Tuesday, April 29, 2008

Low Sats, High O2, and Chest Therapy, Oh My!!

DISCLAIMER: I cannot be held responsible for any rambling that I may do in this post. After 5 days of little to no sleep, and stress coming from every direction, I think I have a right to ramble. :) Besides, it's 11 pm, I should be in bed.

First of all, thank you again Rebecca for helping with my blog. You are amazing!!

Sorry for not updating earlier today. It was a rough night and day. Rhett spiked a fever last night, and his oxygen levels went south. He was on 4 1/2 liters and we could barley get him above 90.

We went down to get a chest xray, and that showed everything still looked okay, but he had alot of congestion and gunk in the upper lobes and bronchial tubes. So they decided to try Chest Therapy, with the thought that it probably wouldn't work. They came in and gave him a "back massage", and beat him up with one of those little mask things that they use when they breathe for people, (you know the ones with the little cushions on them?)

Anyways, they did that and then we sat him up for a while and tried to get him to blow bubbles and a pinwheel. About 4 hours later he was getting sleepy and was all gunked up again, so I had them suction him. Now since the therapy and the suctioning he is sating at 95% on 1 liter of O2.......and this is while he is sleeping!!!!!!

That is BETTER than what he has been on at home!! Since his airway surgery he has been on 1 1/2 liters.

So we found the combination that works for him. Back massages, gettin beat up with a mask, and getting all of his boogers and other gunk sucked out by a super dooper snot sucker.

Who knew life could be so exciting?!?!?

He got some Sesame Street Loons (balloons) today, and he couldn't be more thrilled. His fever is down, and we are just hanging out.

I was so frustrated for so long because of everything just seeming to get worse, and not seeing any improvements. Maybe just maybe we can get out of here by the weekend!!

I told them no sending us home until they are dang sure that we won't be back up here again in a couple of weeks. I don't know about you, but this being in the hospital 3 different times in 5 weeks is really wiping me out.

General Surgery came in and talked with us today. It was one of the nurse practitioners. They set his date for his Nissen and G-tube. And the magic number is

Ya-da-da-da!!! (Woah, too much Elmo going through my head)

June 16th. That is IF we stay healthy.

The plan is to go in and do it open, and put in a regular G-tube. Then after 6 weeks they will change it to a Mic-key button.

I know there are alot of things that can go wrong with the Nissen, but at this point, Rhett's reflux is so bad, and he is aspirating his stomach acid, that we need to do this.

One of the main reasons we haven't been doing so well with our saturation's is because he is constantly aspirating, and it is making his lungs sicker than they already are.

Oh, and speaking of sick lungs and Pulmonary Hypertension, remember way back when, when we were told that Rhett was permanently visually impaired? And remember how the opthamologist told us to get a big screen TV so that Rhett could actually see more than just fuzzy objects when he watches a TV?

Well last time we were in the hospital I was having a conversation with Rhett's AMAZING cardiologist, and he was watching Rhett try to see the itty bitty TV in our room. He suggested we try Make a Wish to get him a TV that he could see, epically where we are pretty much home bound, and Rhett is stuck in our living room all day long.

It was kind of a hard thing to hear. Here was my dr, who is always very cautiously optimistic that one of these days Rhett will be able to be a normal little boy, with no major pulmonary and cardiac problems, telling me that he would fill out the forms for us stating that his condition is life threatening.

As much as I love the Make a Wish Foundation, I don't think I ever really wanted to have a child that qualified for it. In fact,I know I didn't. What a huge reality check for me, who never looks more than a day in advance.

So, I just pushed it in the back of my head, and never really thought about it again, until he asked me if we had contacted Make a Wish yet.

I told him not yet, but we would. I discussed it with Andy, and we decided to contact them. Rhett barley meets the age limit, but we found out yesterday that Rhett's wish will be granted. We will have someone contact us and come out to talk with us in the next 30 days.

You have no idea how grateful we are for this. It seems like we always seem to get the low end of the deal. Even with our taxes. We were all set and e-filed them only to find out that someone has already claimed Dakota on their taxes. So now it's going to take forever to get out refund because we had to do it on paper, and now we will be audited. We also didn't get our stimulus deposited into our account today because of it. I don't even need to say how bad we need this money right now.

