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.

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.

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?

Why would you die for me? Why would you give your life over for me so long ago, long before I walked this earth, long before my parents or their parents walked this earth? I have done nothing do deserve this type of love. Why would you do this for me? I cannot grasp your idea of love and your idea of forgiveness. Yet, you pour it out onto me.

In my shame and brokenness, I crawl before your feet. My tears, they stain your skin with my filth yet in your holiness they are continually washed away. You are far from condemning, but gently lay your hands on my head and speak to the very depths of my soul. To places that only you and I know exist. You speak to my soul; and you speak for my soul. If you did not speak for it, it would be banished for it as I said is full of shame and brokenness. Some of which is of it’s own accord and some of which was brought about by the very nature which you created in me and in the others who have gone before me, even to the first of your creation.

I do not blame you for this nature but thank you for it. For in this nature you have given others and myself knowledge and the idea of choice from the moment time began and it is through this nature and the idea of choice that I must live and in doing so die to self and to the breath I take. Your hand still lay gently on my head, you intercede for me today and every day, speaking on my behalf to the one I cannot see. Do I desire it? Yes. Do I deserve it? No, but I thank you for it. Without you I would be nothing.

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.***

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.

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Subject:: The Family
Camera:: Canon EOS Digital Rebel XTi
Aperture:: f4.5
Shutter:: 1/50
ISO:: 200
Focal Length:: 100mm

We had a wonderful Tuesday last week. Lauren had to get stuck nine times to get in IV in her. It was for her MRI with contrast. Which went fine after they got the IV. The great news? Dr. Grant does not think the tumor has grown! This is awesome. We have been very upset since the other doctor who will be removing the tumor from her palate on Friday said that it has. They went over the previous scans and showed us that like last time, gravity has caused it to drop down more. The part they are going to leave in her cavernous sinus has not grown either. Lauren will go in first thing Friday morning to have the tumor on her palate removed. They will not be fixing the palate at this time, that will be done over the course of a few surgeries in the distant future. She will still have the trach until the spring and the feeding tube until such time as she can eat by mouth which could be a few years.

I didn’t mention Monday. It was spent with the eye doctor checking out Lauren’s corneal abrasion (scratch) on her eye. We go back first thing in the morning to have it checked again. We are hoping she does not have the herpes simplex virus (think that’s right) in her eye. The plus side is that she has no corneal sensation in that eye so she can’t feel a thing otherwise she would be screaming bloody murder.

I’m sure there is more but well… I just can’t think of it.

We continue to have problems with our apartment. We have an issue every week. Really, every week. The heat went out last week on top of everything else and we where told it would be a week until it’s fixed. It’s hitting between the 20’s-30’s here every night. We told them to have it fixed same day or let us out of our lease. It’s fixed. What we where told would take a week took 2 hours. We have also been having almost daily issues with our toilets since moving in. They have fix them, I have fixed them, etc… well the new ones finally came and they didn’t fit. So they said they had ordered ones that would. That was a month ago. They lied. They never ordered them. So I will say this, we are moving as soon as our lease is up. All we want in life is a place to live that everything functions right. You would think that is easy to get but I tell you it’s not. Something as simple as toilets or heat truly makes our lives better in the midsts of everything else. I have had to fix towel bars that have come off the wall, shelves that have fallen (both because some idiot cut corners and didn’t use drywall mounts), there is a shelf that is about 6″ to short in the kitchen that things fall behind all the time, and I could go on. We have had to have the carpet replaced in our closet because it smelled of who knows what. There was a water leak in the apartment above us that stained and molded our celling… still not fixed, they forgot about it and we won’t let them spray stuff in the apartment because of Lauren’s medical stuff. I’ve been sitting here listening to the rain and noticed that water is leaking down our fireplace which is new since they where working on the roof a few days ago. Mold is bad for Lauren, with the trach she has no way to keep it out like we do with our noses. Did I mention the gates to our “gated community” have been broken for over 3 months and it looks like they are no going to repair them? They never fixed the celling above the water heater after the flood above us, it’s still hanging there. Some wire box for the AC had loose wires which melted and smelled really bad. They just bypassed.

Well thanks for allowing me to vent and if you read all that I’m truly sorry. I just needed to get it off my chest. I’ll go on later when I have more rant energy.

You might ask me if it’s aggravating and I would tell you yes, but I would also tell you that it’s just simply life. God’s the poker dealer and we are the players. We just simply have to work with the cards he deals us. I do think he deals them to us for reasons unknown to us, sometimes we get a pair or two, maybe a full house, or if we are lucky a royal flush. Other times we just keep folding and loosing our chips. It’s life and after this comes an eternity of love that will be unmatched.

Well, she is yet again in the hospital. This time for her flu shot, which she had a major reaction to. We are talking severe, hives, rash, fever, respiratory distress, some pain I think (by the way she acts), heart rate that is between 170-230. She has not been a happy girl. They admitted her yesterday for observation and to make sure she does not go into any type of shock or whatever. She is doing well and will likely come home today. She is still experiencing all of the above (minus going into shock) but they think she will be fine. The rash, fever, and hives come and go and will do so for about a week. As I always say, it’s never a dull moment in our house.

Also note the heat went out Sunday night so it was a bit chilly in the house. They did fix it in the morning but it’s just one more thing that has gone wrong and continues to go wrong with our apartment. We are on the verge of breaking our lease and moving, we are just sick and tired of all the issues. All we want is some normalcy out of a place we live, not to have problems every week. It’s not the staff as much as it is the apartment itself.

