I want to start off by saying that I am sorry for not replying directly to most of you. I have read EVERY e-mail and post, and I have researched and taken into consideration them all. I have had so many replies, through all the various communication channels, that I couldn’t possible answer them all. Thank you all for taking the time to send me the info.
I’m at a loss. There are so many decisions that are being pushed at me, and no where near enough answers to the questions. Unfortunately, the time frame before Katy starts going backwards is rapidly approaching, and I am flying blind. So many of the options would require a miraculously quick response from individuals and organizations that might be able to help. I have contacted the case managers for 3 hospitals, put all of my questions before the current doctors, and researched several dozen websites. I am not sure why the move to Dallas was made. I was led to believe that Katy would have treatment options not available to her in Houston, but I am not seeing that to be true. I now feel that she is recieving the same quality of care she would have gotten closer to home, and that the move was a lateral one at best.
The time frame for something to occur is 48 hours. If nothing happens in that time to sway the options, in one direction ot another, then I have to concede to the amputations. I, in my heart, do NOT want that to be the case. I asked the doctors for at least one alternative to the surgery, and they, as of yet, have been unable (or unwilling) to offer any alternatives. This is 100% unacceptable to me. I have suggested hyperbaric oxygen, uv, removing the clots, blood thinners, physical stimulation, hydro therapy…none of which they are capable of or willing to do.
I’m sorry to vent in an open forum, but my mind is racing, right now. Sleep is not going to come easy, but I need to be rested so that I can advocate for her. Please send any suggestion to alhayesmusic@yahoo.com. The hospital does not offer wi-fi, so my phone is my only source of outside contact while I am there. Say a prayer for Katy, and another that I make the right decisions. I need all the help I can get.
Al
Al,
My heart is breaking at the decisions you face. My thoughts and prayers are with both of you.
The only advice I can offer is…What would Katy want?
You must act with her feelings and future as your only focus. We all would want to be selfish and do everything medically possible, but in the end, right and correct are not always the same.
I love you both, and consider you both family, but if it were my mother, sister, or my own daughter, I would hope that I would find the courage to put their needs ahead of my own.
What ever you decide, please know everyone will be there in thought and prayer.
Jim
Al,
I don’t feel I need to pray for you to make the right decisions for Katy – I think God is already guiding your path. I will pray for God to give you strength, confidence and comfort in all the decisions you make.
Best,
Kelli
Al, I can’t even think of anything to say, except that Katy is lucky to have you & I know she trusts you implicitly. Praying for another miracle.
Love,
Laura
Although I can’t offer any answers, I really feel for you being in this position, but I also know that if I had the love of a good man (which I do), he would instinctively make the right decision on my behalf.
Definitely praying even harder for you today, knowing that you WILL make the right decision for Katy.
SO many people – now worldwide – are holding your family in their thoughts and prayers and I know this will guide your path and choice in the right direction.
Be confident that your decision will be the right one – with so much positive energy and prayer focused on your family, it has to be.
Leigh
Have the doctors tried leaches to get blood circulation back? It is just a thought.
Hi Al,
Been researching this some and it looks like necrosis is caused by infection and it can spread if untreated. I guess your main considerations have to be whether there IS a way to halt the progress of this infection and how much necrosis there is at this point.
Options I found to remove the necrosis are chemical debridement and maggot therapy.
It seems that amputation would be the easiest option for the doctors. But it’s not about what is “easiest”, it’s about Katy and her health and quality of life.
If you have misgivings, you should definitely not jump to a decision. I would strongly encourage trying to get a second opinion. If there were a way to stop sedating Katy long enough that you can try to communicate with her that would take this very difficult decision out of your hands.
Not sure if you recall, but by natural therapies, Char cured herself of MS. It may be worth trying to talk to her – 512-576-9017.
Whatever happens, I know Katy loves and trusts you. You know her better than anyone, and whatever decision you make will be the right one. Hang in there, all my good thoughts are with you.
Heather
Al, you are doing all you can. I pray God will guide you in the right direction. I will continue to pray for Katy. God bless her and you!
Al, I don’t know you and your sweet family, but am touched by your circumstances.
My heart says to tell you to make the decision based on your heart and gut. You will know. Whatever you decide will be the right decision. Don’t look back.
I know, too, as you say, Katy can hear you.
