View Full Version : Jacob Update & Quality of Life Issue

01-29-2012, 10:38 PM
Jacob is continuing to improve, lower vent pressure and oxygen down to 30%:whew: His color looks so much better and he is breathing comfortably. They want to keep him sedated until he's on CPAP.

This whole experience and the responses I received on here really got me thinking about this "quality of life" issue and "level of intervention" issue. I guess this gets to the whole "Do not resuscitate" issue. DH and I have always requested all intervention to save Jacob and were surprised the intensivist even asked the question. He seemed surprised to hear that Jacob was "cognitively intact" - kind of hard to tell that when he's on a ventilator turning grey:mad: :hmm:

I guess I'm wondering if you have had to consider these issues and how you decided. I know each child and situation is different. To me, it seems so "judgmental" for the doctors to question what a child's quality of life is - I mean, yes, our children have challenges, but does that mean they don't have a decent quality of life? I "guess" if this past week was Jacob's normal existence, then we would have to reconsider our decision. But my sister pretty much summed things up when she said, "Quality of life? He just came back from a damn cruise!" :devil: That really put things in perspective. Yes, Jacob has physical challenges, but in many respects, he has a much better quality of life than DH and I had at his age.:hmm:

01-30-2012, 12:53 AM
He is a champion and has a lot to teach to those " know it all" doctors....

01-30-2012, 04:16 AM
Glad he's doing better Kim. I think many people look at the trach and think our kids are at death's door! That is so not true, our kids have a wonderful life, despite their limitations. I think you are right to question this. Hope Jacob is back to normal again soon, then you can show those docs what quality of life it! :inlove:

01-30-2012, 06:06 AM
Glad he's improving. We did have to make that decision. We based it on the pain our son was having. It seemed totally unfair to do things that would prolong the pain just to keep him with us. Karen

01-30-2012, 07:57 AM
All you have to do is look at the parents who care for kids like ours and that will answer your question. There are many children who are healthy and don't begin to have the quality of life our kids have because their parents are lacking. Jack can't move a muscle, talk, eat or breathe on his own, yet I'd say he has a pretty good quality of life. For me, quality of life = being loved and not being in pain. That said, it took me a long time to get to the point of acknowledging that Jack does have a good quality of life because, in the beginning, I wanted so much more for him. While I've never been in the situation you are in because Jack is rarely sick, I'm sure when the day comes that Jack is sick and in the hospital, I will be faced with the same ignorance you have faced and I an only hope that I have someone standing behind me like you have in your pediatrician.

It's so good to hear that Jacob is improving. Many :hug: Kim.

01-30-2012, 08:28 AM
I am really, really bothered by the hospital doctor's complete and utter disregard for you and for Jacob. To make assumptions about a patient without talking to the parents or nurses or home pediatrician is unacceptable. His assumptions have thrown you and your family into a tailspin in an already incredibly stressful situation. I feel for you because I know what you all have been through since Jacob's birth. It might be worth a letter to the hospital administration to let them know what's gone on. True, it is their job to work for the good of the patient, but it can't happen if they fail to do the other part of the job--gather as much information as possible to offer the best course of treatment. Stressing out the family based on an incomplete case history of the child is not helpful.

I am so pleased to hear that your little guy is on the mend, and I hope that he continues to improve. Hang in there and keep advocating for him. His quality of life is good because you have intentionally made it so to the best of your ability. Take care of yourself! Hugs!

01-30-2012, 10:21 AM
Thanks again everyone for your very helpful responses. I think we just have to continue to live our lives one day at a time and continue to advocate for Jacob, as WE see fit. Until he started school, he hadn't been sick in 3 years. His pediatrician said this is normal when our kids start school and there's no easy answer between keeping him healthy v. attending school to learn and socialize.

I think we are going to keep him home until cold/flu season is over to give him time to regain his strength. We will then have him complete the school year and enroll in summer activities to keep up with the socializing. He really loves school and has adjusted well with all his peers, making several friends, so we don't want to take that away from him.

Ann, you summed it up re: quality of life = being loved and free of pain. I think that's an excellent threshold. I know we don't have to worry about the first factor. It's the second factor that remains unknown.

