. We are almost 2 months out since they were done, so we should be able to tell where things stand. If they have not reduced the inflammation, we will be faced with starting another medication to gain control, and no one likes the idea of starting something that will make her even more susceptible to infection.
On the halter monitor we’d actually like to see her have one of her heart-beating-hard episodes in hopes that we can see what might be happening during those times. At the same time, I would be thrilled if it shows nothing and we are able to walk away with good news.
That Chance will have gained (even just a little) weight.
And finally, that the sleep studies give us the information that we need to make adjustments to Madison’s Bipap, and that either there is a clear cut reason for Abby’s fatigue that are sleep related (with a correlating easy fix please) or that her sleep study looks pristine.
Some of these answers will come while we are there this week, while the rest will trickle in over the following week or so. I will keep you posted.
Having a “light” week means we will get some good time to spend with family and friends and we are looking forward to it SO MUCH!! We will no doubt be entertained, loved on, and very cared for while we are there. Sure does make going down so much easier to do. Cannot even imagine making it down like we do without that blessing.
In other medical news….
Chance did at least maintain his weight at his last weight check. While we would have liked to see even a small gain considering the insanely high number of calories he’s taking in daily, no loss is good too. We will see how his weight looks this week, then he’ll have another weight check on the 10th at the peds office. With the lack of gain, he now needs to more consistently get in 3 supplemental drinks a day, and we are going into the next plan of action…..checking other organ systems in case they are stressed and consuming more calories. We will see pulmo this week and will hope that perhaps the o2 at night might make a difference, and will do an ECHO to check his heart when we are back in Houston on the 17th. We will talk with the Motility GI nurse this week on what the next steps will be if neither of these systems appear to be the problem.
Otherwise, the boy is doing pretty well right now!!!
Madison is having some “female problems” that I won’t share here and we need some prayers that we can find some solution for. She’s worn out dealing with it and really, really needs a break.
She is <knock on wood> 14 days out since her last antibiotic and is staying infection free thus far!! We are still in that 21 day window that she likes to come up with another one, so not quite out of the woods, but getting there. Sincerely praying she can get a break for a while. We will re-test her Mycoplasma levels on the 14th and would very much like to see those numbers come back not showing something chronic.
Fatigue is still pretty intense, but 2 weeks of no infection means I am seeing at least a little improvement.
Abby started Florinef about a week ago to help with her low blood pressures and at least thus far, we are not seeing any negative side effects to it. Not sure how much positive we are seeing yet, but watching for them. Hope is that it will lower her heart rate and stop the postural dizzy spells she deals with daily.
Otherwise she is really behaving herself right now!! Such a good girl<grin>.
Please keep our little friend Cooper in your thoughts and prayers right now. He is, quite literally, fighting for his life and he needs comfort, as do his family and friends.
Thanks so much for the thoughts and prayers this week!!! It’s been more of a trial than usual to get everything in place and taken care of this time, but all appears to be on the right track now and we should have a productive week.