Saturday, July 14, 2007

Latest Trip to San Francisco

We thought our trip to San Francisco was going to be harrowing. Getting our little princess to cooperate and ride peacefully in the car seat is a tall order. As Ali has become more alert, she has learned to use the ancient child-parent communication tool known as the temper tantrum. She threw two on the way to San Francisco and two on the back north to Eureka. The first one on the way home lasted from Van Ness Blvd. in downtown San Francisco, across the Golden Gate Bridge, through Marin County all the way up into Santa Rosa. That's quite a bit of beautiful Northern California countryside for a loving married couple to experience with a baby shrieking in their ears.

But the worst baby crying I've ever seen is when Ali had her g-tube (see below) snatched out by the Doc.That was quite an undertaking. Ali started crying as soon as the Doc started probing around the g-tube point of insertion in her belly. The charming and beautiful Susan performed a disappearing act at that point. She's not a big fan of baby pain or the sight of baby blood.

In that little doctor's office room were Ali on the the table, the Doc, Nurse Vance, and me being completely useless and in the way. But they say I had to stay (something was muttered about a parental present and hospital liability). Nurse Vance held held Ali's legs, I held her hands and talked soothingly to her. With all those hands holding and probing and me with the gentle voice, Ali got wise to the fact that something really painful was about to happen so she freaked. The Doc cut the tube spraying the contents of Ali's stomach all over the room, wrapped part of the tube around his fingers and clenched his hand into a fist, waited for the hyper-ventilating and screaming Ali to take a breath, and yanked. I'm pretty sure Ali's face turned purple at that point. I don't do well with the sight of baby blood either, but what are ya' gonna do?

The Doc and Nurse Vance were a blur as they worked to insert Ali's new feeding valve, the Mic-key. They were done in about thirty seconds and Ali was in my arms in forty. We went down to radiology from there to make sure the Mic-key was installed in her stomach properly. That's when the charming and beautiful Susan, like a magician's assistance, re-appeared and gave Ali the hugs and comfort she was looking for.

The x-rays showed that everything was working properly and we were on to our next appointment.

That Mic-key tube has changed the way we handle Ali. For two months, Ali has had a catheter hanging out of her abdomen. Now she has this flat little button. It's so cool. It doesn't get in the way and Ali is not nearly as agitated by this thing as she was by the g-tube. She can be placed on her belly, she can wear different clothes, we can put her in one of those baby carrying pouches, and, best of all, she can be placed on her belly to work on crawling in physical therapy.

Now that Ali is drinking a bottle, she will only be fed directly to her g.i. tract at night, when we give her medicine, and in case of an emergency.

It's nice to see things start to get normal and un-harrowing with her.

12 comments:

Anonymous said...

Bryon and Susan, Thanks for the continuing updates on life with Ali. I continue to pray for a full out miracle restoration to normal, healthy kid life for her! God bless YOU both for taking on this challenge!

I bet this blog commentary you are keeping will make a wonderful book that will help support Ali and her wonderful grandparents in days to come. Hope so.

Anonymous said...

Wow...Go Ali! Go God!!

Blessings all around,
Jan Arant
Calvary Chapel Oceanside

Chris Goeppner said...

another major step in this mircle girls young life. i cant wait to see her next steps of progress. love you guys. prayers.

Bryonm said...

paigemom: that's the kind of encouragement i love...

jan: thanks for checking in and commenting regularly. the Lord is answering your prayers right before my eyes...

chrisg: i miss you, man...

Anonymous said...

I can't believe how much Ali looks likes Susan! So beautiful!!!!!!!!!!
It's amazing how God is making HIS work present to all of us on the outside looking in. God is great and Ali is proof.
We continue to pray and can't wait to see all of you back home at church.

The Okon's

Chris Goeppner said...

As unpleasant of an experience as that was, it is so awesome to see Ali progressing! I am so excited that she's drinking out of a bottle!!
We miss you guys so much! You are in our prayers!
-Penny

Anonymous said...

Wow, the pictures of her sleeping are just priceless. She's adorable in those sleeping shots.

Anonymous said...

what a progress she is made and we are so glad to hear that she us getting more sleep!

Great job Ali! Praise the Lord for the grandparents that he has blessed you with.

Anonymous said...

Bryon,
just a word of encouragement when you have down days remember to praise and worship the Lord and he will lift you up. I'm thankful that you keep us updated on ali's progress and the mighty moving of God's healing hand. We will be having for 24 hrs prayer for alot of things country, churches,families and for those who are sick and much more so lets us know of any area's yet that need to be prayed for it will be July 22 & 23 so let us know what God does so we may rejoice in his wisdom and ways and in his timing and his great love.

Anonymous said...

Bryon and Susan,
Thanks for keeping us up-to-date with Ali. It is awesome to read how God is answering prayers of many who have prayed so specifically for peaceful and easy rest for Ali and for reprieve for you and Susan. God is truly awesome! Can't wait to see you guys back at church.
Love, Marcos and Susan

Unknown said...

Praise God for answered prayers!!!! So glad to hear things are progressing well...still praying!

-Liz

Anonymous said...

Yeah, I'd have been right behind Susan, in disappearing. What a little trooper Ali is! What a great God we serve!