01-30-2012, 10:45 AM
It is so true that doctors will make ALOT of assumptions based on what the patient looks like "on paper".

I also noticed during times when Max was hospitalized, the sicker he was, the more quick they were to treat him like a "case" vs. a human. As in, recommending procedures in a VERY nonchalant manner, that would NEVER be considered if he was more alert and interactive. It was so disturbing to me when I first encountered this, that in following hospitilazations I have brought along pictures of Max as a visual reminder that he enjoys a very GOOD quality of life outside of the hospital!

I hope Jacob continues to improve every day, and that he can enjoy the comfort of home again soon.

To me, I would not entertain the "what if's" until we get there...These set backs are huge and scary, but he can recover and he is still young with lots and lots of years ahead to get bigger and stronger.

I send love and hugs to you and Jacob and hope his recovery is just around the corner:hug: :hug: :hug:

Linnae's Mom
01-30-2012, 10:46 AM
I'm so glad Jacob is doing better! This is wonderful news.

Ainsley's Mom
01-30-2012, 11:10 AM
I think some doctors will see a very sick child, look at the diagnosis on paper and make asssumptions. They ought to know better. And they ought to be more careful considering their position. There is no doubt in my mind that Jacob has a great quality of life. As do many kids with "issues". People can be quite ignorant. Even doctors.

I'm SO glad to hear Jacob is doing better! I hope he's out of there soon and that that doctor has a chance to see him before he goes, when he's doing better, so he can learn a lesson.

01-30-2012, 06:55 PM
I think sometimes it's the doctors that are the most ignorant to how happy and amazing our children are. We had some real jerks in the icu that I thank God we never listened to.. They really should be ashamed of themselves . I'm glad things are looking up:)

01-30-2012, 08:15 PM
Everyone else said it very well.

And yes, we have been in that situation, as Paul suffered tremendously while in the hospital, of fevers and severe tachycardia and more (autonomic storms.)

Just today I was thinking back and it kills me to think of the hell we went through.

But in our situation, when it was discussed that we might want to stop intervening, I don't think the doctors or nurses were wrong to bring it up. His future *looked* bleak, and filled with suffering. But... it was also unknown.

We prayed a lot, and went round and round, and I could tell you of at least three different occasions when I know in my heart that God took control. One of those times, I had the phrase "Be a sign of contradiction" turning over and over in my head and heart, knowing our life would be hard, but askign God, is this what you want of us? It's a phrase I'd heard as a Catholic somewhere along the line. But where, I do not know. And I'd never thought of it beofre.

Heartsick, we went to Eucharistic Adoration to pray. And when in teh office before entering the sanctuary, there was a huge poster that said "Be a sign of contradiction."

Anyway : ) 2 years almost to the day that Paul got his trach, he is much healthier, and certainly suffers much, much less. (thanks to medication we had to fight really hard to get them to consider - I swear, they were just waiting for us to take him off the vent, and this medication changed his entire life.)

I hope it's ok that I shared this story. It's not something you discuss at play groups :o

But yes, a cruise with a loving family? I'd say that's a pretty darn good life!!

Oh, one more thing that did bother me - they thought that the news that he'd be mentally retarded woudl affect our decision. *That* bothered me. Just days before telling us this news, I sat down by his crib, and said in my heart, "I don't care if you sit in a wheelchair for the rest of your life, I will change your diapers and love you forever." It's hard for me to believe they thought his IQ would determine teh quality of *his* life... more like, of ours in caring for him. You canNOT find a smilier (or, honestly, more handsome) boy, when he is feeling well. And that is all that matters.

01-30-2012, 09:42 PM
Kim, So glad Jacob is on the upswing. Sweet boy!

The problem is that "quality of life" by its very definition is personal and variable from family to family. Only you can decide how much intervention you want and that may change over time, or maybe it won't.

Ignore the insensitive doctors and get Jacob healthy. That's when you need to sit down with your family and make some decisions. Talk about some scenarios. Put some definition down to "quality of life." Are there things that could change with Jacob that move the needle? What are they? Is it pain? Is it cognative ability?

