No Air

Often, at night, as I try and sleep I run through the memories from February. The memories are so terrible.....the cannulas in your neck, the shouting, the rain, the social workers, the ct scan, singing in your ear, holding your hand that whole night, daddy's call that I needed to get right back to the hospital, the bitchy heartless nurse, leaving you there for good.

I can't breathe.

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I Can't Even Bring Myself to Pray

I am just so angry with God. I feel like He let me down.

I am angry when friends post things like "God is Good" or when people post that God heard their prayers. Why didn't God hear ours? Why wasn't He there for us?

We prayed! I mean, we prayed so freaking hard for Travis. We prayed for his conception, we prayed for his birth, his surgeries, every procedure, every alarm, every night. We even taught him to pray. He'd fold his little hands and we'd say a prayer together. We prayed for more time....we prayed for a miracle. When Travis coded I sat in that conference room and pleaded with God. He didn't hear it. How can I not be let down?

Why is it that all the other heart mommas are being heard? What have I done that is so horrible that He didn't listen? I loved that boy with everything I had. What made his life not worthy of more time with me?

I can't stand to hear people tell me he is in a better place. Internally, I know that. However, it was too early. I want him here with me. I wanted to see him grow up and go to kindergarten.

I just can't do it...I can't bring myself to pray. I have so much anger.

Re-Posting Travis Tribute Video

Celebration of Life - Travis Tribute

I was able to upload the video that was played at the Celebration of Life for Travis. I wanted to let everyone watch it who did not have the opportunity to attend.

Click Below

Travis Tribute Video

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.