Coen Medical Update, 2/3/2009

There is so much to write here and I need to block off time to write the entire story. But, since computer time is limited here (we're in the hospital, day 8), I'm going to post two emails that Tauni has sent to our families while we've been here. For posterity.
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Tauni email, 2/3/2009 (after the 2nd surgery):

Family and Friends...

Just wanted to send out a quick email to update you on Coen. He came out of his almost 3 hour surgery great today and seemed to remember the post-op nurse from his surgery last week because he let her hold him and cuddle him until they let us in. I was so happy to not see him crying. He is all hooked up again to IV and epidural and a catheter (which he hates and I can't blame him!) so it is really tough to hold him. He is resting but not sleeping and was just given some more medicine for his spasms. We hope that the pain will be less this time around since they did not re-slice the muscles. He keeps telling me his leg is hurting and cries from time to time. We try to console him with rocking in the rocker and laying next to him in his bed.

The doctor came and talked to us after and said that they cut into the pelvis about a 1/4 of an inch and removed all the bone. He said some of it was grainy and they hope this is the nest of the tumor. They removed about as much bone as they possibly can without having long lasting damage. They will send it to pathology and see if it is the nest. They said they will also just have to see how much pain he is in once the epidural is removed in 2 days. If he is in a ton of pain like before then it means the nest is still in the bone (or part of it anyway). I asked what they would do at that point and the doctor just said "lets cross that bridge at the time". I don't even really want to think about that right now. For now, I just hope they got it all.

Coen has had a cough for a few week which got much worse after his first surgery. They gave him a breathing treatment last night to prepare him for surgery since going under with any type of cold makes the risks greater. While he was under the anesthesiologist suctioned out his lungs and said there was quite a bit of junk in there. She said he either has some pneumonia or bronchitis and he is on an antibiotic for that right now. It is making me very concerned for Baby Ella as she has developed quite a cough since being here. I will take her to the doctor as soon as we get back to Austin and I have asked the nurses to listen to her from time to time.

It kills me to see Coen back attached to all the tubes, the epidural and just feeling all the pain of a major surgery again but I just keep telling myself that in the long run he will feel a million times better. It is crazy to think that in a month or so Coen could actually feel pretty pain free... he just doesn't even know life without pain. I just visualize him running around and jumping on the trampoline with his best friend Ellery and that keeps me going!

Thank-you for all your thoughts and prayers and fasts! I want you all to know that life here got a lot better late Saturday night and was much better Sunday. Coen was feeling much better and I know that it was because of the faith of so many around the world praying for him. I really felt the blessings of those prayers the last few days and I am so grateful!!!

Love Tauni

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Tauni email, 1/30/2009 (after the 1st surgery):

Everybody, here's the quick update about Coen:

For those of you who did not know, we are in the hospital with Coen in Dallas and have been here since Monday. We came for a routine MRI of his hip and appointments but ended up in surgery the next day removing a benign tumor from his hip. They finally have found the answer to all Coen's pain!!! This is an extremely rare tumor and even more rare to have it at his age and in the hip. It is also an extremely painful tumor as it sends out sharp and relentless pain into the area it is located. To add to that, this tumor had grown bone into Coen's hip joint that was rubbing and smashing bone on bone into his hip. This is why walking was so painful for him. They say it is a miracle he even walked at all with all this pain.

They went into surgery thinking that it was a different kind of growth but once inside the hip (they had to make a 6 inch incision into his leg and completely remove the leg from the hip joint), they realize that it was this very rare type of tumor. They removed the bone growth and cut deep into the top of his hipbone.

Coen had a good first day and night because he had an epidural in his spine for the pain but once they removed that, the pain was unbearable for him. Yesterday and last night was truly hell for him as he cried and had to be held the entire day and night. At almost 4 am after almost 20 hours of crying and horrible pain, they gave him some very strong medicine and he was able to get 3 hours of sleep before he woke again with another spasm. During the surgery they cut slits into 3 main muscles to try and lengthened them as they are so contracted from not being able to use his leg for his whole life. These cut muscles spasm severely because they are irritated. He is also dealing with the spasms that he has always had. Even with full Valium they are unable to keep these spasm under control and therefore Coen just has to endure.

When the doctor came to see Coen this morning (his doctor is one of the best pediatric orthopedic doctors in the nation and the Chief of Staff here at this hospital so we are very lucky). I told him that Coen had been in unbearable pain throughout the night. He then delivered us some bad news... The pathology report came back that the bone they removed during Coen's surgery was "normal bone". This just means that they did not get the "nidus" or nest/source of the issue. In other words, the problem bone goes deeper into his pelvis and the piece poking through the hip joint was just part of the outgrowth. Seeing as when they went in for the surgery they were looking for something else (something very similar but different), I suppose it isn't too surprising that they didn't get the nidus.

This morning (after the pathology report), they reviewed the MRI pictures from Monday again (there are 500+ and this nidus is the size of the top of a ballpoint pin tip). They were able to locate the nidus on these images. We then went back in for further CT images and they had three radiologists check to make sure they found it. Coen was fortunately asleep on the table as Jayd stood next to him with his hands on his chest and head to make sure he was still. He had one of the lead cover-ups on, but said there is a good chance that he is either sterile or the next Hulk from the radiation.

We then talked to the Chief of Staff again in the afternoon and they scheduled surgery for next Tuesday. Basically the exact surgery again but this time cutting even deeper into his pelvis bone. He said that if they do not get this source of the tumor out then it would always cause him great pain and eventually grow back. So, we're likely here in the hospital until next Friday at least.

I have to say that I find it amazing that throughout Coen's time in the NICU we were able to stay in the hospital with him and now through all of his time here, we can stay with him as well. And all for free. It's incredible and wonderful to be right here with him to help him deal with all the pain and try to give him comfort.

By this time next week we should be headed home with the disease out of Coen's hip and a huge light at the end of the tunnel. In the meantime, we push poor Coen through some serious pain. Day by day... that is all I can focus on right now. Fortunately, Ella has been a little dream this entire time (although I hate having my 7 week old a hospital for almost 2 weeks).

Thank-you for all the prayers that have been offered on behalf of Coen. Please continue as this surgery on Tuesday is very serious and scary.

Tauni

FYI - In one report online from 2008, it said that only 13 cases of this condition (Osteoid Osteoma in the acetabulum) have ever been reported. The Chief of Staff here has not seen it in his 30 years. He thinks Coen perhaps is the only case every of this condition in this location at his young age. Crazy!!!!