Here's an e-mail I sent to our family on January 7th that fills you in on what's happening with Lenwood. I'll update you with more recent developments at the end. I apologize for the copy and paste, but it's just all that I have in me right now.
January 7, 2011
Just wanted to update the family on Mr. L's appt with the BIG dr. yesterday. This is the dr. we've been trying to get an appt with since the last few weeks of his NICU stay. She saw us and now she wants to hang on to us.
I was so hopeful that 2011 would be much less dramatic for us (or medically for my children), but it seems like the roller coaster ride is going to last a bit longer. We saw a world renowned pediatric nephrologist yesterday. She's also a geneticist and microbiologist.
Yep - just knowing a world-renowned doctor has taken on and is excited about my child's case is scary enough.
Here's the deal: Lenwood has extremely high levels of protein, calcium, and phosphorus in his urine. This means there is a problem with his kidneys as these things should be staying in the blood not leaving through the urine. They think that he has two problems. Let me try to explain: The kidneys are made up of anywhere from 300,000 to a million nephrons. Each nephron has a filter and a tube. They believe the filters (protein leakage) and the tubing (calcium and phosphorus leakage) are both functioning incorrectly. In addition, it appears he know has high blood pressure due to this which can be troublesome for the kidneys, heart, and other organs. She believes he has a specific genetic abnormality that causes this. He would be the 6th diagnosed case in the world if this is what he has. It is obviously newly discovered and we don't know much about it or what it will mean for him. So, we remain in limbo for a while, a worrisome, fearful limbo.
As for the blood pressure, she wants us to start him on medication. However, we are reluctant to start if it is not necessary. They checked his pressure multiple times while we were there and with multiple machines. Additionally, he was hungry, overtired, and upset after some traumatic labwork. We have an appt with his regular nephrologist Monday so we are going to have it checked again to see if his pressure remains high. His top number for his BP is supposed to be about 105. His was 121-137 during the many times his BP was checked.
We were very impressed with Dr. Guay-Woodford. She's extremely knowledgeable and was also very good at explaining what's happening with Lenwood to us. Here's a link with some info about her if interested:
http://main.uab.edu/Sites/MediaRelations/articles/60185/
We are very grateful that someone has taken an interest in Lenwood's case. She also is hopeful that once she determines Lenwood's diagnosis she will be able to connect his and Teague's ascietes (swollen abdoemen they were born with). This would certainly be an answer to a prayer. We don't care so much about giving it name. We just want to know that the ascietes was the thing and it's over with and know that the ascietes was not a symptom of a thing that will rear it's ugly head later in our sweet boys' lives.
Before Lenwood was born, I'd never heard the word nephrology or knew that such a complicated system even existed in our bodies. The neonatologist confessed to me that he hated nephrology and was so glad there were specialists because it is so complicated. And that was coming from Dr. Bruce, who Guy and I both think is a brilliant Dr. He was a miracle worker for all three of our boys!
Here's the more recent stuff: Due to the snowstorm we were delayed in seeing Lenwood's regular nephrologist, Dr. Benfield, until this past Thursday. We had some good news at Dr. Benfield's. in an effort to see if Lenwood's kidney issues are related to his and Teague's ascietes, they ran tests to see if Teague's urine had high levels of calcium, phosphorus, or protein. Teague's urine is 100% normal. So the good news is Teague appears to have healthy, normal functioning kidneys. That leads us to believe the ascietes aren't related to the kidney issues Lenwood is having so we're still left with the lingering question about the ascietes and if it will mean anything in the future
The other piece of good news: Dr. Benfield did an ultrasound on Lenwood's kidneys. In previous ultrasounds (as recent as December 15th) Lenwood's left kidney was enlarged. At this visit it was normal. This is good news as being enlarged caused his kidneys to have to work harder.
So, for the rest of the news. The question we didn't think to ask when we saw Dr. Guay-Woodford was an important one. I guess we were a little surprised and shocked and trying to absorb it all. We forgot to ask:
"What does this mean for Lenwood? How will this affect his life?" We had a chance to ask Dr. Benfield these questions. He believes that Lenwood's problems with his nephrons are either genetic or developmental. Genetic would be a genetic abnormality like Dr. Guy-Woodford suspects in might be. Developmental would be where something happened during development in the womb or NICUnephrons to develop incorrectly. Developmental would be a little better than genetic. This is how Dr. Benfield explaining what this means to Lenwood: All of us are born with waaaaaaaay more kidney tissue than we need. Most people actually suffer some sort of damage to their kidneys during their life and never know it because the extra tissue picks up the work for the damaged tissues. So, we all have a lot of "kidney reserve." In cases like Lenwood, one worries that he will run out of reserve. When and if that time comes, Lenwood will need a kidney transplant. He did say that there will be a lot of clues/symptoms before he needs a transplant and plenty of time to prepare.
Please pray that Lenwood's kidneys will heal and he will not need a transplant. I don't know if healing is even an option, but Dr. B was really surprised they were no longer enlarged so let's just go ahead and pray for the miracle.
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| Hanging out with Daddy |
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| Helping Mommy with the laundry. And no, I'm not trying to make a fashion statement. I just hadn't taken his sleep sack off yet. He'd just woken from a nap. | |
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