View Full Version : Support needed
04-13-2009, 11:06 PM
I am tired to the bone despite getting sleep. I am second guessing every decision we've made and playing the "what if" game with myself. Alize has days where he is mostly himself and all my hopes rise then he has times like this weekend where he is essentially out of it and cries out in pain if moved at all. He still has a temp (usually in the evening) of up to 101. His lungs go from clear to rhonchi/wheezing and then clear again. We are trying so hard to be "normal" but both Charlie and I are functioning like robots. Ciara has important appointments in Pittsburgh both tomorrow and Wed and I'm scared to death to be away from home for so many hours. To those of you who have been down this "endstage" path, I really need advice. Karen
04-13-2009, 11:09 PM
I don't have any advice to give, but to offer my prayers and support to you. You are doing amazing with what you are going through.
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04-14-2009, 12:52 AM
Oh Karen,,I wish I had some great advice or insight!! Please know that you and Charlie have done EVERYTHING just right!!! God knows what he is doing even when we don't understand it!! Don't second guess yourself another second, hand it all to God!!!((((((((((((((HUGS))))))))))))) I can not imagine what you are going through all I know is that God is in charge and we are all here for you!!!!!!!!
04-14-2009, 01:11 AM
When I traveled this road with Malachi, I did what I had to do. I left the rest to God. If a child had an appointment that could not wait, I went. I prayed and I also worried. I did everything I could to be at home, but there were times I had to go.
In the end, Malachi passed at 10 PM and we were with him.
Now Jason passed away in the middle of the night and he went when we were sleeping. The doc had no alarms on him. We had no clue it was his time. He just peacefully passed.
You have to do what you feel you can, or must. If this is the road you are going to travel, it will happen when it is time.
I am not trying to sound too religious or whatever, but it is our faith that has seen us through and allows us to continue to adopt the medically fragile and shortened life span children. We know God has a plan and even though it is hard, we are so blessed to be a part of it all.
04-14-2009, 06:14 AM
Karen, I am so sorry, I wish there was something I could do to relieve the burden for you. Roberta put it so well, all you can do now is wait. do what you have to do and anything not important will have to wait. Sending all our love and prayers across the pond:hug:
04-14-2009, 07:02 AM
Oh Karen, I can't begin to imagine the pain you must feel. If it were me, I'd try to reschedule Ciara's appointments if they can wait. My family's thoughts are with you each day. Strength and peace. Suzanne
My little figther
04-14-2009, 07:59 AM
Karen - I am so sorry I truly wish I could do something - I believe that you did everything right Alize and your family are so blessed to have found each other - he could not have asked to have better parents than you two. Sending love and prayers.
04-14-2009, 08:26 AM
Karen, I'm sitting here looking at this and trying desperately to find some words that are appropriate. You have to keep on going. Things have a way of working out for the best. If you can postpone Ciara's appointments, do that. Give yourself the time you need with your son. And know that we are all thinking of you and supporting you in cyber space.
04-14-2009, 08:41 AM
I wish I could do more than to just let you know we are praying for you all. I know telling you to not second guess yourself does no good but really, you did it just right.
04-14-2009, 09:12 AM
I don't have any advice, but wanted to give you a cyber :hug: You and your family are in my prayers.
04-14-2009, 09:13 AM
I wish I could give you some words of comfort as well Karen, but I don't.
I will offer you my thoughts and prayers though.
04-14-2009, 11:50 AM
We're keeping you and yours in our thoughts here. Please don't second guess yourself - I think we all do the best we can at each moment with our kids, and once we've done that, looking back on it will only make us crazy. :hug:
04-14-2009, 01:31 PM
Oh Karen, first of all, big, big hugs.:hug: :hug: As you know, having a medically fragile child is like you are constantly grieving - then when the possibility of "death" enters the equation, the grief is taken to a whole new level. We have "almost" lost Jacob so many times, so I have "some" insight from perhaps a different angle.
The second guessing gets "magnified":eek:, which I believe is all part of letting go. The best advice I can offer is to be as prepared as possible for Alize to pass, make sure you have already told him everything you need to, hugged him, kissed him, whatever you need to do. That way, when he does pass, you will not feel regret. As Roberta said, you may or may not be there when he passes - just know that he will pass under the circumstances that are best for him.
For me, there is always a point where medicine stops and "something else" takes over, which in my case is my faith. Being the "control freak" that I am, when things come down to the wire that I have no control of, I truly have to let the Creator take care of it. If you believe in a "higher power" of some sort, draw on that heavily right now. A "higher power" can be anything, not necessarily "God", if that does not feel right for you - it can even be this group. Please try not to feel guilty for the time you have to be away from him - I know, easier said than done - know that Alize understands. :hug:
04-14-2009, 03:34 PM
I am so sorry and I as I write this I am trying to find the appropiate words to ease your pain. Please just know I think you are extremely wonderful, and Alize must be so comforted by having your family in his life. Try to reschedule Ciara's appointments if that is possible, and I am sure that the hospitals would understand.
Hugs to you Karen,
Karen, I can only guess or maybe approximate what you are feeling. Like others, I've also almost lost Shelby many times. It's a totally frightening, unreal, out-of-control kind of terror, helplessness, fear, anger even .... A nightmare cocktail distilled into a drink no one should ever have to take. I know you must be exhausted. How I wish I could come and help you. I'm sorry. Just know we're all here for you. Saying a prayer -
04-14-2009, 07:20 PM
Karen I like what Jacob's mom said. I think if you can think of anything you might want to say or do with him, do that now so you are prepared, and Alize will pass at the time that is best for him. That sounds simple but it is profound. Maybe you will be there but chances are you will not, just because I assume you can't sit next to him every minute of every day. Then I think you have to recognize there will never be "enough" time. All you can do is make the most of the time when you are together.
