Jesus and Java

I can’t believe it’s been since the 22nd of November that I have updated my blog. I have been so busy with Lauren and the student ministry at our church that I have not had much time to update here.

Lauren is doing amazing. She had her trach taken out and the stoma stitched closed this past weekend. She is now home and making noise. She is quite a bit hoarse but that is to be expected. She has “discovered” her voice we thing and sits and makes noise when she reads a book. The greatest moment is one I posted on twitter. I could feel her breath on my neck as I held her sleeping body in my arms. It brought tears to my eyes because it’s one of those things must of us take for granted.

The student ministry is going full throttle this month. I actually can’t wait till the end of the month so we can all (students included) breath a little. We had a spaghetti lunch this past Sunday to raise some money for our winter retreat which is scheduled for the 20th-22nd of December. We are heading to Boone, NC for two days of skiing and worship/retreat time. I’m going to be teaching and Justin Teseniar is going to be leading the music this year. I’m hoping that this will be a very reflective soul searching time for our students as they reflect on this past year and look to the new one that is upon us. Last night and tonight we are volunteering at the Christmas Toy Store which is hosted by our local association of churches and is an opportunity for our students to help those in need. We have Refuge tomorrow night as well as a parent meeting to follow for the winter retreat and a few other events this month for the church as a whole and our student ministry. December is also a time I do a lot of planning for the following year and really try to get my brain wrapped around the direction God has for us.

Fun Times!

I’ve had a lot on my mind lately. Some of which I would love to share on here and some of which I just can’t. Some of it is exciting yet stressful and some is just unknown to us but known to God.

Lauren is rocking it. In fact, we are waiting on a date to have her trach taken out which is big news for our household. All we are waiting on is the OR date, which could be as early as the first week of December. We can’t even fathom what life will be like without all the medical equipment we have to carry around with us. The diaper bag alone will loose about 20lbs! It will just be amazing. We are going to be able to put “the tank” in storage for awhile and take out pinky. The tank is the tandem double stroller we use to carry all her medical junk as well as whatever else we need to bring with us places. Pinky is a VERY pinky stroller that screams girl. Even though she is getting the trach out, she still cannot eat on her own and will have the feeding tube for a long while. Our goal is to start kindergarden without the feeding tube, feeding pump, and backpack; so that is a few years.

I have friends who have just recently changed church jobs (as well as states) and friends who are praying for God’s leading to new positions. I know churches who are struggling with the choices they have made/will make in the coming months and I’m praying for God’s direction for them.

I’m seeking God’s direction for our student ministry this coming year. We have our Winter Retreat coming up and I still have a lot of planning and prep to do. I’m praying for each of our students who are going to attend this event and those who have darkened the door of Refuge since I came on staff, I pray that God would speak into their lives even if they don’t care to hear what he has to say.

God has been challenging me through various books and blogs I have been reading and I’m grateful. There are many minds out there far more brilliant then my own.

Now I leave you and ask for your continued pray for my daughter, my wife, and myself too. I’m off to play a bit on my box before I slip under the blankets and drift off to sleep.

Midnight dinners at Duke can be very delicious but I doubt very healthy. My chicken salad sandwich will satisfy the taste-buds nicely with it’s green leafy stuff, sharp cheddar cheese, mayo, tomato, and banana peppers, all spread out on a couple nice pieces of sourdough bread. I forgot to mention the extra pickles the lady tossed in for good measure. Yummy.

Lauren is doing pretty good. She was moved out of the PICU late this evening and we now have a private room on the floor. This was not supposed to happen until at least Monday. It has it’s mixed blessings. The reason it happened sooner then later is due to the tear in her spinal drain tubing. They had to take it out to reduce the risk of infection which could be really bad since it is literal draining CSF from her spinal/cranial area. The good news is we may go home sooner then expected. We are hoping the CSF leak is fixed and will only really tell with time and healing. Lauren is still pretty swollen on the left side of her face and the area behind her ear has to heal all over again. The good news about the surgery is that it went better then the doctor thought. He was able to save her ear drum and the “hearing bones” of the inner ear. She may still need a hearing aid in the near future but we won’t know until they can do a hearing test after she has healed more. Another huge plus is that we have changed her feeding schedule while we have been here so she will no longer be getting a feed all night long. She will now have 6 larger feeds throughout the day instead of 4 smaller ones and the long night feed. This will make the transition to not having a nurse at home (when the time comes) much easier.

We’ve been praying for a few families we have meet here this time around. The first is in the PICU and we shared a room with them, it seems that the doctors are trying to figure out what is going on and it’s been a difficult process. Another was across from us in the PICU (in the next room) and was flown in from Texas via a medical transport, much the same way Lauren came to Duke on one occasion. The third I meet tonight, the mother and her family where looking at Lauren from the hall since she is such an outgoing person and apparently cute as all get out (I’m not bias or anything). They have been here since Tuesday and will likely be here throughout next week. Their son has seen many of the same doctors we have and we can relate to their heartache.

I’ve been able to interact with a lot of the Peds staff this time around and I’m grateful to hear their stories. I truly enjoy talking to people when they are willing to be open and engaging in return. It also helps that they are stuck in a room with you for their entire shift. We have had some good laughs in the last few days, not to mention the head or two that pops in to watch college football on your flat panel TV with you when your daughter is sleeping.

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.

