Friday, June 19, 2009


So far things are going well today. Gaines was at 35% oxygen this morning which I'm fine with for now. After talking to the doctor yesterday I came to realize that his decrease in oxygen was only due to the diuretics and that the slight increase is because they reduced them because of his electrolyte issues. I didn't see the big deal with the electrolytes. I knew they were messed up but I felt like since they were giving him back the things he was losing, it was ok. Apparently the Lasix can be bad for your kidneys, bones etc. if you can't maintain your electrolytes.

Gaines got a blood transfusion early this morning and they aren't really pushing him on his oxygen right now. They are kind of giving him a rest at 35%. He's had a stressful last couple of days. They had a hard time getting his IV in for the blood, an eye test (more on that later), and they've tried twice now to take blood from him for his genetic test and can't get it. They need 4 ccs of blood for that (which is a lot for him) and his little veins aren't cooperating.

He had a great eye test Wednesday. No signs of retinopathy...basically his eyes are formed correctly. So that's one less thing to worry about.

Gaines' doctors yesterday were very positive about his future. Provided he doesn't have that genetic disorder, he should grow up to be a happy and healthy little boy. They are confident that he doesn't have any major developmental problems (other than the lungs that should heal). The doctors explained again that while he's got hurdles to overcome now with his lungs, we should be thankful that once those are cleared, he'll be healthy. I'm so thankful for that.

I've kind of resigned myself to the fact that Reed and I will be going home without Beau in three weeks. I'm hoping that by then Gaines will be ready to transfer to an Alabama hospital on nasal cannula or will be finishing up his stay at GWUH...hopefully just working on his feedings. If not, then Reed and I will just become weekend jet-setters flying between Montgomery and DC. The good news is that I should have plenty to do at home to keep us busy. I know that while it will be very hard, its the responsible thing to do.

In other news, we are packing today. Not to go home but to move into the home of a family that we've gotten to know here in DC. We have been very blessed to stay near the hospital for the 8 weeks that Gaines has been here but we feel that it's time for us to move on. This living arrangement has been wonderful but is very expensive. We just think we should save the money we would be spending on this apartment/hotel for the extra expenses we'll incur once we get a nanny. That wasn't exactly in the budget I had worked out when we planned on Gaines. Beau and I feel like God has provided these people to us and I'm not going to be the one to tell God thanks, but no thanks. :)

Oh, last night I got to have dinner with some Andalusia folks. A few couples from my home town were up here for an event and invited me to dinner. I love seeing familiar/friendly faces and it was nice to eat a good dinner out. I can't tell you how much we appreciate people that are visiting the area looking us up. Also, we have really good friends coming to visit tomorrow so it should be a fun day.

I need to to get back to the packing. Thank you all for keeping up with us and please continue to keep Gaines in your prayers...especially that he doesn't have the genetic disorder.

Love to all,



Tiffany Lockette said...

Montgomery is home huh? I am from Auburn Alabama but I have lived in Atlanta Georgia for 8 years now. I am trying to move my family back to Auburn one of these days. I have been following your story diligently and want you to know if there is anything I can do please let me know. For now though I will just continue to pray for little Gaines and your family. I hope in 3 weeks Mr. Gaines will surprise everyone and be ready to transfer back home, at least I pray for you that is the situation. Keep your spirits up, Gaines is in good hands.

Ruthie said...

I've been praying that Gaines does not have that genetic disorder! I will now add to that prayer that they can get the blood they need to do the test. What a neat blessing to be able to be hosted with a family. Praying the Gaines makes a lot of improvement before you and Reed have to head home. God is able!!!


Jennifer said...

I am sure you may already be aware, but have you looked into Angel Flights or Mercy Flights. They transport families and sick kiddos for free using volunteer pilots, etc. This may be an option for you if Gaines is able to be transferred.

Here is a link:

I will continue to keep you all in my thoughts and prayers.


Kelly said...

Still praying for y'all! God is so good to have brought Gaines this far. We trust Him to do much more!

Kelli said...

Your entire body, including the heart, relies on a perfect balance of electrolytes. I am disabled and in chronic pain due to a serious electrolyte-related disorder (Periodic Paralysis). Thank God they caught the issue with Gaines and are correcting it. That really hits home with me so I couldn't help but comment about it.

Love hearing that Gaines is doing well, considering his circumstances. He's a strong little guy and I can't wait to read that he's well and on his way home to Alabama. :)