10/5/09

3 Months. And, no answers.

Today marks three months.

Three months ago, we woke to discover Matteo Tate dead in his crib. He was just short of 18 months old. He was fighting a fever for the approximate 30 hours before his death.

I hoped with all my heart that we would have had an answer by now as to why Matt died. But, we don't. And, that I can assure you is a very, very difficult thing to swallow and understand. As his mother, it is gut-wrenching. It makes me physically ill at times. It makes me cry. It makes me angry. It makes me feel completely vulnerable to accidents of any sort, and death.

The really sucky part is that the coroner/Dr. J is about to close the case on Matteo's case. I’ve spoken with her twice in the past two weeks.

She went as far as sending Matt's organ/tissue samples to Stanford for review by a world-renowned pathologist. He agreed with her, in that every one of Matt’s organs (heart, lungs, brain, spleen, liver, kidney, etc.) looked very healthy. Matteo had slightly enlarged tonsils, indicative that he was fighting a virus of some sort. But, other than that, Matteo was a healthy little boy.

Ok... again... I don't understand. WHAT? Then, why on EARTH is our child dead? Someone explain this to me. Please. PLEASE?!

Three months of missing our little buddy. Three. Months. If you have asked me three months ago if I could go on living like this, I would have seriously doubted it. But, I have. We all have. And, we continue living. Every day. It's harder than hell... but we do it. For our two other children. For Baby Surprisette. For Matt. Without Matt. And, it sucks.

There are hundreds of known viruses. But, as we've learned in recent months... hospitals can only test for a handful of those viruses on living tissue and blood samples.

Apparently, the challenge can be far greater when it comes to running the same tests on post-mortem tissue. Some of the viruses/bacteria are nearly impossible to grow.

Of the tests the coroner was able to complete on Matteo, these are the results that have been shared with us:
• Pneumonia - negative
• Meningitis - negative
• Meningococal - negative
• H1N1 (Swine Flu) - negative
• Influenza - negative
• Dehydration – negative
• Myocarditis – no signs
• Anomalous left coronary artery – no signs
• Brain aneurism – no signs
• Febrile Seizure – no signs
• SIDS – completely ruled out, due to the fact Matt was over 1 year of age
• Toxicology report showed one item: Acetaminophen (Tylenol), of normal levels

Per our pediatrician’s suggestion after Rocco’s 5 day fever, we went ahead and had his blood drawn to test for mono/EBV. We’re still awaiting results. The first result was inconclusive, partly due to a lab error.

Then, I need to let the Dr. J know what the results are. If negative, she closes Matteo’s case. If positive, there may be another test the coroner’s lab does. There may not be.

Dr. J could not perform the EBV/mono test on Matteo due to the fact that the bacteria is next to impossible to grow from post-mortem tissue.

I also asked Dr. J again if she could guesstimate Matteo's time of death. It's difficult to do with absolute certainty, due to the fact that he was dead for hours before we discovered him. But, she estimates it was closer to the 10pm-12am hours on July 4th, versus the very early hours of July 5th.

It is beyond difficult to think that my sweet baby boy, died from a random virus that we can’t pinpoint. In today’s world of vaccines and hand washing… my child died from being sick. He had a fever. And, we had no way of knowing that this fever was different from any other he had experienced over his lifetime.

That’s hard to swallow.

It’s still hard to think I will never see him again. Never hold him again. Never smell him and snuggle with him again. Never see him playing with Rocco and Gabby again.

It beyond hurts.

People ask if it’s getting easier with time. People ask if it helps knowing another baby is on the way. And, I sometimes want to scream “NO!” at the top of my lungs and cry at what seems like such an insensitive comment/question. But, I don’t. I don’t because I know they have no way of understanding what we’ve gone through, or how we feel. There is no way they could truly know our loss. No possible way.

You can try to imagine what it’s like. Maybe you have a child around 18 months… or older, or younger. And, maybe you try to “imagine” not seeing them, holding them or hearing their precious little voice for 3 months. But in reality… you still get to do that every day. We don’t. We won’t again. Ever. Not with Matteo. He’s gone. Nobody and nothing can or will ever replace him. He’s our loss. Our big, huge, gigantic loss. We will never see his full potential… the great man he was supposed to grow up to be. We will never be witness to more of the crazy and fun twin antics between Matt and Rocco. We'll always look at Rocco and think and wonder what Matteo would have done, been, looked like.

You will never know quite how we feel unless you’ve experienced a loss like this.

15 comments:

BioniKat said...

Life is fragile and we have no way of knowing how long each of our loved ones will be with us. We look forward to what we imagine their future will be like but we dont know if that was or is what God has planned for them. We will only know and see the bigger picture when we are on the other side.

Beth said...

This just stinks... I am so sorry for your pain! Praying...

