Our night was a bit rough due to a lot of beeping across the room and many vital checks. He still seems quite sedated and in a lot of pain. He also got an epidural for whatever procedure was done, so we was not at all mobile yet. I've only heard him moan out a few words. Poor guy!
Abbi was also waking up almost every hour. Either she was moaning or rambling off some random talk. She also shot up in her bed twice, sitting up. So we are a bit tired today. Also around 2:30am Abbi's SATs just dropped. She was sitting in the mid-90's and then they just dropped down to the 70's. The monitor has this double beep (compared to the typical single beep). This one kind of says, "Get here quick, this kid is dying!!!" Except no one came! So I looked Abbi over and she was in a deep sleep and her SAT probe was on fine. So I went out to the nurses station and got someone. I guess our night nurse had turned off her oxygen completely to see how she would do. She was doing fine for quite sometime and then it just dropped. This also happened the night before. Needless to say I was pretty freaked out.
So this morning during rounds I got a better explanation of why this might be happening. It may just be that she is in a deep sleep and that will become normal for her. Its not anything like a sleep apnea, because she still continues to breathe at the same rate. This may just become normal for her for a time, or possibly forever. Even though it drops, it isn't dropping low enough that is bordering on brain damaging or anything. Regardless is definitely unnerving. So after that point I didn't sleep much, with one eye always on the monitor.
It seems like things get going around here at 7:00am (so no sleeping in allowed!). We get our final check by our night nurse at 7:00am and then breakfast comes in by 7:30am. The blood work ladies stop by. The surgery rounds stop in (although today I just heard them outside the room, they didn't come in - perhaps I scared off Slick with my morning attire?). We had a lady from Thrombosis stop in (while the blood work was being done). Then we had to take Abbi for a chest echo at 11:00am. That was an hour long. So by the time we are back its already lunch and the morning is gone!
Cardiology rounds take place between 9:00-10:30am. Really these are the ones that really determine the day. They went well. Although again, we had a slight difference of opinion. The cardiology fellow thought we could go today after they took her off the oxygen, but Lois (another cardiologist) thought tomorrow for a discharge date would be better.
So tomorrow is D-Day! Discharge Day! Hard to believe that we are almost done our stay here. I can't say we are "done" as we will never be done, but some of the hardest stuff is now behind us. I'm feeling so many things. Excitement, fatigue, a slight amount of fear (I mean there are so many things to consider in the next few weeks in regards to Abbi's care), but really I think the thing I'm most excited about...my own bed! And to have my family all sleeping under the same roof again.
So there were a few things we need to do once they left after rounds. Get her off the oxygen (after the SAT drop they put her back up to .5 litre to wean her off a bit slower), get her up and walking, and sort out all the blood thinner business.
So as a result that made our day busy. We had the discharge nurses come by and tell us everything we need to know about taking her home. We were advised to pack up our stuff tonight because they need the room first thing. We were given a medicine schedule - times to give, how much to give, and what to give. We will get our prescriptions tomorrow.
Abbi will go home on Lasix, the diuretic. I think that should stop within a few days. They just want to make sure she keeps up with her output. She will also go home on Penicillin. This really isn't heart related, but for her asplenia (Her spleen doesn't functions, so she needs to take an antibiotic daily to help her body fight infection. She was already on a similar drug, but they are now switching her to penicillin). She will also go home on a blood pressure drug. Her blood pressure has gone up, likely due to the surgery and the way they re-routed her blood. As her body adjusts to the new pathways she will likely come off of that drug. And finally she is on a blood thinner called Warafin. This is the tricky one. Thankfully we don't have to do the Enoxaparin, which is by injections twice daily in her thighs.
Warafin will be done by doing daily needle pokes in her fingers (like what diabetics do). Then we will put that droplet on a test strip and that will help us to determine what amount of blood thinner she needs that day. Hopefully before we leave tomorrow (or soon after we are discharged), we will be getting "trained" on this. Its 1 to 1.5 hours of training. That seems slightly overwhelming, but I know that we will get used to it. We will get a loaned portable monitor from the hospital that will help us test the blood. We will need to go into the lab every so often to make sure our monitor is still accurate. If she gets sick, her diet changes, she needs surgery or any sort of procedure, we will need to get her re-tested so we can change her dosage accordingly. At this point we don't have a timeline on the Warafin, but likely at least 3 months. Eventually she will switch to Aspirin to help thin her blood. She will likely be on that for life. (Again, to help prevent any blood clots from forming in the shunt that they put in during her surgery).
We also found out about her fenestration. Whew, what a word! During the Fontan, they put in a fenestration. Basically they leave a hole between the new pathway and the old one in her heart. This is kind of an "emergency exit" for her blood. If the blood pressure gets too high in there, the blood has the option to go out of the fenestration. Apparently this is quite common, possibly standard, for this surgery. So that also kind of explains her lower SATs (mid-80's on room air). The old blood and the good blood still can mix if need be. So they will likely have her come back in for a cardiac catheterization in 3 months. At that point they will determine if she no longer needs it, if its healed itself (that would be ideal), or if they need to go in and plug it. Honestly that bit is beyond me. But I guess it would just be the opposite of clearing a blockage in a heart, except this time they will create one.
Abbi got up and walking. She walked from her room to The Beach. I have pictures. Pretty exciting stuff! Abbi, her nurse Dusty, and Grandma were all walking hand in hand. She is still wobbly, but its really good to get her up. It helps to get fluid out of her lungs (which sound clear - good news), and help them to expand so she can deeper, fuller breaths. She was there for an hour this afternoon, but was getting pretty tired. She got in a hour of a nap. Dusty snuck in and tried to flush her arm IV. This disturbed Abbi so she yanked her arm, and in the process pulled out her IV. Probably quite painful, but a great way to get rid of this stuff!
Last night I also got all the bandages off her chest, and cleaned her up. She looks so much better. I also got my first glance at her incision. Longer than it was originally, but still pretty clean. Hopefully it heals like the first one, and it will probably be barely noticeable.
So tonight we are having a fairly laid back night. Rob and I are spending the night with Abbi. We've had some bubble blowing (good for the lungs), and a walk. We will all snuggle in for the American Idol finale (I'm so torn, Chris or Adam? I'm thinking it could be Chris!), then Rob will head home. It will be my last sleepness night...or at least my last sleepless night at the hospital!
Again, sorry for the picture delay. I left my camera at home, but I do have a bunch of really good ones. I will try to get them posted sometime tomorrow. I thought I would do "A Day in the Life at the Hospital." The cardiologists for rounds even let me take their picture!
Thanks for all your love and support.
The Nepper Team
Oh Holly, I DO love that you've kept your sense of humour through this whole thing.
ReplyDeleteI hope your last morning w/ Slick goes well tomorrow. :)