You and Katy are surrounded by light filled with love.
Blessings.
Katy is so fortunate to have such a loving, wonderful husband at her side to advocate for what is best for her. You’re doing a wonderful job.
I just wanted to stop in and say that the Houston Doula Community is praying for Katy and your family. We’ve also spread the word via facebook and twiiter, and there are many other doulas/midwives around the country praying for a miracle.
Love and prayers,
Lisa
I’ve been reading about your family online, mostly from KingwoodUnderground. I don’t know you or your wife, but I feel sick with pain over what you’re having to do. I was only 15 when my grandmother was diagnosed w/ cancer and was given less than a year to live. I was 20 when she died. I am so very thankful for those 5 years I had with her, even though she was going through chemo. I’m sure your kids will be like me and want every last minute w/ Katy as they possibly can. Love is fragile and when you suffer, as you and your family are, I can only hope you find the love in your heart that your wife would show you if you switched places. No one wants to suffer, but no one REALLY wants to die. Fight and pray for her, I promise there are more people praying and supporting you than you can imagine. My heart sincerely goes out to you and your family, and if you need anything, don’t be shy. There’s plenty of us out here that can help you with meals and other favors. *hugs*.
Jenn
Hey Al I have been trying not to bug you- Im working hard for you all on the fundraising end!
This may be a good time to reach out to the larger community via television….. help that is, finding doctors…… something to consider.
I am praying all day and night for you all
Love, Paula Tobey
Al…
I guess it comes down to this – if there are no other options the doctors say are available (or that they are willing to pursue) – would your wife rather take the chance of fighting for her life and HOPING to come through it with all of her limbs intact (with a huge chance that she might not survive); or would she rather you make the decision for the sacrifice; knowing it has the best odds of saving her life and returning that amazingly beautiful, laughing soul to all of us who are missing her so much already – including her newborn daughter who has never even gotten the chance to know her…?
I pray the Lord leads you in the right direction for this very difficult decision. I know as a mom of 4…that if my husband were faced with this for me – he would know there would be a huge part of me that would say – leave me intact or let me go. I cannot imagine being placed in a position that requires others to care for me the rest of my life – but if I were REALLY faced with that as a reality – “Die now and never see your daughter get married, never get to know your newborn baby…never see your husband again – OR – get to see all of that; but without arms and legs?”
I think I’d have to make the choice to suck it up and take the amputations and get on with healing and living my life. At least, I hope that’s how my husband would see it.
In prayer…
Jennifer Jozwiak
713-927-0643
Al,
I am Ashley Johnson’s mom – you need to get your wife back down to Houston – my sister-n-law had same virus – they wanted to amputate – but my brother insisted they try the oxygen 1st – it worked on her –
Your best hospitals are in Houston –
You & your family in our prayers
Al, I don’t know you. I found this blog from another post.
But please know that I will be praying for you for wisdom and direction. And for your precious Katy, for healing.
From Oregon
Danielle
Al,
you are strong and yall will pull through. Katy is lucky to have you. Your family is in my thoughts and prayers.
With love,
Larissa
Al, I know that you are doing everything for Katy from you heart!continue to keep you and your family in my thoughts and prayer.
Karen
Praying for you and Katy and your family. I pray that God will give you peace of mind with the decissions you are faced with. God Bless you and Congrats on the new baby girl. We are putting Katy and your family on every prayer list around this area. We will continue to check on her progress.
Friends in Christ.
From Northeast Texas area
Linda W.
Al,
I can’t imagine the weight that you must feel on your shoulders right now. Just know that you are making the best decisions anyone possibly can in this situation. You and Katy are in our hearts.
Al,
I have been reading about, following and praying for you, Katy and the kids.
You are a very strong family in life and faith. As this was happening to you and yours our own daughter gave birth to her baby daughter who did not survive and although were prepared for that, we still grieve. She was with us for 7 hours.
I am saddened so much by that but, your famillies struggles seem to be so overwhelming. We waited for a month for our daughter to give birth to a daughter we knew would not survive. Be grateful you all still have your beautiful baby and your wonderful strong beautiful wife… I pray you will all grow stronger each day through your faith in God… and Katy’s unbelievable will and determination to get well and come HOME!! And she will come home, soon I pray.
God Bless you all