There's No Place Like Home

I'm sorry that I didn't update sooner but it's been quite hectic, as you can imagine. We've had a lot of ups and downs but the good news is that WE ARE HOME!!!

We got home yesterday (Saturday) late afternoon. After a lot of rest, a proper bath and getting her hair washed, Jessica is feeling more like herself.... the same goes for me, too. It sure can wear a person out being in the PICU for 5 days.

The Procainamide is doing a pretty good job of preventing Jessica's PVCs. There are times that she has a run of PVCs that are uncomfortable but most of the time she is PVC-free! On Saturday morning she kept looking at the monitor and saying, "Look mom! Zero PVCs!" There have been times that her heart beat has gone into trigeminy (every third heartbeat is a PVC) but it's not nearly as often as it was when we first were admitted to the hospital. Back then she was in trigenimy at least as often as she was in sinus rhythm.

It has been a pain trying to find a pharmacy that carries Procainamide in town. We finally had to have the hospital pharmacy fill a 4-day supply until our pharmacy could get it in. Just when we thought we didn't have to worry about filling the prescription, our pharmacy called and told us that they can't even order it - apparently their supplier doesn't handle that particular medication. So... I had to call around and find another pharmacy who can order it. I finally found a pharmacy who says they can get it in by tomorrow but we'll see what happens when I call and see if the script has been filled. If all else fails, we could get the prescription through the hospital out-patient pharmacy - except that they don't accept our insurance! I had to pay cash for the 4-day supply of Procainamide. I just can't believe that it's been such a mess trying to get the medication. At first the out-patient pharmacy at the hospital tried telling me that they were out of the meds. I told them that my daughter has been in the PICU all week receiving that medication and that we had called all around town trying to find it and that NOBODY had it. There's no way we were going to keep her in the hospital all weekend just to find the medicine and we weren't just about to take her home without it and let her PVCs get up to 10,000 a day again. So.... the pharmacist went downstairs and talked to the in-patient pharmacist and finally got me a 4-day supply.

I was asking my mom a rhetorical question: "Why can't just one thing go smoothly for us? .... Oh yeah... then it wouldn't be us!" lol

Speaking of my mom, please keep her in your prayers. She just had her 2nd knee replacement surgery yesterday and so far she is doing well. I believe she is going home from the hospital tomorrow. I hope her recovery goes well. She is very determined, just like last time, to do her physical therapy and exercises to help her knee recover from the surgery as quickly as possible. Go Mom!

Also, one more prayer request: My blogger friend, Jenny, has a young daughter, Lindley, who is having open heart surgery on Oct 2nd. The family has to travel to another city for the surgery and of course it's going to be difficult on everyone involved.... including the 3 toddlers! The daughter who is undergoing the surgery is a toddler twin and has a younger brother. Jenny calls them the toddler trio. They are very cute - and BUSY! hehe... I love Jenny's humor and I also love her caring support. So please keep them all in your prayers this week. I hope that Jenny will be able to update her blog so that we will know how Lindley is doing.

I am guarded about Jessica's health right now. She has been very tired the last few days and this can be a side-effect from the Procainamide... but it could also be from not getting enough sleep at the hospital. You know how it goes... you get woken up all the time whether it's on purpose or not. One moron rode his floor cleaning machine into our room while Jess and I were taking a nap. Jessica's door was closed for a reason! gggrrr.... Then there's the monitors going off for no reason and the sounds from other patient's rooms, etc. I'm really hoping that's why Jess has been so tired the last couple of days. I'll have to keep an eye on it and just wait and see.

I do have to hand it to the nurses, techs and doctors who cared for us in the PICU. They were amazing and very kind. They actually listened to me and followed my lead as to when Jessica's meds were due, what her O2 sats are usually, and they even joked about hiring me on as a nurse since I am so knowledgeable about Jessica's medical stuff. Karl asked if they could give me an honorary degree and I said that I should get one in "JESSICA". LOL! One thing that surprised me was how low Jessica's oxygen gets when doing very little activity. Every time I helped Jess to the bathroom - which was less than 10 feet away from her bed, her pulse-ox would be below 60% (usually 55 - 58% and once even 54%) when I got her back into bed. It makes me wonder how low she is at home when she walks around the house and is gasping for air. We only do spot checks with the pulse-ox at home so I didn't know that she was dropping that low that often. Our doctors don't want us to be so concerned about the numbers on the monitors that we miss out on enjoying what we can with Jess. I completely agree with that and that's why I don't check the pulse-ox too often. But it is dis-heartening that her oxygen sats get so low so easily. Another sign that her heart disease is progressing. And Doctor Tammy, if you read this, I am still holding your responsible for us not leaving the hospital until Saturday AFTERNOON, eventhough it was the pharmacy's fault! LOL! (I'm just joking!) Dr. Tammy is a resident who cared for us and she said that she would take full responsibility if we didn't get out of the hospital quickly when Jessica asked her what time we could go home on Saturday. We would have left by 12:30 or 1:00 but as I mentioned earlier, we had to try to find the meds and that took some time. Jessica had me give her blog addy to Dr. Tammy and a couple of nurses. I told them that from Jessica's blog they could find a link to mine where I include a lot more details about Jess and even my review of their performance for all the world to see. Dr. Tammy joked about reading here about how it was her fault that we didn't get home earlier. So see? It's actually YOUR fault, Dr. Tammy, that I wrote it. neener-neener.

I truly appreciate all the messages of support. It's amazing how many of you wonderful people are pulling for us. And Mary, I LAUGH at your comment: "I have never met anyone as "together" as Nancy is. " I most definitely deny it! hehe! But hey... I appreciate the prayer request for Jess and myself on your blog. You are so sweet - and apparently easily fooled.

I started this post at 9:46pm and it's now 3:11am. No, I don't type that slow... I have had a bazillion interruptions. It's frustrating to try to write down my thoughts (what few I have) and then get interrupted and have to come back and get back on track. I think I shall head off to bed. I don't want to pass out from exhaustion and drool on my keyboard. ;-)