Saturday, May 16, 2009

More Of The Same

We've just gotten back and settled from visiting Gaines tonight. All of his stats are about the same. Carbon dioxide is still in the 60s (but his ph is still compensating for it), oxygen is still around 32% (that might be a smidge higher) and he seems to be doing well with his temperature. I believe that he is up to 32 ccs (just over one ounce) of food every three hours but at his last few feedings he's had about 5-6 ccs of residual (undigested food). The doctors don't seem concerned about it so I'm not going to be either.

Tonight they plan to remove his PIC line. This is the line that he has been fed his TPN (nutrients in addition to food) through. They no longer feel that he needs the TPN since he's tolerating his feedings so well. This is exciting because it is just one less thing for him to be hooked up to. He'll be given a round of antibiotics before they remove they remove the line. I believe its to avoid any possible infection.

Gaines had his eyes open more tonight than I've ever seen. It was so nice to see him looking around. He seemed pretty alert. I know that he can't really see me but I felt like he was looking right at me and thinking, what is going on mom?...get me out of here. I want to so badly.

I've really been having a hard time with this oxygen business. Not a hard time like I had the first week or two of this (side note...I think having Reed here has REALLY helped my spirits), but I just ache for him to need less oxygen. I want him to get off the oxygen and CPAP more than I can say. I try and just be thankful for the progress thus far but it's hard not to want to take the next step towards going home.

Even though Reed is here now, I still cannot wait to go home. There are so many things about home that I miss. According to my count, today is day 60 for me. I left home 60 days ago thinking I was going on a 3 night work trip. Funny how plans change. Actually its not funny...maybe it's interesting or something but its definitely not funny.

On a lighter note, my friend has been here today and I've so enjoyed her visit. We walked around Georgetown and I got to pretend like life was normal for a while. I finally let myself buy a couple of little things for Gaines. Just some footed sleepers that he'll need...nothing major but it was fun to look at tiny baby clothes.

Reed is still doing great. He has mastered telling us when he wants more of something. Someone has obviously taught him sign language for more. We have no idea where it came from but if he asks for "mo" and we don't accommodate him fast enough, he bangs his fists together at us, like maybe you'll understand this. The things he does these days are just amazing.

I'll go for now. Please continue to keep Gaines in your prayers. He is such a precious child and a huge blessing to us. I can't even begin to tell you how much we already love him.

Love to all,

Brittany

7 comments:

Stephanie said...

I can't imagine how hard it must be to see Gaines and not be able to just pick him up anytime you want. Praying for you and Gaines and his strength! It will come in time....I pray that you will feel peace in the days to come and that he'll progress each and everyday! I'm glad that Reed is with you and able to lift your spitits a bit....sounds like it was just what you needed right now...other than Gaines oxygen going down too of course :)

the rye family said...

brittany, i check in on your blog at least once a day and pray for your family regularly. it is amazing how quickly life can change "in the blink of an eye". you are enduring this challenge in your life with grace, and it is a joy to follow your journey via the "blog-world" though it is unlikely that we will ever meet in person this side of heaven! you are being prayed for from michigan! ♥♥

Sarah said...

Getting the PICC out is HUGE!!! That's great that he'll be getting full feeds now.

I have to work overnight today so will try to stop by to visit him when you guys are around. :)

Thomas and Jamie said...

Brittany,

I will continue to pray that Gaines is able to get off of that nasty oxygen (oxymoron?) REALLY soon and that in the meantime, God will give you peace about the situation!

Praying hard!
Jamie Allen

Michelle said...

Praying for the little steps that will eventually lead to that BIG step!! I know God will get "all of us" there as we continue to pray. I am thinking you should write a book. So glad the PICC line is coming out..another little step. YEA!!

Hugs from Prattville,

Michelle Gregory

P.S.(Guess you know by now Lulu had her baby boys. Red Heads!! So glad they are here and she is doing well.)

The Ellis Family said...

We can totally understand your desire for the oxygen to decrease and go away! After having O2 at home for 15 months, we were so glad to send it packing. Just know that he will certainly let you know when his lungs are strong enough to give it a go by themselves! And when that day comes, it will be a joyous celebration. We pray that it will be sooner than later.

In the meantime, enjoy Reed and enjoy getting to know every detail of Gaines. Even though it may seem like slow progress, in three weeks, Gaines has accomplished some miraculous feats!! We are so proud of him! (And we are very proud of you for your incredibly long bedrest that allowed him to grow a little longer!)

Love you all,

Kelly, Greg, and the girls

oleyfriends said...

Hello!

I found your blog and wanted to let you know about the Oley Foundation -- in case Gaines ends up going home on tube feeding.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY