Saturday, February 13, 2010

Pins are out!!!

Still basking in the shadow of yesterday's victories, today at Jacob's appointment for his thumb the doctor decided it was time to remove the pins! We really were not expecting it but as he looked at the x-rays from over two weeks ago and at the current stability of the thumb he was quite pleased. There are still two spots of healing on the graft sight and though it is long and slow it is healing. His thumb is fused at the knuckle so he will not be able to bend it but the doctor was encouraged by seeing blood when the pins were taken out and hair growing. That is the sign that the blood vessels are moving back through there. (He lost one of the two major sources of blood to the thumb.)

Today I actually got a better picture of how tenuous Jake's thumb was. When they went in to do the thumb surgery back on November 5th, they actually removed a lot of dead bone and put back together what was left of the healthy bone - the pins holding it together. I remember them telling us that the bone was very brittle but he did not tell us then that he did not think that it would stay together. The pins were in longer than normal but they have fused together. The thumb is holding together. With the pins out,  Jake still needs to wear the brace for while the thumb looks fused in x-ray, we still want to be cautious and assume it is tender.

Jake's thumb for me in the midst of all else is a tremendous answer to my prayers. I hold to my memory of standing at his bedside while he was in a coma and praying for his organs, for his wounds and specifically praying for the salvation of his thumb. The thumb that we were assured was going to be amputated but also assured that they could replace it with one of his toes - such a bitter taste from that assurance. I know that many have prayed with me for prayer.

So as I consider all of this - the reaction of the doctor - the state of his thumb - what should have been - I see the miracle - I see the hand of God coming down and answering the prayer of my heart - assuring hope. There have been several moments of on this journey that we have seen God work - that doctors have been surprised - moments that looked bleak - moments that turned into miracles. The thumb was never the life threatening issue - but for me God knew that it was important to knit it back together.

So pretty amazing week. Tummy tube out, pending surgery for his head, pins out... yeah pretty amazing. After such a long, long wait, we are taking some pretty big steps forward. The road is still long ahead of for Jake as he tries to regain so much that was lost...but we have so much to be thankful and today we are so incredibly thankful for his thumb.

Grace and peace in increasing measure.

Tom (daddy)

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)

Tuesday, February 9, 2010

Green light...but foot is still on the break!

Today's meeting with the neurosurgeon and anesthesiologist went well. We got the green light for surgery!!!

Jake is healthy and strong and free of infection and ready. But.... yes there always seems to be a "but"...we are waiting for a date from the plastic surgeon as to when he is available for surgery. Hmmm last time in the hospital it was the other way around. They said it will be within the month. ARGGGGGGG. On one hand I want them to call and say it is tomorrow....on the other we would like a little warning. But I told them that we will drop everything for this surgery.

 But let's go back to "we got the green light for surgery"!!!! and would you join me in praying that it would be next week? Jake has waiting so long for this and "Lord? is it too much just to ask you to arrange the schedules of these doctors quickly?"

That is all I have for tonight. Thanks for hanging in here with us. I wonder often how if anyone is still with us and then someone mentions something about all of this and reminds me that at least a couple of people are still with us and that means a ton.

Not done yet.

Tom (daddy)

Monday, February 8, 2010

Pre-Op Appointment Tomorrow

Tomorrow we go in for Jakes pre-op appointment with the Neurologist and Anesthesiologist. Yes there is a lot of anticipation and anxiety around this appointment. We are hopeful that we will get positive news and that the surgery will quickly follow but with our experience behind us we are preparing a few hills to overcome. Jake sees this surgery as a step toward freedom - he is itching to drive again and have a little bit of freedom. That will come and I of course am a nervous wreck and do not want anything else to happen.

Keep us in your prayers, keep the doctors in your prayers...

Still so thankful that we have a community that surrounds and cares about us.

Grace in abundance

Tom (daddy)