I've needed a couple of days to process last week's appointment (one with Pulmonary) before writing. The appointment was supposed to be a follow up for both of the boys from the NICU and from Alex's recent hospitalization and his need for oxygen. I can start by honestly saying I'm really starting to hate these "routine" follow up appointments because lately they seem anything but routine.
From a pulmonary standpoint, Nicholas is doing very well. This is pleasantly surprising to say the least because he was the one who struggled the most in the NICU coming off of oxygen. They want to just check some blood work even to see if he might be able to come off of one of his medicines so thats fabulous. That was the first five minutes. The remainder of the next two hours was to discuss Alex.
They are concerned that he is still requiring oxygen, not eating as vigourously (will not wake to eat unless we wake him and still not eating as much as he was a few weeks ago although over the weekend this is slowly starting to improve.) Then we reviewed his recent Echo cardiogram results. Apparently it shows "right ventricular pulmonary hypertension and hypertrophy". DO NOT GOOGLE because ofcourse I did when I got home and it freaked me right out, which I know is what any medical google search will do. In short the way the doctor explained it was the right side of his heart which is responsible for pumping blood to the lungs is enlarged and "stiff". Basically its working harder than it should be and is likely the reason he is needing extra oxygen. Thats pretty much where the answers stop and all the questions begin.
We don't know why this has happened or when it began. Is this why they are still concerned with the weight gain, even though he HAS been gaining. Because of his decreased intake, do they think its really not "good" weight but perhaps fluid build up instead?? Ofcourse as I have sat here all weekend I wonder how long he's been fighting and having to work harder at basic things. Is this why we've known him to be so quiet, mellow mannered? Has he not had the energy to really cry before now? (Yes because maybe not so coincidentally he's finding his voice much more now that he's been on oxygen and slowly it does seem that his appetite is increasing as well.) We are not sure which is sadder; His sweet, sad cry or the fact that maybe he hasn't had the energy to do so before now. It sounds very different than his brothers cry but then again its also very new to us. Ofcourse you can make yourself sick with the "what ifs" and did we miss something and then the scarier question, for how long and could this have been prevented if we had figured it out sooner?
We have a million questions ofcourse and some include, what does this mean for him, what is the cause? is this correctable? something he'll outgrow as he gets bigger? How is this related to his lung disease? What is the prognosis? the treatments?How long will he need oxygen? The list goes on and on. Pulmonary spent the a good part of the appointment speaking to cardiology on the phone to discuss a plan. For now he is being put on two different diurectics, will have blood work, continue oxygen, and even his reflux medications were increased. We were given an appointment to see Cardiology next week for a more thorough work up and consultation. Part of me relaxed a little bit when they didn't want to see him before then, that must be that they are not that concerned, right? But ofcourse when you hear that your baby's heart is not working quite as it should be, talking to someone yesterday would not be soon enough for us.
Next week will be a big week because we will see Cardiology and also neurosurgery. But I think the challenge will be getting through this week to get to next. I don't know what this new diagnosis will mean for Alex, where this road will take us. Obviously like any parents would be, we are saddened and worried to have another health issue befall our son but we are strengthened to know what a fighter Alex is. He has amazed all the "experts" his whole beautiful life so far, and I have every confidence that he will continue to do so!!!
We are so grateful for all of those who continue to keep both of our boys in your prayers!!!!
Can't leave the post like this so here are a couple new pics of our sweet boys!!!!
Nana doesn't like to be in front of the camera but this one of her and Nicholas is priceless and too sweet not to share!!!!
and who can resist cute baby feet???
3 comments:
You guys are doing an amazing job - you're an inspiration to other parents. Hang in there!
("Anything but routine" routine visits - so true! I can really identify with that one!).
Abbysdad & Abbysmum
Oh my goodness...baby feet! I'd challenge anyone to find something more fun to nibble on than baby feet. :)
Just remember what we talked about when our group met. Doctors are only doctors because they went to school longer. And while they may have great insight, they are no match for the spirit that is in your son (both of them!). Alex is obviously a fighter, and there's no reason to stop believing in him now. Just look at how far he's come! This is just another bump in his little road and someday, you'll look back and wonder why you were so worried about him. :) Ben, Josh and I will be praying for you as you wait out the week.
Through all their tiny baby steps and those large ones you're making alongside, I'm with you as well.
Love always,
Aunt Sue
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