Jesus and Java

So Lauren made it through surgery just fine. They got the spinal drain in which was going to help drain fluid and keep pressure off the area they where going to repair. Well, the repair did not happen. From my understanding (since I was not there) when they got in there to do the repair the saw tissue pushing its way through the bone and they are not sure of it’s brain tissue or tumor so they could not proceed any farther. They did a biopsy and sent it off but it’s going to be a few days before they get the results. They also did some stuff with her left ear which will likely have a major negative effect on her hearing but we will wait and see.

Lauren will remain at Duke for the next 5 days as planned and at the moment will come home. Then once they have the results and they can get everything organized again they will bring her back into the OR for the surgery again, this time to either repair like they where going to before or to remove tumor and repair depending on the results of the biopsy.

I’m still feeling like junk on and off. Rebecca is having to miss work tomorrow to sit with Lauren since I’m not allowed near the hospital right now due to my lovely new friend H1N1 taking up residence in my body. Duke has also put Beck and her parents who are visiting us to help out on meds for H1N1 just to be safe. Don’t worry Lauren has been on the meds for H1N1 since they found out that I had it. No one is allowed to visit Lauren, Rebecca is having to fully gown to see her in the PICU and I’m not sure if that is going to be the same when she goes to to step down.

I really don’t know what else to type at this moment other then asking for your continued prayer for our daughter and her health.

This next week is going to be busy.

Monday: appointment for Lauren with peds neurosurgery, OT appointment for Lauren, work at the church in the afternoon, meeting with Copeland to get speakers back, drop drum set off to Justin Teseniar, and work on service for refuge Wednesday.

Tuesday: Work on service for refuge & setup the worship area. Be home by 3PM so the nurse can leave. Stay with Lauren until the nurse comes at 11PM while attempting to work from home. Watch lots of Mickey Mouse Clubhouse. Fallout 3 Game of the Year Edition drops. Cook Dinner.

Wednesday: Up early for nurse to leave, finish service details/setup for refuge, pickup the outlaws I mean in-laws from the airport (I might have lunch with them if I am lucky), nurse leaves at 4 when my sweet wife gets home (she will be happy to see her parents). refuge at 6PM, freak out because I don’t have someone to lead music, then remember that my computer can handle it.

Thursday: Lauren’s surgery. We love visitors but Duke is not allowing ANYONE to visit other then immediate family members and no one under 18. Clergy are an exception, which covers just about all the people I know! However please call my cell before coming to see us. Lauren will spend at least the first day/night in the PICU of her 5 day stay and no one but us can be in there with her.

Friday: Stay with Lauren in hospital, hopefully on step down, pending how she recovers. Work on service stuff for Sunday. Push lauren around Duke in her stroller for 12 hours (pending how she’s doing). You laugh but last time we walked around Duke that much with her. We saw the fish tank (her favorite thing at Duke) every few minutes.

Saturday: Stay with Lauren in hospital.

Sunday: Morning service & movie night at church, stay with Lauren in hospital.

One of the doctors called us today and let us know that they are working on a plan for what to do with Lauren’s CSF leak. The hard part is that he said this entire CSF leak issue is as complex as her original surgery. To repair or whatever it is they are going to have to do will likely involve going through her nose or opening her skull up again. We where also told that the soft palate repair that she had a few weeks ago has really been successful but it was a one shot deal, the doctor does not see how there could be a take two on it, If it gets messed up in the next surgery (hoping it won’t) there is not much we can do and that is complicating things even more. The next test they do will likely involve the injection of a radioisotope in the spinal fluid to track the leakage. They have already done an MRI and a CT with contrast but can’t find the leak.

The doctor just came out and said things went well. He said it was one of the most challenging surgeries of this type that he had ever done but that she has a complete soft palate. He said now we just have to wait and pray that everything heals well. He said when you move tissue sometimes it doesn’t always heal as you expect so he will keep a close eye on things. She will have to wear elbow restraints for 14 days which means she won’t be able to sign and therefore will probably be very frustrated. We are now sitting next to her and she is still very much asleep. We are looking forward to getting up to a room in just a bit and “move in” for a few days. This next week as she heals and we see the doctor again will prove to be a very pivotal time.

Please pray that the tissue would stay healthy and not die and blood flow to it would be good. I’ll upload some pictures later this evening.

So the have taken lauren back for surgery. They gave her some “funny” meds to calm her down while we where back there. She was getting really fussy while we where waiting and holding her. The meds helped relax her and us since we also where getting stressed out trying to hold/calm/play etc… with her.

The doctor said the surgery should take about 3 hours give or take. They took her back around noon and we have yet to hear if they started it or not. We are assuming they have or will soon. The goal is for her to be out of the hospital by Sunday afternoon. They are also wanting to put her on step down (a step below PICU) after the surgery but last we heard there was not an available bed. We will see where they put her, they are trying to get a bed open. They have a few hours and will have a place for her so we are not really worried about that.

