One VERY LONG Week

We had a really rough week, two weeks ago. Thinking about it exhausts me…

After a very normal and active Sunday, Rocco felt warm to me that night. He’s been cutting a lot of teeth… but he felt warmer than “teething” warm. I took his temperature around 6:30pm and it was 102.1. My first thought was “Great. Here we go… our first fever since Matteo’s death. Ok, we’ll get through this. It’s just a fever.”

But in reality, you’re parents to a child who died in his sleep after fighting a fever for 30 hours – a fever isn’t “just a fever” anymore. And, when his twin brother comes down with a fever 10 weeks after his twin died while fighting a fever – a fever isn’t “just a fever” anymore. And, when a cause of death has still not been determined, when blood samples have now been sent to a microbiologist to look deeper for any connections to some kind of viral or bacterial infection and when the coroner tells you that his organs all showed he was a very healthy little boy… well… a fever is not “just a fever”.

A fever now has the potential to be beyond scary and stressful. Every hour is filled with questioning and second guessing every move you make as a parent. And, the scariest part might just be that you know nighttime is coming. You know fevers are their worst at night. And, this child will want to sleep. And, you’ll get tired too.
And… one of your 17 month, 25 day old twin boys died 10 weeks earlier. He had a fever too. He died in his sleep. And, you found him dead, in his crib the next morning when you went in to calm his crying twin brother.

Now every hour of every day for the rest of your life… you kick yourself, you’re angry with yourself and you WISH and wonder why you didn’t do a million things differently that last night with him. You replay every last thing you did with him and the last moments you spent with him. A million times a day. You wonder how the hell your sweet baby could have died, when one month earlier, he was much sicker, fighting a similar fever, but acting completely lethargic for two straight days. You wonder how he could have died when he had fought numerous fevers, night and day, throughout the winter months. You wonder why he was taken from you. You feel like he was stolen.

And all you have are sweet memories and photos of him. And, your heart has never hurt more and you cry every day, more than you’re ever cried in your entire life. And, you’re sad. You’re lonely and you’ve never missed ANYTHING so much. Ever.
You completely lose any fear you, yourself had of dying… because that will be when you reunite with your sweet baby again.

THAT is what a fever is now… for us, anyway.

So, we paged our pediatrician Sunday night because Rocco also had some little red dots on his upper arms and around his neck. Dr. O was great… and he said he’d like us to meet him at his office. Apparently, the dots were heat-rash related. We were to keep giving him Motrin/Tylenol as needed, bathe him and call Dr. O in the morning if the fever got worse.

Rocco kept the fever through the night, but it stayed 102 or below with regular doses of Tylenol. Monday morning started with a very low fever so I thought (hoped!) that maybe it was teething after all. However, when he went from active and happy to clinging to mommy, acting tired, sick, and feeling crazy-hot to the touch in the matter of a half hour… I knew this wasn’t good. At 11:15am, his fever was 104.2. I gave him Tylenol and called the Dr. O. We were told to bring him in right away, which we did. His fever was still climbing (104.5), so they gave him a high dose of Motrin. And we of course raised a million concerns… “but this is too similar to Matteo… fast/high fever?” I almost felt bad for Dr. O or any doctor that day, because all we really wanted was for him/them to say was “Matt died of X. This is completely unrelated to what Rocco has, which is Z.” But, of course, that was impossible.

So, we were sent to the hospital to get Rocco’s blood drawn. And, we were given a prescription for TamiFlu, just in case this was H1N1-related.
Dr. O called us about two hours later to let us know Rocco’s white blood cell counts were elevated, indicating he wasn’t just fighting a flu virus. There was something else, possibly an infection of some sort. Dan took this call and I of course lost it. I broke down crying. My heart was in my throat.

We were then sent to the ER with a referral, to help speed the process of getting us seen quickly. While in the ER, we experienced two more fever spikes of 104. In hearing our history of Rocco’s twin dying 10 weeks prior, after having a fast, high fever history… none of the physicians felt comfortable sending us home. They wanted to keep Rocco for observation, wait for more of the lab tests to come back, and monitor him for cardiac or apnea issues throughout the night. We were finally admitted to a room at 9:15pm. Dan spent the night in the hospital with Rocco. I went home… and wow, that was incredibly difficult to do.

