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 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.***

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]

I just wanted to drop ya all a line and wish you a Merry Christmas from the Duke ER. We got here just before midnight on Christmas Eve, Lauren’s heart rate has been around 180 and has hit above the 200’s, she has a fever around 101, and is really fussy. The ER is not busy right now, which is good for us. They still took her back immediately from the front of the ER since she is considered immune suppressed. We just had a x-ray done and they are doing a quick catheter to get a sample of her urine. More updates to come.

Lauren came home Sunday afternoon and all is going well so far. We have follow up appointments in the next few weeks.

Lauren is out of surgery and has been moved to the 5300 wing at Duke Medical Center. She came through the surgery fine but they are pretty sure they did not get all the tumor. They had to remove the whole left side of her soft palate as well as her left tonsil as the tumor was into the muscle. Repairing the palate is now going to be very difficult. It is probably going to be quite a while before it can be done and will require a graft from either her face or her arm. It will take at least a week before we get the biopsy back to confirm that we are still dealing with a benign teratoma. The Dr. said in about three months they will do another MRI to see if there is any tumor that they were unable to reach through her mouth. If there is still tumor they will have to go through her face and neck to get to it. The Dr. also still thinks that the tumor has grown so we will see what the future scans bring. It has been a long, stressful day. We have been at Duke since 6:45AM. This all means more surgeries, more scans, more questions, and more time, not just months but likely years.

If you try to call us tonight or over the next few days please do not take offense if we do not answer. We do realize God is still in control of this thing, but we are in need of some time to regroup as parents.

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.