Also some of you have heard that I received a call this morning from my Dad letting me know they found my Uncle Larry dead in his apartment in San Diego. They think he has been dead for 2-4 days but won’t know for sure until they finish the autopsy. I am not sure what type of arrangements are going to be made but I should know more later this evening. If they do decided to do a funeral I am hoping to be there pending how Lauren is doing post surgery and if we can come up with the cost of a round trip ticket to either San Diego or Chicago pending what my father and my other uncle decided to do.

Please be praying for both Lauren with her surgery and my fathers side of the family as this death was unexpected.

***Just got the call they started surgery 20 minutes ago***

Driving to SC to play music at a wedding tomorrow

My Mom is up from FL and going with me to said wedding

Lauren has an eye appointment tomorrow at Duke, we are betting we will be doing patching again

Lauren is really on my mind tonight, I’m trying to put my head around everything and it’s kinda rough (she’s fine, It’s personal and just not an easy night for me)

Father’s Day, my Birthday, and our 6 year wedding anniversary in a matter of weeks.

VBS at church coming up

Student Life @ Daytona Beach for our student ministry in July, looking to meeting up with a blog friend

World Changers starts Sunday

Need to carve out family time

Need to pay bills with money that does not exist

Trying to remember to bring David back his CD’s tomorrow

Did I pack deodorant?

This is how life roles when you can’t get a break in life. The first house we had under contract has fallen through and we lost some money, granted it was not a large amount to most people, but to us it was. We where able to get the rest of our money back, thank God. The more our agent dug into things the more fishy it became. I’ll post details later. We want to put an offer on another house but can’t until at least Monday when we are officially pulled out of the current one. If this too falls through we will be stuck in a rental for at least another year. We are really tired of having to move, especially with Lauren’s medical condition, it makes it that much more difficult. We never did fully move into our apartment as some of you who have seen it can attest.

Lauren is doing well, taking first steps and signing more, I will work on getting some photos up of her doing this. She is after all growing like a weed. We see the plastic surgeon in July to get on with the next leg of surgery and hopefully in 6-9 months or more removing her trach, but we are done holding our breath for that to happen (pun intended).

I miss posting photos for Photography Friday and hope to get back at that soon, there is so much to shoot here in the triangle. Finding time is a whole other road I’m not going to travel down.

I was actually going to take a sabbatical from blogging but well… I did for a few weeks. Hope all is well in everyone else’s world.

As a side note, we have raised between $700-$1,000 for the Ronald McDonald House of Durham, If you would like to help out please click the link in the right column to donate.

So Lauren is going into surgery tomorrow to biopsy a mass in her nasal area to see if it’s tumor or just scar tissue from a previous surgery. They are also going to look at the tube in her left ear, downsize her trach, and do some other stuff. Please keep her in your prayers.

The tentative plan is to keep the trach until after the plastic surgeon does his work to repair her palate which will be some time after July of this year. So we are looking at least another 9 months (we think) or so of her having the trach, we where hoping to get it out within the next month or two but that is no longer the plan.

She is going very slow with the eating by mouth thing and is not taking in enough to even do a swallowing study so we are a long way (at least 2 years) off from getting that taken out unless she decides to make a drastic change. Every time we make some progress forward we go backward because of a surgery or something.

We are very thankful of the people who work with us here, they are some of the best in their fields and do an amazing job.

We are also making an offer on a house in our area and there are a lot of variables so please pray that if it’s God’s plan it would work out.

***If you have not done so and would like to donate to the Ronald McDonald House of Durham you can do so by clicking the link in the right column of my blog.***

“The best example of leadership is prioritizing family before ministry.”

::Lee Baker

I know he probably didn’t say it first but hey said it to me and I agree so there ya go. Lee has always been a close friend who will tell you like it is and call you down when you need to be called down as well as lift you up when you need that too. Even though we live 12 plus hours apart and have not seen each other face to face in almost two years I know I can call him day or night when I need encouragement and direction. That is doing life together, that is friendship. Check out his blog Vintage Thought.

I want to thank you all for your support and prayer for Lauren, she is now a whole 1 year old and we could not be more amazed with this child God has blessed us with. It has been far from easy as many of you know, but this is the life God has blessed us with and we continue to live it one day at a time. I have to say someone asked me if we could go back and change everything would we? The answer is no, we would not change a thing, Lauren is Lauren and we have grown into who we are because of this last year. We where told recently that we treat our child like a baby not like her illness/disease/diagnosis or whatever you want to call it, that made us feel good. We desire to be parents first.

So on that note I wanted to share that we raised $632 for The Ronald McDonald House of Durham at Lauren’s Birthday Party and people are still calling the church about donating. This does not include any online giving which some of you have said you have done. I hope to find that out soon to give you a more exact figure. I want to thank you all for your support in this. Rebecca and I are looking forward to taking Lauren and the money we raised on her birthday to the Ronald McDonald House of Durham later this week. If you would like to donate you can still do so online at any time, I’m going to post a link to do so on the right column of my blog later this week, but for now you can click here.

So here is the video I showed at her party of her 1st year of life, it’s not the best quality since we don’t own a mamajama video camera but I think you will enjoy it just the same.

[youtube=http://www.youtube.com/watch?v=8s348MdqdJU&hl=en&fs=1]