Tuesday, April 8, 2008

Rhett is not doing well.....

This is Rhett the day he came home from surgery.....


This was taken Sunday.....


See the difference?

The worst part is I don't know what's going on. What I do know is this. He is sleeping between 13 to 15 hours a night. As well as a 1 to 2 hour nap during the day. His oxygen saturation's are ever so slowly going down. When we were released from the hospital they were at 98% on room air. Now they are in the lower to mid 80's on room air. On one liter of oxygen he saturates at 99% which is good. I love those numbers. He is supposed to be above 95% to relax his heart and the blood vessels in his lungs. He's gone from 32 lbs down to 26 lbs.

Oh, and his heart rate? It's hovering at this number.....


That 68? That's what his heart rate is at, while he is awake. MY heart rate is higher than that.

He is also having blue spells where his hands, feet, and mouth turn blue.

I am freaking out here. We have a Dr's appointment this afternoon. We have got to figure out what is going on.

He is only interested in watching Elmo and Signing Time. I am so sick of Elmo I could puke, and when I go to sleep at night all I can hear is the Colors of the Rainbow, and the Silly Pizza songs in my head. If he isn't watching one of these movies he is so agitated. He just lays on the floor and cries.

When I am sick of the movies we sit on the floor and read books. He is really into those touch and feel books. We only have two of them, and that's all we do is feel the fuzzy and smooth and rough animals. Our days are getting very boring. I have tried to pull out different things, but there is just no interest in them.

He won't even play with his cars. It takes too much energy. I know people have asked me if he could be dehydrated, or in pain with constipation, but his stools are all fine, and he is getting his feeds through his feeding tube. He is off of his Lortab, and only on Tylenol every once and a while.

He is still drooling like crazy, thick sticky drool. He is hardly chattering at all, and dang it, I just want my baby back!!

I just don't know which Dr to begin with, and if it's the surgery that has made his health decline, I don't know how I am going to live with myself. I had hoped that we were doing the right thing.

This just sucks.

28 comments:

RK said...

Oh my. I'm so sorry. I hope you found out something helpful at the dr office. I'd be pushing til someone told me what was going on and could fix it. I hope there's a dietician or someone who is verifying that he's getting enough calories or whatever. Tube feeding should always help, not hurt or decrease a weight. Poor little guy. We're praying, Pam!

Damama T said...

Pam, honey, don't beat yourself up. You are doing everything you can and there is no way you would agree to allow any procedure that might be harmful. We are all praying for his swift recovery.

Heather said...

I can practically feel your pain through your post. I have so been there but please, please take a deep breathe, get to the doctors and don't leave till you feel comfortable. As always, we are these kids only voice and YOU always know him best. Pam , we live with so much guilt over these children and what we can and can not do for them, please let that go for now, forever if you can, for your sake as well as Rhetts. We are saying lots of prayer here in California. Lots.
Love from Zoey and her family

Anonymous said...

((hugs)) You, your family and Rhett are in my thoughts and prayers.

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

maybe you could have the doc's check his carbon dioxide level. I know that when tayte's gets high his coloring is grayish/blue and he sleeps constantly- and No energy! I hope the little bugger gets feelin better! We think of you every day!!!!

Gabi's Mommy said...

Pam, do not regret the decisions that had to be made. You and Andy chose what you felt was best, with the guidance of your doctors. Unfortunately our kiddo's like to test our limits before shining through. I am sad to hear he is under the weather, but Rhett has so much strength, he will pull through just fine! I am going to send Gabi your way tonight and talk to him, maybe he just needs a little pep talk from our special angel:)

We are keeping your entire family in our prayers, but we will say a few extras for Rhett's recovery!

I wish I could give you a huge hug...{{{{{{{{HUGS}}}}}}}}

Gabi's Mommy said...
This comment has been removed by the author.
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Melanie said...

My heart is aching for you. We are praying that you get some answers SOON!

Kari said...

Pam your in my thoughts I sure hope Rhett gets feeling better. That photo broke my heart. I have no advice except ride them Dr's for some answers which I just know you already are!!!! Is it possible the feed tube is the problem? Has he ever had one before? Maybe it doesn't agree with him. What is he taking by mouth? If still nothing I'd ask the Dr' about the possibility the feed tube being the problem. I am no pro we never had a tube but I bet if T had one he prolly wouldn't want to eat or drink because of his severe sensory issues. Just an idea. I'm feeling desperate and wanting to help but can't :( ((HUGS)))
I am having troubles posting hope this one works!!

Marla said...

Prayers and hugs. Please let us know as soon as you find out anything. I am so sorry.

Niksmom said...

I am saying a special prayer for Rhett tonight and I will ask all my readers and other people I know to continue to pray for him and for all of your family.

I am sure you have already done this (and you didn't say which doctor you were seeing today) but...if you don't get satisfactory answers from the appointment today, consider going to the ER. Rhett's health is simply too fragile to allow anyone to make you guys wait to get him the medical supports he may need right now.

He is a super strong little guy and I will be praying for him to rebound quickly! Sending you love and thoughts for good health. xo

Chris said...

Oh, that photo of him breaks my heart. I hope that doctor gives you the answers you need. Could he be anemic?

Don't second guess the decisions you have made. When love guides you, you know that you are doing the right thing. I'm praying that you get your cheery, chattering boy back. Remember, Rhett is a fighter; he'll get through this.

Maren said...

I hope that you can find out some answers today at the doctor. I think about you and Rhett often and I hope that he starts feeling better soon.

Jenn said...

I agree with Niksmom. A trip to the ER may be in order if the doctor isn't able to see you or give you any answers quickly.

I will say an extra prayer for Rhett tonight. Please update us when you can.

Megan said...

How scary and frustrating! We are praying for you. We hope you get your little Rhett back soon!

Mommy to those Special Ks said...

We're praying VERY hard for Rhett!! PLEASE keep us posted on him and what the doctors say!

Angie said...

You don't know me, and I kind of feel like a ding dong posting on your blog. I have been following your story for a while, I am friends with Alex Homer's mommy. Little Rhett tugs at the heart strings of complete strangers. He is so adorable. I will pray for your little guy! He has been a tough little kid, I pray he will gain his strength back!

Isabella said...

We are praying for Rhett. Don't get down on yourself about surgery. You do what you have to do.
Megan

Seth, Caralee and Sydney Jo said...

NO!! I was hoping and praying that this surgery would be the last of your struggles, I am so so sorry that this is happening to you and your family and poor Rhett! You are still in my prayers and I truly hope that the doctors can find what is causing all of this for your poor sweet Rhett! Good luck and stay strong!!
Caralee Baker

Mrs Wibbs said...

Oh Pam...
I am feeling so much pain for you!
I am praying for Rhett as we speak. All my love, and loads of hugs
Rachel xxx

The Bryant Family said...

You had to do the surgery but something is wrong. The pictures of the after surgery and now definately show something is WRONG. I am in tears. Take that little boy to ER and make them run every test they can. Could it be a heart issue? No energy, low sats, could he be in pain and just not want to do anything. Tucker just shut down after his diaphram surgery because they pushed him too hard to come off everything. He ended right back on vent until he could recover. I am so very sad....I wish I could hug you through this blog. Take him, take him take him......demand they run everything. There has to be something else. YOU know best for your child. YOU YOU YOU.....you feel something is wrong....you can see something is wrong. TAKE HIM!!! Pam, you are a strong women, I can tell. You are his advocate you are his voice. HUGS to you . kisses to Rhett.

Childlife said...

Oh, Pam! I'm praying - hang on!

Delilah said...

I will be praying for your beautiful little boy and for your family.

Michelle said...

I can't stand the thought of little Rhett not doing well! I hope things are going better for him. You're all in our thoughts.

Angela said...

I will say a prayer for you guys.
Hope things start lookng up soon