So Liam ended up having 4 appointments this week. Yesterday was his 15 month well check and he did great. His weight is up to 21.9 lbs and he is 30 3/4 inches tall. The appointment was a little disappointing for me though. I (as any mom does) was expecting to have all the developmental questions, and being the proud mother I am was fully prepared for them "How many words does he have now" "Is he walking, cruising, etc"...But our pedi didn't really ask too much about it...Hmm. We spent a LOT (too much in my opinion) discussing what had transpired regarding his heart surgery/issues over the past 3 months...which is fine, but I just felt like his developmental status got pushed to the back burner and still remains in question...and that's basically what I need the pedi for...to keep us on track. And yes, I probably should have spoken up, but we still had 2 shots coming, and Liam's attention span was beginning to waver...Does anyone else experience this with their pedi? I guess it bothers me because I feel like all I do when I go is re-hash his heart history for the past few months and that's about as far as we get. Maybe time to find another practice...Ok, sorry about the vent there!
On a good note, Liam was so happy and chatty at his appointment...I was so hoping and very thankful he remains calm and happy during doctors appointments! I have frequently read that heart kids (toddlers especially) can develop quite an anxiety and get very scared during visits after so many hospital visits...which is clearly understandable. I was waiting for that day to come for us, but so far we are blessed that we have not had this experience yet with Liam (but we'll see how the echo goes on Friday!). Maybe because this is the only exposure he gets to the outside world...at least during the winter months!
He had his helmet adjustment appointment today which was a quick 15 minutes in and out. They expect him to have to wear it another 2 months or so. Since growth usually slows down about this age, it may take a little longer to see the results they are looking for. His hair is growing in more, so that helps his head look MUCH better!
The long awaited swallow study is scheduled for tomorrow morning. Liam has had another couple of choking spells...one which almost had me dialing 911 because it was so scary. I was so afraid he wasn't going to be able to cough and clear whatever was going on in his lungs, that I had phone in hand (and actually dialed 911, but my phone was on another screen, so it didn't connect...) but he FINALLY calmed down enough to take a breath or two and cough a few times hard enough to get it out. I am glad we still have the pulse oximeter handy...the numbers were not great (mid 80's) but not as scary as what I thought he looked like, and eventually came back up to 95. I am afraid it is reflux...it's really all it can be. I have fed him a few bites of stage 2 applesauce and pears (per direction of our ST), but the episodes are not occurring around this at all (like we thought it was when it initially started happening). Usually he will be playing on the floor (about 30 min to an hour after a tube feeding) and then he will start sounding congested all of a sudden. Congestion, coughing gets worse and eventually leads to the choking episodes. So strange and SO scary. We upped his Prevacid today (per pedi instructions) to 3 times a day to see if it will help, but one of his spells happened this afternoon so we shall see....UGH! Hopefully tomorrow will reveal some much needed answers!
And of course, Friday is our follow-up with the cardiologist. I am a little apprehensive, to say the least. But am glad we are going so I can voice our concerns about his airway/swallowing issues and see what his thoughts are. As far as the outside goes, Liam's scars are healing wonderfully. Just want to be sure everything is A-OK on the inside =) Please pray for a good follow-up!
OH how scary for mommy! :( We will be praying for a successful swallow study and cardio check up!
ReplyDeleteI completely agree with you with the pedi. I don't know if it is that they are "scared" of them with their hearts and unsure of how to care for them or if it is just such an interesting thing for them that they get a little sidetracked? It's frustrating.
I'm the same way with the Pedi! I feel like the kid on the Christmas story who finally gets to talk to santa and then clams up and can't think of what to say! We also double up our appointments (Mason and his 23mo old brother have them together). Masons' heart always seems to be the brunt of the appointment and nothing else is discussed.
ReplyDeleteI'm praying for the swallow study! I think we're on a similar path with Mason. I'm actually taking him to the Pedi today about all the gagging. I spend 75% of the day holding him upright asking if he's okay. It's getting so hard.
Praying for Liam!!!
You just have to voice your concerns with your ped and not be afraid to ask. Ours was always mostly concerned with Logan's heart in the beginning and not so much with the development. However Logan had back to back procedures/surgeries for a long time so that was the main concern. Do you have Liam's cardiologist send your pediatrician copies of notes from his cardio checks? That will greatly help to keep you from having to have long discussions with your ped all the time. We are fortunate to have an amazing relationship with Logan's ped. I have his cell phone, home phone and office numbers. I can call him anytime day/night no matter what the problem is. I wish everyone had that too.
ReplyDeletePraying for you guys!!