Wednesday, April 15, 2009

Crazy Labs, Second Transplants, A New MID Baby

Things have been rather quiet since our central line incident. Wouldn't you know that we were headed for another round of concern.

Sam's monthly labs showed some unexpected results today. In order to explain I will have to get a little technical, so I hope I do an alright job of explaining. Each month Sam has many lab tests run that measure many things in his little body. All of his labs have been looking better each month. One thing that we watch closely is his hepatic (liver) panel. As you will remember Sam's liver was showing signs of damage that was being caused by the intralipid (Omega-6 fats) that he received as part of his nutrition. This was why we made the decision to go to Boston. We replaced the Intralipis with Omegaven (Omega-3 fats) and is what has enabled us to avoid the need for a liver transplant. Two things that we watch are:

Aspartate Aminotransferase (AST): AST is normally found in red blood cells, liver, heart, muscle tissue, pancreas, and kidneys. Low levels of AST are normally found in the blood. When body tissue or an organ such as the heart or liver is diseased or damaged, additional AST is released into the bloodstream. The amount of AST in the blood is directly related to the extent of the tissue damage.

Alanine Aminotransferase (ALT): ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart, muscles, and pancreas. ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.

When we arrived in Boston:
Sam's AST was at 98 (Normal is 10-65).
Sam's ALT was at 132 (Normal is 3-54).

When we left Boston in September:
Sam's AST was at 136.
Sam's ALT was at 132.

These numbers have slowly shifted up and down over the last few months. This isn't that abnormal, and it can take a while for these numbers to return to almost normal. For Sam the high side of normal would be perfect.

Until recently Sam's AST was averaging around 70-80. His ALT was usually right around 150. Although still elevated these were "comfortable" levels.

Today Sam's AST was at 117 and his ALT was at 370. Comparing to last months results (which they were hoping were a fluke because the number were increasing) these numbers have been steadily, and dramatically, increasing since January.

So what does this all mean? We don't know yet. Boston is looking into whether other changes in his medication and nutrition could be causing this. This would be an easy fix. Our other options, which we will not go into yet, are not such an easy fix. Sam is really teaching us to be prepared for anything I guess.

Other than that, Sam continues to look and act fine. We does not like to be confined and easily walks around the living room, or any other room for that matter, using walls, furniture, or people for support. I do not see full out walking being very far into our future. That sounds exciting, but there is that matter of his IV that is running. He is down to being connected 17 hours a day, from 8 PM to 1 PM, and we received the OK from Boston to go down to 16 hours a day - but then we got his lab results. I think we will hold off on making any more changes.


Awhile ago we posted about Emerson White. She was the little girl that had received a transplant and rejected, then Colorado tried to cut her Medicaid. As I write this tonight she will be on her way into the operating room to receive her second transplant. Her blog entry form earlier today is below:

Days on transplant waiting list: 14


The surgeon accepted an organ offer for Emerson this morning!! She’s admitted & going through the pre-op process. The team is out procuring the organs as I write - liver, bowel, pancreas, and kidneys! Surgery is estimated to begin between 10 & 12 tonight. All expect her to come out sometime tomorrow late morning.

I have a good feeling about this! It’s Daddy’s birthday today – a great day for a transplant!!!

Check back often for updates through the night. (I won’t send e-mail notification with each one.)

Many prayers & heartfelt appreciation for the donor family on this very difficult day. Thank you for giving the gift of life. Thank you for giving my baby a chance…


In other news we were contacted this week by a family in Canada who's 4 week old son, Hunter, was just diagnosed with Microvillus Inclusion Disease. Hopefully we can share part of what we have been through the last year with them and our experiences can give them hope for their son. Since Hunter is in Canada they were able to start Omegaven right away which will hopefully help his liver stay healthy. I can barely remember the range of emotions we went through a year ago and relived them a little when we read their story.


That's it for tonight, we will post again as we come up with some answers to our latest adventure.

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