First time writing here. Not sure what I'm looking for except to vent and maybe a revitalization of my hope which is dwindling quickly.
My son, who is 25, started seizuring on Nov 13th, at that time for no known reason. After 2 full days of waiting with no answers, they finally found an aneurysm that had a small bleed, and he was sent to UNMC in Nebraska for treatment. Before I could even drive there, they had him in surgery, clipping his aneurysm. Things seemed to be going well, he was off the vent by Friday evening, he was moving around, talking, eating and other than his short term memory, things were finally starting to look up for him. The only downfall was it seemed that my being there made him more agitated as he constantly was demanding I take him home, get him out of there, trying to get out of bed and just restless overall. However when I would leave, other family members said he settled down and was better. Thus I made the very difficult decision to stay away until they removed the drain, as I care more about my son resting and healing, than me being at his side. They began raising the pressure on his "brain drain" as the ICU nurses called it, and it went well til yesterday when he did not tolerate the clamping of the drain. When I called this morning they were gonna try again but said they were also running some tests. Half hour later I got the call. They had to change his "brain drain" and place a new one, as well as lowering the pressure back to its starting point while they treat his meningitis. Now I want to be clear, I am happy with the care he has received, this is not a rant against the hospital. My son has been very restless, and he pulled apart his tube 3 times "just wanting to take a bath." Its a rant for me. I'm angry, scared, frustrated, and just about ready to curl up in a fetal position in bed and turn the world off. I am bombarded with questions and phone calls, and there is no one else to field them, and it is a constant reminder of his precariious situation. If there are any words of wisdom from others who have dealt with a similiar situation, now would be a great time to share as I'm just about at the limit of what I can take.
Turn the world off and rest. It's okay, really, you are allowed to. My husband almost lost it when I was in the hospital and he had our 2 year old at home with him, truly dependent for the first time, alone. It's okay to take care of you, really. Your son needs you to. And it's okay to throw a few plates at the wall at the unfairness of the world and this. You're a mom and you love your son, you're doing what's best for him. You'll go through the four stages of grief -- it's normal. Allow it. Rant, yell and cry and let it out. Then sleep. When you wake up, set up either a master "text" list or a master "email" list. Instead of calling everyone, give everyone a daily update through your master list so you can function without fielding a million calls a day. If you have faith, try to get on as many prayer lists as you can, for strength for you, and for healing for your son. If you're an artist, create. If you're a chef, cook. If you're into yoga, stretch. What I mean is whatever outlet you use, use it, because now is the time that you need the known.
Hang in there, and vent on when you need to here. The people of this forum are pretty good about listening and very good about being non-judgmental which we all need now and again.
You came to the right place to vent. I am a brain aneurysm survivor. My fiancé and children could tell you stories about when I was in ICU after my one of my aneurysm ruptured. The last thing I remember in Feb was talking to my friend on the phone. They tell me I wasn’t in a coma & that I talked to everyone in the room. I also was agitated at things & ran my tv controls on my bed telling them I was working & had to get this done. I was thinking the controls were my mouse at my work desk. On March 1st I opened my eyes and started asking where I was, how did I get there etc… When the nurse told me I tapped her and insisted that she was wrong. I have had a very good recovery. I have had some issues with my eyes due to the blood collecting behind them. Recovery is still in process. Take one day at a time & celebrate each small step. We will all keep your son in our thoughts and prayers.
hi Nurse! my heart goes out to you- i was in your sons shoes 3 yrs ago, so sorry for your TEMPORARY loss - he will be back but it will take time and i imagine much patience. He is confused and in shock, denial. i remember geting angry at the phsych lady and asking her to leave, she would ask me the same questions everyday,luckily she left since i was having a bad day with a headache and totaly exhausted. Being in the hospital i couldnt get any quality sleep. Please be patient- early on words had little meaning then later sentences were tough. Even now multiple conversations are difficult and can't stand multiple sound sources- like someone speaking when im watching tv or a radio and a distant tv. i totally agree with Tara- take care of #1 as he will be healing automatically- you will need much strength and fortitude. Many times the caregiver is mistakingly the recipient of vented anger- he doesnt mean to it just "happens. i think hospitals should do a lot more in this area and our government should be funding education & resources for caregivers - why not show a short video as we wait 45 min for the dr, i am sorry im starting to vent-hang in there it is darkest before the dawn-things will improve. Feel free to write, ask questions or even vent we are here 24/7. We'll keep you & yours in our thoughts & prayers!
Strangely I took all of your advice. I called in sick to work today. Unfortunately I am dealing with a cold on top of everything else.
I'm home taking it easy. That was the easy part. I sat and thought gee what do I do for an outlet. It has only been a couple weeks but it seems a lifetime ago I took the time to relax and destress. In the end I remembered how I dealt with the loss of my father, who was only 60 when he passed. For some reason when he passed I wrote a poem. Not much of a poetry reader but it seemed to help me express what I needed to. So unfortunately for all of you thats what I did this time, and here it is.
I put a little angel in my window today, It seems kinda silly, but it lights the way home for my son and on that day I'll show him the angel and together we'll pray.
I'll tell him how tough it was to pray that my spirit really dipped low on that day. But that little angel light seemed to say "Don't give up, I'm on my way"
So I hung her there though most don't know how I cried with her in her little glow and prayed to God to look over my son, I asked as a mom, for my son so young.
My son is still sick and I continue to pray and that little angel sits there on this day and continues to light my spirit and my way to find my knees, and to God I pray.
Gosh I have tears in my eyes...I love the poem you wrote...and glad you took the day off...you must take care of YOU in order to take care of your son...remember "one step at a time"...the littlest improvements can mean the biggest when dealing with the brain...God Bless you both ~ cyber~prayers ~ Colleen
little angel is right! Don't give up, great poem! so good to see you sharing- thank you so much, keeping you in our prayers for strength & fortitude, and son for supernatural healing. Please keep in touch- we care!
(Just read the poem you wrote..It is awesome--got tears in my eyes!)
I was in a predicament in 2006, aneuyrsm leaked and I was in a coma for about 6 weeks...I had so many different proceduees done to me I'm told, and I've got plenty of scars to go with them...They really didn't think I'd make it thru the ordeal....told my husband that IF I awoke from the coma that I'd have to relearn how to walk and talk again and be in a rehab facillity for a year or so...Had to be ventilated, I awoke with a trach in my throat, tubes everywhere, had a shunt in my head...but to everyones surprise, after one week of being "awake", I told my doctors that I'd be best off recovering at my home--and I left that place (no rehab facility) and I was still "me". No loss of memory (Other then the weeks in the coma), I had slight weakness on my right side (Where I found that computer games were my answer to increasing my strength in my right side) . My husband went thru hell during my hospital stay, very much so infact, like you are going thru now. I also was in constant movement during the coma, I guess thats normal in this situation but I'm sure very disconcerting for you...I know its a very difficult time for you and I'm so glad to hear that you were able to take some time just to "be"! One thing that is wonderful is, the people on this website are truly remarkable folks, and super helpful. If you've got questions, someone will answer--infact probably a lot of "someones" will, and the prayers coming your way during this insane time in your life are many .