The Meeting

This past Friday at 3 Roger and I met with the surgeons to review the findings of the autopsy report. It was an excruciating 2 hours that we were hoping would bring some sort of closure for us. That didn't happen.

Basically, all they have are theories. Unfortunately, there was no clear cut reason that was found as to why Travis arrested. Everything seemed to be going so well. The surgeon spoke and told us that during rounds that morning (the morning he arrested) Travis was on course for extubation and everything looked good. After rounds, he went to surgery and that afternoon he was pulled out of surgery and notified that Travis was coding. After discussing everything and reviewing the reports, there is speculation that the timing of the extubation was unfavorable. The previous day during Travis' 10 hour surgery he was having trouble oxygenating and usually they wait a bit longer to remove the breathing tube in such cases.

We discussed several unsettling concerns we had with his care and what went on that day. He addressed them honestly and sincerely. He was taking notes on specific things that we brought up and we can only hope that some good will come of our comments/concerns. Dr. Lamberti looked visibly upset during this meeting and he just kept telling us that the hard part is that they make life and death decisions every day. He said that most of the time, their "calls" are good....sometimes, there are judgement calls that don't pan out. The decision to extubate that day was a dicey one. He is still quite angry about this whole thing and he again said that if this happened more often he wouldn't be in this field. He said that everyone involved with Travis' care that day would like to take it back. All I could do when I heard that was hang my head and cry. We ALL wish we could take that day back.

It is soooo painful to know that human error could have caused Travis' death. Our initial reaction was one of anger. Honestly though...I feel in my heart that everyone was making the best decisions that they could at that time. The part that is so troublesome is that I don't think that ICU docs (who make the calls on meds/extubating/etc.) had the big picture that day. Lamberti did...and he was in surgery.

One interesting thing that Lamberti said was that of all the families he has dealt with (some 7000) and especially parents like us who are uber involved....he said that we handled the events of that day with a lot of grace. He recalled my conversation with him about organ donation and my dad being an organ recipient. He mentioned that he was just taken aback at how well we handled such a horrible situation. We tried to adequately thank him but just ended up hugging him and fumbling for words. We still and will always have the upmost respect for Dr. Lamberti...he gave our son life and, as I've said before, gave us 16 wonderful months with our sweet boy.

We don't feel like we should share everything from that meeting but just know that the bottom line is that Travis' death seems to have been from a combination of bad judgement calls that day. How are we to find any closure in that? I think we are feeling worse now then before. We are left with MORE what if's and a lot of guilt.

Strength

My sweet friend Laura said it best ‎"If you wanna label something as "strong" in this hell....it is the energy it takes to play normal life, the energy it takes to hold in everything until you are in the right place and time... that takes so much energy (and it slowly kills you as it waits for your attention)."

Brown Bear, Brown Bear

Trav,
I pulled out a few books from your room to read to Addie tonight. I read her Brown Bear.

"Brown bear, brown bear, what do you see?
I see a red bird looking at me.
Red bird, red bird, what do you see?
I see a yellow bird looking at me."

The top of that book still has your little bite marks. As I read, I couldn't help but picture you listening so intently and then turning the pages at the right times. Some nights you were anxious and tried to turn them too quickly. Just before you left us, you were learning how to make some of the animal sounds. You thought it was so funny when I "neighed" for the horse and "quacked" for the duck. I would give ANYTHING, ANYTHING to read that book with you again. I miss you so much little man. My heart just aches for you. Tomorrow is going to be really hard. I just hope that there is a reason why you were taken.

By the way, I am still waiting for you to come visit me in a dream or send me a sign. Please baby boy...I need it!

Loving you to the heavens and back,
Momma

Physical Pain

I suppose no one would ever really know just how physical grief is unless you experience it to this extent. Most days it is a chore just to peel myself off of the mattress. I walk around throughout the day zombie like. Even when I sleep well, I am tired. My eye lids are heavy. I am overeating....which doesn't help the situation. My clothes feel tight and I feel worse about myself. I have headaches and feel sick to my stomach. Loud noises/beeping/whistling sounds scare the shit out of me. Wish I could just escape this for a day....even for a minute.

