What If Part 1 Your Child's Last Days

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What If?

Part 1: Your Child’s Last Days

This is where I talk about the subject none of us want to face; What if my child dies? As I write this it is almost 5 years since my daughter died. It is still hard to accept, but really what choice do I have? What makes it even a bit bearable is that I know nothing else could have been done and that she died peacefully. In this chapter I talk a lot about my experiences with this, what I learned, things to think about and consider as well as some practical information about hospice care and bereavement. This chapter also contains letters from other parents talking about their journey and preparations. It is a hard chapter to write, and may be difficult for parents to read. Skip over it if you want, until you are more ready. No one can ever be really ready for thinking about the death of their precious child.

I have divided the chapter/section of website into 5 sections to make it easier for families to find the specific information they need as they travel this journey with their child. The sections are: Part 1: Your Child’s Last Days, Part 2: Funeral planning, Part 3: Grief & Loss, Carrying on without your child., Part 4 Difficult Tasks and Days, and Part 5: Helping Children With Death

For many of us there are frequent false alarms; we think this is “it” or the Drs tell us there is no hope and our children then just get better and keep on going. One night I took my daughter to the emergency room in a coma with a heart rate of 34 and a temperature of 34C (about 95F). The Dr looked at her and said that she was going to die that night. At that time she still had a DNR and I knew that if she went into cardiac arrest they wouldn’t let me do CPR. So, I said “I’m taking her home” The Dr agreed, she woke up as they were taking the iv out and woke me up at 5:30 the next morning laughing merrily. She lived nearly 7 years after that episode. I think that all of us have stories like that about our children.

But, for many of us, the time comes when you realize that there is nothing more that can be done. Some of the children do die suddenly with no apparent warnings or causes. That is very hard to accept, especially when you know that many of us have had time to prepare and say good-bye. None of this is ever easy and no matter how “prepared” you are, when it comes right down to it, you never are ready to say goodbye to your child.

How Long?
When you know that your child has very little time left, one of the most frequent questions families ask is “How Long”. The following guidelines were given to me by the hospice staff when I asked this question about Kayda. Generally, if you notice a child changing (deteriorating) on a monthly basis then likely he/she has months left. If on a weekly basis, then weeks, if on a daily basis, then days if on an hourly basis then your child has hours left. Of course no one can know for sure how long a child will hang on. With Kayda, she hung on 8 whole days after stopping taking fluids and there being hourly changes. These are just general guidelines.

Signs that death may be approaching, our experiences;
Many of the children with Hydranencephaly die suddenly. However for some of us there are signs and changes that indicate the end might be approaching.

For Kayda, I think the end started in March 1999 when she had a very bad pneumonia that she barely survived. From that day on she had more troubles. Most noticeable were seizures and poor motility. By the end of that year she was getting one illness after another. Strangely enough she recovered from each illness more quickly than previously. Her fixed focal seizures, while still very brief 5-10 seconds steadily increased and she was having hundreds each day. She just generally didn’t seem as happy and got very tired when out. Her motility steadily decreased and she had to be fed slower and slower. We switched to a formula that was more easily digested and this helped for a while. We were in contact with the neurologist frequently during this time and she commented at one point that a child couldn’t survive long having seizures like Kayda was. We could tell that her body was slowing down. Her heart rate got slower and slower (22-26 even when awake), her temperature went down, as low as 32C (approximately 89F), she peed less, and slept much of the time. She also needed more and more oxygen to keep her SATs the right level. By April I knew for sure that she was dying. Many others didn’t, and I hoped that I was wrong, but I wasn’t.

In early May (6-7 weeks before she died), I noticed lots of green residuals in her stomach contents and realized that she was often uncomfortable being fed formula. When I’d go to just pedialyte, the green would go away and she would be more comfortable. During the last month she tolerated very little formula and less and less pedialyte. Although her pediatrician felt that her death was approaching, it wasn’t until early June when that was confirmed by the Doctor at the Hospice Kayda went to for respite. I don’t know if any of us realized how quickly it would approach; she lived only 2 weeks after that.

It wasn’t until I watched video taken of Kayda during her last days that I realized that her lips, hands and feet were blue. The most striking change in Kayda was that she rarely smiled or laughed any more. That told me more than anything that it was time for her to go.

For Tyson (August 2, 2002-March 27, 2003) Two months before Tyson passed away he started feeling discomfort and just acting funny, I took him to his neuro and they pulled a cat scan. The lining of his head had begun to pull away from his skull. His brain stem was also shrinking at this point. He was awake a lot more, for three days straight before he went to hospice. He also stopped messing his pants, and there was a progression of blood that was in his stomach. He started throwing up everything too.

