Another great night. Well, for Xander anyhow. I didn't get much rest because I was having to kick all these people out of the room.
I seriously don't understand how patients are supposed to get better if they don't let them get a full night's sleep. First there's the nurse, who comes in to check his vitals every four hours. Then a guy from pulmonary who comes every four hours too but not exactly when the nurse comes. He comes to tap on Xander's chest for a few minutes. When Xander had the pleural effusion, they worried his lung might collapse. Now that they have his effusion under control with diuretics and the fact that Xander's respiration rate is looking good, I think every four hours is a little much if we need him at all. Then there is the phlebotomist who comes to draw blood around midnight. Gees! I refused all their services last night. I wanted him to have a good night's sleep. He's been on this crappy schedule for days now.
Praying for a quiet day. Maybe we can get Xander out for a little bit. I wish we could go outside but I won't push it. Just around the ward would be nice. Oooo, dare I hope they might let him come to the cafeteria with us???
October 3 - 7:51pm
Ron is a match! However, they want to be sure. So on Monday both Xander and Ron will have another round of blood test for tissue typing. They are going to biopsy Ron's liver on Monday too. They want to check to make sure it's not too fatty because his cholesterol is a little high. I'm sure it will be fine. Ron's never been fat a day in his life.
So just these two last tests and then it's transplant time. Still can't believe it's happening to us.
Nighty night.
xxxooo
So just these two last tests and then it's transplant time. Still can't believe it's happening to us.
Nighty night.
xxxooo
12:13pm
Great news! Xander is doing better. Check out his x-rays. This one is yesterday's. You can see how his right lung is cloudy. (He's facing you, so his right lung is on the left side of the photo.) If you look close, you can see his lung (dark in the middle). If you look along the side to the left side of the photo...everything outside of the darkness is fluid. Bad fluid.
Now look! These are today's x-rays. They are so great!! Nice and clear.
The docs are working their magic. They think he's doing so well they are kicking us out of the PICU and sending us back down to the floor. Yay!!!
Ron is still in the MRI. Looks like we really won't know until next week. Bummer. Another weekend of waiting.
Here's some pics in the meantime. Finally! Some of me and my little, yellow guy.
I just love him!
Now look! These are today's x-rays. They are so great!! Nice and clear.
The docs are working their magic. They think he's doing so well they are kicking us out of the PICU and sending us back down to the floor. Yay!!!
Ron is still in the MRI. Looks like we really won't know until next week. Bummer. Another weekend of waiting.
Here's some pics in the meantime. Finally! Some of me and my little, yellow guy.
I just love him!
October 2 - 7:25pm
Nothing new tonight. Thank goodness! I wanted to post some pics from today but I am just too tired.
Good night.
xxxooo
Good night.
xxxooo
12:47pm
Ron just got back from his appt's this morning. It's looking good! It's not definitive yet. They still need to do an MRI tomorrow to take a closer look. We will know for sure then.
I walked into the PICU this morning and Xander was looking great. He was up and playing and giggling. It was so good to see him back. He'd been lethargic for the past few days. The docs are amazed at how well he is doing considering how sick he is. That's my boy!
I met with the surgeon today. He said they had already gotten a couple of calls but that the livers weren't perfect. He says he's holding out for that perfect one. Yes, me too. It's called Daddy's liver.
I walked into the PICU this morning and Xander was looking great. He was up and playing and giggling. It was so good to see him back. He'd been lethargic for the past few days. The docs are amazed at how well he is doing considering how sick he is. That's my boy!
I met with the surgeon today. He said they had already gotten a couple of calls but that the livers weren't perfect. He says he's holding out for that perfect one. Yes, me too. It's called Daddy's liver.
October 1 - 4:28pm
I'm at my Mom's for the night. We need laundry done and I need to see Lincoln. I miss him. He'll be home very soon. I can't wait!
Just got off the phone with the transplant office manager about Ron. No word yet but we should definitely know tomorrow.
Please pray as hard as you can for Ron to be a match.
Just got off the phone with the transplant office manager about Ron. No word yet but we should definitely know tomorrow.
Please pray as hard as you can for Ron to be a match.
Pics from the hospital
Here's some pics I quickly pulled from my camera.
Monitoring his respiratory rate, heart rate, and oxygen saturation.
The bottle with the white liquid is lipids, the bag with the cream liquid in it is his formula and the other bag in back is saline.
He's so tired but came up with a sweet smile.
Today.
They have to be extra careful if they do anything that might make him bleed (draw blood, put in IV, etc...). He's a bleeder right now.
Monitoring his respiratory rate, heart rate, and oxygen saturation.
The bottle with the white liquid is lipids, the bag with the cream liquid in it is his formula and the other bag in back is saline.
He's so tired but came up with a sweet smile.
They thought he might have c diff again. So if any hospital worker came near him they had to wear gloves and a gown.
Hallway to where he is.
Immediately after the tap. You can see the bandage under his armpit. That's oxygen they are giving him.
The fluid from the tap.
Today.
1:00pm
Well, there is some fluid back in his chest but not as much as before. I forget what it's called...sympathetic something or other. It's the body's response to what's happening with his liver. An incorrect response but a response nonetheless. Anyway, they are going to try some meds to see if some of the fluid will come out before they tap him again or put a drain in. The transplant team isn't too keen on a drain for infection reasons.
I was hoping we'd go back to the floor today but with his respiratory distress, I don't think he'll be leaving the PICU any time soon.
Still no word on Ron's live donor status.
I was hoping we'd go back to the floor today but with his respiratory distress, I don't think he'll be leaving the PICU any time soon.
Still no word on Ron's live donor status.
7:42am
Wow. It's already October?
Not much happening. It was a quiet night. Ron and I, for the first time ever, left Xander at the hospital by himself. The docs convinced us to get some sleep. Once I was asleep, I was fine but I sure was experiencing lots of seperation anxiety.
Let's hope he gets out of the PICU today and back to the floor.
Not much happening. It was a quiet night. Ron and I, for the first time ever, left Xander at the hospital by himself. The docs convinced us to get some sleep. Once I was asleep, I was fine but I sure was experiencing lots of seperation anxiety.
Let's hope he gets out of the PICU today and back to the floor.
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