Thursday, February 11, 2010

We have a date...and another surprise blessing.

Today was suppose to be a stay home and catch up. Jake was going to do school work and I was going to do paper work. Last night though we became concerned with discharge from Jake's GI tube - what we have come to call his "tummy tube" or "Mickey". I called first thing this morning which I have come to realize is my biggest stress - navigating through the phone tree at Kaiser - make that forest. Fortunately Debbie has saved every single business card and has learned to ask for a direct number or the best way to get ahold of someone each time we have an appointment. So I was able connect with someone in only two phone calls and had an appointment for 11:30 this morning.

One of the things I had been trying to orchestrate was how to get the tummy tube out at the same time as Jake's head surgery. As we spoke to the Nurse Practitioner who specializes in the gastrointestinal tubes, we told her what was going on with Jake and how he really did not need and will not be needing the feeding tube. He has gained much of his weight back and is not using the supplements anymore. So...she took it out. No special surgery - she just got her stuff and took it out. It will heal just like his tracheostemy hole - we cover it with bandages for a couple of weeks (and some antacids before he eats!).  Jake and I thought it pretty funny that her big concern was that he may get a scar that looks like a second belly button. In comparison to his other scars? Really? That might be kinda cool!

Also, when we arrived at the department, the nurse from the Neurosurgery Department was there. I thought she just happened to be there but she was there to see us. I joked with her about having a surgery date and she did! She came down knowing that we would be there to tell us in person - how is that for kind and thoughtful. Jake's surgery date will be March 3rd.

I was praying for surgery next week, so when she told me I was a bit disappointed. Jake put me in my place and was thankful for an actual date. And of course Jake was right - it is not that far away - February is a short month! Plus it gives Robbie a chance to figure out if he can make it home for the big event. As a Dad right now I just want his brain covered - I worry...

I know those of you who have been following and praying are excited with me right now. I can actually hear the yippee's to come as you read this. You may not understand all that we are enduring and the decisions that we have to make but you love and support us. That means so much. Thanks for the gentle reminders that you are there. It is overwhelming.

A friend from years ago wrote me recently about the trial they have gone through with their own child - exclaiming that there is nothing we would not do for your child as they go through hardship. Jake has gone through a lot and though there are most likely more surgeries to come, limitations to overcome, and life to live - he has been given a chance at life. As I recently did a funeral for an amazing lady, I stood there before the service so thankful that I did not have to do Jake's.

We have a couple appointments tomorrow. One for physical therapy and one to check Jake's thumb and heel. We are still watching that one little spot and hoping that the graft takes on his thumb. He also should be having the pins removed. They are hoping that the bone has fused enough at the joint to be stable. His heel has a couple of nicks on it from the rubbing of his shoe. We need to find a solution to that so that the graft can heal. Please continue to pray for both of those healing. Also pray that over the next three weeks Jake would remain infection free.

We are truly blessed to be a blessing. May this increase as we go forward.

Tom (daddy)


Cindy Todd said...

WHOOOHOOO! So happy for the date for surgery and that the tube has been removed. We continue to pray and love you guys! Cindy Todd

Anonymous said...

Yay! We prayed for the last 2 days about this, but I didn't really expect an answer so quickly. That is, I didn't think you'd hear in only 2 days an actual surgery date. SILLY ME! God is always faithful and sometimes He also surprises us. SO GLAD you have an actual date to look forward to now. Just quitcher worryin', Dad! It's all in God's good time. (HA! Me talking about not worrying, major non-sleeping worrier!!)
We're gonna keep right on praying about this up to and past the actual surgery, of course.
Love, Ginger (and Danny, my prayer partner)

The Griffin Family said...

What a great answer to prayer! Thanks for sharing with us!

Kit Tosello said...

Wonderful news! March 3rd is now on my calendar...we will pray!

LuAnn said...

This is great news. We are praying for you all through the next weeks for continued strength and rest and healing! Nice to hear you were able to find a path through that forest =)
LuAnn & Family

Mari said...

Yay!!! We amped up the praying too the past few days, and love how God is letting all of us know He's listening with unexpected surprises like this! So happy for you & to know things are moving ahead in God's perfect timing. We'll continue praying for no infection, heel, thumb & upcoming surgery. Go Jacob..& double bellybutton fun! :-) Love to you all!

Noree said...

Yes yes yes yes yes!!!
Wow...that day will be here in no time. Fabulous wonderful news.
Praise to our Father.
Bless, bless, bless,
Noree and family