So the entire week in now umm changed for me. I am stuck in the bedroom with H1N1. Yes good old swine flu. It really sucks I have to tell you. I feel like junk. I’m still trying to figure out where I might have picked it up at, but I’m sure that is likely impossible. My guess is one of the two churches I was at Sunday or possible Duke on Monday. I’m leaning toward one of the churches since I think someone who was with me is getting sick too.

The good news is that so far Lauren has not picked it up that we can tell so at this point she will still go in for surgery in the morning. They did put her on Tamiflu just to be safe and our nurses are checking her vitals every hour to make sure nothing is developing.

The bad news is that I am stuck in this room and can’t be with my family during this time that I really need to be with my family. Lauren will be in the hospital for about 6 days so maybe I’ll get better and be able to visit her. I just feel kind of helpless sitting here. I’ve been playing on my xbox 360, reading, and messing around on the internet. Oh wait don’t forget sleeping. Sleeping has been nice, however I can only sleep on my back. If I turn left or right I cough really bad and the shallow breathing kicks in. The doctor who diagnosed me said she was borderline having me admitted to Duke and I have to go back and see her tomorrow or Friday for follow up.

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.

I’m sitting here in my office, I have not been in this seat very much this week or last but I’m hear now. We cancelled refuge this past wednesday night (good or not, I feel it was the right choice). There was no way I could make it here from Duke after Lauren had her tests to set things up (we had an event in the fellowship hall the same day so setup had not happened yet) nor would I have been in the right frame of mind to teach, or did I have enough time to have someone else prep. I have to say that balancing the ministry here and the home life has been a challenge. I fee that I am behind in so much and ahead in other things. Im glad my real office weighs about 6 pounds and has a 15″ screen with a glowing Apple logo. I’ve found it interesting to do ministry “work” in different environments and glad that I work at a church that has entrusted me with this ministry even when it means I’m not sitting at my physical desk 40 hours a week or for two days because Lauren has appointments or she is in the hospital, or that my car is at the church till 12AM one night and only there 4 hours the following day, or that I’m up until all hours planning a worship service because that’s when time was available to do so and I have not been sleeping well anyway. Our church knows I’m working when I can, 5 minutes here, a couple hours there. I’m thankful for technology and the ability I have through it to work in these different places where 20-30 years ago it would have been more of a challenge. Our students have been understanding too, we connect daily/weekly on Facebook and through twitter and text messaging. No, it does not compare to “in person” community (in my opinion) but it’s a form of community just the same and for them more so. Find balance in life is hard. If God is the focus, the center (thanks Charlie Hall) then all things find balance and flow out from him who is the axis of life.

So I’m thankful for technology, for life, for Lauren, for a church that has my back, for our students’ and adults’ support/understanding, and for God who we struggle with understanding sometimes (especially when our life is nuts) but hey I’m okay with that since Jeremy Copeland reminded my wife and I Sunday night at a preview service for a church he is planting called Story Church that “Jesus isn’t overwhelmed by our circumstances.”

Phone just rang and a student needs a lift from school so I’m out to pick him up and spend some time with him and hope that God would use me as a subtle tool to speak hope and love into the areas of his life that he needs it most.

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.

So for those of you who do not know Lauren does in fact have a CSF (cerebral spinal fluid) leak. She has since been admitted to Duke once again and I am sitting with her in the room. I enjoyed her waking self last night until around 11:30. After they put the IV in she was spent on energy and finally crashed. In fact, she’s still asleep and it’s 9AM. I just saw her hand move so maybe in the next few she will awaken. Today will bring me trying to keep a very active child in a bed or my arms because she is NPO and connected to an IV pole for fluids etc… if we walk the halls she has to be in he stroller and me pushing that and the IV pole. Why did God not give us 4 arms?

So medical today: MRI with sedation, CT with contrast, and who knows what else. The goal is to find the CSF leak and figure out why it is there and what they are going to do. The neurosurgeon said we can only speculate as to the steps after that. It could be they need to put a drain in, they may need to do surgery to open her head back up and do some type of repair, the tumor may have eroded something or changed, we just really don’t know and it’s the unknown that makes you feel helpless.

I read these words over at my friend bush’s blog.

“May God grant me the grace and the ability to show August what it means to be a Godly man…who risks everything he has for the sake of the Kingdom and Glory of God.”

The whole line has hit me when it comes to my daughter, her life now brings people hope. Will it in the future? Will my wife and I raise her to be a Godly woman? Will she choose to live her life that way? See ultimately it’s her choice, no matter what she chooses or how she lives we will love her, encourage her, and support her. I pray too like Bush, that God would grant me the grace an ability to show Lauren what it means to live a Godly life.

Now the last part really hits me as a father/pastor/christian/whatever you want to call me “…who risks everything he has for the sake of the Kingdom and Glory of God.” Man, I don’t think I’m there, this has been something I’ve really been struggling with lately, and if I’m not there how can I as a father/pastor/christian live that out for my daughter or the people I minister too week in and week out?

Lets face it though, most of us sitting in front of our computers, in the air conditioned office/home/coffee shop where your reading this are with me. We talk big and it’s just big talk. If God told you or I to drop everything and move your family to who knows where, with no place yet to live, a mortgage to pay where your at now, no job, no whatever, we would not do it. We always want a plan, and always have a plan ‘B” in the wings. We don’t really just “risk everything for the sake of the Kingdom and Glory of God” do we?

My God, when you bring these moments into my life may I be willing to risk it all like Bush is talking about, for the sake of your Kingdom and your Glory, for the sake of my daughter to be a Godly example to her and to speak into her life on your behalf, and for the sake of those who you will bring into my life, that they might see you in my brokenness.