Pam said...

You continue to be in my thoughts and prayers every day. You don't know me but your son and your family have touched me and my life.

The Cochran Crew said...

I think about you often and just watned to let you know!

Mike said...

Anybody that can share their heart like this with such uninhibited and guileless honesty has to be one of the best moms the world has ever seen. I hesitate to take issue with a grieving mom, but I have to take issue with you on one thing. YOU WILL SEE MATTEO AGAIN, and when you do he will take your breath away. On that day his beauty will astonish and overwhelm you. You will be amazed by how full of life and full of love for you that he is. And then you'll know for certain that death can never separate you two again. God is in fact snuggling Matteo. There is no better voice in heaven or on earth to testify to this fact than the voice of his wonderful big sister. Doctors may not figure out what happened, but it was certainly, unmistakably, undeniably, without a doubt NOT due to having an uncaring, unloving, undevoted, inattentive, hard-hearted mom. Your children are enormously blessed to have a mom like you. The doctors will not find some detail that medically places the blame on you because this was very simply and utterly NOT YOUR FAULT. Matteo knows you would have gladly given your life for his had you only had the chance. That is really all that matters. And not everyone can say that. His short life was more packed with blessings than most 100year-olds. Because of you. If your daughters end up even one tenth as forthright as you, they will be amazing women indeed, and the world will be a better place because of them, even as it is because of you. May God Himself continue to empower you to be the incredible example you are to moms.

L.S. said...

Continuing to pray for you and your family.

beth said...

I still think of you and your family everyday. I am praying an extra prayer tonight that the doctors might find an answer for you guys.

Ann said...

Do u use dry cleaning on the bedsheet?

THE MARTINOS said...

Hello Jodi,
I always read your blog although I don't know you and it breaks my heart.
I don't know if this might help, but I am throwing it out there:
I work for a network of organ donors at University of Florida. We specialize in Diabetes BUT we work with researchers all over the world. We collaborate in the US, Canada, Europe and even Asia.
Contact me if at ANY point you have a question about a specific type of test or a hypothesis (as crazy as it might seem). I can email our group of investigators and they are completely Academic Researchers, NOT clinics.
Who knows? Maybe they could run some tests or anwer a question. Most of them are not MD's, though. They are PhD's and open up to any possibility.

I wish you could find some help and some answers.
Keep being strong,
Maria Martino
mrojas@ufl.edu

jess and josh said...

Hi Jodi, I check your blog often as I feel like I know you (even though I don't) Just want you to know that there are people out there...me...who think about you daily and pray for your pain to be lightened. I am so, so sorry that you have to be going through this. It looks like you have such an amzing famlily and that makes me happy that you are not alone!! Keep your chin up!

Nicole said...

You don't know me but I want you to know that after discovering your blog through my SIL I think about you and your family daily and cry for you often. I pray you find the answers you need to help your grieving process. You are right... none of us can IMAGINE what you are going through no matter how hard we try.
Praying for you daily.

Lisa said...

i'm so sorry for you loss, unimaginable pain to loose a child.

and sorry that people say the dumbest things, they just aren't thinking. people naturally just want to 'make you feel better' but instead they do not validate your feelings which is just insulting.

Slic said...

Jodi and Dan - I am praying for you everyday. For answers...but more for peace, for momentum, for the future, for your children that are physically with you. Jodi - I think I can honestly say that I have never read more poignant words than what you write in your blog. I imagine you get up every day, because people need you and if they didn't, you wouldn't. And I can imagine that if you didn't get to express what you do in your blog, in written words, you might think you are going to explode. I don't know that for sure...but I imagine that might be the case. My heart physically yearns for you - if you were one of my girlfriends, well, I would tell you this - The final thing that I'm praying for every day for you specifically, is forgiveness and submission...it sounds crazy, right? But I believe that at some point there will need to be forgiveness from you for yourself - even though there is NOTHING to forgive because you obviously could never have known - but you haven't yet released yourself from that. There will need to be forgiveness for God, for taking your son from you...and you'll, for sanity sake, need to submit to the plan that is ever so much bigger than we could ever know. I don't know when you'll be able to do any of that - based on your comments, neither do you - But with all my heart, I believe that God has a plan for you - not to harm you but to give you a future and a hope (Jer. 29:11) and I'm praying that your deep abiding belief in that comes sooner than you could ever imagine.

Poppy said...

I'm so sorry to hear that you still have no answers. I cannot imagine what that feels like. I only know what it feels like to have answers you never wanted to hear.

I did a post a few days before this one about that "does it get better" question. As I said then, I don't think it ever gets better, we just get better at living with it.

You keep hanging in there. Thinking of you always~

cat said...

Oh my heart just aches for you? I asked a while ago about allergic reactions. Did they look at that?