Monday, March 14, 2011

Not So Short n' Sweet . . . The One Where Chase has RSV

Wow. What a weekend. I'm gonna keep this brief for reasons you'll identify once I'm finished with this post. Long story short? We headed to Cincinnati last Thursday to enjoy a 4-day weekend with hubs' family, some of whom were flying in from California, New York and Florida, and some who where driving in from Illinois, North Carolina and us from South Carolina. It was a big gathering and was to be oh-so-much fun!

Unfortunately, "fun" wasn't in the cards for hubs, Chase and I. LO was a different story. She had a blast with Gramma & PaPa and her favorite Aunt D. She was the least of our worries.

Chase, on the other hand, was in the mood for an eventful weekend.

Thursday evening, the four of us had a quiet fast-food dinner in our hotel room. Such a glorious event after driving for 8+ hours and enjoying--you guessed it!--a fast-food lunch, too! So is the life with small kids, I guess. Anywho, Friday we were able to have a little fun. There was a trip to the pool after breakfast, lunch at Red Robin (complete with the end-all, be-all complete and total BLOW OUT diaper courtesy of Chase. It was a strip-him-down-and-change-his-clothes kind of event. Glad I was prepared with a spare outfit! Sheesh.). He didn't seem to be feeling the greatest, and hadn't been eating well for a few days, although he had quadrupled his liquid intake, which I was grateful for (can't have him getting dehydrated on top of everything else we had to look forward to!). He was wiped out and couldn't keep from falling asleep at the restaurant.

Snoozin' at Red Robin...

After the blow-out diaper, we quickly boxed up our leftovers and headed back to the hotel. Both kids had an "okay" nap (if I remember correctly... it's been a long few days) and Friday evening, we were to have a pizza party with the entire family in one of the available meeting rooms at the hotel. We were worried how Chase would respond -- he's not a fan of crowds these days, but we hoped for the best and took him anyway.

He wasn't a big fan.

Initially.

After some coercing, we were able to get him to eat. Of course, his chair was facing the wall, away from the room full of people (most of whom were strangers to the little guy). After a bit longer, he loosened up and had fun with his walker toy and enjoyed playing with mommy and daddy. Then it got to be late and he was ready for bed. We left hubs and LO with the family fun and Chase and I headed up to get ready for bed.

I put him down around 9pm, which was a little later than usual, but I wanted to be sure to give him time to unwind after the eventful day he'd had.

Hubs and LO came up an hour or so later, and everyone went to bed for the night.

Unfortunately, Chase was up around 1am and was NOT a happy camper. Hubs got up with him, gave him some juice, and got him to lay back down. Maybe 20 minutes later, he's up again, fussing away. I went out and checked on him. He felt warm so I took his temp (under his arm as I usually do). It was 100.5, which, after adding a degree, meant 101.5. I gave him some Tylenol and tried to soothe him the best I could. He wanted to be held (fine by me!) and was able to snooze in and out for 20 minutes here and there. Around 3am, he woke up and was miserable. I called his pediatrician's office back home, and I explained our situation to the nurse when she called me back.

Even after I explained to her that Chase is a single-ventricle baby with HLHS, she told me not to worry about taking him to the ER until his rectal temp was over 105 degrees.

WHAT?! Are you kidding me?!!

I don't think so. This is just yet another example of why we are So. Fed. Up. with our current peds office. They treat Chase with the cookie-cutter, "once size fits all" approach and that just does NOT work for a hypoplast.

After hanging up on the peds nurse, I put a call into Chase's cardiologist. One of the docs from his office called me back and I quickly explained the situation. He told me if we were at home, he would have asked me to take Chase to our ER so he could meet us there to look him over and make sure he's okay. But we weren't at home. We were in Ohio. It just so happens that Cincinnati Children's Hospital Medical Center has a very reputable pediatric cardiac center, ranked #9 in the nation. Our cardiologist recommended we take him in to the Emergency Department as he, too, was not at all comfortable with waiting until Chase's temp was over 105. DUH!

I woke hubs up and told him about the situation, and we were able to have my mother-in-law sit in our room with LO so we could head to the hospital.

