My little guy and and upcoming ECHO
We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart. I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.
Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. On December 1st, it was rated a 4.7.
It has been almost 5 months and I'm so afraid it'll be an 8 or 9. My heart hurts when I think of it. I am trying to prepare myself for a surgery this year...well, as much as you can prepare yourself for heart surgery on your child!
All at the same time, I'm trying to have faith! I struggle with that part.
The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify etc. It all depends on their little bodies. Each kid is different. To me... it doesn't seem to be a good sign that his leaked so soon. Well.. we'll find out soon enough ... With any luck, it'll only be a 5 or 6! I have posted a sketch of Matthew's heart right after this post.
I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...
he has written a sweet post about our other e~buddy Dan of 0ddness in England.
Dan has been MIA for a couple months now and we are trying to cheer him up.
I thank God for the support we get from other families of cardiac children.
And all of you, of course. Support is what helps get us thru it all.
29 comments:
Poor little man.
Poor mamma.
I don't know how you stay so strong...I send you my love.
What can I say? There's absolutely NOTHING I can say except God is with all of you.
Keep us posted.
Thoughts and prayers are with you for the echo. Some of the things Connor has pulled through has strenthened my faith, then at other times it is hard as you think "why can't this just be fixed once and for all"
All the best and I will be back soon to hear how it went.
In response to the question you left, the CT Scan can only provide information about what the heart is looking like but not the actual flow/pressure etc across the valve (as far as I am aware) ... hence the need for a catheter to get an accurate measurement at some stage due to the high cost of possible lung damage if the echo measurements provide misleading reassurance. (That's just my understanding which could well be wrong).
Hey Girlfriend! Don't forget that I'm always here for ya. I will be praying that the valve isn't leaking any more than it was in December.
Jessica doesn't have a pulmonary valve but her aortic valve (although it's not a cadaver valve) has been a 'moderate' leak and hasn't changed for many years now. I'm hoping that Matthew's pulmonary valve doesn't worsen for a long time to come. I know how scary it is to worry and wait. I'll be pacing in the cyber waiting room hoping and praying for the best.
(((hugs)))
Nancy
Terri-
I swear, I feel like I know you and Matthew so well! My thoughts and prayers are with you!
Let's hear it for GOOD NEWS!
Hang in there...girl, regardless...I KNOW you can handle it!
God has entrusted you with a lot because he knows how strong you are!
sending you love. I read and re-read this and am going to keep you in my prayers, as always.
sorry I didn't get an e mail/or possibly deleted it?
punkassgoodie at Yahoo dot com
My friend has a prayer group and I know of another one at a Marian shrine near my house, groups of people get together their and focus on one person at a time for their prayers. It is pretty amazing. they talk a little about what the person needs and sometimes it is a group of 50 people that live or work near the shrine and stop in to pray for people.
That drawing of Matthew's heart is pretty amazing... much better than the chicken scratch drawings I get from Jessica's doctors. lol
I know how you are feeling! Jon had a cardiology appointment on Tuesday and I was so worried about his echo. His cadaver pulmonary valve is stenosed and has been since about 6 months after it was placed about 3.5 years ago. I was sure this appointment would be "the one: that says its time for a change. Thankfully it hasn't gotten worse! I hope Matthew has the same "luck" as we had. I totally understand about the faith part. I guess we just have to prepare for the worst and hope for the best. I'll be thinking and praying for you.
Mary Fran...
it stenosed?? Yikes.. I haven't heard of that yet....
I know the only other thing they're keeping their eye on, are his pulmonary branches... they are small...
last March, they had to add cadaver tissue to his left pulmonay artery... along w/ a valve replacement...
I am a little concerned about his pulmonary branches narrowing ...
but, I was told that he would go in for a balloon dilation... or a shunt???
Hummmm..... maybe narrowing of the pulmonary artery was another "variable" the doc was talking about ...
who knows...
we can worry ourselves to death...
That is the hardest part (as you all know) of this whole ordeal...
the "not knowing"... everything is so unsure....
FAITH FAITH FAITH..
my husband is the best at having FAITH ...
he has faith.. and just "knows" that it's going to work out.
How about a stent? I've heard that they can put stents in the distal pulmonary artery branches now. There are so many opportunities now that weren't available when Miss Jess was Matthew's age and still growing.
You know what? Mike is right. It will all work out for the best... God always has a plan. Hopefully it won't be a hard road!
My thoughts will be with you on Monday! Good luck. You can do this.
Matthew looks so much like a little boy and not a baby anymore. I know that you are always on the edge of your seat. I have been following Matthew's blog since you first started it, and I think about your family a lot and I can only imagine how you feel. Once, when my son was 18 months old, he was hospitalized. I remember praying and trying to "bargin with God". You would do anything to make Matthew better and you are helpless to do anything but have faith in his talented doctors. Please take some comfort from the fact that you are always in my thoughts.
I'm praying for great results on Matthew's echo! Do they have to sedate him or does he cooperate?
Nancy.. funny you mention stent.. I had "stent" written..but then I got confused w/ stent & shunt...and took out stent...
so I was right ..
I just need to know what the difference is between the two!
Yes, we have been told by many healthcare workers that we are very lucky Matthew was born NOW and not 10 and 20 years ago..
Good luck! Hope all goes well. Echos feel odd >.o blech that stuff is goopy
you're in my thoughts.
hi.
Jenni,
they've never needed to sedate him for an ECHO...
so far, he's always been real good!
In fact, I've really never heard of anyone needing to be sedated for an ECHO ...
except just the other day on the CHD list and I was puzzled.
I'll be praying..
Stumbled on your blogsite tonight... I am praying for Matthew RIGHT NOW (2:32am here in TN) and for YOU. We are also going through alot with my wife, Kim's health, and I know the toll it can take on a family.
Looking forward to health and healing all around - for us, it's been very severe for over 4 years now.
Not blogging much at present, but I will try to drop back by when I can. God bless you and your family.
Jeff
Thinking of you, darlin.
xoxoxo.
You are all in my thoughts and prayers. xoxo
Man! I didn't know those details about the scale, etc.
And why did it take me off guard to hear you say you were nervous or scared about the next surgery. I guess I always picture you being so used to it that it doesn't still shake you. I'm so sorry for you guys! I'm praying for you all! You're such a good mommy!
And that sketch is incredible! Did I tell you I finally emailed a mom from CHIN? She had requested my email b/c her daughter has issues similar to Lin. I haven't heard back from her yet. Just trying to take my head out of the sand one centimeter at a time.
I hope all goes well on the echo!!! Hugs!
PS that sketch was incredible!
Hey sunshine, I'm saying big prayers for all of you today. xoxo BIG HUGS for you guys!
Very, very nice, Terri! thank you.
Have a good week
Be praying for Matthew.
D.WHITE
Sending hopes and prayers your way...
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