Author Topic: Today at 4 (Read 5583 times)

Esther · « **on:** January 20, 2009, 07:21:30 AM »

Kevin and Dawn have an appointment with Hospice. They will be considering some difficult decisions.

Eliana told me this morning that at the funeral, they will be letting each child take a stuffed animal that belonged to Braeden as a memory. Ian and Eliana will have first choice.

Bonnie · « **Reply #1 on:** January 20, 2009, 08:08:18 AM »

Esther, Continued thoughts and prayers.......

Hugs to all,
Bonnie

Brian · « **Reply #2 on:** January 20, 2009, 08:20:57 AM »

Esther,
It makes the situation that much more real to hear you talk about Hospice and funeral arrangements. :'( {{{Hugs}}} to you and Braedon and the whole family.

Desertponder · « **Reply #3 on:** January 20, 2009, 09:47:17 AM »

I can't even imagine what it must be like for them to deal with this very tough time.
:'(

Kittyzee · « **Reply #4 on:** January 20, 2009, 10:36:27 AM »

Esther, as always I'm thinking of you and your family. Words just fall short, prayers and hugs aimed your way.

Ky Kim · « **Reply #5 on:** January 20, 2009, 12:29:42 PM »

May God be with you all during this time. It breaks my heart. Prayers for all.

Kim

Esther · « **Reply #6 on:** January 20, 2009, 12:31:13 PM »

Yes, I'm afraid it is real alright. Kevin talks every night to us about things that are so difficult. Mostly I nod and say, "uhhuh" or ask questions. Then we cry. Hopefully we'll be all cried out by the time the funeral rolls around. I asked him if one of the things he wants to accomplish for the funeral was to ban his mother becaue she'll be wailing. He laughed and said he'd probably be leading the way in the wailing.

Lynda · « **Reply #7 on:** January 20, 2009, 02:19:37 PM »

Esther, I have no words to express my sorrow for you and your family. You've been in my thoughts and prayers and I will continue to pray that God continues to grant you strength peace during this most difficult time.

Oceanbum · « **Reply #8 on:** January 20, 2009, 03:05:33 PM »

Esther, I am so sorry that you are all having to deal with this. It's so hard to stay strong when your heart is breaking. I will continue to keep you and your entire family in my thoughts & prayers. Lean on each other & be there for each other. It sounds as if you have a very loving, close family and that is so important at a time like this.

Viv · « **Reply #9 on:** January 20, 2009, 03:12:15 PM »

I am thinking of you and your family Esther, this is an unimaginably heartbreaking time for you all.

marla · « **Reply #10 on:** January 20, 2009, 03:22:14 PM »

Esther, the idea of the stuffed animals is very nice.....God's grace and mercy be with you and your family. If it was one of my grandchildren I'd be feeling the same, the first and loudest to wail.

Indiana Karen · « **Reply #11 on:** January 20, 2009, 03:59:51 PM »

It's so sad that those kids have to go through this.

Karen

barb · « **Reply #12 on:** January 21, 2009, 04:52:06 AM »

This is so heartbreaking. How is Braeden feeling emotionally? And were they able to lesson his pain at all?

I can't even imagine what he and your family are going through. I will keep you all in my thoughts and prayers. (((hugs)))

tweetybaby2005 · « **Reply #13 on:** January 21, 2009, 06:16:10 AM »

Esther, I don't have any words just lots of hugs and prayers. I hope Braeden is not in much pain. It is hard enough to plan a funeral for an adult let alone for a child. I can't imagine how his parents might be feeling and his siblings. Sigh... It is just heartbreaking... :'( :'(

Kuan

Esther · « **Reply #14 on:** January 21, 2009, 07:06:29 AM »

Well the meeting with Hospice wasn't as traumatic as frustrating. Evidently the three people who were supposed to present their program weren't prepared or didn't know what they were doing. The first thing that they said to Dawn and Kevin was, "What would you like to know." K & D really had no idea what the organization did. Sure they help families who are losing a loved one but what do they do and how? He said they kind of looked at each other and didn't know how to procede. So the meeting was kind of unnecessary. I think because Braeden will remain in the hospital until he dies, and because they already have a huge network of support people, maybe Hospice didn't think they had anything more to offer.

As for Braeden, it's hard to say at 3.5 how he is emotionally. They said that yesterday he was sedated to do the nerve deadening procedure and to remove the stomach tube. Evidently during it, sometimes breathing can be difficult. So as he's coming to, the gasps and starts talking in a real raspy, grough voice, "I-------can't-------TALK."
Somebody told him it was OK because he didn't need to talk. He said, "I do too." Everybody laughed because obviously he was talking and they all thought he was going to say he couldn't breathe. His personality is still showing as he is a fighter and feisty.

Kevin is reading part of some books every night to Eliana that the social worker let them borrow about death etc. Also, there is a Gilda's club in town that has lots of support groups for every age and classes and things to do that is fun. They offer grief counseling also. I doubt that K & D will use Hospice after their experience with the 3 ladies.

One of Braeden's doctors heads up the local Hospice so I told Kevin he should let that guy know of their experience so the next family that meet with them won't have the same experienc.

