I should not have waited this long to blog. Or at least this long TONITE to start THIS blog post.
We had a regularly scheduled pulmo visit today with the famed Dr. A. I seriously seriously could not love that man more. With one half hour visit, he set so many things right in my questioning heart and mind from our hospital stay last week and all the craziness that went on there. (which i do’nt think I even blogged about all of that! ugh. not sure i want to rehash it…let’s just say that there is a certain GI doc there who WILL NEVER set foot in a room where Kendall is ever again. While i am sure his egotistical power plays work on some moms, I am not one of them. Just because I probably DO know more about the GI system of a baby with a GJ tube than he does, doesn’t mean we can’t all play nice. The end.)
anyways – what came out of today’s appointment….well, let me break it down for you exactly how Dr. A broke it down for us:
- RIGHT NOW, her respiratory status is good. Possibly great, except for the O2 she is hooked up to almost 24/7. But she does not appear to be fighting an infection of any kind – YAY HOO!!!! My super vigilant hyper-attention to her coughing last week seems to have paid off!
- The hypoxia we are noticing (desatting on her pulse ox monitor, requiring us to hook her up to the oxygen at a low flow not only all nite like normal, but a lot throughout the day as well, just because it so vastly improves her overall functioning and energy levels) MAY be related to a condition known as “pulmonary hypertension”. I haven’t googled the heck out of this yet to know exactly how it may or may not fit with Kendall’s current issues, but I know enough to know that if Dr. A brings it up, he has a pretty good hunch. So – we have to bump our regularly scheduled cardio followup appt up – hopefully to some time in the next 8 weeks before we go back to see Dr. A. And i am sure this will be easy because, you know, pediatric cardiologists are usually just sitting around waiting for things to do, people to see… (insert heavy eyeroll here). Anyways – i had to start making jokes when Dr A is bringing this up today because i just emotionally could not handle one more crazy diagnosis added to the ever-growing list of diagnoses that still mean nothing. I know right now its all conjecture, but it still doesn’t make it any easier to say those words. Or to think that we may be lugging around the O2 tanks for a while longer than just a few days after illnesses.
- there was a lot more to this part of the conversation, but most of it involved some not so nice words about the doctors we saw/dealt with last week. Basically, from here on out, we WILL NOT be admitted to LGH until or unless Dr. A has been paged, made aware of the situation, and decides to admit her under his service and with his express orders as the only ones that will be followed (residents like to play doctor a lot, and make up orders that they get THEIR attendings to approve, which is typically NOT what we need to have happen for kendall.) Anyways – it went a LONG way towards easing my mind about going back up to LGH in the future. He is ready, willing, and prepared to do whatever it takes to hopefully help us come up with a better plan for treating her random infections or other crazy issues she likes to pull.
So – a great appointment overall – with just some random hard news to digest and the impossible task of trying to get a peds cardio appt very quickly so we can get some peace of mind about THAT part of her issues again. It was a long day, but it absolutely could not have happened without some GREAT friends who were able to take the other girls for me so that we could go up there mostly stress free!
Get home to take the girls to dance and realize that now, not only has Karissa lost one of her black jazz shoes (part of her competition costume I might add and NOT CHEAP!), but has ALSO lost one of her ballet slippers that she just got a few weeks ago (ALSO NOT CHEAP!) I was so upset at her lack of ability to keep two pairs of shoes in the bag they belong in – I know, it wasn’t a pretty parenting moment. Almost as bad as last Saturday AT THE COMPETITION when I realized both black shoes were not in the bag and that she would have to miss her first dance because she didn’t have the right shoes. I was beyond livid. That may have been due to the fact that I had been home from the hospital for a grand total of about 8 hours at that point….But the bottom line is – I am so frustrated at her for losing these dumb shoes and I know I need to get my priorities in line and get over it. But every time I trip over yet ANOTHER pair of her shoes scattered in the kitchen or living room or laundry room…I am frustrated all over again. i know there is a lesson here I am supposed to be learning, but right now it is just all one big exercise in frustration at a five year old. Lord help me!
Anyways – so now I am worn out. I know there’s four hundred thousand more things I need to blog/update about. But that’s all I have the oomph for tonite.
Thank you for reading and praying and asking questions and just making me stop, be hugged, and soak up the love so many of you have for us. Just – thank you.
Hopefully tomorrow – we do’nt have any appointments, only one therapy late in the afternoon, and nowhere else to go – so hopefully I will get a few major projects underway (aka, closets cleaned out and medical supplies organized!), some work caught up on, and maybe even a few more blogs done to update about the last couple weeks. I think I’m going to need a LOOOOOTTTTTT of coffee though.
See you all on the flipside.