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Bereaved Parents

For those who have lost a child.

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Latest Activity: May 3, 2020

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Comment by Kimberly Foernsler on January 14, 2009 at 3:00pm
Kory turned sixteen on March 25, 2007 and passed away on August 31, 2007.
You are correct and that's all I'm saying is what is right for me may not be right for you. I just didn't want anyone to read more in to what I was saying. I did everything I did out of love and Tanya did everything she did out love. That's all that matters.
Comment by Barb Aleman on January 14, 2009 at 2:00pm
Kimberly & Tanya; How old were your sons when they died?

No one is going to get mad at you Kimberly. You did what was right for your son and what's right for one child isn't for another. It would have been different if he could have said that he wanted the trach like Tanya's son did. I knew that if Trevor could talk he'd say a huge resounding NO!!! to the trach. He would have lost the ability to do so many of the things he loved. And, most of all he would have had to be suctioned a lot. Even if it was just in the trach he'd still be facing that thing coming at him.
Comment by Tanya Fleming on January 14, 2009 at 1:43pm
I don't think anyone is going to get mad at you for what you say, you did what you had to do. I wish Chris had not wanted a trach, but like you said you did what Kory wanted and that is all any of us can do. I did what Chris wanted and it was a hard road, so you did what was best and so will each parent who has to make these tuff decisions. You are blessed for your decision.
Comment by Kimberly Foernsler on January 14, 2009 at 1:36pm
Kory & I talked about the tracheotomy the November before he passed away. He had been in the hospital to get a CPAP machine. On our drive home (after he was released) we were discussing it and the fact that Kory had never been baptized. I told him that if he wanted to be baptized that I would figure out a way to get it done. Then we went on to talk about the tracheotomy and I told him that I didn’t feel good about him having that surgery (just my personal feelings). That was the one thing that me & my X agreed on. We felt like Kory had been through so much in his life that we didn’t want to put him through that. I told him that it was his decision and I would do it if you wanted me to. He said he didn’t want to talk about it anymore and we would discuss it later. Of course, I was trying to hold back the tears and he knew it. I guess he thought we had a long time before we’d have to make that kind of decision because the topic never came up again until August 31st and Kory was in a coma.
The hospital was great. They did have a sleeper back behind Kory’s bed. I was allowed to stay on it all night. They also gave a room down the hall that had a bed and bathroom. My daughter stayed in there all night. No one was allowed around his bed while they working on him because they were having such a hard time trying to get the tube in. Once they told us that we had to make the choice; we were allowed to bring as many people back as we wanted. Typically they only allowed 2 at time. At one time we had about 30 people surrounding Kory praying for him to go easy. We all said our goodbyes and were allowed to stay until he took his last breath. One of my X husband’s friends was in there making pictures of Kory. I couldn’t handle that so I had to leave. I waited in the waiting room until I was told that Kory was gone. Then everyone but me, my daughter, my brother & sister-in-law scattered. We stayed and made the remaining arrangements. I don’t regret not being in there when Kory took his last breath. I wanted my last memory to be of him saying “I love you too” because at that point he seemed like he was going to be fine.
Again these are my personal decisions. I don’t expect that everyone has the same views and I don’t expect anyone to not do something because of what I’ve said above. Each person is entitled to make their own decisions. I choose not to put Kory on steroids. He tried them and we didn’t like them so we decided that they weren’t for us. That was our personal decision. So please don’t anyone get mad at me for saying these things. I did what I thought Kory would have wanted me to do in the end.
Comment by Tanya Fleming on January 14, 2009 at 1:17pm
Both of you women did the right thing. The only reason my son had a tracheostomoy is that he decided he wanted one, even after all the side effects Drs. told him and I was very honest with him, we didn't even think he would make it through the surgery, so we said goodbye and if he woke up we would see each other again that day, but if he didn't it would be just alittle bit longer before we saw each other again. He smiled and said I will see you later mom, not worry.
He was my strength and I miss that.
Comment by Barb Aleman on January 14, 2009 at 1:09pm
Kimberly; That's horrible that they kept kicking you out of where he was as visiting hours were over. I was so relieved that they didn't do anything like that in ICU with Trevor. They even let us have a party in his room with 15 people one afternoon. I don't know if they'd have let us do that if he was in the main part of ICU where everyone is together. They even let me sleep in his room at night.

What happened with Kory and the O2 sats and blood gasses sounds like what happened with Trevor. He too fell into a deep sleep just as we got to the ER. He looked so peaceful I didn't know if I was going to be able to convince the triage nurse anything was wrong with him. But I said he was having trouble breathing and she put the probe on his finger. It said 51%. She was sure it was broken. They immediately got him to a bed and took it with the one hooked up to all the monitors and it was still just 60%. I don't know what his blood gasses were, they never told me the numbers.