Desertponder · « **Reply #15 on:** January 21, 2009, 10:23:32 AM »

That's awful that the Hospice people handled things so poorly. That's what they are there for is to inform and reach out with support and services. They didn't do their job. $:-\$ I would inform the one doctor about the experience.
Still wishing you all strength through this difficult time.

Indiana Karen · « **Reply #16 on:** January 21, 2009, 10:30:57 AM »

I know Hospice is a wonderful organization, but we had a bad experience with them. Mother-in-law was in a nursing home and they kept telling us she needed to sign up with Hospice. She had alzheimers, no cancer, etc. We kept saying we didn't think it was necessary, they said she needed the social interaction Hospice could provide. Finally, we gave in and signed up. They came three or four times a week, signed in that they had been there. All this time, they were paid by Medicare something like $125 a visit. Mother-in-law was paying $3,500 a month for the nursing home, we felt they were being paid twice. Eventually, we got a call saying she didn't qualify. We felt like they did it just for the money.

I'm sure your family has plenty of support from friends and family that will be so much more personal than Hospice could ever offer.

Kittyzee · « **Reply #17 on:** January 21, 2009, 11:44:40 AM »

Esther, my experience with Hospice went about like your familys did, when my mom was in the nursing home and soon to die from Alzheimers. They asked us what we wanted to know--how would WE know about what THEY do? But I had a friend that was a Chaplain in that nursing home and she told me there are end of life issues (physical ones) primarily to look for before the end comes. My sister and I noticed that the nurses were being very "physical" with my mom trying to get her to eat. We asked that that be stopped (no feeding tube also) since her body was preparing her to die. She was very sleepy, almost like she was alive but her "spirit" had already left.

I was visiting her one day when the hospice nurse came in fussing around her, plumping pillows, etc. and wanted to know if she could pray. I told her to basically knock herself out, I didn't need a partner to pray with and I just wanted to be alone with my mother. She didn't hang around long.

Then on Thanksgiving day she was so restless and they are supposed to know what to do when this happens, they asked us what we wanted them to do. What I should have said was that they needed to get there ASAP, even tho' it was a holiday, it's what they do. ANd then in the evening her skin color changed (a very real sign that the end is quite near) and I can't think of the term, but she passed away not more than an hour after that.

I feel that hospice did nothing for us, but got paid just the same. It really would be beneficial if Dawn and Kevin did notify the Dr. about this and their lack of professionalism. Yes, dying may be uncomfortable and especially if it's a child but these people are there to guide families through the process so they know what is coming. Braedon should not suffer any pain, or be in ANY discomfort at all--AND they are there to make sure that everything happens to insure it. Families shouldn't have to worry about contacting dr.'s and nurses to make their loved one comfortable. BUT if hospice isn't doing their job, and you get no satisfaction from hospital staff: DON'T HESITATE TO CALL THE DOCTOR AT HOME OR WHEREVER HE IS TO GET IT DONE. IT'S HIS/HER JOB!!

Most people probably have had good experiences with them, it just wasn't ours.

miguynmkoi · « **Reply #18 on:** January 21, 2009, 12:16:30 PM »

I am hoping you and your family are well under these circumstances. It isn't easy for words to find their way to comfort you.

My experience with Hospice was very good. They helped out physically with care as well as I could without my knocking myself out. But in my case they couldn't offer me anymore help mentally that I couldn't get from family and friends before, during, and after the death of a loved one. Did this make any sense?

You and your family seem to have a great network of love in friends and other family members. Make sure you use them all! Lots of Love, warm hugs, and more love from me to you, Esther, so that you can relay them to your family too.

marla · « **Reply #19 on:** January 21, 2009, 02:32:38 PM »

I'm sorry that the Hospice providers were so ill prepared to answer questions and inform Kevin and Dawn on their proceedures. We used Hospice care for my MIL at the end while she was in the nursing home..there was no cost..medicare picked that up. The Hospice care we used was very good, even though it was only in place for under a week. They were able to provide the extra care at the end she needed that the nursing home staff could not, such as someone there daily to be with her

Esther · « **Reply #20 on:** January 21, 2009, 03:40:58 PM »

We used Hospice for when Pete's dad passed away. He had gone home from the hospital to die. They were very good with advice and comfort. They were experts with knowing what meds to use and reading his body symptoms and advised us as to how much longer he would live to within 24 hours. We never had any ill feelings about them so I suppose that as with any organization, there will be good employees and not so good.

