So sorry for not updating about yesterday's appointment but it was a looong day. Gaines' appointment was at 11:45 and we didn't leave Children's Hospital until after 4...just in time for 5:00 traffic. By the time we got to Montgomery, picked Reed up (he went home with a friend from school yesterday), bathed Reed and put him in bed we were both exhausted .
So, let's see what I can remember. When we first arrived and got Gaines' name situation worked out (he was listed as Gaines but really his first name is Thomas). I know, we ruined his life. Ruined Reed's too (John Reed) but he doesn't have as many appointments as Gaines so its not a huge issue for him. Anyway, when we first arrived we went for an x-ray and had some lab work done. We then met with a nurse, a nutritionist, a social worker and finally the doctor. We both really liked the doctor and since he's the doctor our niece sees, we knew a little bit about him...and him us.
Really he only made some minor changes to Gaines' medicines. We've switched from Pulmicort to Flovent which is much less expensive (hallelujah, Pulmicort is definitely not cheap) and takes less time to give/take the breathing treatment. He increased his Lasix and Zantac just a hair and the plan is to let him outgrow his other diuretics. Basically as he gets bigger, the dose gets relatively smaller. We were instructed not to mess with his oxygen right now. The doctor will give us direction on this at our next appointment in two months. Not exactly what I wanted to hear but I'll take it. Of course I asked how much longer the doctor thinks Gaines will be on oxygen. He thinks at least until his birthday. Again, not exactly what I wanted to hear but at least we know that its something he will grow out of.
The only other little change is that we are adding rice cereal to Gaines' formula now in hopes of helping with the spit ups. I think that its helping some. The doctor did want Gaines to come back for a swallowing study in a few weeks. Basically he will drink things with different consistencies that has barium in it and will show up on an x-ray type thing. Hopefully that will rule out any problems with his upper digestive tract. I really don't think that's the problem because he never spit up before he switched to formula a few weeks ago. I'm hoping the rice cereal will help but he has spit up twice today...both times after his larger feedings. Who knows. Just pray that his weight gain keeps up. He's actually dropped a couple of ounces since last week (today he weighed 10 pounds 8 ounces). Not too much...he's still in a good range, we just want to keep moving forward. The doctor really impressed on us how important Gaines' nutrition is. His lungs need to keep growing to get better.
That's really about it for the appointment but I did want to touch on something that Beau and I realized yesterday. As we walked around Children's hospital we saw lots of kids and their families coming and going...its a huge hospital and it was full of sick kids. Some worse than Gaines, some better than Gaines. It reminded me that I'm not the only mother in the world dealing with a sick baby. Their are lots of families out there struggling with the heartache that comes with a sick child. I just hope that they have the same support system that we do.
Gaines has a physical therapy appointment on Thursday. Please pray that this goes well and that Gaines is making progress on catching up. I'm particularly nervous about this appointment because of the possible CP talk we got a few weeks ago. I'm really hoping that we have more marks in the probably not category. We know that eventually Gaines will get over his lung issues but I'm nervous about this because its something he'll always have. I KNOW that in the great scheme of things that it is silly to worry about but a mother can't help wanting "normalcy" for her child.
Please keep us in your prayers. Particularly good growth, lung health, and for Gaines to overcome any physical setbacks he may have.
Love to all,
Brittany
4 comments:
Please know that I continue to pray for the four of you every night. Hang in there!
Yeah for the good pulminologist appointment. A good support network is key when you have a sick child. We have two daughters who are struggling with health issues right now and our support network has kept us strong. Right now we are facing the same major surgery for both of our girls. Praying that Gaines continues to make improvements everyday and that CP doesn't become an issue.
I am the mother of a child who was born with a rare genetic disorder. I've been following your story since the beginning. I'm so grateful your son is home and doing well.
I understand the situation that you are facing and wanted to share a bit of advice. I believe that because Gaines was born very early and small that you are able to qualify for social security disability for him. There are certain ailments that automatically qualify.
I'm sharing this information with you because I know that the road you are on is long and expensive and if there is help available then you should try for it. If you don't succeed the first time, then try again because they turn down many of the cases the first time but because of his being born early as well as his weight at birth he may qualify which would give you access to other programs that may benefit him in the future.
Praising God for your little one's milestones and standing with you for his complete healing.
If you need more information, please feel free to email me at amykgreenwood@gmail.com. I have tons of information that I can share.
Amy
Praying for Gaines steady progress and recovery.
Just curious, why you chose to call your sons by their second names instead of their first names? Or why not just put the name you preferred first instead of second? It's just that I never heard of that before. Maybe it's a southern thing?
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