Lauren’s next surgery to remove the tumor (which has grown) that is on her palate is now scheduled for the 5th of December. Please continue to pray.

I don’t even know where to start.

As some of you (those in SC) found out, traveling with Lauren out of state is just not going to work so well. We have decided not to travel that far again until such time as her trach is removed, which now looks like March or April. It will be about 3 months after the tumor is removed from her palate which looks like it will be as early as December.

So traveling with Lauren… It was our desire to surprise friends in Williston this last weekend and bring Lauren to First Baptist for Homecoming. Our plans did not work out. We got to town Friday afternoon and everything was going great. Around midnight Lauren started coughing really bad and Beck and I where up with her through the night and ended up in the ER at the Medical College of George in the morning. We spent 8 hours there before we had Bonnie Yon bring us our belongings. We knew when MCG wanted to admit her for a few days that we would be taking the fast track back to Duke Medical Center and we did. It took 6 hours by ambulance. We arrived back in Durham around 1AM and where very tired. I sent Beck home to sleep and I stayed with Lauren. She was discharged on Tuesday, again nothing grew in the cultures they did and she was negative for RSV even though she spent most of this hospitalization on contact isolation. She responded to the antibiotics well as usual although she also broke out in a viral rash (its better now).

She got me sick. I was contagious but I am no longer. I’ll be on antibiotics for the next week. I still feel like junk but hey what else is new.

Today (Thursday) we took Lauren to her ENT appointment and they also did a CT scan. We heard some shocking news, news we did not expect nor even thought about. We where hoping for some closure as I have said before. Every appoitment we hope for it, but today was not that day. Before the doctor looked at the CT results she looked in Lauren’s mouth and said “Wow, the tumor has grown!” She could see it with her own eyes, and later when she looked at the CT it only confirmed it. She could visually see a difference. As of the last MRI and scope which was done in late August early September nothing had changed. In the entire 8 months of her life nothing had changed, nothing really grew, nothing. The tumor was said to be benign (which it may still be), very slow growing, mature type 1 teratoma.

We where and still are shocked. They are going to be doing an MRI later this month and have her on the schedule (tentative) for surgery in early December but this raises a lot of questions. What about the part they left in her cavernous sinus? They did not want to touch it because it would be “devastating” to quote one of her doctors. To remove that part if they had to could kill her, thats why they left it. Her chances are better if they don’t go in there and up to this point it never changed. Till she gets the MRI later this month we will not know. The fact it’s grown more in her palate suggests to us that it has changed, again since it has not so far we where not expecting this. Please continue to pray for her and us. We feel like we have been thrust back into the unknown once again.

Yes I know, it’s been awhile. She is doing pretty well. Sitting up, grabbing at things, playing with blocks, putting the blocks in and out of her toy cookie jar, etc… We now have PT and OT coming to the house to work with her every week. We still go to speech on Wednesday mornings to work with her on eating etc… That is the set stuff for the week.Lauren went this past week to visit the lung doctor and has now been put on a breathing treatment twice a day. I guess she has developed some airway disease that 95% of kids with trachs have. Always fun. The medicines costs us about $600 a month for that but lucky us we have insurance and she has secondary medicaid so we have yet to pay a dime. Kinda nice because that price is after our prescription plan and we could not afford it on her own. Lauren also is on a very specific formula that is kept behind the counter at the pharmacy. It runs $750 a month (1 can lasts about 2 days at $50 a can) insurance does not pay for it but medicaid does and we have it shipped to our house, when the “g”tube comes out we will have to foot the bill for that but hopefully it will come out at the same time she is fully on solid food by mouth in which case no formula. I thank God for insurance even though ours is quite outrageous and we pay it out of pocket but it’s still less then all her medical bills, monthly bills, OT, PT, Speech, medicines, medical supplies and formula, and whatever else babies need. (Note to others the UPS guy knows us by name since we get multiple deliveries of supplies every week).

Well lets see… Lauren went for her the cleft palate board appointment this last week. It took about 5 hours to meet every specialist and every doctor but we made it through. I guess you could say we where a bit disappointed (not the doctor’s fault), this meeting has been on the books for 7 months and we had been hoping for some closure to the entire thing and it did not happen. For the plastics guy (who we meet with) to do his part of the surgery he is literally going to walk into the OR when the other doctor is finishing up removing the rest of the tumor on Lauren’s palate and decided if he will proceed right then or wait two years or so. He wants to do what’s best for her and waiting may be just that, see there is no way to tell how much palate he will have to work with until the ENT removes that part of the tumor. We meet with the ENT next week. Either way they will be aggressive about getting the trach out once the ENT is does her surgery, that will be a good thing. We have not really heard our daughters voice but for maybe 10 minutes since she was 2 months old except by the use of her passy-muir speaking valve.

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What else… she weights a bit over 17lbs and is close to 27 inches in length now, her head scar (she has many others) is looking much better and her hair will cover most of it up once it grows in. We pray to God for some normal life in the near future which may still be two years off but we are trying to pretend thats close. We are still patching her eye, now switched to every other day, different eye and for only 2 hours instead of all day. Lauren will also be getting glasses in the next week or so to try and improve her childhood eye turn before they do eye muscle surgery (forgot to mention she will be getting that surgery too). Maybe she should get glasses from Bush since he is looking for a new pair but I bet they don’t fit her.