The unknown

After being in PICU for one month today and finally off ALL sedations, my son can finally wake up, speak, walk, move, look at me and recongnize me… RIGHT??? Is it to much to want things to go back to normal? To know what’s the outcome of my baby having to endure such pain and suffering with surgery, enduced coma, trachea, everything and now finally the moment for him to wake up and still a wait and see game as the doctors put it! He is moving more but not purposely or on command, he opens his eyes just a little where before he got off the meds they were fully opened, he is less responsive now where just last week when we asked him questions and to respond by blinking his eyes or squeezing our hands he would! It’s been four days since they took him off sedation, am I expecting too much too soon? Am I reading too much into to it? Paranoid? I just wish someone could tell me “Hey it’s all going to be just fine! Your son will walk and talk and recongnize you and give you hugs and kisses and tell you he loves you!” but I know the crystal ball isn’t working at the moment and patience is the key! So frustrating!!! I am here holding his hands and looking into his eyes telling him I love him while wondering if he sees me or hears me or knows who I am? My son is alive and I am forest grateful to God for that!!! Am I being unfair to want my son fully back? Fully restored? To want to hear his voice or know that he hears me or sees me? So mad at myself for even worrying about everything instead of just being grateful and take as it comes! Is it wrong of me? Is it normal to have been doing things before coming off sedation and now not as much? What can I do to help him? God help???

I completely understand how and why you feel the way you do. I’ve watched my wife and son each go into multiple brain surgeries and I’ve thought the exact same thoughts as you. It is not an easy path. Lean on your family and friends and we here at the AVM site, so that they might help you in your journey.

My best wishes for all of you.
Ron, KS

I’ve not been where you are as a parent. I’ve only been where he your son is as a patient. I will tell you what my husband told me about my recovery. It was often 2 steps forward and 3 steps back. My husband had to stop getting hopeful when the doctors told him something good was going to happen. They tried to remove my breathing tube 6 times before I was fully able to breath on my own. Each time the doctors would tell my husband that the tube was going to come out, only to have to tell him it didn’t work. It would crush him. There were days that I would be responsive only to be unresponsive the next day. There were days that I didn’t recognize anyone, and then days that I did. It is completely natural for you to want things to be back to normal and for your son to be well and believe me I understand the frustration of not being content to “take it as it comes” and just be grateful for survival. I experience that more often than I don’t sometimes. And while it is very frustrating, it really is just one day at a time. Every person recovers differently and doctors cannot tell you for sure what’s going to happen. I can’t imagine how difficult it is for a parent to watch your child go through this but you’ve got to be patient. It can take a while for things to progress and to see improvements. It will come, painfully slow sometimes, but it will. Let us know how your son is doing and you try to stay strong. We are all here for you!

Thank you! First let me just say God bless you and your families!! We are now being told to prepare for taking Chason to a Chronic Care facility, they have showed us how to bathe him, change his trachea, an clean it, it is like they are preparing to release him into our care! I’m freaking out and as much as I want my son to come home and life to be back to normal, I am afraid!! I have two other little ones and I know at home he would not get the 24 hr care that he needs! Plus why would the doctors be talking about taking him home or to another facility then at the same time about how rehab will have major impact on his abilities!!! My son isn’t ready to walk out of here! He isn’t done with his healing to be already checked out like nothing just happened to his brain!! Why tell me everything is looking good, surgeries have gone great, all numbers are looking good, everything is always positive but his reactions to anything!!! While under sedation he was more responsive than now when it’s time to begin waking up!!! I hear myself think and I sound like a cold person!!!

Hi Jana. Of course, you are scared for your son now. I also know you will do whatever you have to to help him get well. It may not seem like it but trust me you are still in what I call the early days of recovery yet. Your son’s brain needs more time to heal. Please look at my profile page…I had a massive bleed and recovered fully. I will be praying for you.

Hi Jana. Odds are that your son CAN hear you right now, so keep on telling him you love him! Talk about the people he knows and the normal things you usually talk about with him–this will help.

Like Barbara said, this is the early days of recovery, even if it seems like others might be recovering faster. My husband had a bleed as a teenager and was in a coma for weeks afterward. After a lot of rehab, he went on to college and graduate school. From my experience with all the subsequent surgeries (his original one was done many years ago, before MRIs even, so the later surgeries were a matter of using new technology to finish what couldn’t be done at the time of the bleed), I would say to try not to worry about what’s coming next; it drains the energy that you want to spend on making sure your son is getting what he needs right now.

Make sure you ask the doctor those questions you raised about your son’s transfer, now that they’re talking about transferring him to chronic care. It’s your right to know how chronic care will be different from hospital care, why the doctor thinks this is the right time to transfer him, and whether there are any alternative or supplemental kinds of rehab and care.

I’m wishing you and your son the best.