I know. I know. You've been wondering what the heck is going on with our lives. Well, like I've said before, if I'm quiet for a while, we're busy living life.
We've had some 'issues' with things (not related to Manny) that have distracted me from the blog. (Understatement.)
Now trying to summarize ...
Manny has been out of the hospital (except for the two days where we had a false positive) since February 27. Can you believe it? And as of tomorrow, May 7th, he will have had his broviac (central line) for 3 months without a line infection. That is HUGE too.
Now on to the not so good news. His labs are causing concern as is his abdominal pain over the liver area. It appears he's headed into liver distress/failure. Last week I was very concerned about his labs. But this week was worse.
Every Monday he has his blood drawn. Every Friday I get a copy of those. This Friday, they arrived about 3:30 pm and I immediately went into grave concern. I'd had them about 5 minutes (while I talked and prayed with Dan about them) when the home health nurse agency called and said the doctor was also very concerned and wanted a STAT CBC.
What is going on? His white blood cells tanked. His red blood cells, hemoglobin and hematocrit are at dangerously low levels (some doctors would transfuse at these levels). They didn't want to wait until Monday's labs to see. If the new labs were the same or worse, they would hospitalize him.
So Friday night, the nurse came by to do the blood draw (during a church meeting where we had about 15 people in our home nonetheless). Saturday morning, the labs were back. Each value was SLIGHTLY better. Enough to let us stay out of the hospital. (Phew!)
Meanwhile, he has some other concerning labs too. All related to the liver. Liver enzymes have greatly increased in the past 2 weeks. Liver function is also being affected. Why? TPN is very toxic on the liver. There have been adults that have been on TPN for a lifetime, but kid's livers aren't fully developed yet and they are more susceptible to the toxic effects.
Even so, some kids can be on it for years with no real effects. Manny was on it only 3 months before his gallbladder died. Now the bullseye is on the liver.
He also has periodic pain in the area of the liver.
All not good signs.
What can be done about it? If he could get off TPN, this would all be over. Effects tend to reverse themselves when the TPN stops. But in his case, we haven't found a suitable alternative yet.
Some kids have liver transplants. Or even entire bowel/intenstine transplants. Manny is not a candidate for this we are told.
You can live without the gallbladder. You cannot live without the liver.
Other options? Boston Children's hospital has a motility clinic that MIGHT be able to help restore his ability to eat. (We're told if ANYONE can, it's them.) Secondly, they might be able to help with an alternative to one of the components of the TPN. Lipids are what "eat" the liver. They are one of the few hospitals in the country that can prescribe this lipid alternative. That might be an option for us.
Therefore, last week I contacted them. They told me what they needed to be registered. I got right on that. We certainly need a bit of favor as they are booking appointment 3-6 months from now... BUT ... they can expedite if necessary. At this rate (if you're doing the math like I am), we don't have 6 months to wait. He's teetering NOW.
Any other concerns? Yes. The past two days he's had a low grade fever again. (We have to get a blood culture at 100.4 and he's been between 100.1-3.) He's also just "off" again. And finally, he's starting to dig at his broviac site and saying "Owie" during these past 2 days too. It actually got bad enough that he pulled the bandages off today at the park. (Oh my he has wandering hands and he is persistent when something is not right.) So I had to do a quick dressing change. I was expecting to see some type of issue with the skin ... but there was NOTHING wrong with the skin. Ugh. So if he's pulling at the line and complaining about "owie", then it makes me wonder if there's something wrong INSIDE the line. (Often a sign of an issue.)
So where does this leave us? Where we have always been ... needing MAJOR Divine intervention immediately.