So far things still seem to be the same with Gaines. His blood gases are ok...still not great but ok and his oxygen is still around 40%. I think they plan to just try and maintain things the next few days while they try and close the PDA. I pray that is closes with the medication and that the holes (VSDs) don't present a problem. I'm pretty apprehensive about this step we are on now because it could open the door to new issues with his heart (the VSDs) but I'm trying to remember that it could also be just what he needs. It could be a big step for him.
I tell you, that was a hard conversation to have yesterday. There are just so many times you can hear the words heart failure in reference to your child. They kept mentioning problems that could lead to heart failure and I finally had to stop them and have them explain heart failure to us. To me, heart failure is the end of the road...your heart fails and stops. Thankfully, heart failure can include many things and is apparently treatable. Still not something I want to deal with but at least its something that could be dealt with should the need arise. I pray that it doesn't.
Today is better but last night was a little bit of a rough night for me. I'd been fighting back the tears all day but finally right before bed I couldn't hold them back anymore. In my head I just kept thinking, I can't go home without him. Thankfully, I have an awesome husband that assured me we weren't. We don't know how long our road will be but one day, we will take Gaines home with us to be a family. I have never wanted anything more in my life.
On a lighter note, we just ran some normal errands. We found a regular grocery store and picked up a few things. In the midst of this craziness, doing normal things helps us keep our sanity. Also, we got several cards and packages yesterday. We are so thankful for them as they are such a distraction from what our life has become. We got one package from a lady that we don't know in Texas. There were several cards that kids in her church made for us and I cannot tell you how great it was. Several drew little mazes for us to do in our spare time...I thought they were awesome. I was able to genuinely laugh and relax for a minute.
Please keep our family in your prayers. Please pray that Gaines' PDA closes with the medication and that the VSDs do not present a problem. Also, please pray that his lungs continue to get stronger.
Love to all,