Our first night out of ICU was fairly unevenful. Except at 2am. He woke up choking pretty horribly and when I ran over to suction him out, he was covered in poop and burning up!~ (Makes me wonder when the nurse had last checked him.)
9am, infectious diseases doc gave me the news. His blood cultures had been "yeast free" for several days. BUT the last two are now positive again.
What does that mean? Between the positive tests and the fevers ... means we have a new infection. The old one was cleared and now we have a whole new one. We're starting over.
On Dec 1, he had a low grade fever, and then ended up with blood cultures.
We are at square again ... except this time, he's weak.
There are a couple of common locations for this infection to settle but based on hints, they are going to check his heart with echo, an ultrasound of his liver/gallbladder/spleen, etc. and likely a bone marrow biopsy.
They are also going to pull his central vein line(CVL) (it's the "IV" like thing he has in his upper groin). It's a possible source of infection. As I type this, the docs are having a pow-wow about which type of line to reinsert. (There's some debate among them about the risk/benefits of each line.)
8:30 Monday night: The ultrasound of the liver, etc was done as was the echo of the heart (awaiting test results but don't think that's the problem).
The CVL line was not pulled today. Why? The docs couldn't decide on which type of line to replace it with. Everything is a risk/benefit. They had a pow-wow on what to do. I should know in the morning.
Manny is still feeling a bit perky. He's happy and hanging in there. But I could definitely tell he's starting to decline again.
The good news? The nurse for the day LOVES us and she passed on a great report to the night nurse. I think she is going to take good care of us! I think I can sleep a little more peacefully tonight knowing someone is "standing guard" again.
Me? Today when I got the news of the new infection, my heart sank. Ever heard the term "heart sick?" Today I felt it. I am weary. Manny has been terrorized. I thought it was virtually over and that we were going to be on the mend from here. So it was like a rug being pulled from me to know we are right back where we started. I am shell shocked and numb. Putting one foot in front of the other. And I'm finding it "heavy" to breathe.
I've never lost faith or hope. But it doesn't mean we don't have scars. I look at all the holes and scars on Manny's body. (Some are still fresh, open wounds.) And if we could only see emotional scars, I think we'd all be completely covered in just the same way.
Many people got the news that Manny was starting to improve and have now moved on to new things. But the truth is ... he is needing the prayers now just as much as he was last week. So please hang in there with us for the long haul!
Housekeeping items:
1) Yes, you can still contribute to the ipad ... goredan@hotmail.com if you want to paypal it. (The total price is still not covered yet.)
2) We still want people to send pics of people who are praying for Manny. You can send them to goredan@hotmail.com too. I'm filling the wall with them!
3) Some people were wanting the address for the hospital again for cards and gifts, so here goes
St Joseph Children's Hospital
Manuel Gore
3001 W Martin Luther King Jr Blvd
Tampa, FL 33607
I swear Beth . . we are walking such a similar path. I wrote those same words today in a blog that I couldn't post, but I have never lost faith and hope. *sigh* I have been thinking about you most of today . . and of Manny. Holding you close in heart, thought and prayer.
ReplyDeleteI am here praying,feeling,hoping.......I want to say something that will give you what you need-butI know that is impossible for what you need is not in any of our control. It is funny that we all want to let you know how amazing you are, how strong you are, how you inspire us to be better people. I am betting that when you hear that, it's the last thing you want. I am guessing you would rather not be known to us in this way. I am guessing you feel less than amazing,less than brave, less than inspirational because the one thing you want is not something you can accomplish-and that sucks, it really really does. I am guessing you would like to bundle Manny up, head out the door go home and never look back-I know that's what I would want. I would want to live with my family and surround myself with all that is good,happy and right. I am guessing that it is getting harder and harder to listen to what they think, what they want and know that sometimes,they are not right,they are not listening to what needs to be done,they are forgetting to think outside the box,to realize that they need to step back look at the big picture and follow their gut on what should be done now....it must be so hard to not scream. I am guessing you do not let yourself give in to melting down, I am guessing because if you do, it would be very hard to reverse those emotions. But you know what-it's o.k., you have permission to loose it, you have permission to feel whatever you want to, or need to. There is no right or wrong way to feel or act. I pray for peace and comfort, I pray for that horrible feeling in the pit of your stomach to go away. I pray for the tightness in your chest,the heaviness of your lungs,the pain your very soul is enduring to ease. I pray that you know what a gift you are to Manny and all your kids. I pray for you.
ReplyDeleteWithout ceasing, my dear friend. XXXOOO. Sending so much love from Colorado. -Holly
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