Returning Newbie

[alwaysbelieve]

So I was here a while ago...once...of course because I suffered a brain injury in 2007, I don't remember being here before...oops

Although the loss of my son is ever present, the recent loss of my pet has superpowered my grief. So, here I am.

I am a mom of 5, grandmom of 1. I have 3 boys, 2 girls...in that order...Ryan (25), Adam (forever 17), Alex (20), Bria (18), Brittani (16).

Adam moved to Heaven 8/29/05. His story is long, medical and loving. Here is probably (I hope) the only place where there are others who understand.

Adam was born with a series of life-threatening heart defects that went undiagnosed for 2 months. When he was diagnosed, he was also batting a serious respiratory infection. Once he had begun recovering from the infection, cardiac surgeons talked about 'options'. Adam was not quite ready for his heart to be corrected, he was discharged from the hospital to return 2 weeks later for more intense testing that revealed he would need surgery to prepare his heart since diagnosis was long overdue and his heart was unable to compensate without surgical help. That surgery was scheduled for the next day. There were complications during the procedure and accommodations were made. Nine hours later, he was in ICU holding his own. That changed at 5:54am. Adam went into full cardio-respiratory arrest. After a month in the hospital, we discovered he suffered a stroke as a result of his arrest. He needed a nasal feeding tube to reduce the wear & tear on his heart until he was fully corrected and the arrest caused the surgery that was just performed to fail.

Adam required two more heart surgeries to complete the correction. Those both went well. Over the next few years, the lasting effects of the stroke became evident. Adam was a quadriplegic. He would ultimately require a permanent feeding tube.

Fourteen years after his heart was corrected, Adam had been through twelve more surgeries, mostly for ease of movement/comfort as his muscles were so tight they were contracting. However, there now was a new development with his heart and a discovery from the stroke. Adam developed a coronary artery aneurysm. He would not survive another heart surgery. This was now a waiting game. The game changed with the discovery of Adam's central apnea. The area of his brain that was damaged from the stroke was now 'forgetting' to tell his body to breathe. Adam would have upwards of 50-800+ periods of apnea each night...some during the day as well but they were harder to detect. I asked what the timeline was. 3-5 years. This was 2001.

July 2004, my oldest son joined the Navy. We traveled to TX to see him in Oct. 2004. He came home for a visit in March 2005, in part because he was headed to Iraq. I am so very thankful he was able to visit, as that would end up being the last time he saw the bother he was so very close to.

On August 26, 2005, my kids went for visitation with their father, returning on August 28th. August 29, 2005 was my younger kids' first day of school. They never made it. I was able to have private duty nursing care for Adam so that I could tend to my other kids. They each had the code to open the door and were scheduled to start at 6:00am. At approx. 5:50am, Adam's monitor began to alarm. (I had been sleeping in Adam's room on a futon, but we were building a house that would allow my room to 'overlook' Adam's, so I started sleeping in my own room a few weeks prior with a camera pointed at the monitor so I could keep watch). The numbers on the monitor showing Adam's heart rate and oxygen levels were bouncing between '0'/'0' and actual normal numbers. Knowing Adam's muscle tone and playfulness, it was logical that he had the monitor clip on his finger all kaddywhompus, so it was intermittently reading. The nurse would be here in a few minutes & I needed to get up with the kids...Adam was awake (I could hear him) so I dozed for a minute. I heard the door chime as the nurse came in. Moments later, there was a knock on my bedroom door. The nurse thought Adam 'didn't look right'. She was right. I called his father to let him know I was sending Adam to the hospital. I then called my parents to let them know and see if they could come to get the kids off to school. My next call was to 911. They were on their way, so I went upstairs and woke my other kids. I told them they needed to get ready because I was taking Adam to the hospital. I got dressed and made my way back down to talk with the EMT's. I gave them Adam's history and DNR paperwork. They stated they were going to check him out a bit before deciding if they were taking him to the hospital. I went back upstairs to check on my other ones. Made the updating phone calls and headed back down. The EKG was abnormal and they were concerned enough to head to the ER. (side note: Adam's EKG was ALWAYS abnormal due to his heart defects/corrective surgeries-so I was not overly concerned). My thought was headed to a recurrence of a GI problem that began the day his brother left for boot camp and had mildly re-occurred a month prior to this. My other kids were 13, 12 and 9 and with another quick call ensuring one of my parents was en route, I was comfortable enough to leave with Adam. I returned to his room in time to carry Adam from his bed to the ambulance stretcher. They asked if I wanted to ride with them. "Will I be in the back with him?". "No, Ma'am, you have to sit up front.". No thank you, I will follow. The nurse offered to drive as anxiety was getting the best of me at this point. I kissed Adam. Told him I loved him and to 'Stay Strong'.