It's unbelievable how many folks have chipped in one way or another to help out our family. Even a couple of the schools have done little fund raisers. A boy scout troup brought over a whole bunch of food a year ago. Kevin's church of course have helped financially from time to time. The ladies have brought in a couple of meals each week over the last year and a half whenever Dawn is in the hospital assuming Kevin doesn't cook. Good assumption!! When Dawn's friend from church found out she was pregnant, and still had to take Braeden to chemo and radiation, she set up their crib in the spare room so she was prepared to keep Owen any time it was needed. She lives about 4 mile away. Another friend also keeps the kids from time to time. There are over 1700 people signed up on the Care Pages. I suppose because several churches are involved, more people are there than normal. So maybe that is why Hospice didn't seem to rise to the challenge this time.

emm · « **Reply #21 on:** January 21, 2009, 04:18:57 PM »

Dear Esther, This is just so, so sad. Braeden's been such a bright light in his short little life. I love the pictures you've posted of him. And what spunk he has! He has touched so many people. I wish him a peaceful, gentle passing. My thoughts remain with you and all of your family. emm

bunny56lbc · « **Reply #22 on:** January 21, 2009, 06:53:21 PM »

Esther ,My prayer's & thoughts are still with you & you're faimly .
I cannot imange what you are going through right now .

bonnie

Roark · « **Reply #23 on:** January 21, 2009, 07:10:42 PM »

Esther: Your supporters, and Braedon's, and your family... we ALL remain.

Thank you for taking the time to keep us up to date. Our hearts are with you.

Roark

Esther · « **Reply #24 on:** January 21, 2009, 07:38:38 PM »

Again, there are just not the right words to thank you all for your constant emotional and spiritual support. It does certainly help keep me going.

Prior to the meeting with Hospice, the doctor had told them that they might eventually have to choose to stop feedings, some meds, etc. That was what I thought would be so difficult to decide. But today they learned that something is shutting down already. Braeden's abdomen is filling up with liquids, something about the tumor giving off this stuff. Eventually the kidney may stop because of this. So they're keeping the kids home from school Friday so they can spend some time together while he's still speaking and somewhat normal. Kevin is spending the night there Thursday. The doctor today told them he might have a week.

Joyce · « **Reply #25 on:** January 21, 2009, 07:44:44 PM »

Esther, I had a very busy day today, but you were constantly in my thoughts. My friend Sara came along with me today to my MD appt, then went shopping afterwards. In one store, a little boy statue reminded me of Braeden. I told Sara about Braeden, and we both just looked at each other over the statue, choked up....BIIIIIIIG moment of silence, eyes brimming. Sara is a grade school teacher, special ed. She knows about Braedens type of cancer, has taught kids with it. I told her I worry and pray every time I click on AP. Then first thing I do is check on you and Braeden, praying as I click. Knowing your story, and what you are going through, makes all of us count our blessings. Puts everything in perspective. No matter how short or how long we know each other, it's a gift to love one another, to have someone in your life no matter how brief. Love enriches ones soul. That can never be taken away.

rdrboone · « **Reply #26 on:** January 21, 2009, 10:47:52 PM »

Esther,

I am very sorry for you all. You and your family are in my thoughts and prayers.

Ruth

ladybug · « **Reply #27 on:** January 22, 2009, 01:53:39 AM »

esther i have been telling my friends and family about your families struggle with braedon's health. he is such a brave little boy. i am so sorry his time on earth will be cut short by this. :'( he will be in a better place and in the protective arms of god. braedon, you and your family are constantly in my thoughts, and i will continue to tell people of his story. he will live on in everyone's hearts.
ladybug

tweetybaby2005 · « **Reply #28 on:** January 22, 2009, 06:12:15 AM »

Esther, just want to check in to see how you and family are holding up. Every time I come to AP (several times a day), my tears just flow. I just can't stop it. I will continue to pray for your family. All of you are in my thoughts and prayers daily. :'( :'(

Kuan

Esther · « **Reply #29 on:** January 22, 2009, 08:13:11 AM »

Thanks folks. I also come to AP several times a day and am constantly blessed and uplifted by your kind words and friendship.

I talked to Dawn this morning and she said Braeden seems to be perkier today than yesterday. He was sitting up in bed and playing with toys. He's not so tied down now that they have removed most of the tubes.

Kevin said that yesterday he asked for ice water. When the nurse brought it, it was in a large styrofoam cup. He immediately told her that water was for Daddy. She said, "No it's yours. You asked for it." He then argued it was not in his clear cup with the stuff on it. All this time they have been keeping close count of his fluid intake etc so was using a clear cup with measurements on it and he wasn't about to take a drink out of somebody else's cup. So they poured it into "his" cup with some ice. Kevin offered it to him. He looked at it and said he wanted ice. Kevin swished it around so he could see the ice and he said, "I want some more ice." So Kevin poured the water off the remaining ice and poured more ice into his cup. He again offered it to Braeden. He says, "UH, maybe I don't want a drink anymore." So Kevin put it down. Just then the nurse came in and right away Braeden says, "I wanted a drink of water with ice." Kevin begins to feel stupid that she might think he didn't give the water to Braeden. HE begin's explaining and the nurse laughingly said she'd be glad to get a cup of ice because must be there wasn't enough ice in the cup to suit him. So she brings a cup of just ice and Braeden, seeing his dad begin to take the top off the cups says, "I DO IT!!" So Kevin holds both cups while Braeden picks up pieces of ice and transfers them to the water. Kevin let him do it because it was something to keep him busy for a while. Pretty soon his hand got cold and guess what....He decided he really didn't want a drink of water any longer. I think he was enjoying his ability to push people around. LOL.