Tuesday, October 21, 2008

Medical Update October - cardio complications

Today, Jason and Kristina left early for Reuben's Growth Hormone Stim Test. I've been having many regular contractions and periods of desperate tiredness so am resting at home today (BTW Friday's appointment with the perinatologist showed the cyst hasn't grown and Buttercup is unlikely to need immediate surgery or special care after birth. Great news after we feared a tumour! Baby is a whopping 7.5lbs at 35wks. No wonder I feel ready to burst).

The stim test measures the level of growth hormone and whether Reuben has a deficiency in the hormone. We know from his growth chart that his weight gain is good (10.6k/23lbs), but he's a little on the short side which is to be expected with CHARGE. K's just texted me a photo of my little man, laughing and signing away (I did a bit of sign review on the phone having missed it this morning) and despite the 3 painful attempts at putting in an IV line, he looks great. Also despite his first toddler accident yesterday whereupon he dropped a (rather nice but very heavy) Tasmanian wooden bowl on his toe and cried like never before, the great angry blackness exploding on his big toe. More childproofing required.

Following that, Reuben will see the opthalmologist. Let's hope his eye test comes out "fantastic" as in April.

Then, to see Jiffy the trach nurse. Following the advice of other mum's (Amy R and Candi), we're going to see if Reuben can better tolerate his speaking valve (PMV) if they drill a 1/16" hole in the side, thus allowing some air to escape through the valve as well as past his vocal chords and through his mouth to allow him to vocalise.

Thursday, Reu's going into the cardiac wing at Children's. We've been seeing bradycardias (low heart rate in 60s) at night which I think we all probably have and are unaware of weren't it not for the pulsox monitor. So that was my concern when I took him in for his 6 month cardio check with Dr De Oliveira last week. After a heart bypass, the inevitable repurcussion is that the electrical nodes will either be blocked or become junctional. Complete blockage results in a pacemaker. Also, when his VSD (big hole) was patched up, the scar tissue itself can create some turbulence, the mixing of the oxygenated and unoxgenated blood, again offsetting the fluidity of the signal exchange. The heart is just an amazing machine of chambers powered by electrics.

Reu was then given a cardio Holter to wear for 24hrs, a mass of wires and receptors over his chest and this showed tachycardias (high heart rate). I can't help but think the fact the electrotrodes kept coming off during those 24hrs and we had to work out where to put them back on, didn't help and I don't feel that tachys are a problem for Reu, but the electrophsiologist who specialises in the electrical activities of the heart wants to see him back in the Cardio Intensive Care Unit on Thursday where he's been analysing the Holter data. My fear is that if they use beta blockers like Propananol to slow his heart rate, his bradys will plummet. We had that fear 12m ago just before Reu was discharged from his 3m ICU stay and in the end, we weened him off the beta blockers ourselves. The lows were just too scary.


Kristi said...

Oh my goodness... so much to catch up on.
First... the photos of Jason and Reu playing are FABULOUS! What fun!? I can't wait to get our boys together! :-)
Also, love all the other photos I've missed while househunting and lack of laptop... Vegas, the garden, your blossomed belly! I LOVE the one of Reuben stooped over the steps with the curtains framing him in the background. You are an artist!
Now... on the medical stuff... so much going on...
Heart... I will keep my fingers crossed. He LOOKS fabulous... so my thinking is that he is doing well and that as you texted, perhaps it's a "blip." Question... with the throw-ups he's having, have you ever been monitoring his heart before, during and after...? Just curious - I don't even know if it's reasonable to think there could be a correlation of some sort?
Regarding the PMV and drilling a hole... TONS of kiddos have had success with that. I hope it works for Reuben! :)
Growth and weight - personally, I am glad he has a little extra meat on his bones. I always feel like it's better to be a little meatier in case of an illness - then he has a little bit of reserves to fall back on. Take Gracie, for instance... no reserves... too thin... very scary.
Hoping that appointments this week are helpful and bring good news.
With love,

Catherine said...

Jennifer G. Fortaleza has sent you a link to a blog:
From Jennifer:
Lord have mercy...! With warm wishes and prayers to all of you, especially with "Reu"'s close monitoring and your surprise baby coming soon... Supportively saying, With God's help anything is possible for you both Cathy & Jason...Take Care & God Bless.. Lovingly, Jenn G.F.

ellen charge said...

wow is all i can say i hope hes nto in to long altho an idea jstu occured to me if hes in when buttercups born trhat could spare you the problems of the night nrusing or you could jsut ask kristina to stay over hmmm love u

ypersico said...

I am so very sorry for your horrendous experiences with the night nursing. However, please bless me to your forgiveness and indulgence - when I read "For anyone who lives in the land of responsibility" I broke out into laughter, and have yet to recover. Your acceptance of the circumstances in your life is I believe the magic that allows you to move onward and forward. May blessings, pleace, joy and ease find their way into every space of your lives - with much love, ~y