Well this week has been challenging, to say the least. We did get a good report from the cardiologist appointment today - it went very well and Liam's conduit looks great on the echo. His gradient pressure is now 20, which is a "very normal" range for Liam's heart right now. We go back in a month to be closely monitored for any issues that may come up, given that the last go around was not successful. I found this a HUGE relief that we don't have to wait months to see if this conduit is holding up!
Now for the not-so-great news. Liam failed his swallow study on every consistency of liquids...even honey and a half (which I thought would be Stage 2 consistency). He did pass well on the solids, Stage 2 and up and also the meltable crunchies that he loves so much...so basically we are back to where we were at before his surgery. We got cleared from cardiology to start the Vital Stim, which has been on my "Liam to-do list" for quite some time if yall remember =) I'm calling our ST next week and to have her start coming back out ASAP to start on feeding therapy again.
The other not good news is that Liam had another choking episode today. I am 99% sure it is due to reflux, we just don't know what is causing it. Clearly something has changed with him (either airway wise or allergies, something) from prior to his surgery. He has never had choking or intermittent rough coughing spells before. I have POURED over research on the Internet and am getting very mixed thoughts and too many things "it could be" (and on top of that, I am a hypochondriac myself, so that doesn't make my self-diagnosing him any better!). Our cardiologist didn't really have an answer for us on the issue, other than it's only been a couple weeks since his surgery and his body may not be back up to par yet. I have a call into our pulmonologist to find out what more we can do to help him when he is having an episode and what the next step is to figure out what is going on, given the swallow study results. I'm thinking a trip to the ENT will be next on the list...I am anxious to get this figured out to say the least.
Not much planned for the weekend. Given we still have a few months before the RSV/flu/cold season is over, I'm guessing our weekends will be pretty boring =) But I don't mind one bit. One of my good friends was asking me when we could get together with the kids and my reply was...May?? We both just laughed.
I agree that you should seek out a consult with ENT. Logan had an airway injury that none of us were aware of until after they extubated him following his second surgery. He had stridorous breathing, etc. They did an upper airway scope and couldn't see anything. However they took him into the OR and did a lower airway scope and found a cyst hiding behind his vocal chords. I'm not saying that's what Liam has however he could have some sort of airway issue that may be to blame and an ENT can rule that out. Saying lots of prayers for all of you!!
ReplyDeleteThat is wonderful you got good news at Liam's cardiologist appointment! But am sorry about the not so good swallow study. I remember how bad I wanted Alexa to pass hers after a month on thickener ~ thankfully she did, but I realize the stress involved, especially with the worrisome choking episodes. I agree you should seek out ENT for some further answers. I hope things get better soon.
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