Jesus and Java

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.

Beck and I are excited today because we get to volunteer and be a part of Angel Flight and pickup someone from the airport and drive them to Duke for medical care. We are now a part of the ground transportation team in our area. It’s great to be able to give back to those in need, especially when we have the compassion and understanding for their situation. The pilots who fly people do so for free and take people with medical needs who may not be able to afford it to places like Duke, UNC, John Hopkins and others for their medical care. If you want to know more about angel flight and what they do click here.

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.

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.

Lauren and Mommy Before Palate Surgery

Lauren and Daddy Before Palate Surgery

Lauren in Recovery

Lauren in Stepdown

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***