What a great father’s day gift! Katy came home around lunch time, and is doing great! She has a few antibiotics to take, and a new set of wound care orders, but she is in great spirits. The frustrating thing is that we know the culprits that made her feel bad, but not the root causes. We still don’t have a good explanation for why she was so sympomatic while sitting up, and several other questions, but I think we have made some adjustments that should help to prevent a recurrence. We also have several follow up visits scheduled with the doctors to monitor all of Katy’s levels.
First, I would like to share some good news. A while back, as you may remember, Katy had an EF (Ejection Fracture) of 12. A normal woman should have an EF of 55. When we left Parkland it was at 31. The cardiologist did an ECG of Katy and found her to have an EF of 55! The meds she was on for her heart were not doing her good, and may have been harming her, due to her recovering MUCH quicker than anticipated. This helps to reinforce that her heart failure was secondary to her other conditions, and not the other way around. She is currently NOT taking any heart meds. YEAH!
I want to address something that has been on my mind the last few days. I want to talk briefly about what happened in te ICU the other night that caused me to put restrictions on visitors. A friend of ours was apparently (I didn’t see her until the last minute) waiting to see Katy. I had asked for all visitors to contact me to schedule appropriate times. The reasons for this were many. The primary two reason were that there may be procedures scheduled that change when we can, and cannot, see Katy (that happens regularly), and the other reason was so that family was alotted time first. One time, while Katy was in KMC the first time, I went to go in to the ICU and was stopped by staff. I was told that she already had her max number of visitors and that I had to wait. The hour came, and went, and then her friends came out. They said they were waiting for me to come in, and that, since I didn;t come back, they figured they could just stay. To top the experience off, I was told the doctor had already left and he had given all information to those that were there. This person showed up, unannounced, and then barged in on another of our friends’ time. She procedded to bombard Katy with questions, and, when I reminded her that she needed to please contact me in advance, ignored me to continue asking Katy questions. She proceeded to offer to take the kids, go by the house, etc, all while I am there. As the father of the family, I had already made all of the arrangements, and had relatives coming in to help. When I stated that she needed to talk to me about these things, she started yelling about wanting to make sure that Katy had a voice. I can assure that Katy has a voice, uses it, and I execute her wishes. However, while she is recovering in an ICU, with still undetermined causes, still in pain, and still unable to eat, that is a COMPLETELY inappropriate time to go to her for that information. Also, aside from the complete lack of respect for my role in the family, there was no consideration made for the fact that I already had 2 people rearrange their personal schedules to come help. That, and if anyone thinks that I don’t want Katy to be independant, they would be wrong. I will do whatever Katy needs, for however long she needs, but I would much rather that she could get her own drinks, scratch her own nose, answer the phone, change the TV channel, brush her own teeth, change her ostomy, etc. I’m sure she would agree.
It bothered me immensely that someone could be so insensitive during these difficult times, especially comeone claiming to want to “help.” I stewed over it for a while, and then (after talking to a few of our friends) came to what I hope is a reasonable conclusion. With the exception of those few people who read the blog, or we know, that have a seriously ill person in their life, most of the world has no idea of what it is really like. The only reason I am mentioning ANY of this is to prevent future occurences like the other night. I think, based on talking with several people, that most people think that, because Katy is home, that she is fine. I don’t think that they realise the level of daily care still needed, and, when they ask, we say that she is fine. She is fine. At least she is well on her way to being fine in the new definition of the word. She still requires a LOT of daily maintenence, and, due to reason of dignity, I do not share all of what is going on with her to the world. I think that, because of that, some people view that as her being secluded by me. Katy made mention of feeling couped up. I start getting phone calls immediately afterwards about why I’m not letting her go out. If they only knew. I spoke with Katy about this, and she was amazed that people would take her comment to mean that I was responsible for her feeling couped up. She was feeling that way because she wasn’t feeling well enough to leave the bed. She smile and laughed for the benefit of friends, she stil has her pride, but felt horrible inside.
The other thing that has happened is that many, many people call/write me with the SAME suggestions, and then the follow up, and then the 2nd follow up to their questions, regarding Katy seeing a psychologist, wound care, herbal remedies, etc. Once again, most of this is not being discussed openly because we would like to keep some things to ourselves for our own reasons. It is more difficult than one might think to write so openly about my wife, our kids, and our life. I focus on the positive, and I try not to let the dark thoughts see the light of day. I am aware of how many people read this, and I do not want to spread any more bad into the world. I have chosen, and Katy agress, to use my forum to spread information about this experience, and to try and stay as positive as possible while going through this. That being said, I know good and well that Katy needs a psychologist, what most of the alternative remedies are, and that so many people would love to come over and help. Unfortunately, the process for the psych doc is a long and twisted road compounded by the Medicaid system. Before anyone offers to help with Medicaid, you can’t. New rules put in place make it where it is difficult for me to do it, and they no longer allow 3rd party advocates. I spent 18 hours, in one week, on the phone with them. I am aware of what herbal remedies there (we are friends with a wonderful naturopath), and she knows that we cannot do much with them due to the meds Katy is taking. Lastly, though it is wonderfully sweet all the offers we receive to help, we are all a little overwhelmed, and more people doesn’t help that. Which leads me back to my original point. Katy and I LOVE, LOVE, LOVE to have visitors to Hotel Hayes, and love to see frinds while in the hospital – though we are hoping for no more hospital stays, but we must ask for understanding, and respecting, OUR wishes to schedule your times through me.
I also wanted to say “THANKS” to some people I haven’t thanked yet. I want to thank YOU. I don;t always get to reply to the comments made. In fact, I have over 1100 e-mails I am trying to return. I DO read all of the stories that are posted, and I am deeply touched by people’s willingness to share their own experiences with us. I think of all of you often, and I share your stories with others who may benefit from them. It means so much to me that so many have been willing to write to me, even once, to say how they felt about what Katy is going through. In all of my running around (physically and mentally) I sometimes for get to mention someone whose story touched me, but all of your shared life lessons have been received. Thank you for allowing us a view into your life as you read about ours.
I realize that I haven’t shared any stories about Katy in a while. It gets hard to think sometimes. I used to stay out all night, sleep for two hours, and then work all day…and that was in January! Lately, it seems I am running on empty at around 9:30pm. Here is a funny little happening from our stay at Parkland. Katy was haveing the issues with her lungs, but at this point the docs weren’t sure what it was. Katy was awake, and had kept her memory for about 3 days. She was aware of the amputations, and was cracking all kind of jokes! I do love her sense of humor. A new doctor came into to examine her, and you could tell he was a little unsure of how to talk with her. He introduced himself, and touched her on the shoulder. She says, “what, you’re not going to shake my hand?” Then she extended her bandaged arm. He did shake her “hand,” and he immediatley lightned up. It was hilarious. Another time, we were driving with a frind, and the friend was saying that he hoped that the fund raiser would allow us to buy a house. Katy said, “too bad houses cost an arm and a leg these days!” Then she busted out laughing! I am laughing while I type this. She cracks me up.
I will write more soon, and thansk for all of the comments!
Love to all,