We arrived Sunday evening to find several of our friends, as usual, at the Ronald McDonald House (RMH), happy to see us. I was reminded, again, how blessed we are to have this home away from home. We settled in, got dinner, then hit the hay knowing we had a very early morning on Monday.
Monday morning all three kids had hearing tests and a visit with the ENT. Chance has been seeing Dr. R since last year when we thought.....no, greatly feared....that he was losing his hearing. Dr. R was our hero when he found the easiest of answers....something far too rare around here....Chance's ears were just full of wax!! While removal was not fun, Chance was astounded at how well he could hear when it was all done, and we realized he'd likely not been hearing well for a while. Needless to say, we like Dr. R...a lot. He is easy to like though....he's got a great bedside manner, plays in a band on the weekends, so he and Chance have plenty to talk about, and is just generally a pretty cool dude. When we saw him in November, he suggested that the girls really should be followed too, so we made appointments for them then, not realizing there would actually be a few things to talk about, ENT related, by the time we saw him.
All three passed their hearing tests with flying colors. As I expected. Proving they really just are not listening to me...LOL. Chance's visit was pretty boring.....a bit more wax to remove and we were done!! Miss Abby has had the sinus infections since we saw him last, so we talked a bit about that, and basically he told Abby she has to do the nasal flushes, like it or not. We will see him again in 4 months, at which time hopefully she will tolerate the flushes and have no more issues, and decide if more needs to be done. Overall though, he really does think we have cleared the infection and won't likely need to worry about it again. Madison has been, since last August, having episodic swelling of just the left side of her face. When it first happened, she additionally had partial paralysis of that side, and no one was quite sure what to make of it. The preceeding episodes have not included the paralysis thankfully. When the paralysis was involved, the thought that it might be an issue with the saliva gland did not even enter my mind...how could something like that cause paralysis??!! But as it happened again and again, and that aspect was not included, the thought had occurred to me. Finally, this last week, our ped wondered about it also and thought we should consider some imaging to see. Whatever it is, it is not constant, but it happens pretty regularly. Dr. R agreed that we should get an MRI and try to figure this out. It turns out that there is a nerve that runs through the salivary gland, so it CAN cause paralysis sometimes, so maybe this is what we are dealing with after all. There is no rush, and we'll get the MRI done in August, and see where that takes us. Otherwise, from the ENT perspective of things, all three are doing well. My kind of appointment!!
After the appointments and a couple of errands, we returned to the RMH to await a couple more of our friends due to arrive for a stay. Madison could not have been more thrilled to see "her love" Celeste, and Abby about burst when she saw her friend, Harley arrive!! We were further entertained and loved on when our besties, the Andrew's (well the 2 female ones) came for a visit and we went and ate pie. Madison was up and down all day, and looked pretty bad by evening, and her g-tube site was NOT happy by the time bedtime rolled around. We were seriously muddling through, but hanging in there.
Today we had appointments for all three with their mito doctor, and Madison saw the immunologist. In general, it was an update appointment for Chance and Abby, and while both have things going on, all is being handled well, so there wasn't all that much to talk about with them. I had given Dr. K the heads up, so she knew today was really about Madison. In the end, like me, she feels most everything we are dealing with right now is related to her constant illness, and that we need to try and find some way to help her. While this was good to hear, in that she is seeing what I am, we still don't know what it is we need to do yet, but all seem to be getting on the same page now at least. In the end, she was glad we were seeing immunology today and is hoping we'll get some answers there.
I love our immunologist, Dr. P....she is a hoot and so very good with the kids. Madison had been dragging all morning...good in that the doctors needed to see her so puny....but by this appointment I was starting to get worried about her. She perked up a little, just because Dr. P was loving on her. I knew going in we wouldn't get any answers today, although I'll admit I still wanted some. Dr. P did find that Madison's spleen is still enlarged, something that happens when you have mono, but something that usually goes down within a month or so. We are almost 2 months out from the mono diagnosis, so we don't like seeing that. She also noted how swollen Madison is right now.....she has gained 10 pounds in less than 2 weeks and just looks so puffy. While neither of these things tells us much, we do have a plan for now, and I need to find some peace in that. Tomorrow or Thursday we will get a whole slew of labs done on Madison. Finding a vein may be a challenge, and my heart hurts having to stick her yet again so soon, but we know our favorite phlebotomist, Monica will make it happen, and love on our girl all the way through. Then we wait. It will take about 2 weeks to get the results back, and either it will clearly show us whats going on, or we will be back at square one and I am not sure where we go from there. While we wait, we are to continue treating the g-tube infection as we have been, and pray it starts to get better. Between you and I, I suspect we will need to find a way to get into our GI next week and see if he has any other ideas to throw at it.
Madi did perk up a little this afternoon, and spent it low key hanging with her friend. Abby and Harley hung out and had a ball together, and Chance was creating something out of bamboo he found. All three had a nice afternoon and evening and are exhausted, snug in their beds this evening, sleeping hard. I was able to meet up with a new possible mito mom I have been talking with for the last couple of months this afternoon, and we were so priveleged to get to meet her daughter too!! This child is just too adorable, and her mom is pretty awesome. I wish we would have had more time to visit, but was so glad we were able to meet face to face and have even a little bit of time. Loved meeting you and K, Kyla!!!
Tomorrow we see cardiology with Madison, then pulmonology/sleep doctor with all three in the afternoon. I am SURE the cardiology appointment will be uneventful, but they do make me so very nervous, and with this swelling she is doing, I'll admit I am even a little more than usual. I hope to get cardiology on board with the need to figure out the infections also....just cannot have too many of her specialists pushing for some answers.
Thanks for the thoughts and prayers!!!!