I'll fast-forward through this. It was a good visit. In and out in 2 1/2 hours, which is pretty impressive in my opinion for an ER visit. They did a respiratory/viral panel (results take 24 hours) and a chest x-ray, which came back clear. His temp was down to 101. WHEW! They gave us a prescription for Tamiflu, 2x/day for 5 days, and instructed us to have our pediatrician's office call the hospital on Sunday to obtain the results of the viral panel. If it was negative, would could discontinue the Tamiflu.

The rest of Saturday was a blur. Both Chase and I napped intermittently throughout the day. I have no idea what LO was up to, but knew she was having a blast and that's all that mattered. Saturday night while the big family headed to a local restaurant for dinner, we ordered room service and stayed in. It really is hard to miss out on the fun, especially when on vacation, especially when so much family was all together at once which is so rare, but obviously we have to do what we do to protect our son and keep him safe as much as possible from germs and viruses and other bad things that can be devastating to his fragile, handsome little body. We enjoyed our evening together and were anxious to get on the road to get back home and settle our boy in his own bed.

Sunday morning we left after brunch, and Chase was in a word: AMAZING. He was unbelievable. He slept. He watched movies (Toy Story trilogy, anyone?). He ate snacks and drank juice. He was amazing! We made good time and got home around 6pm, plenty of time to unpack, start laundry, feed the kids dinner, do baths and get them to bed on time (extra impressive considering we lost an hour Saturday night due to the time change!).
Snoozin' on the car ride home...

Chase went to bed fine, and hubs and I were ready to hit the hay ourselves by 10pm. No sooner had we both stepped foot into our room with the intention of sleeping did our boy wake up, wailing. I went in there to check on him, and he was like I've never seen him before. Thrashing. Kicking. Arching his back. Crying. Screaming. Trouble inhaling. Absolutely inconsolable.

I didn't know what to do. I brought him to our bedroom and hubs and I tried to soothe him, but nothing worked. Eventually I was able to get him to watch TV and eat a few snacks and have some juice. He calmed down. About 20 minutes later we put him back to bed.

About an hour and a half later, we repeated the process above. The flailing. The kicking. The screaming. I can only equate it to what I would imagine a person goes through when having withdrawal symptoms. It's like he was angry but didn't know why or where he was or what was going on. Or maybe he was in so much pain he didn't know how to express it (obviously can't put it into words). Hubs and I figured the only thing that was different was that he'd been on Tamiflu for 48 hours. It was the only variable.

About 2am, I was on the phone with Cincinnati Children's emergency department to obtain the results of his test and see if would could discontinue the Tamiflu. I had to leave a message and couldn't get through to the charge nurse. We were able to get Chase back down to bed again, and this time he stayed asleep through what was left of the night. I was able to speak with the charge nurse around 6am and she agreed that we should stop the Tamiflu since he's having such an adverse reaction to it, but lo and behold, she had NO TEST RESULTS in her computer from his viral panel. I was frustrated by this but would call back later in the day to try again.

So far today (Monday), Chase has been acting much better. He's still nowhere near himself, but he's much better off than he had been the past several days. He's eating a little bit, his drinking has slowed some, but not significantly, and he's not had a fever all day (Praise the Lord!). I just put him down for an afternoon nap about an hour ago, and he's stayed asleep so far. Yay!

Before I put him down for his nap, I got a call from our local pediatrician's office and the nurse told me she heard back from Cincinnati Children's with Chase's test results.

He tested positive for RSV (Respiratory Syncytial Virus).
RSV is a respiratory virus that infects the lungs and breathing passages. Most otherwise healthy people recover from RSV infection in 1 to 2 weeks. However, infection can be severe in some people, such as certain infants, young children, and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children under 1 year of age in the United States.
Lovely.

Our poor boy!

We are VERY grateful he's had monthly Synegis shots (one in each leg, once per month) for the past five months. There is no vaccine for RSV, but the monthly Synegis shots help his body fight RSV should he become infected. Thankfully, we realize this situation could have been MUCH WORSE had he not had his latest Synegis dose on Feb. 28th.

