Sunday, August 30, 2009

Roller Coaster

A lot has happened since our last post on Thursday night. Friday around lunch I got a call from Gaines' nurse letting me know that the doctor had her do a "work up" on Gaines because he was breathing pretty hard and his lungs sounded "wet". Basically a work up means blood work, xrays, etc. Whatever the doctor saw in these reports made him decide to up Gaines' flow to 4 liters and to stop bottle feeds until he wasn't breathing so hard. I was devastated. All I could think was, I knew it...I knew better than to get my hopes up.

After talking to the doctor on Friday evening I felt a little better about things. He felt like this was just a little blip and not the devastating setback that I did. He felt like the reason Gaines was having to work so much harder to breathe was because he was retaining a lot of fluid. Dr. Brittany feels like this is because they cut out his lasix so fast. The plan to correct this little "blip" was to give him more lasix and hopefully get the fluid off his lungs. The doctor told me that Gaines should hopefully be back at 2 liters by sunrise on Saturday.

Well, Saturday afternoon rolled around and he was only down to 3.5 liters. I was so discouraged. I felt like I'd been punched in the stomach. Saturday night before I went to bed he was taking all bottles again but still at 3.5 liters. I tried to stay positive but on the inside I was kicking myself for getting my hopes up...I knew better.

Thankfully, when I woke up this morning he was down to 3 liters and I felt a little better. At our visit after church he was down to 2.5 and that was even more of a relief. At the late afternoon/evening visit he was finally back to 2 liters and I was so excited. I am so thankful that he was able to get back down where he was.

He seemed to be breathing easier to me today than he was last Thursday so that made me feel good too. He is not currently getting regular doses of lasix like he was a few weeks ago. I believe he is still on an as needed basis but I'm going to talk to the new doctor tomorrow about giving him a daily dose for now. I know they are not good for him but I'm afraid that for now they are a necessary evil. This week's doctor has been very informative and I got an anatomy/phsyiology lesson on bone health, osteopenia and how the lasix play into that. I won't bore you with all the details but I do understand why they want him off of them. I just don't think he's ready.

Next week's doctor is the doctor that had Gaines for two whole weeks a while back. I'm anxious for him to see him tomorrow. I hope that he's as impressed with Gaines' progress as I am. I feel like he's pretty conservative so I think if he is pleased with everything it will be a good sign.

One interesting thing here (to me anyway) and then I'll run...Sunday night's are so busy. Friday afternoon as I was driving to the hospital I saw a giant rainbow ahead of me. I just thought it was so fitting that on a day that I was so down I'm given a huge reminder of God's promise. He doesn't promise to give us everything our heart desires and he doesn't promise that we will never have storms in our lives but he does promise that no matter what, He'll be with us and He'll give us the strength to get through it.

Have a good week.

Love to all,


PS - Reed attended another Birthday party this past Saturday. The party was at one of the shopping malls here in town. The party was held at a carousel inside the shopping mall. There was cake, food, other kids and carousel rides. With all of this available to him, watch what Reed decided to do instead.


the story of us said...

still praying for GAINS here in michigan! :) love the video of REED! :)

The Ellis Family said...

do we have a future soccer player like his daddy?? so glad to hear that gaines is back to his normal. i know that lasix aren't desirable, but we did them for a little over a year and there were no side effects. you are right - a lot of these things are necessary evils. praying that this journey is on the downhill slope!

Grammy Jane said...

Continuing to pray for the four of you here in College Station, Texas. You have two real cuties. Hope this is a good week for each of you.

Thomas and Jamie said...

It's completely understandable to hear the frustration and fear when talking about taking steps back! You guys have had SUCH a great faith through this trial and God WILL continue to reward you for that! Just know we're still praying, just like we were all those many months ago when your water first broke!