Tuesday, July 21, 2009

Confused But Positive

I'd love to give you all an update on Gaines but I'm so confused at this point that I don't really know where to start. We got another new doctor this week and he is great but I think I would really like for a doctor to stick with Gaines for a while. They change every week here and its getting a little frustrating to me. I feel like once a doctor gets to know Gaines and starts forming a good plan for him...they are gone. This doctor is on for two weeks so I hope we can get a good plan mapped out and stick to it. He's also new and seems to subscribe to the breathing philosophy that we are used to from GW...not exactly but he's a good middle ground between these and the DC doctors.

So, scratch the old plan that we were on. Now, Gaines is on 4 liters (more pressure), a new type of cannula that provides more humidity (don't ask me why) and less oxygen. I'm not exactly sure where we go from here. The nurses tell me that right now we are trying several different things and seeing how Gaines reacts to each of them. I think then we'll figure out what works best for Gaines...more oxygen, more pressure, etc...a baseline...and then wean from there. They are supposed to be finding out what exactly the home health companies around here will support. Once we get that info, we'll know what Gaines has to be at before he can go home...once he stabilizes and starts taking bottles. I'm not exactly sure when we'll get to the bottles again. I think once we find a good baseline for Gaines. I really like the approach that this doctor is taking of not doing too much at once.

I got a little discouraged this afternoon. Beau met with the doctor and mentioned his personal goal of getting Gaines home before Reed's birthday in October. He feels like the doctor thought that was more of a reasonable goal than my Labor Day. I think we could look at Labor Day as best case scenario. Anyway, I just got kind of down about it...I mean, mid-October means we are only halfway there. I didn't let myself stay down long. I've gotten a new perspective on things again (I've gotten pretty good at giving myself little pep talks).

In the great scheme of things, that would not be that much longer and I'd rather not take him home before he's ready. Also, I'm trying really hard to think about how lucky I am to have these circumstances. I got a little irritated with someone the other day complaining about their baby being so fussy...I wanted to say, just be thankful that you have a baby at home to be fussing. Obviously, I didn't say it but thinking back about it now, what if someone with no baby, or a baby worse off than Gaines hears me complaining about a lung problem that he will get over in time. I guess you just have to keep in mind that someone always has it worse than you.

In other news, Reed slept in his big boy bed last night...all night. He's off to a good start on it tonight as well. He was so proud of himself this morning and kept saying, "My bed, my bed" this morning. Beau and I were really proud of him too. He's getting so big these days. School seems to be going a smidge better. They say he's starting to enjoy himself more but the drop-off portion of the day is still pretty rough.

I love my two little boys and can't wait to get them under one roof. Please keep praying for healthy lungs.

Love to all,



Carrie said...

We're still praying for you all. I'm sure the constant change of doctors is frustrating- I've seen a small glimpse of that myself (a very tiny glimpse compared to yours) and it always drove me nuts.

(Just my two cents worth) As for you being grateful- we all know you are. And it's okay to be upset and vent here about your struggles- even though you might have more than someone else, and they might view your problems as minor, they're still your problems and they're very real for you. And this is your blog, so you're entitled to write whatever you need to! :)

Tiffany said...

Hi I have been following this family in my coummunity for a while now and they have some similatrities with you I think. Any way I just thought it might be another way to see hope. http://www.nateandtami.com/

Anonymous said...

Praying for you and hoping that Gaines gets to come home to his big brother soon! And my husband and I have to remind each other every now and then when we get down about circumstances that "Life could suck so much worse"...so I know what you're feeling!

Ruthie said...

Have the doctor's always switching does sound very frustrating! I'll be praying about that situation and that Gaines' lungs will continue to improve!

And good job to Reed for sleeping in his big boy bed!


Jen said...

I remember hating when the doctors switched. They do it every 2 weeks here in Seattle.
I wanted to give you a heads up as someone did for us and saved us about $900 dollars a month (with twins of course).
When Gaines comes home, or is about to, check into your insurance company getting the formula to you, through the home health agency (where the oxygen and pulse oximeter come from).
The girls were on a special preemie formula (once my milk supply stopped) called Enfamil EnfaCare. We were able to get it all through Childrens Home Health Care, which our insurace picked up. And now that they are off formula, they are on Pediasure to extra calories/trouble gaining weight. And CHHH delivers all to us as well.
I know insurance companies are all different, but just something to look into for the future.
I just LOVE seeing him in pictures. He is so precious.

Kristy ~ said...

I have been following your blog since the start of your journey |(to be honest I can't even remember how I found your blog). I am so happy to read that Gaines is doing well, and making improvements. He is a tough and strong little guy. The road is a long one, but when you have your precious baby boy home this journey will have all been worth it. Everyone will always have it harder then you, I am one of them. I have never read one of your posts and thought you were complaining over something small (because its not) and that you should realize how lucky you are (you KNOW you are lucky and blessed to have such a sweet little guy in your life). You and your husband are amazing, and have it together SO well after everything you have been through. You are both graceful and are allowed to vent about your struggles and your feelings. Don't ever think you can't. I lost a son back in September 2008 after my water broke prematurely at 20w5d. I went in to labour 3 days later at 21w1d and my son grew his wings 2 hours and 14 minutes after birth. I just lost another son 6 weeks ago, after my water broke prematurely at 23w4d. My body was very infected and I went in to labour imediately. My son was born at 23w5d. He was a little fighter, but sadly we lost him 2.5 days later. Your blog is a source of support to so many people - especially those who have walked your journey in the past, or who are even on the same journey as you. I followed your blog while I was in the hospital on bedrest (I was there for almost 2 weeks before my water broke for complications) and your words meant a lot. Though I am grieving and wishing I was in your shoes, I still read your blog to even gain some of your insight and strength. You are blessed to have 2 beautiful little boys. Just like I am blessed 2 have my 2 miracles who walk with me and 2 miracles who fly over me. I wish my story had the happy ending like you do, but never feel guilty for having the thoughts/feelings that you do have. I can't wait for the day you post about Gaines coming home.

*hugs* to you and your family.