I think I've written about this on here before (years ago) but one of the best things that Ian and I have ever done was write our living wills. These were done well before Parker and even before Griffin was born.

We had an amazing attorney who gave us a huge questionaire. It went through many, many scenarios. It forced us to think about "quality of life" in regards to ourselves. Now, what we want for ourselves might be different for our kids. Who knows.

Point is, it was tremendously helpful for us to go through that exercise together. There weren't a lot of surprises about each other's thoughts either when it came to decision making for Parker.

I advocate for everyone a similar exercise in a calm period (laughable in your life, I know!)

Take the stress the doctors have added to the experience here and use it as a force to think about these issues when life returns to normal. And then, make sure you let the doctors know their timing is a bit off, as is their rush to judgement about issues based on what they see on paper.

Are you at Mac these days?

01-31-2012, 05:47 AM
Yay for Jacob! Praying that he continues to improve, and that the Lord will continue to give you strength for the journey, and light to your path. :) Maybe his purpose in life is to teach the Drs a thing or two about life, love, and compassion.

01-31-2012, 09:10 AM
I haven't been in your position, as far as dealing with doctors in regards to this. We requested the DNR when DD was quite young, so we never had doctors making stupid comments about her quality of life. We requested the DNR because we felt it gave us more options, not less. I keep it because in the case that DD deteriorates quickly, I don't want some stranger in the mall calling 911 and having EMTs swarming us while I'm just trying too get her home so she can pass peacefully. I know that's an extreme scenario, but (sorry if this is TMI) I don't want to watch someone beating on my kids chest trying to bring her back when shes already too far gone. And that can easily happen without a DNR, because they are required to "do everything" even if you want them to stop. But WITH the DNR, if I want them to do this or that, all I have to say is "disregard the DNR, I've changed my mind". I've discussed this at length with the doctor who wrote it up. I made sure that this is actually how it works. I know other parents of severe CP kids who have chosen the same. We don't feel the DNR is saying we will give up at the first sign they need help and it's not saying we don't value their life. It just means that we get final say no matter what.

All that being said, really only parents are qualified to say how good of a life their child has. I've had a doctor tell me that she rarely sees a child in worse condition than my DD and if she didn't know better she would think she didn't have much longer to live. What she didn't know was that DD was having a bad day and doesn't usually look so miserable. Usually she's smiley and happy.

She's had her ups and downs. We had her on hospice at one point and the drugs we gave her to help her with pain ended up saving her life, so we took her off of hospice and kept the meds. Between age 3 and 4 she went the entire year without seeing the inside of an ER. She's had week long PICU stays that she bounced back from so quickly it's like nothing happened in the first place. So she can't walk or talk....she's HAPPY. If her health deteriorates to the point that she's miserable and in pain, no longer happy, and her bad days greatly outnumber her good days, I'd be inclined to let her go during a particularly bad pneumonia. But if she got pneumonia right now....you better believe I'd be sitting by her side while she's on the vent in the PICU.

Every illness she has I discuss the DNR with the doctor on the floor, sometimes with multiple doctors and multiple conversations. It helps for them to know exactly where you stand. They usually aren't trying to be obnoxious. After I have the conversation, I usually feel better about stepping out for food or even going home for a nap, knowing they know what to do should she have serious issues.

And I think it's important to understand that most doctors have never been in our position. I remember before DD was born I couldn't imagine what it would be like to have a disabled kid. My friend found out her son was deaf (otherwise 100% healthy!) and I was so sad for her and couldn't imagine how I'd handle it if it were me. All those feelings over the thought of having just a deaf kid! Obviously now I feel differently. LOL Doctors aren't seeing the good things. You can't imagine the joy these kids can bring you until you become close to one. And doctors don't usually get close, plain and simple.