Gabby couldn’t understand why her brother was not coming home. “But Mommy, I want to play with him still. I love him. He’s going to come back, right?” It broke my heart. And, I couldn’t help but cry while trying to reassure her (and myself) that everything would be ok and “Yes, he is absolutely coming home to us.” Neither Dan nor I slept much that night.

Rocco was discharged Tuesday morning. No apnea or cardiac issues were discovered throughout the night. He ran a fever throughout the night but was finally responding well to the medications. He tested negative for 7 viruses they are able to test for (out of the 100’s that exist).

At home on Tuesday, his fever continued and ended up climbing to 104 by 8:30pm. Dr. O had us go back into his office around 5pm when I reported Rocco to be having some difficulty breathing. He was then diagnosed with bronchitis in addition to whatever illness he was fighting. Dr. O decided to call us every hour for a few hours that night – which I couldn’t have been more appreciative of. Finally around 10:30pm, his fever went below 102. This is after taking higher doses of the Tylenol, as recommended by Dr. O.

I decided to pull an all nighter so I could check on Rocco every half hour. There was NO WAY I could sleep, after losing Matt in his sleep while he had a fever. Rocco was FINALLY cool to the touch from 12:30am – 2:45am, and I was celebrating in my head. But, at 3am, he was feeling warm again. At 3:30am, he woke up crying, I went to get him, he threw up on me, and he was extremely hot. Again – fever of 104. I woke Dan up so I could clean up the puke and change clothes. Dan gave Rocco Tylenol and brought him to the ER. By the time they got there – Rocco’s fever was 105. They gave him Motrin right away, did chest x-rays, ran some more blood tests, and paged Dr. O.

Dan and Rocco got home from the ER around 9am. Still – no answers. I had slept for maybe one hour after Dan took over. Dan, was exhausted. This sucked.

Rocco’s fever continued throughout Wednesday, but never hit over 102.8. He had a normal temp by 7:30pm, and his fever didn’t hit over 100 throughout the night. On Thursday, it was 100 at 8:20am, but came down right away after giving him Tylenol and that was the last of it.

To say it was an exhausting, stressful week doesn’t even crack the surface.
We felt lucky to have a pediatrician who spent a LOT of time working for us that week. Dr. O called us more than we called him - we were so appreciative.
The question remains – what caused this?

Dr. O’s wife who is an RN called to confirm on Monday of last week that Rocco’s H1N1 test results were negative. But, she also told us they would like to test Rocco for mono. She asked if Matteo’s blood was tested for EBV/mono. I was pretty sure the answer was no – but would call the coroner to find out. She said that in small children, mono can be subclinical for 2 months. She also said that in small children, mono typically presents with high fevers and not so much the exhaustion that adolescents experience. She also mentioned that mono does have the potential to cause death in small children. And, with the timing of Matteo’s death… we agreed that this was something we needed to test for. (Please note – this is my recount of the discussion. If you have questions – ask your MD.).

I called the coroner and left a vmail. I called her again the next day and left another vmail. She finally called back and could not confirm that they did test for EBV/mono so she had to call the lab. I have a feeling they didn’t initially test for it, but we’ll see. I talked with the coroner for a while that day. It brought lots of horrible memories, and emotions back to the surface.

I still can’t believe Matt’s gone. It’s been 12 weeks and I miss him more than anything. And, it sucks beyond SUCKS still not knowing why he died. I need to know why he died. I just hope we get answers some day.

Dan and I eventually caught up on our sleep. Rocco is healthy. Gabby is healthy. Baby Surprisette is kicking and moving around a lot more in recent weeks.

And, at this rate… baby Surprisette is sure to be an adrenaline junky and non-sleeper.

All photos in this post are of Gabby smothering Rocco with love that week. SO cute...