Saturday, August 16, 2008

How is Teagan?


Well I haven't updated on Teagan much lately because, not much has changed. We are still on the floor, still on antibiotics for his foot although we are not sure what is going on with his foot. His blood tests all come back normal, no signs of infection, but his foot is still red, tender, and swollen. ID thinks it might be a clot, but the ultrasound showed good blood flow and no clot. ID still thinks it is a surface clot, so I asked if it could travel to his heart or head and they said no it would be a different kind. They said they will just watch it and keep him on his antibiotics longer. The other reason we are still here is he did not pass his swallow study and we want to proceed with the Nissan and G-tube. He pukes a lot of thick mucus. Dr. Day explained to me most heart babies die from aspirating not heart failure after the Glenn and Fontan. That really hit me, I have to know we tried everything if Teagan's time does come. I will not leave until it is done, so here we are just waiting. Hopefully we can have it the beginning of next week. It will entail a night or so in the PICU and a few more days on the floor learning how to it works and to make sure he can eat. He will be able to have bottles and our biggest goal will be to stop an oral aversion by using his binky and trying bottles. Dr. Harris explained it well, " We eat from the top of our heads down: Our mind says I'm hungry, our eyes say that looks good, our nose says that smells good, we take it by mouth, down the throat, to the belly and out the bum." The G-tube will skip most of those steps and could cause some issues for the future. So we will try to avoid this, but we know after many prayers and consultations that it is best for Teagan, we have to know we did all we could do, and the rest in in Gods hands. We know he has a plan for Teagan and although we don't know what it is, we know that it is best. All along all we have wanted is what's best for Teagan, life is too short for what if's. ID was concerned that T might have a syndrome called Di-George and tested for it, we didn't want to alarm all of you because to us it would not matter if he did or did not it would just be one more thing. Anyway the test did come back negative and now we just have to figure out why he has low calcium and low white blood cells, but the docs are not too concerned so we will just be alert. Please pray that we can figure out what is going on with his foot and that we can have this surgery soon, thanks for all the prayers and support.

11 comments:

Simmons Family: said...

I'm bummed to hear about the swallow study. I have put Owen's off long enough because I'm being selfish and don't want him to have a GTube. They have been through so much as it is ... it just stinks. I'm sure we'll end up there in the new future unless a miracle happens and Owen starts to actually EAT.

I pray that things go smoothly with the surgery, he recovers quickly and his foot heals up soon. You need to be home and back to "normal" life.

Andrea

ann said...

I happened upon your blog - and check up on you regularly. You are so very articulate, and have a strong and positive persepctive on your baby's condition PLUS the positive push from strong faith. I pray for you, your medical pros, your family and for Teagan. May you feel His loving arms around you, today.

Roll'in with the Rowley's said...

Things have to go good with Teagan in that outfit. It is good luck! We will continue to pray for Teagan and your family. Thanks for the updates!

Chelsee said...

I never know who Teag looked more like, but in that pic I think he looks like you, B. So I keep thinking I am coming on Saturday, but I am coming on Thursday so...4days!!!

Natalie Jensen said...

I love seeing these kind of pictures of Teagan. He is such a happy baby. You can tell that his spirit is thriving and he is happy to be here, doing God's work. I think that by Teagan's situation being shared, he is already a little missionary, sharing God's love far and wide.

I hope that they can figure out what he needs soon. You faith and strength never ceases to amaze me. If you need anything, please let me know!

Hollie said...

Teagan sure is a cutie! I love it when you take him for wagon rides, he always has such a huge smile and is so interactive.
Good luck on your upcoming surgery, you will be in my heart and especially in my prayers.
Love you!!!!
Hollie (and Elaina too!!)

Gourley Family said...

I love your outlook Brytt. You are such amazing parents to such amazing boys. Teagan is not only a little stud but he is strong and valiant. I pray the Lord could maybe have relatively the same plan in mind you do, but I do know for a fact that the Lord's plan is best, even when it makes it that much harder on us.
Heart Hugs and prayers,
Emily and Mike
(and quite a few heavenly angels watching over your family! :)

Ashley said...

At this point I am excited for Chelsee to come and visit! It seems like she has been gone for so long and counting down for such a long time. I'm glad that she can come visit and bring her love and support.

I know that you and Ryan know Teagan best and are making the best possible decisions for him day by day. You all amaze me with your patience and faith.

I SHOULD start working at the University of Utah next week, and maybe we can find some time to meet up in the near future.

Love ya,

Ashley

Brooke said...

Brytt,
Our family continues to pray for you and sweet Teagan. We think about you often and know the Lord is watching over you and will bless you in the ways He sees fit. -Brooke Sharp

Pam said...

Hey Guys, I just thought I would let you know that I am thinking of you.

Rhett's Nissen and G-tube was rough the first few weeks. He couldn't get anything down around the wrap for about 4 weeks, and he was on straight tube feeds.

Now he is doing well with puddings and yogurt, but that's about all he can tolerate.

BUT, the Nissen and G-tube has by far been the very best thing we have done for him. His teeth are rotten from all of the reflux, and he has scar tissue in his lungs from all of his aspirations.

I am very happy that we made the choice to do the Nissen/G-tube.

If you need anything at all please let me know. We are going to be up there on the 28th for his spinal cord surgery. If you are still there I would love to stop by and say hi.

Sending lots of ((HUGS)) your way.

Pam and Rhett

Tami Acord-Nelson said...

I have never seen him look so much like Mason! his little mouth is Mason all over again! He has always looked like Teagan but this picture looks a little like Mason! So cute! Look at that sweet little boy. How much he has to teach us about life in his little smile! Dont worry, be happy!
Love you guys!
Tami