Monday, April 28, 2008

Not Doing So Well.....

Last night he slept with 4 liters of O2 and would still dip to the 80's. They started albuterol because he is wheezing so bad. He has had that every 4 hours. He is needing Tylenol every 4 hours too.

The Albuterol made him wacko, so he tossed and turned all night and flapped his arms and legs.
I don't think either one of us slept. When he is awake he needs 3 liters of 02 and sats around 96%.

Normal for him is 99% on a half a liter.

None of the Dr's are listening to me, and today when I went to ask for meal vouchers, the social worker wasn't very nice. Long story short I got some, but was told to use them sparingly.

Cause you know, God forbid I need to eat or something.

The only other time we have used meal vouchers was when he was overdosed, and boy were they happy to give them to us then. They were handing them out hand over foot to us.

It's not like I chose to be up here, it's not like I wanted to spend the last 6 weeks in and out of the hospital. I really do have better things to do. Besides who wants to eat the grody hospital food anyways? I would much rather be home fixing my own meals eating with my own family.

I am so glad Andy is working again. I hate digging through the couch cushions for gas money, and laundry soap. Eh, I guess eating is over rated these days anyways.

We have to wait 6 weeks to have the Nissen and G-tube done, then that will be 7 - 10 days in the hospital, which he has to recover from that before he can have his spinal surgery. So we are looking at the whole summer in and out of the hospital.

We have no idea when we will get out of here now. We don't know how long he has had the RSV, so we don't know when it is going to peak. All I know is he is alot worse today than he was all weekend. Sigh.......

Sorry to be so down. I just have those hospital blues I guess.

12 comments:

Niksmom said...

Oh, Sweetie, I'm sorry Rhett's having such a tough go of things right now. I remember how much Nik's struggles intensified my own anxiety levels and everything was just crummy.

I am sending you lots of cyber love and hugs and soothing thoughts. And prayers...that goes without saying! xoxo

The Wiley Family said...

Pam,
I'm so sorry for all that you and Rhett are going through. Please let me know if there is anything I can do for you. I will be up there for awhile starting Wednesday and I'd be happy to bring you anything. I live in Riverton so if someone can drop off some of your things I can bring them up.
Have they mentioned using Riboviren (spelling?) for the RSV? They gave it to Cohen when he had RSV last month. They said they don't give it to everyone but maybe they will with Rhett. Cohen's RSV was negative after a week.
You guys are in our prayers.
Love,
Ashley Wiley

Anonymous said...

I hope he is feeling better . And will not getting any worse. Hopefully you can get some more food vouchers. My 2 older kids love hospital food(my daughter also like gas sation hotdogs and mac &cheese from a box) Anyway I hope he gets better soon.Carol &Abigail

Anonymous said...

I hope he is feeling better . And will not getting any worse. Hopefully you can get some more food vouchers. My 2 older kids love hospital food(my daughter also like gas sation hotdogs and mac &cheese from a box) Anyway I hope he gets better soon.Carol &Abigail

Heather said...

Stop apologizing. You have every right to complain because at the end of the day none of this is fair and the pain of watching our little one endure yet another thing becomes too much after awhile. You remain in our prayers.Always

Little Miss E said...

I agree with Heather! You have every reason to complain! Hang in there, the going isn't easy, but you WILL get through this! You're in our thoughts!

Melanie said...

This RSV hospital stay sounds all too familiar. It's so hard to watch them suction your child and also not getting any sleep. I remember the O2 alarm going off constantly day and night! I hope you get out soon!! It is so hard to be away from home and the rest of your family.
We are praying for you both.

Melanie said...

This RSV hospital stay sounds all too familiar. It's so hard to watch them suction your child and also not getting any sleep. I remember the O2 alarm going off constantly day and night! I hope you get out soon!! It is so hard to be away from home and the rest of your family.
We are praying for you both.

Melanie said...

This RSV hospital stay sounds all too familiar. It's so hard to watch them suction your child and also not getting any sleep. I remember the O2 alarm going off constantly day and night! I hope you get out soon!! It is so hard to be away from home and the rest of your family.
We are praying for you both.

Marla said...

Oh no. Hugs and prayers. I am so sorry for everything you guys continue to go through. M could never used Albuterol either. She could not sleep or function on that stuff.

Mrs Wibbs said...

I am so sorry you're having to see your little guy going through yet more... It must be so painful! I am in pain for you. And am praying daily too. Big big hugs, stay strong and remember that God is stronger and bigger than all of this.
Much love to you, and give a big squeeze to Rhett too!

Kari said...

BIG QUOTE "Sorry to be so down" STOP being so hard on yourself!! You are going through more than any human should have too. Your a Super Human!!! Your always in my thoughts and prayers!!! (((HUGS)))