Nothing crazy happening today....
Although, it is only 6:00pm...I could be a little premature in saying that. But, for now...it's been a really good day. We met with the genetics doc this morning. He didn't really tell us anything about DiGeorge that we didn't already know...but, he did give us lab slips to get our blood checked out. We'll see if we're carriers for this mutation or if it was just a fluke. If by chance one or both of us are carriers...he said that we may want to get the other boys tested. Because, if they don't have it...they, like us, could be carriers and may want to know they before they have kids of their own (in 50 years!)
Then, we go see Dr. Mayman (card). The heart looks the same...no increased swelling...it's still about the same size. But, they can't be certain about the pressures in the heart without doing a cath...and they just want to wait a while and let him heal and rest. His sats in the office were 92. He had no explanation for that. (maybe he's getting a cold...maybe it's just pulmonary). SO, he told me that when he gets 90 or below to plug him up to the O2. WHOO HOO! Maybe he'll hold off for a little while.
I am STARVING...so, I'm off to eat left overs...but, all in all....no new problems and that's great!
Tomorrow, we see the pedatric surgeon that did the g-tube surgery. (and we owe her 17k because she wasn't an approved provider working in the approved hospital! Just had to throw that in because I just got another bill...and it's just funny. I'll tell them that I've already planted their money tree and I'm just waiting for it to blossom. Maybe sometime in early spring!) Then, Mark (speech) and Nicole (dev. spec) come over in the afternoon. I hope my man will eat for them!
Will update tomorrow! Thanks for checking in on us!
***What did I say....It's 7:00 and Dr. Mayman just called. He's reviewing the echo that he did today on Isaac and it looks like his RV (right ventricle) is enlarged...this is something else enlarged (the other is the confluence). So, what this means is that the valve is leaking more and causing the RV to be larger. Hmmmm...so, he said we'll still keep our next appointment in one month...but, if it continues to enlarge...we WILL need to schedule a cath. YUCK! I was hoping for the year of 2008 to be surgery free (ok..heart surgery free)...we still have the eyes and mouth to work on.
OK...now I'm going to eat my leftovers.
16 comments:
Hey Kat, if the test come back that you are a carrier, just see if that doc will give me a test slip also. The docs in AZ thought I was crazy when I asked for one.
Glad to see things are boring today. Enjoy it while it last. When Meghan and Seth arrive, things will be going crazy.
Come on Isaac, do something to freak mom out tonight!!
oh...I want a money tree too! I need one!
I am glad for the all around good reports today. Glad you have the o2 if needed...but tell that gorgeous boy to behave!
I will write more later...Micah is screaming!
Love,
Samantha
P.S. I didn't forget to write my note this time :)
Hello honey bunches,
Sounds like a pretty tame day. Thank goodness for those. I love the "non-approved doctor in the approved hospital" comment, isn't that just funny. One additional way they try to take advantage of us. But I better not get started.
Maybe after those leftovers you guys are in the mood for some brownies & pumpkin bread?? Let me know and pop by your dish.
Sweet hugs & kisses my littest pumpkin pie. And a high five to the older 3 :-)
YOU POP BY ANYTIME WITH PUMPKIN BREAD....ARE YOU KIDDING ME!!!
I'll even clean the house for you!!!
And brownies...I have ice cream...I'll share with you!
You know what I found amazing...you start your post with "nothing crazy today"...but then go on to talk about a trip to the geneticist and blood tests and then to a pediatric cardioglogist! For most of the world that would be overload...but you just take in all in stride and consider it normal! I hate that this is your "normal"
I'll be sending up tons of prayers for his heart issues to subside...and give you a heart-worry-free year! You are so deserving!
I am continuously encouraged by your amazing, wonderful, positive attitude!
PS...Was Isaac into his idol tonight?
Where can I get a money tree?? Sign me up!! We owe the PICU doctor $7K for that same reason. Yeah - "the check is in the mail!"
Sorry to hear about the RV. I will put Isaac high on the prayer list. We don't want any surgery this year for him!!
I hope that you have a great evening! Thanks for the email today. Sorry that I revealed myself as the dork that I am!
Jennifer
I am w/ Krista...
like I always tell you...
whenever I start to remotely feel sorry for myself...
I THINK OF YOU!!!!!!
God, I feel for you so much for all you are having to go thru...
God bless you and your family....
I pray for you all the time...
God sure has a lot of faith in you for all He's putting on your shoulders...
Love you.
PS - Thanks for adding Grace's link to your page. I added Isaac on my blogspot. I am feeling special!!
Jen
Kathy, Isn't there any way that you can get Isaac on Medicaid/Katie Beckett/SSI? I just shudder at the thought of 17k when he IS eligible for coverage.
*sigh*
I'm so sorry to hear that 2008 might not be free of surgeries. You've done great so far with coping, so if it does come up, I know you can do it again...
Testing. Good luck.. I'm sure everything will be fine and anticlimactic. ((hugs)) Kamaile
Our Katie Beckett home visit is next week...so, HOPEFULLY...it will be retroactive back to the date where the 17k is due. The hospital's neonatologists in the NICU were non-approved docs at this APPROVED hospital..and their bill is 22k. It's just ridiculous!
Hang in there Isaac. We love every bit of you and ALL your little problems.
How were the leftovers? Did Isaac watch American Idol?
I just hate having to worry about $$ when it comes to medical bills. Every time we get a stupid bill in the mail (got a big one yesterday), I feel like I'm going to freak out and punch whoever is in charge of insurance. I'm so sorry you guys have to deal with these things as well. I guess it comes with the territory, huh?
We will send up lots of prayers for this heart issue to resolve for the little Isaac man. It would be great if 2008 could be a year you don't have to worry about his heart.
Always thinking about you guys!! xoxoxox
Just read the update...I am praying for no heart surgeries this year. Micah and Isaac are having RV issues...with that darn valve...well, Micah does not have a valve at all...so it is equal blood out and blood back in...it use to be too thick, and now it is getting too big...can't they just give us a break?
Anyway, I hope that when you and Joe get your bloodwork done you find that the DiGeorge was just a fluke of nature causing you to have an adorable boy with precious ears.
Hope you enjoyed your leftovers...I am about to go dig around and try to find something to eat for lunch...that typically never happens and I just end up at Starbucks with another latte for the day.
Lots of love,
Samantha
May God Bless YOU & YOURS fOR IT SEEMS LIKE YOU NEED SOME RELIEF.
Hey Kathy,
WHEN IT RAINS, IT POURS! But just keep looking for the RAINBOW! God promised there would be one :)
I know that I couldn't be any more anxious than you, to find out the results from the blood panel. How long will it be? Kiss baby Isaac for me; and tell the other boys I said hey. Sorry Eli, tell your mom to fly you out here and you can go to Disney with us. You would be alot of help!!! Love, Abby
Man! What a busy day for you guys. That would be great if 2008 required NO more procedures! I'll keep my fingers crossed for that little man!
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