Tuesday, February 2, 2010

Getting There

We have two days of this crazy week under our belt and tomorrow we go in to the hospital to be admitted for at least one night and maybe two. I wouldn't say we have anything in the way of answers yet, but we are learning some things.

The reading of Collin's MRI last week seems to show some loss of volume in his brain since his last MRI in June. Interestingly, it also shows myelination, which means that his brain cells are forming the coating that makes communication between cells happen faster and more efficiently. Myelination is a very important part of brain maturation, so the fact that it is happening while his brain volume is possibly decreasing (I say possibly because the MRI has only been read by one person at this point) is a total mystery to the neurologist. She wants to do some biochemical testing to try to get at the heart of why this might be happening, which may require us to stay Thursday night as well. If we stay, they would insert a PICC line in Collin to get more accurate blood samples and would also do two lumbar punctures. Needless to say, we have a few questions before we agree to this, the most important of which is: will doing these tests actually be of benefit to Collin, or will they just teach us something that we won't be able to treat?

Today was the high resolution CT scan of Collin's lungs. The purpose was mainly to look for signs of aspiration, but also just to make sure that none of his issues are lung-related. Because it requires the patient to hold his breath and Collin isn't quite to that point yet, he had to have a breathing tube inserted as well. No one had deigned to mention any of this to me until late Friday afternoon. I had been under the impression that he was having a standard CT chest scan, which likely wouldn't even require sedation. So getting used to the idea of this much more involved procedure wasn't easy. Then we got a nurse anesthetist who evidently missed her calling as a ruthless corporate higher-up. She was condescending, rude, and didn't listen to a word I said. I refrained from eating her face off and we just had a very mild verbal tousle, but it bothered her enough that she called in backup and didn't talk to me anymore. Which I was fine with. Collin did fantastic through the procedure and we were out of there in an hour.

This afternoon, we had our consultation with the pulmonologist who will be performing one of Collin's scopes tomorrow. I was very impressed with him - he was friendly, thorough, very perceptive, and extremely detail oriented. I feel much more comfortable with the procedure tomorrow knowing he will be in the room the whole time. He also showed us Collin's CT scan from this morning and said that it looks very clear from what he can tell, although there is one spot in the right lung he will take a closer look at tomorrow. He spent a long time with us answering all of our questions and paying close attention to Collin and his breathing.

Kyle made it back up to Cincinnati tonight, which is a happy thing. We were all exhausted, though (even too exhausted to watch Lost, which is really saying something) and headed for bed to get some good rest before we start our hospital stay.

On a side note - and I know you were all on the edge of your seats about this one - Collin has evidently worked things out with his pooping issues. I changed eight dirty diapers today: 3 huge, 3 medium, and 2 small. I still feel like I smell it wherever I go.

6 comments:

  1. It seems that for every nice, helpful person you meet in the hospital, you meet a less than helpful person. I wonder if it is some cosmic balancing act. I wish I could push the cosmos out of balance for you. I am proud of you for tousseling (sp?) when necessary. I know I'd never be assertive enough. I'll be thinking about you three today!

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  2. good to hear an update, we MISS you guys!! Praying for you lots this week. give collin a cuddle for me! :-)

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  3. One of the problems I have with organized medicine is lack of communication and education for the patient and the family. Keep up the good work, Annie. Will continue to pray for you guys. Thanks for the post.

    Janet Morgan

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  4. Trying to think of a clever comment related to the 8 poops... Darn it -- nothing is coming to me!! But tons of prayers and moral support are descending on the 'Nati. Try LaRosa's pizza on focacia if you need some yummy comfort food!! =) I thank God for granting you focus and big-picture mentality for Collin.

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  5. We love and miss you guys and are continually praying for you all.

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  6. I would like said nurse's name and address.

    (Not saying anything else so that you have plausible deniability)

    Thanks!

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