From April, mom to Chris (September 23, 1988-February 1, 2003):
I had known for a few months before Chris died that something was different with him. I felt I was going to lose him and he was losing his battle with life. Chris was no longer the "happy all the time" little boy any more. He wasn't tolerating tube feeds as well, his breathing became a problem again and his sleep apnea was getting worse. His Dr. and I discussed all our options to help keep Chris comfortable. I agreed to a trial BIPAP.

The night of the trial BIPAP, Chris was all smiles and laughs. The BIPAP trial was postponed due to the fact they needed the bed on the PICU for an emergency burn victim. I had the choice to bring Chris home and back when a bed opened up or camp out on the Peds unit in the hopes a bed would open up the next day. The Peds unit did not do BIPAPs. I wanted to bring Chris home but his DR and I talked and I agreed to transfer him over to the Peds unit for the night. Hospital stays depressed me so much that I always had someone else stay the night with Chris. Little did I realize that when I left that night, it would be the last time I would hear him laugh. My boyfriend spent the night with Chris and the two of them planned on partying. Chris gave me a smile and a laugh as I left.

The next morning I got a call from my boyfriend. Chris' temp was high. I got ready and when I walked in the room I knew Chris was dying. His Axillary temp was 103 and his breathing was out of control. He had not been in the hospital for 3 years and the hospital had all new staff on so the staff did not know him. With his temp being so high, they thought infection. His temp continued to rise and I could not comfort him enough to calm his breathing. All the tests were negative; blood work was fine, dilantin level of 30. Chris never had a Dilantin level higher than 20, confirming my suspicions of his digestive system slowing. In the mean time, I told the Dr to start Chris on something to calm him. The Dr said to me, "You know what will happen if I do that." I said, " I don't care, Chris is suffering." He was started on morphine and Ativan. As I walked down the hospital hallway, the Dr stopped me to tell me that his chest X-ray was fine and he didn't have answers for me. I told him "Chris is dying and I want to bring him home." Chris was home within 2 hours on hospice, 10 liters of O2, morphine, Ativan, Tylenol, Motrin and a duralgesic patch. Chris' breathing did not settle until 3:00 am the next morning. He was comfortable after that. I was able to keep his temp down. It climbed to 104 axillary at one point with respirations at 120 per minute.
Chris hung on for 2 days. He was comfortable and he passed away in my arms at 1:19 am February 1st, 2003. Hospice made all the calls for me. I was allowed as much time with Chris, as I needed after he died.

Although I had known Chris was losing his battle with life, I never expected to one night leave the hospital with Chris all smiles and return the next day to find Chris dying.

When "the" time comes: Some of our experiences at the end

My Experience at the very end:
Kayda had been in the Hospice for 8 days. She hadn’t tolerated any fluids or food in that time. Throughout her time there, it was clear that medications given via her gtube were no longer working. They would just sit in her stomach. She started out with morphine given via a subcutaneous port. Valium was added to a 2^nd port once it was clear that she was reacting to withdrawal from her seizure meds. On Thursday (about 36 hours before she died) she was extremely sensitive to noise and couldn’t tolerate any visitors. It soon became clear that she was reacting to the morphine. She was put on Dilaudin (sp?). By Thursday evening her breathing was very moist and uneven. On Friday morning, her nurse said that her pulse wasn’t as strong as it had been the day before. She had an odd odor about her, which the nurse said was because her body was already decaying. It bothered her to be touched so she was just left to rest on the couch in her room. Her breathing slowed dramatically to 2 breaths a minute mid afternoon and we thought she was going but she rallied. My husband was there at the time and kept saying ‘don’t go Kayda” while I was saying, “go Home Kayda” in the other ear.

Shortly before 11 her nurse and I put her to bed. I realized that she was very warm and although we’d stopped any monitoring days earlier I checked her temperature out of curiosity. It was 44C (about 112F). While giving her, her aerosol medications I suddenly had the overwhelming urge to pick her up. I hadn’t done so all day as I knew it made her uncomfortable. But, I did pick her up and hold her in her favorite position. Shortly after I picked her up I felt a sudden wetness on my stomach where her gtube was, and from her diaper. She hadn’t wet at all in days but I just dismissed the feeling. I just concentrated on talking to her about Heaven and that it was ok for her to go. A nurse came in and I commented that she was breathing more quietly (how could I have not known she was gone?) but her legs were blue. The nurse adjusted her oxygen and left. After a few minutes I felt twitching and thought Kayda was having trouble breathing and put her down. Her legs were very blue so I ran to adjust the oxygen. As I approached her bed I saw that she wasn’t breathing. The release of fluids happened at the time of death.