I have been almost spitting at the TV every time someone on the news talks about it. "How are you going to spend your money?" they say. Then someone says oh I am going to get a laptop, blah blah blah, and here we are, people who REALLY could use this money since we only have 40.00 to our name after writing our utility bills out on our overdraft protection, and paying the bank fees.

Yet we don't get our money. Ugh. It will probably come well after Andy gets his first paycheck, and we are back on our feet.

Anyways, sorry to get sidetracked......I have been cooped up for sooooo long. Have I ever told you how bad isolation sucks when you are in the hospital?

So FINALLY we get the best news EVER. We were accepted yesterday as a Make a Wish Family. We are so excited. Rhett is going to LOVE this, and his vision therapist will be excited for him too!! We also wished for the entire Signing Time collection to go along with it, but I don't know if we will get that or not. How cool would that be though. If Rhett can sign the way he can with the 4 DVD's that we do have, imagine what he would be like with the whole collection!!!!! Our lives would be complete!

I am so tired of fighting for every little thing, I am so tired of not knowing what day is what. I am sad that Rhett and I are going to be spending the majority of the summer in the hospital and indoors recovering from surgeries. I am sad for my other kids that their lives have been totally disrupted, and they have had me literally taken away from them.

But I am happy that I have amazing kids who understand, and would do anything the can for their little brother. I am happy that I have my little boy to love on and nurse through his illnesses. Being up here is always such a reality check. I know that there are many parents who don't get to take their little ones home. We are so blessed that we still have our kids. I don't know how I could go on without them. I will take the trials any day as long as I still have my little ones to hug each night.

I am happy that we have such wonderful friends who pray for us, support us, and give us words of encouragement. Life is so much better when you have friends helping you along the way.

I am off to go cuddle up in my bed with my littlest guy for the night. Thank you for the prayers. They work. They really do.


Bobbi said...

I'm so sorry for all you, your little guy and your family are going through. It sounds like so much. I pray that God's peace will be with you. You are a very deserving family and I hope he gets his t.v. and movies. Best wishes. Bobbi

Michelle said...

Karly's getting a Make A Wish wish, too. And while I'm happy she's getting to make a wish, it's still hard to realize that my child is getting a wish?! It's weird.

I'm so glad Rhett will be getting a new TV! BUT - I'm even happier that he's doing so well!!!!! I hope you get to bring him home soon and keep him home!

kristi said...

I am glad you found something that works, I understand. After no sleep for almost 7 years, I have finally found something that helps my son sleep all night. It is a Godsend!

Lily said...

I want to come up but have a runny nose and sore throat. I don't think that is a good combo at a hospital!
Lily has a nissen because she was born without her esophagus. The drs didn't want the stomach acid backing up into her man-made one (they took 4 1/2" of her colon and moved it up)anyway she has never had a problem. The hardest part is when her body wants to throw up and it can't. That is hard to watch your child go through! Usually comes out the other end. Hopefully having this done will make a big improvement in his life. He deserves that!!!!

mom2noah said...

Pam, my heart breaks for Rhett and your family. I admire your strength to find answers and make sure Rhett is getting the appropiate medical help. Hugs & Kisses - Terry & Noah

Anonymous said...

hey, here is the site i was talking about where i made the extra cash, I was making about $900 extra a month...
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Tommy's mommy said...

I have been praying for Rhett's health and for your family to have your needs met. I was SO HAPPY to read your post today about Rhett's overnight sats and your Make A wish acceptance. Truely, your family is so deserving. Still getting a box of goodies together for Rhett and will be sending those your way soon. -Sandi

Travis said...

it's angie and mariah just wanted you to know that I think of you and your family often. you are a great example to me. you have amazing strength and you are a wonderful mother.
love angie

Anonymous said...

you're welcome Pam. :)

Imsavimsa said...


I have a 1 year old son with Noonans syndrome. He was oxygen dependant before his Nissen fundoplication and being examined for an eventual cystic fibrosis diagnosis.

The Nissen really turned our lives to the brighter side, because our sons condition improved dramatically with the Nissen. No more oxygen, no more thick phlegm to cough up or suction. Turned out he had been aspirating the whole time.

Now when he gets nauseaus (sp?) we open the g-tube and stomach content comes out, instead of him trying to vomit.

Kind regards
from Finland