Thursday at 4 we meet with the team at Rady's to discuss the autopsy results. We are hoping for a clear cut reason why this happened. I am fairly confident we won't get that....nothing about HLHS seems to be clear cut...so, I won't hold my breathe. I am just not sure how I can live this life without a "reason" why this happened.

Complete

Had dinner with some friends tonight. We were discussing the topic of having more kids. Everyone was sharing if they were "done" or not. One of my friends mentioned she thought that they may be done even though her family "didn't feel complete". I keep going over that in my head. My family WAS complete. Sure, we can have more kids but we will never be "complete" again. God I wish I could change things.

Touch

I've never been a real touchy feel-y person. I've always hugged. I am a "hello/goodbye" hugger. Lately, however, someone's touch makes me cringe. It is a strange feeling. It started happening when Travis was born. People wanted to console me so they placed a hand on my back or my shoulder. It didn't feel right. It felt forced...it still does. I want to jump out of my skin now when somebody touches me. It is the strangest thing...I don't even want to hug my husband. I wonder how long this will last. Another side effect of grief/stress? I suppose.

Roger, Addie and I went to a Celebration of Life that was hosted by Children's Hospital on Wednesday. It was the first time we had been back since the day we said goodbye to Travis. It was very difficult. We didn't even want to go...but we wanted to honor Travis. Only one other family showed up. The family lost a beautiful four year old little girl. Her sweet picture hung next to Travis'...it was heartbreaking. So much pain and sadness. They lit a candle for each child lost in the last few months...19 of them. 17 candles lit and no one there to see it. I am glad we were there. I will take every opportunity given to honor Travis...no matter how difficult.

On the way home we ran into the social worker that was on duty the day Travis coded. Prior to that day we had never met her. She helped us through that day. We chatted for awhile about how we were coping and how big Addie has gotten. She told us how upset everyone was at Travis' death. Everyone was angry. It shouldn't have happened. She said that in the 15 years she has worked there she has never seen them (the doctors/nurses) try so hard and long to revive some one after cardiac arrest. 2.5 hours is excessive. I think we all just wanted him back so bad. She also mentioned that a staggering 85% of couples who lose a child end up divorcing. I can't imagine...Ugh! I am just sad about that. I can understand it though....there are so many emotions....a lot of them are ugly. At least we are working with people to help us figure out how to get through this together. We are all we have left and we need to be there for each other...and for Addie.

I am drained.

Everything is Difficult

It is difficult to get up in the morning. It is difficult to focus. It is difficult to have patience. It is difficult to be at work. It is difficult to be home. It is difficult to breathe.

Everything is difficult without you.

It still just doesn't seem real. A nightmare of epic proportions. Why did God choose us? Everyone says that God picked the right parents....I suppose that is true, I mean I wouldn't want for anyone else to have beautiful you. I just wish he hadn't chosen you to be sick and to only visit this earth for such a short time. I guess He didn't realize just how hard we struggled to have you. I guess He didn't realize just how much we needed you. I guess He didn't realize how much you were loved. I guess He didn't realize how broken we would be when he called you to Heaven. He must have thought we were strong. I suppose I did too.....before all this.

Every night I go to bed wishing you would visit me in a dream. I just want to see your sweet face. I just miss you that much. I wonder if you are walking yet. You were so close. We thought for sure it'd be any minute. I wonder if you can say "dada" yet. You know, your daddy really is so sad he never got that gift from you. I signed his birthday card with a note from you. I wrote "Daddy, I really miss you and I love you so much. Love, Buggy".

We need to get some professional pictures taken of Addison. I've been putting it off because we'll need to take a family portrait and I just can't without you. How do we do that? Shit....just the thought of it makes me physically sick. I just need to borrow some of your strength Trav. I am falling to pieces.

Everything is difficult without you.