01-31-2012, 09:45 AM
Thinking about you & your sweet boy, and continuesly praying for you all.:hug:

01-31-2012, 07:39 PM
I am going to be the voice from the other side so if that bothers you, please just don't keep on reading. I have been thinking about this post all day and just need to put this out there.
Paul and I went for several years fighting to get Keyan the best care we could find, and making sure that no stone was unturned. However, through all of it, each of us had this unspoken concern about her dying. It was a very weird experience. My heart would always keep fighting for her but my head kept saying "you may loose her, this can't go on forever like this." Through it all though NO doctor every mentioned anything about quality of life. They were all optimistic and always SURE that Keyan would be fine. At some point though, my heart was begging for someone to acknowledge what seemed to be so obvious to me...it was a very real possibility that she would not be with us as long as we would like.
Two years ago, we added a pediatric phsyiatrist (a rehab doctor) to our list of specialists. We had been warned that he was an arrogant a**, but that he was brilliant and we needed him in our court. He came over from another hospital, and the second time we met with us, he asked me if we had ever considered a DNR. He actually said, "Do you realize that your child may die if this continues?" I was never more relieved in all my life. Finally, I didn't feel crazy, I had someone validating what I already knew but that no one wanted to discuss. That one question has lead us to sign up with a pediatric early care team of Hospice (which is not end of life care but more palliative care/quality of life) and has given us the opportunity to speak about what no one wants to discuss. We now have the support in place to make sure that Keyan has the best quality of life, and that we feel completely comfortable with what is going on. I will never forget the several times where Keyan has been in absolute misery and I sat at the end of the bed wondering if we have let this happen. For me, I do not want to prolong something just for my selfish reasons.
End of life decisions are something that we would all rather not think about, especially for a child, but for us, we know there are certain situations that we would like to prevent for Keyan. It has allowed us the freedom to talk to our family about the reality of the situation and given us the o.k. to look at it honestly and search our hearts. In the end, we have never signed an offical DNR because things are very different depending on the situation, but all of our doctors, social workers, and the hospitals know what our wishes are in a very detailed way. We have a new appreciation for life and every day that we have with Keyan and really any of our kids. Quality of life is something that we mention on a daily basis because it drives so much for our lives. Keyan's teachers, nurses, and anyone else that she comes in contact with know that our one wish is that they help us give Keyan the best day that she can have every single day. Some of that is done in conventional ways, and some not so much!
That one doctor could have shied away from the discussion too but he didn't and I am so thankful. That one conversation led to several more with all of the doctors and hospitals that she visits, letting them know that this was a thought in motion and I no longer wanted anyone to shy away from the topic with us. My exact words were, "If you don't know why we have made this decision, please come and ask and than educate yourself on the options for families. This is something you need to be dealing with!"
Now, that being said, I am sorry that you were caught off guard and felt like your care was being questioned...I hate that. And again, our situation is different but ultimately, I believe that you will know what is right for your child if you ever are in the situation to need those types of decisions. The reality is that we don't know how long we have any of our kids, but it is just more in your face with our special kiddos. I always encourage people to have the tough talks with yourself and spouse/significant other because it is when we are the least prepared that it will catch us off guard.
My wish is that you did not find this offensive, please know that was never my intent. It just happens to be something that I am passionate about!

01-31-2012, 10:45 PM
Stephanie, your post is not offensive at all. No parent should ever feel bad for discussing, contemplating or considering a DNR for their child. Your story provides important information about what a DNR does and doesn't mean and that it's probably best to discuss it with our child's doctor well in advance of having to make the actual decision.

Thanks for sharing. :hug:

02-01-2012, 08:37 AM
I agree with Ann - very well said Stephanie.

02-01-2012, 10:11 PM
Steph, I've experienced and felt the exact same way.

For now we still have Olivia listed as FULL CODE because even though she's had it really rough, she has never not shown us that she is in this and will fight for her life until the end. Because she bounces back so quickly even from major events we will keep her full code because there IS great QOL being lived.

IMO she will show us the day when she is too tired to fight anymore and while it will break my heart, I will follow her lead.

