Wednesday, June 9, 2010

Day 3 APH

So, after a long and eventful day. We still kind of didn't get far. We do know she has no clots in her neck or surrounding veins which is good. Functionally her heart looks good right now. Apparently the clot is smaller than then they expected however still of significant enough size to be officially partially blocking her SVC as we expected. The clot looks like it is embedded in the tip of her broviac and that is why we were having the issues with it. Hematology is sitting on all of this for the time being and waiting until all her testing comes back to decide what to do. The consensus is she will probably need to be started on some form of a daily maintenance blood thinner like Lovenox injections. But we will address that more later. And if one more Dr. tell me how we really need to think hard about getting her off of TPN I'm going to scream! Like they think we have just thought it would be a fun idea to leave her on it for over a year. Ummmm NO, it's a total PIA and one I would LOVE to be without but am grateful for because without it Riley wouldn't be alive right now.
So the plan for today was to TPA the line and see if that would clear it enough to get blood return. After two doses and letting the second one dwell for 2hrs. still nothing BUT it flushes great still....
From ID's standpoint given that her fevers have resolved they are happy. So, this most likely means there is no infection thank god! I think her autonomic issues were just out of control when we were using the line and it caused the temperature elevations. Now we just have to convince cardiology of this! They are not sold on it... We still need to do her IVIG at some point too since it was due today.

I was out at the back nurses station talking to one of the GI's, since they are all like family to us, and this is her first ever admission not to have them taking care of her. The hospitalist saw me and said ohh good I wanted to talk to you and told the GI she had a question for her too. She actually asked her, "can she be sent home and run her TPN through the line even with the clot?". What!!!! SERIOUSLY? I was not happy at that point and as we are walking back to the room she tells me she was thinking if the TPA didn't work(it was dwelling at this point) she would run the IVIG tomorrow and then send us home! I was like NO, we can't go home with a halfway functioning line and this clot has to be dealt with! So, once I talked some sense into her she is going to try to get ID to convince cardio she doesn't have an infection and see if they can to the angiogram to remove it. So we shall see how that goes tomorrow. But I'm not leaving here without a fully working line or risking loosing this one completely if it can be saved...
The other issue is her swelling and elevated BP's. I brought it up to her yesterday and this am she had thought they were fine but I told her about how they were elevated all day and she was mad no one called her. She ordered Riley's renal ultrasound for in the morning since it was time for it anyway. Of course the nephro I don't like is on call this week so maybe we can wait til Friday and see if her Nephrologist is on then. She is wonderful and will take care of this issue for us. I also happened to run into her Pulmonoligist later who is another very close "friend" of ours. Riley hasn't been able to follow up with him in forever due to her constantly being in the hospital. I told him how she was still on her caffeine and how her hypoventilation seems to have gotten and gets bad when she's sick or to fatigued. He said he would stop by for an official visit tomorrow. We mine as well get everything done at once, less appointments later for me!
The only other thing of note today was her CPK level came back elevated quite a bit. Everyone is kind of scratching there heads about this one. She was just kind of pale and really tired all day but overall in good spirits. I'm assuming it was from everything yesterday. They called to tell the hospitalist the TPA didn't work and they said we'll deal with it tomorrow. So for now Riley just fell asleep and Wil and Liam went home for the night because Liam really wanted to sleep at home for a night. For tonight we are tired but can't ask for more. It's just like I told Liam the other night when he was crying to go home and sleep in his bed, but he wanted me and sissy there too. It doesn't matter where you are home is where your family is whether that's in a tiny hospital room, at the RMH, or at your house. As long as we have each other we will make it through this!
Here are some pictures of the kids from the last few days:

Liam sleeping after his surgery on Friday

Playing on the bed yesterday morning

You can see how puffy her face is in this one

I love how she just sits there like a big girl

with her legs crossed

Getting our 2hr Echo, I was desperate to find

anything to entertain her!

In the PICU right after getting her Femoral line

Completely Snowed....

1 comment:

Jessica said...

I've been a little behind on my blogs, so I just caught up on all your "business" :( SO sorry to hear about the clot!

About a year and a half ago we found out that Eithene has clots (that are now permanent) in both of her subclavians- completely blocking the flow from both veins. THis has cost her most of her central access, and is part of what causes Eithene's face and upper body to retain fluid so badly (the rest is capillary leak and autonomic dysfunction... we think).

To prevent more clots we give her Lovenox shots twice a day. Fun times! Let me know if you have any questions about it- we've been doing them for over a year now.

And just a fun "your kid/my kid" moment- it was during the episode that we found those clots that E had her last femoral line placed- and we had to give her a whopping dose of ketamine to get it done... and she kept trying to wake up through it.... ahh, memories. :)

I hope you can get the clot dealt with easily!