Telling drs not to go further with treating your child even if it means losing them has to be one of the hardest things a parent can ever do. It sounds like you made the right decisions for Kory. How difficult that was I'm sure.,

When Trevor had his spinal surgery we'd all talked about what we'd do if something went wrong and said that we'd do everything possible to keep him going but would stop short of a tracheostomy. I didn't know at that point if when I was in the middle of a crisis and it was either a trach or losing him I'd be able to stick with that decision. I'm relieved that I was still able to put what was best for Trevor ahead of prolonging the quantity of his life.
Comment by Kimberly Foernsler on January 14, 2009 at 8:55am
Kory’s heart was fine. As a matter of fact when things where so bad that morning the cardiologist was the first to come into Kory’s room. Kory took a mild dose of Enalapril to help relax his heart every day. His heart rate was high and his BP was always so low. That morning when we arrived at the hospital for the feeding tube surgery Kory acted tired and sleepy. He had taken a minor fall 2 days earlier and had been taking Tylenol 3 for the pain in his ankle. I thought that had something to do with him being so tired. When we got back to the pre-surgery center and they took his oxygen sats. I remember plainly telling them that their machine was messed up. They took them over and over again and the levels were so low. We made them take ours and ours was normal. We finally put Kory into the bed and he immediately fell into a deep sleep. They thought we had overdosed him accidentally on the Tylenol 3 (something about his body storing it) so they gave him some sort of medicine and said that he would be awake in a matter of minutes. They kept giving him more and more of this medicine trying to counter act the overdose but it didn’t work. Kory wouldn’t even wake up. They called in a cardiologist and he checked everything out and everything came back fine. He said as he was leaving Kory’s room to have them check Kory’s blood gases. We did and they were off the charts. So much so that the doctor retested him 2 more times because he thought there was an error. The next thing I know they were bagging Kory and pushed me out of the room. The nurse had to help me to the waiting room because I nearly passed out. Once they got the respiratory tube placed they let me back into see Kory. He tried so hard to talk to us but they were keeping him pretty sedated. They never really got the tube in correctly and worked with it all night. They said he was so small and the spinal fusion made it harder. The next morning the doctor came in and said we would do the feeding tube surgery later that day. We were kicked out of his PICU room because visiting hours were over. Minutes later they called back to our room and said they had removed the tube and that Kory was upset and wanted me. I went back to his room and he could barely talk. I calmed him down and told him to rest and that we would be back in about an hour when visiting hours restarted. I kissed him and said, “I love you and you get some rest because they are going to do the feeding tube surgery later today”. He responded back, “I love you too”. I left his room to finish getting ready and about 20 minutes later I received an urgent call to return to his room. Kory was back in a coma and his blood gases were climbing off the charts. They said we had to make the decision of getting the tracheotomy or letting Kory go. We finally decided to let Kory go onto heaven. It was the toughest decision I’ve ever had to make. They told us that his little body was so frail that he might not even make it through both surgeries and he definitely need both surgeries to have a chance of surviving. I just couldn’t do it. I let my baby go onto Heaven that morning.
Comment by Barb Aleman on January 14, 2009 at 2:15am
For most of you was it your son's heart that gave out first? There's been an add on the tv channel I've been watching the last few nights about a man with DMD whose father has been working hard on fund raising (Jesse's Journey). He's 28. I'd hoped that Trevor would have been one of those living that long but his heart is what was the deciding factor when he got sick last month. I remember being devastated when I first learned that his heart wasn't working well, back when he was about 10. Then I knew he likely wouldn't live as long as other young men. But he'd been doing so well and each time he had an echo cardiogram done it was within normal limits on meds. His heart rate was always much higher than normal but other than that was fine. His last appt with the cardiologist was last February and he was fine. That's why it was such a shock when the respirologist told me his heart was too weak to continue supporting him. I don't know if it was already that weak when he first went on the ventilator or if the reintubation is what did most of the damage. That's when they almost lost him. But I remember when I left for my shower that morning (just before the crisis happened) that the nurse mentioned they were wondering if he was in congestive heart failure. That's the first I'd heard of that.

I've appreciated hearing other people's stories. It helps to know of the pain others have gone through.

One thing I noticed from the Friday morning reintubation on, was that when they suctioned Trevor they were suctioning up mostly blood. At first they thought it was just due to the difficult reintubation but I know by Saturday night and Sunday morning when it was still mostly blood they couldn't blame it on that. So there may have been more going on in him. My poor boy. I think it was hard on him staying on the ventilator the 3 extra days. But, I'm so grateful that he didn't die while I was having my shower. That would have been so much more difficult. I was sorry I wasn't there when he got into trouble but it would have been hard being asked to leave the ICU while they worked on him. By the time I got back and was aware of the crisis they'd already revived him. Really those last 3 days were for all of us who loved him. And they were to make sure that his lungs weren't going to recover from whatever infection it was that tipped him over the edge.
Comment by Barb Aleman on January 13, 2009 at 8:19pm
I haven't seen them either.
Comment by Kimberly Foernsler on January 13, 2009 at 6:55pm
Ok I can't read Mary's comments. Anyone else having this problem?
 

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