02-02-2012, 07:22 AM
I just wanted to add, that what I explain to the doctors and nurses is that I'm ok with resuscitation if Charlie is slipping, but not crashing, if that makes any sense. If she just needs a little help...yeah, bag her, intubate her. If her heart stops...leave her alone!!! My main reason for this is because I don't want them to bring her back from an event that could have caused more damage to her body and/or brain. She can't suffer more damage, she just can't. I was trying to explain this to an anesthesiologist one time and he didn't get it...he just kept saying over and over "but during surgery the DNR is null!" It had him kind of freaked out. Then the doctor doing the procedure came over, asked what the problem was and I explained. He turned to the anesthesiologist and said "This mother is saying that should there be an event that would cause irreversible damage to the child, she does not want her resuscitated and considering the child is already severely disabled, this is a reasonable request to make." And everything was cool. The anesthesiologist was freaking because he thought I was saying he couldn't fiddle with the vent settings if her sats dipped. :rolleyes: There's such a HUGE difference in those two situations. It's so obvious to me I have trouble understanding why it's not obvious to other people :o

02-02-2012, 10:10 PM
:grouphug: Thank you so much for all of your very helpful replies to this sensitive issue. Stephanie, I did not at all take offence to your response. I am open to everyone's feedback on this issue, as I know each of our children, situations and outlooks are unique. This is the first time the issue was raised with DH and I, so it really through us for a loop.:eek: I definitely "get" what you are saying - I clearly remember during the NICU days wondering, "when is enough, enough?" and then wondering if I should feel guilty for feeling that way.......Jacob has definitely been through a lot of pain and suffering due to his premature birth. We had the "good fortune" of years of very good health, which gave us a false sense of security. With Jacob so stable for so long, it was easy for us to think he was no longer so fragile. I feel like we really got our heads kicked out of the sand.:cry:

I totally agree with Suzanne's advice. DH and I were actually in the middle of getting all our affairs in order, including setting things up for Jacob's care. So, this will definitely be something we will now address in our will, once things settle down. I think once this is all "squared away", I will feel more prepared, should this happen again.

On the bright side, Jacob was taken off CPAP 2 days ago. The doctors are shocked how quickly he has bounced back.;) The RT said this is a very good sign that Jacob was able to recover so quickly, given how sick he was. He is still requiring a fair amount of O2, but he's also still withdrawing from morphine and midazolam. He looks so much better!

Thanks again everyone for your advice and support.:hug:

Tate's Mom
02-07-2012, 02:01 PM
We have fought with many intensivisits through our journey. Really, what other kid is at "baseline" while in the PICU? It is infuriating. I don't think they always know what to do with a kid that they cannot "make better". Through our stays our little man finally melted most of the intensivists' hearts at our ICU and I think really taught them some important lessons. Those that refused to learn, well there are people in every profession that are terrible at their job.

Quality of life - it is personal and there is no wrong way to examine it. We received our little's guys terminal diagnosis at 13 months. We immediately began working with palliative care. We never gave up on him, we never let the "two to five" be definitive (he was not a bag of groceries) but we weighed it with every decision we made. We had a clear definition for us, and every little bit of technology that we added we really, really thought about. What was the impact to our little guy and his dignity. I'm glad we did but I'm not sure it made any difference other than in our sanity.

In August our guy had a terrible pain response to his botox. (Don't worry about botox, our guy always hit the extreme odds). We thought we were going in just for some supportive care through the pain. While we were in Tate let us know he was tired. His body gave us all the signs. His eyes gave us all the signs. He called for me when I was out eating dinner. We knew. Maybe working through palliative care gave us the strength to let him go without his body having to fight against the machines. Maybe we would have made the same decision without it? All I know, is that they worked their butts off to give him and us dignity through the process and I love them for that. We did what was right for our family by slowing down and listening to our hearts, prayers, silence at every turn. You will do what is right for yours.

Quality of life is very easy to see, you will know instantly when it is going quickly. I hate the doctors for bringing it up so callously sometimes, however I am thankful that; 1) we now have medical technology to help our little ones thrive; and 2) we have further progressed to the point we can choose what is right for our little one. Sometimes life is to precious to deny and sometimes it is to precious to not let it go.

I am thinking of all of you that ever have to make this decision and hope it goes as beautifully and perfectly as it did for us.