From Amy, mom to Ryan (when this letter was written in 2000 Ryan was 11. He died a year later, just after his 12^th birthday)
For many years I have ignored and pushed aside the fact that one day I am going to lose my son. Then back in April when Ryan became so sick and things were touch and go for months I knew I had to get it together. I have accepted the fact that the day is going to come, that was the biggest challenge. My next step was to find a way to cope, I have done this through my own spiritual beliefs that Eric and I have discovered. I have learned I need to do what I feel is going to get me through the hardest days of my life. I have actually begun the grieving process. I have tried to stay focused; I am trying to develop a future that consists of Ryan in spirit. A few years ago, I was set on taking my own life once I lost Ryan. I felt there was no reason for me to go on. Today, I have come to believe that this child was given to me for reasons and lessons. And that if I was to take my own life then the time that Ryan and I have spent on earth together has been useless. I have now come to realize that I must take those reasons and lessons and to help others as well as to make my son proud of me. I called hospice into our home. I went to Ryan's dr and said this is what I want and he said he would support us. When I first talked to hospice, I told them what I wanted, what I did not want, what I expected. I sat down with Ryan's dr and developed Ryan's DNR. My own personal thought about hospice is basically a mixed bag. Knowing that Ryan will be comfortable in his own home when the time comes is a huge relief. Knowing that all of his funeral arrangements are done is a huge relief. Some things parents should know. We had to pick out Ryan's casket (hardest damn thing I have had to do yet). But it is done and when the time comes this is something I do not have to worry about. I had to pick a funeral home and a cemetery. These are things that hospice makes you do. We do not want to have to think about these things, but the bottom line is, IT HAS TO BE DONE. I do not know if I should talk about this but another relief that I have is, at least where we live; when a call comes in that a child has passed away NO MATTER what the circumstances are the whole rescue department is sent. Cops, fire dept., ambulance, detectives, medical examiner. Then the parents are drilled and questioned for hrs and by then the whole community knows. With hospice, that will not happen. We will have as much time as we need to be with Ryan and when it is time for Ryan to leave, the funeral home will come out in a regular SUV (explorer or blazer) and they actually will carry him or allow me to carry him to the vehicle. No one will ever know and there will not be a huge scene. Knowing that hospice is here has made our lives so much easier. I think talking about Ryan's death helps me. It is an uncomfortable topic and not many people want to talk or listen.

Now, if Ryan I pray lives another 20 yrs I will not say that I am ready, but I am prepared. As morbid as it may sound, I have written Ryan's obituary, I have developed Ryan's funeral programs, I have to get a building permit for what I intend to do with Ryan's casket, Ryan's burial will be a private by invitation only with a open memorial service. These are things that I have been forced to deal with but in the end I will be so thankful that I was given the opportunity to plan it right. Ryan has only been given the best in this life and I will see that he leaves this life only with the best. If I have over stepped my boundaries I am sorry. But I want parents to know hospice is more then drugs and just being there when the time comes. My mixed feelings about hospice come into play only for the fact that they are in a death mode. They are looking for death signs every time they come. Talking about death in front of Ryan is absolutely 150% not allowed. If they want to have this discussion either they wait until another day when Ryan is sleeping or another person can sit with him in another room away from the conversation. When they come we do not always talk about death many times we never even go in that direction. We have some good laughs, they think that I am nuts. The social worker laughed so hard at my "Ryan's Rules", he just smiled afterwards and said Ryan is lucky to have a mom who cares. I have been able to educate them in a lot of ways. They have not seen many handicapped children and I am almost certain for them to see another child with hydranencephaly will be very rare. It's a give, give and a win, win situation. My days have been much better since hospice has come into our lives. They have needed some education and they have also over stepped their boundaries and I let them know. They respect me not only as Ryan's mom but my values as well as my beliefs. Whenever we need anything they are here. They take care of all of Ryan's supplies and meds. If I need something like I use Ilex for Ryan's stoma site (protective barrier) or duoderm they just take my word, they do not need a Drs order. The nurse orders it and sometimes it is here within the next 1-2 hrs. Pretty good considering the hospice we use is about 2 hrs away. If I need something I make one call and that is to Ryan's nurse and it is done.

