Friday, February 5, 2010

What a day!

Can I erase the past couple of days, please?
So, our little boy started with a fever on Tuesday night, not big deal, except after almost 24 hours of Tylenol, he stopped eating and drinking and started acting very cranky and very clingy, with the fever reaching 103.6 Fahrenheit (39.8 Celsius). Not good, so off to the doctor who found an ear infection ( not again!) and prescribed an antibiotic. OK, I can totally deal with this: a few days of good meds and he will be fine, right? Wrong!! On Thursday at 1 am his fever reached 104 (40)!!!!!!!!! Throughout the day, the fever actually never went away, he kept crying and screaming for no apparent reason, nothing could comfort or calm him down, so yesterday afternoon, the nurse suggested to take him to a local hospital ( not a chance!) or Primary Children's Medical Center (crap)!! You know that was NOT the place I wanted to go. No offense, that is THE BEST place for a sick kid, but my emotions were and are still too raw and fresh to be thinking straight. As a mom, I had to put my feelings aside and do what was the best for my boy. Easier said than done, trust me. As we were getting ready to leave, on the outside I was trying to be brave and calm, but the memories and the emotions came up in crashing waves: my brain was already working to find an objective way to face this, but my heart was beating like crazy. My eyes started to tear up and my stomach was in knots. How could I do this without falling apart completely? What if the fever was a sign of something serious? And what if we met some of Vittoria's doctors or nurses? I mean, even just the parking lot triggers major anxiety issues and opens up the flood gates. I was scared.
We checked in and it was déjà vu all over again: the beeping monitors, the floor, the beds, the medical charts, the background noise even the smell.
Jacomo was a trooper: he got picked on, probed, checked several times, and during all, he held still, almost hypnotized, sooo much like his sister.
His heart rate when we got there was a little bit off, he still had some fever and some redness in his ears. They also found out he had a really nasty discharge in his throat and that could have caused the high fever. The diagnosis was Pharyngitis. So after some Motrin, liquids and taking his vitals one last time, we finally got to go home.

(Jacomo waiting for the doc)

P.S. He is doing much better today, but they said it will take 3 to 5 days for him to get back to normalcy. If that means 24/7 of a very active boy, not time to myself,always on the go, bring it on, I just don't want anymore of these experiences, I could do without them and especially I don't want to see the inside of Primary Children's anymore. I think I might need some serious therapy, I am a mess.

So, remember my fear of meeting one of our girl's doctors or nurses? Well, from far away, we spotted a doctor that was in the ICU when Vittoria was there, but since he never met her or us, I was ok with that. Instead, the nurse assigned to us was actually an old acquaintance: in September of 2008, Vittoria ended up at the ER for dehydration ( I know: bad parents!) and this nurse ended up being assigned to us. Not unusual, except that like our Vittoria, she has Marfan Syndrome. So of course, once Vittoria found it out, she was intrigued and very happy to meet somebody, especially an adult, with the same health problems as her, I think that maybe she was thinking what she would be like once she became an adult: a beautiful tall lady like the nurse.

T., the nurse, was very gracious and professional, trying to keep us and especially Jacomo comfortable, yet when we told her of Vittoria's passing, her eyes were red and teary, she was deeply saddened and then she said :" I remember Vittoria, she was always happy and smiling!". Music to my ears, yep, that's our girl! And some pictures came to my mind, of our girl and her funny faces.


  1. OH wow. I should never read this blog without a box of tissues handy. Man. I'm so sorry you had to go back there and face that. My heart aches for you at the very thought. I'm also very sorry Jacomo was so sick. HOpe he's feeling better!! We sure love that little guy and I'm very proud of him being so big and brave like Vittoria always was.
    Thanks for sharing those pictures. Once again, WOW! The memories! You are such wonderful parents! I love you guys!

  2. I always read your blog posts. My heart breaks for you. I am glad your little boy is doing better. I have only had to hospitalize one of my kids once. It was so scary. I cannot imagine all you have had to go through. I hope things start looking up for you guys.

  3. Hi! My name is Maya and I came across your blog via Google Alerts. I have Marfan too! You have a beautiful family! Anyway, I just wanted to say hi, because I always love meeting other Marfs. Also, I don't know how many other kids with Marfan Vittoria might know, but there's a website the National Marfan Foundation put together called NMF Connect and it's a social networking site for people with Marfan & their families. The address is

    Also, are you guys LDS? Just asking based on the 2nd song on your playlist... :-)

  4. ciao cara mi dispiace un mondo che il piccolo jacomo non sia stato bene, spero che quest'infezione alle orecchie non si faccia piu' vedere, dai un grosso bacione da parte nostra. Nei prossimi giorni ti chiamo un bacione a te

  5. Val - I loved your pictures of Vittoria. So darling! I hope Jacomo is feeling better. Hope to run into you guys at the cabin this summer!

  6. I'm so sorry to hear that you had to make that trip back to Primary. You should have stopped by the third floor. Miles was back in. I'm glad that things are going better for Jacomo. We think about you guys all the time. We love you!

  7. WOW! I take for granted the experience, when my kids go to the doctor. I can't imagine what memories that must have brought back. You guys are so strong! I don't know how you deal with some things. I cannot even imagine how stressful this must have been. At least Jacomo is feeling better by now, I hope?
    I love the photos of Vittoria. What a character! It is good you have so many different photos of her; different expressions, moods, places and outfits. I imagine things would be even harder (if that is possible), if you had only a few photographs. Remember to take care of yourself Val. I'm sure it is easier for me to say, than it is for you to do, but you need to give yourself a break, even if only for a few hours, from the grief and sorrow you still feel. We sure don't want you having another episode, like you did in the airport.