Thursday, February 21, 2008

Home Again.....For a day Anyways......

Well we made it through that test. It wasn't fun. It was worse than a sleep study! They had to come in every 1/2 hour and get a reading off of the machine. I got a total of maybe 2 1/2 hours of sleep.

As I said in my previous post, once the probe was in, Rhett refused to swallow, let alone eat or drink anything, so they ended up putting a NG tube, (feeding tube) in. He was less than thrilled with that, it just made things worse, and he didn't swallow for at least 6 hours. He ended up totally drenched with drool.

After a while, aside from a bit of gagging here and there, he sucked on his binky most of the time and was happy.....as long as they didn't take his blood pressure.

Anyways, I am beat, and didn't sleep much last night.....really worrying about this whole UPPP surgery VS a trache. I don't like that they can't tell me anything about whether or not it will be successful, as well as how he is not going to choke to death without the uvula back there. Rhett puts everything in his mouth.

On the bright side, have I ever mentioned how super fantastic Rhett's cardiologist is? He called me last night around 6 pm. He had just been going through some things and had seen that Rhett had been in the hospital having the Probe done, and wanted to make sure things went okay. I discussed the trache idea with him, and he seemed to think that it was possibly a better option than doing the UPPP.

This is just such a huge decision to make. It is life altering, and I need to know that I am doing the right thing. It's not one of those split second decisions where you are in the ICU or something and they say, "Listen, if we don't do this right now your son will die."

It's more like, "Well, if we don't do one of these two things, your son will eventually go downhill as time goes on, and his heart will continue to enlarge and thicken, his pressures will continue to rise in his lungs, and you will loose him." How do I make this decision?

I know right now we need to focus on getting through all of these tests, but this is a very real decision that we have to make, and we need to make it in less than a month.

Anyways, here are some pictures of our latest adventure......

Hey, baby wanna talk? (Before feeding tube)

Signing Cheese.....(Before feeding tube)


Can you BELIEVE what they did to me? Look at this!!!


This sucks!!!


Have I mentioned that I don't like this?


Check out the back of his scrubs....Doctor in Training!! Too cute....


The next day after he had drowned both of us in drool, he decided that things weren't so bad, especially when the Child life Specialist brought in BUBBLES!!


Yay this is so fun!!


Hooray for bubbles!


Makin some tunes on the piano...


Now we prepare for tomorrow's MRI. Oh how I would love for a boring moment in our lives right now.

12 comments:

Lily said...

Rhett is such a sweetheart. I just want to give him a big hug! Hugs and kisses to you all!

Michelle said...

What sweet pictures! Isn't it amazing how fun bubbles are - so simple, yet so fun!

I hope all goes well & you're able to make the decision with a clear, peaceful mind. I feel for you, that's for sure.

Give Rhett a big hug from us!

RK said...

One day between...wow. He looks awfully good in these pics, even with that darn NG. And what a GREAT cardiologist to check on you like that!!

~Melissa~ said...

What a trooper dear Rhett is! I can't imagine having to make a decision like you do - I hope you can make one and are at peace with it. You all are in my thoughts.

BiLlY, sAm, AnD bOyS!!! said...

i know it's for different reasons but I was SO against Tayte getting a trach but when it came down to it his doctor really thought it was the best thing for him. We talked about it, cried about it, got mad about it, fought about it...all of that for what? Tayte having his trach has been hard, frustrating, awful at times- but it has also been fun, exciting, and brought our family closer and taught us so much. Please call me if you ever need to talk. I know it's different circumstances but I could maybe help with questions concerning the trach surgery and stuff. I'm no pro but I could tell you from a mom's perspective! Just call me!!!! Please!

Niksmom said...

Wish I had some wisdon for you but I don't. Except to ask -- can the trach be reversed later? If so, I'd personally opt for that, I think.

Rhett is such a trooper and so dang cute in those scrubs! I want a pair for Nik! LOL

Sending you love, hugs, and prayers for restful sleep!

Damama T said...

For an unhappy little guy, he sure looks happy. How can anybody not want to just smooch him all over?? Hope all goes will with the MRI. Thanks for keeping us posted.

PUSHING for you all! xoxoxo

Marla said...

I wish I could tell you an answer! What a tough position to be in...so difficult. I will pray that you are lead in the right direction with making this decision.

He looks so adorable in those pictures. Bubbles is a fantastic idea. I will have to remember that for the next time we are in the hospital.

I hope that you are able to sleep soon. Try and take care of yourself. I know it is hard when you have the amount of stress you have. Hugs.

Michelle said...

Oh Pam - GOD, I love that boy of yours. And you. I will call you tomorrow.

Little Miss E said...

Not a fun situation, but adorable pictures!!

Megan said...

Rhett is so CUTE!! I think he has the most amazing smile ever!! What a little trooper he is through all this!!

Dream Believer said...

Hey there Rhett, we LOVE your little scrubs and P.J's. Your mama always finds the cutest little outfits for you. Johnny says you are so well behaved in that big bed....Pam did he sleep in that too? Johnny's too big for the crib style, slamming his poor head against the metal sides, but he's out of these big ones as fast as he can still! (but is in a twin with rails at home just fine)

Praying for answers and peace in your decision for your sweetie pie. I honestly would be like you and not know. What a hard choice. But I know you will put Rhett's best interest and future first and decide from there. ((hugs))