I'm going to assume that since you said Ciara's appointments are important that means they really are and you have reasons for not rescheduling. You can't feel guilty about doing things that are important for the health of other members of your family.
:hug: :hug: :hug: I've been thinking about you guys a bunch.
04-14-2009, 07:36 PM
Thanks so much. I really needed to hear what all of you have said. I did call the neurosurgeon today just for reassurance. He believes the shunt is not working but that when the pressure in Alize's head builds up enough then it opens just long enough to drain. The cycle then repeats itself. He reinforced that what we are doing is the best thing.
As to Ciara's appointment today, it turned out to be more important than I thought. We needed to discuss her sleep study which showed central apnea episodes. While giving her history I again mentioned that she goes into resp arrest very quickly when decanned, that she has had "cold" symptoms this past week and she is again having trouble tolerating her feeds. She was sent over to ENT who did a flexible bronch and (for a normally calm guy) got fairly concerned over the amount of secretions he saw, the amount of saliva she still has and how irritated her airway looks. She is going back tomorrow for a bronch and ligation of her left parotid with at least overnight admission. I have a feeling we are going to find out that her fundo isn't working and she has refluxed and possibly aspirated. Wish us luck. Karen
04-14-2009, 08:31 PM
Gosh, Karen. You have a lot on your plate right now. I'm glad you were able to be there for Ciara's appointment. But I know that it means that you have to be away from one of your children for the next few days. I think if Alize could tell you, he would want you to be there for Ciara too. Both of these babies are precious and important.
I have no advice, but wanted to offer a great big :hug: and many well wishes. You are living a fear that every person on this board has. To 'watch' you go through this is heartbreaking.
I hope Alize finds comfort in the overwhelming amount of love you and your family have provided him. Not all medically fragile children are fortunate enough to have family who would walk through fire to ensure their well being, and Alize is infinitely lucky to be blessed with so much love it's almost tangible. While I don't know your entire story, I truly feel you have offered (and continue to offer) Alize the best life he could have ever had. You believe in him, and I'm sure he feels that pride.
I am continuing to pray for you and your family. Hope Ciara's treatment and visit is a quick overnight and you can get right back home to Alize.
04-15-2009, 03:41 AM
I'm so sorry Karen. Hope Ciara is in and out of the hospital as quickly as possible. You have an awful lot on your plate right now, we are all thinking of you. I'm sure Alize will understand that you need to be there for Ciara too
04-15-2009, 06:52 AM
Alize and your family are still in my nightly prayers. I will say a special prayer for strength, comfort, and peace for you.
04-15-2009, 11:15 AM
I wish there were some words that would bring comfort to your family. Anything I write just feels inadequate. We're still praying~:hug:
04-15-2009, 12:29 PM
I am second guessing every decision we've made and playing the "what if" game with myself.
WHile this is normal, you really don't have to do this. You have made the best possible decisions you could based on the love you have for Alize and the information you had at the time. The big decision which messed everything up for Alize was made before you even knew he existed. You've offered him nothing but love, a home, and a family - for a child, that's giving them the world!
Regardless of faith, the endstage vigil hurts and takes all your emotional energy. The most important thing for Alize is that you are there, but you do also need to look after you so you can be present with him when you are with him. You can't do it all the time and Ciara needs you too.
So peace and kudos to you. You are coping with one of the hardest things a mother can ever do. You're dealing with it the best way you can. I doubt there is a right or wrong way.
04-15-2009, 01:06 PM
I really don't know how to say this, but I really, really wish I had known our last time in the hospital were Tommy's last days. I was angry and frustrated nobody was listening to me and having a little pity party.
I would have held him nonstop, taken so many pictures my hard drive filled up, and never left his side for a moment. I know watching Alize and knowing what may come has got to be so, so hard, but please understand that I see this as a blessing for you and your family.
There is no easy way to go through this. The beginning, middle and end all stink. I'm still praying for that miracle that his shunt opens and stays open. Do what YOU need to do for your own peace of mind. Alize knows you love him.
I am so sorry for all you are going through. I hope you can get sleep. From reading all of your posts, I think you are a very strong person and you make wise decisions. I pray that you can feel confidence in the difficult decisions you have to make and know that we are all on your side.
04-15-2009, 06:01 PM
Been thinking of you and Alize, Karen...:hug: much love.
04-15-2009, 06:22 PM
what wonderful responses, everyone here is so loving and wise
you are in my thoughts and prayers
"You have made the best possible decisions you could based on the love you have for Alize and the information you had at the time. "
that is great, I will remember that through my own struggles
04-15-2009, 07:29 PM
I've been thinking of you and Alize a lot lately. I wish I had the words that you need to get through this but the only thing I can come up with are the words that a very wise lady told me years ago. She told me that when the time comes god will show you the way. I do believe that. I can't imagine what you are going through and the heartbreak that you face daily. Just love him all that you can and know that you were the mother that he needed. When he closes his precious little eyes here on earth, he will awake to a beautiful place where he has no more limitations or boundaries. He will have lips that have never spoken, but will sing beautiful songs. He will have feet that never walked on earth but they will walk and dance on streets of gold. No more pain!!
04-16-2009, 09:13 AM
Still thinking of all of you. I enjoyed our "chat" the other day. I hope you did too.
04-16-2009, 10:51 AM
How are things, Karen? Did Ciara's admission go well? You've got so many good thoughts here. It is so true that you must not second guess yourself. If every child in the world had a parent who was even half as loving and thoughtful as you then this world would be a much, much better place.
Rene's words are so profound too. There is a lesson there for all of us- to embrace each day as if it could be our last. This is not the time for second guessing this is the time for living in the moment end enjoying time with Alize. And focusing on his comfort.
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