We did not 'follow' the ambulance. I didn't want to see in the back on the way, so we took a different route. Adam's pediatrician was local, but his specialists/specialty hospital was a 3-1/2 hour drive away. I matter-of-factly informed the nurse that when we arrived at the ER, they were going to tell me they wanted to helicopter him to his specialists as they have done before. I followed that with "But I am not going to allow that. We can manage this at home. We have managed much worse." He was in the hospital for 4 weeks when this first started. I could not be 3-1/2 hours away from my other kids for that long and they needed to be in school. I had spent a LOT of time away from them (and a lot further) with Adam in the hospital, this time, things were going to be different. Things WERE different.

When we arrived, the ambulance was already there. "May I help you?". "I'm looking for my son, Adam. He was just brought in by ambulance.". A few minutes after she left to find Adam, she returned, informing me the doctor wanted to see me. I immediately looked at the nurse. "See?? They are going to transfer him.". We were escorted into the ER. There, right there, in the middle of the Emergency Room, the ER doctor (I guess that's what I have to call him, although a few choice words come to mind) said "I'm sure you heard what happened on the ambulance." Uhhh...."No"...."He didn't make it. He died on the ambulance."

I hit the floor, the contents of my purse being wildly scattered across the emergency room floor. Adam's nurse & one of the ER nurses assisted me up and walked with me to the curtained 'room' where my son was. He was still. He had a breathing tube in his mouth. He had a DNR. There was to be 'No mechanical ventilation'. This couldn't be right. He HAD to be still alive. He was so very still. No up-and-down chest movement. No blinking. No movement at all. He didn't acknowledge I was there. Was he that mad I sent him to the hospital??? No. He was simply gone.

I knew the most difficult task would be finding my son in Iraq. There was a war going on and my son was in the middle of it. Knowing before he left for boot camp that Adam's health was precarious, I had asked how to get a hold of Ryan in an emergency. Call the Red Cross. I had saved the number in my cell. I went outside the ER and made that call. Then I called my mother. "Tell dad to pick up the kids and meet me in the ER. You need to come to. Adam is gone. Please don't tell dad, I don't want the kids upset on the way here. Dad can't handle that. I will tell the kids and Dad when they get here. Just call him and come.". Then I called his father. Is that pitiful that his father was 3rd on the list? I figured Adam was next to last on his, so...so be it. I made a few more calls to my closest, dearest friends and went back inside.

A short time later, my youngest kids arrived with my Dad. Then I think my mom, followed by Adam's father. Could be the other way around, it's kind of a blur. Since we were half-expecting this, we had a funeral home in mind, so the hospital contacted them. They brought in a cart with some danishes, coffee, juice and water. After about an hour or so, they moved Adam into a real room. His father and I stayed in there with him until the funeral home came. My parents took my kids home. The nurse hugged us and left. My ex and I headed to the funeral home to work on arrangements, then went down the street to the bar. When I got home (early evening) I again called the Red Cross to find out if they knew anything. They didn't. I couldn't sleep. My best friend (who had come to the ER but left when my ex and I did) had come over to stay with the kids when she left the ER, stayed the night with me. She was concerned to the point of calling my doctor the next day. Apparently, anxiety and grief were overtaking me and I would benefit from some medication enhancement. Again, I called the Red Cross. Nothing. I called again that evening. Why do they not know anything yet??? "Ma'am, we are in the middle of a crisis here." "I know, we are in a war. My son is there & you need to find him." "Have you had the television on at all since yesterday Ma'am?" "No. My son just died...I have not really felt like watching TV, thank you." "We have had a severe hurricane hit LA. Hurricane Katrina has caused a lot of damage." "So I will watch some news and you/someone will call when they find my son??" "Yes Ma'am." I heard from my son the next day. They had told him about Adam when it was the middle of the night here and he was en route to Kuwait for a flight home, so this was his first chance to call. I heard from him again several hours later while his flight was laid over in Denmark or someplace that cost $800 for a collect call.

My oldest son made it home. We took all the kids to pick out the flowers. Had the visitation and the memorial service. Laid my son to rest in a nature trail at the cemetery (a place we chose some time beforehand). Life has taken on a different meaning. An emptiness. A void. Guilt. Memories. Pain. Most days I don't even want to be here anymore. I have to be. I have other children who need me.

I'm sorry this was so long, I didn't intend it that way when I started.

[westleysmom]

I am so sorry for your loss of Adam and all that happened. My only son Westley died in his sleep January 13, 2010, at a friend's house. I am not as long on this journey of sadness as you. It is long and hard and unending. I found this site that summer and have been here off and on ever since. I don't post as much as I used to, but come and read and keep up with friends that I have made here that have also lost a child or more than one child. Mostly on the Loss of Adult Child thread, which is the most active and all are accepted, even if we were not lucky enough to have our children long enough for them to be "adult." I hope you will come there and post, as it helped me so much. How are your other children? Is your son out of the service now? I hope they are doing okay. Many people believe that you "get over" the loss, but we only learn to cope with it as best we can. My heart to you.