Suffice it to say, for those of you out there who may question why we do what we do, or feel that we're too overprotective or too obsessive-compulsive about germs and protecting our family from the germs that cause viruses like RSV...

THIS IS WHY WE DO WHAT WE DO.

I wish we could've done more to protect him from getting RSV in the first place. Maybe we should've canceled our trip to Cincinnati. Maybe we should have kept Chase from the pizza party with all the family in a small enclosed room. We have no idea where or how he contracted RSV, and we obviously never will. And we realize we can't protect him from everything, but this is why we have to be so overprotective and proactive about keeping Chase away from germs that cause viruses. This could have been a much more disastrous weekend, but we praise God for His hand of protection on Chase, and for giving hubs and I the knowledge to do whatever is necessary to keep Chase in the best health possible.

A side note: The peds nurse mentioned that once RSV is contracted, it's very likely that he'll pick up secondary infections or viruses, like an ear infection or sinus infection, and have a new bout of symptoms to treat. I'm praying this isn't the case. His heart catheterization with LPA ballooning is scheduled for two weeks from today. I don't want to reschedule this procedure due to illness. Please pray that Chase continues to improve and does not pick up any new viruses. His little body is tired and needs a break from fighting off these nasty germs and things that healthy folks like us would barely sneeze at.

A Recap: Part IV

Sunday afternoon, it was time for us to make the 2 hour drive from LA to San Diego for the purpose of which we were all in California: to attend Travis' Celebration of Life service. All of us knew that was where we were going and we all knew why we were going, but none of us wanted to dwell on it or spend too much time thinking about it beforehand. As you can imagine, as we pulled into the parking lot at that beautiful park on that amazingly sunny Sunday afternoon, it hit us all like a ton of bricks.

We proceeded to head towards the gathering place and had the joy and privilege of meeting Nicole and Roger for the first time. I'm not sure Nicole registered who exactly we were: me from SC, Jenny from MI, Stacey from AZ and of course, Amy and Sara from LA (who she had already met before).

The service was in a word: AMAZING. Such beautiful stories were shared about such a beautiful, vibrant, funny and adorable little angel who was taken from this world oh so very soon. It was obvious the love that was felt for Travis by everyone who was there, including people (like myself) who had never had the privilege of meeting the little guy in person! I was amazed that Travis' surgeon not only attended the Celebration, but also shared a few words about that fateful day when Travis went home to be with Jesus. It was heartbreaking to feel those feelings about such a devastating loss, and to know that I could just as easily be in Nicole and Rogers' shoes in the blink of an eye. Such is the life with a heart baby. There are no guarantees, and it truly is more than likely that we as parents will outlive our special children. It's a devastating and morbid thought to ponder but sadly, it's our reality. And it hurts more than anyone can understand.

After the beautiful service, we headed outside for a balloon release.

Travis' Celebration of Life service. This place was packed, folks, with standing room only
What an amazing testament to an amazing little man!
Bodie "represented" all of our little heart kiddos by kissing and releasing a balloon for Travis.
Letting the balloon go!
Bye-bye, balloon!
Fly high, balloons! Tell that sweet boy in Heaven how much his family and friends miss his beautiful smile!

The balloon release was followed by a delicious lunch provided by some dear friends of the family. It was so wonderful to spend time together with these amazing people, enjoying a yummy meal on the comfort of a blanket spread out in the park on a sunny afternoon, sharing and talking about the sweet life of Travis DiCarlo. It was difficult to say our good-byes to Nicole, knowing we all wished we could spend so much more time with her, and not knowing how long it would be before we had another chance to get together again (for a more enjoyable purpose than saying goodbye to one of our own). We hugged tightly and headed on our way back to LA. The sky grew cloudy and overcast as we left San Diego, and I had no doubt that Travis had a word with the Big Guy Himself and asked him to keep the sun shining over his loved ones in San Diego.

Travis, you will forever be in our hearts and minds and your family will always be lifted up in prayer as they learn how to navigate this world without you. You were a blessing and an amazing fighter and will be truly missed by all of us who were touched by your life and smile.