I think when a parent is ready or has to make this step it is very important for that parent to decide what they want for their child and themselves and find a team that is willing to work with you. Here where we live there is a Hospice of Muskegon in our city or we have a Hospice of Michigan that covers the state. When I think about hospice I do not think death, I think, "support". They will be here for us even after Ryan passes away and I think that it is important to have that continuous support with the months and years that will follow. We meet with the hospice nurse and social worker once a week at this point, if we wanted them more they would be available. The pastor calls every couple of weeks. We have met with the hospice physician but she has no say in Ryan's care. Ryan's dr makes all the calls and final decisions. And I remember the words of Ryan's dr when I wanted to start this. He said, "Amy, I will be with the both of you until the end, if hospice does something we do not like then we will find someone new. You are not committed to them, they are committed to you". If any person ever wants to talk personally about this with me or ask me any questions, NEVER HESITATE.

How I have reached some of my decisions was not easy, but on the other hand I did not know who or how to ask. One day I just said, I want to know how do I do this, or what do I ask the funeral director when I go and talk to them. I actually have a list of ?s, yes I went funeral home shopping my friends this is SOOO hard and it may sound simple when reading this e-mail but my heart actually hurt and still does, this is not easy. But when I put my head down on my pillow at night, 600 lbs of pressure has been lifted off. I guess what I am trying to say is that I was able to make all of these decisions in the right frame of mind vs. when the times comes and I will not be able to see straight whether alone think straight. Amy Keiser-Magner

Afterwards, My Experience: It’s a good idea to check into protocols in your area for if a child dies at home before you’re in that situation if at all possible. As mentioned by Amy, in some areas, if you don’t have hospice involvement and you call 911 you end up with a swarm of people working on your child, questioning you, etc. There are no in home hospice programs where I live. There is a protocol, which is called a “planned home death” With this, you have a signed DNR form (a government form-in BC, Canada) and your Dr has agreed to or has appointed someone else (a nurse is fine, for us it would have been the public health nurse) to come to your home to “pronounce” the child. With all of this in place ahead of time all you need to do is phone the funeral home. Sometimes the funeral home needs a signed death certificate before they can pick the person up, or the Dr can fax it to them. In our area too, as mentioned by Amy, the person from the funeral home arrives in a regular looking car, a station wagon, no hearse, which made things easier-not much but a bit.

Talk to your hospice caregivers or whoever is going to be with you after your child dies about length of time that your child can stay with you after he/she dies. We were told (by the funeral home) that it really shouldn’t be more than 12 hours after death. We stretched it pretty close to that. Some people may want time with the child afterwards and have a time so that other friends and family can see the child too. Others may be more comfortable if the child is picked up almost right away.

This may sound really strange, but after she died Kayda was left on her bed and I slept (about an hour as she had died so late at night) in the bed in her room that I had slept in her whole stay at the hospice. In the morning when the new shift of nurses came on they all came in to see her and we stood around her bed stroking her hair and talking just as we’d done so many times during the preceding week. Now, that time and those images are very important to me. The chaplain finally insisted that it was time to call the funeral home, as it would take an hour for them to get there.

Amy also mentioned time and support from hospice caregivers after your child is gone. This is so important. Although we had wonderful special nurses during all of Kayda’s stay at CP, I felt really close to the nurse that had been on during the day that she died. Kayda had been so close to dying all of that day and the support of this nurse and the conversations we had that day were very important to me. Kayda died just a few hours after she went off shift and she was on evening shift the next day. I really wanted to talk to her before I went home but thought that the hospice staff would want me gone before then. No such thing!!! Dan went home to make the arrangements with the funeral home and I stayed. I spent the day in her room, crying, working on her memory books and talking to the staff. I felt so supported. I knew I wasn’t alone and that however I chose to grieve was ok. Once the nurse came on shift that night I was ready to talk to her, and be hugged by all of the next shift of nurses (I’ve never been hugged so many times in my life as I was those weeks just before and just after Kayda’s death) and then go home. The staff made sure that I knew that I could stay longer but it was time to face our house without her. I have been back once to visit with one of our nurses who had been away when Kayda died. As I walked up to the building I started to cry. Then I stopped myself and said, “no Barb, this was a happy place, Kayda had some wonderful times here”. Seeing the staff was very comforting but I did decline to go into Kayda’s room. That would have been too much.

Two of the nurses that we had been closest to at the hospice came to Kayda’s burial and memorial services. One was able to stay later and I brought her home to see Kayda’s room. These people had shared such an intense time with us that they were the people I had most wanted to be with afterwards.

I know that all of this is so hard to even imagine.

Other pages in this section:
What if?
What if: part 1: Your child's last days links
What if: part 2: Funerals
What if: part 2: Funeral links
What if: part 2: Eulogies
What if? Part 3: Grief and Loss Resources
What if? Part 3: Grief and Loss Resources Links
What if? Part 3: Grief and Loss Resources: I'm not a mother anymore.

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