The One with the Fractured Clavicle??

It’s been an interesting week around here, y’all! We’ve had an ER visit for one kid, a head cold for over 2 weeks that just.won’t.quit. for me, and a canceled family vacation for all of us.

Wednesday afternoon, while I was at work, sweet little Squish walked behind Chase when he was on the swing in the backyard and was thrown into the ground. With quite a bit of force, as one might expect. He cried a bunch, hubs took care of him, and we were keeping an eye on him. He refused to use his right side well into the evening on Wednesday, wouldn’t let us pick him up under his arms, and was extra clingy and whiny, again, as you’d expect after such an injury. He didn't have a fever, but you could tell he wasn't himself.

Thursday was more of the same thing. He seemed to improve a bit with a rotation of Tylenol and Advil, but he would just let his right arm hang at his side, doing everything with his non-dominant left hand.

On Friday, when he was still refusing to use his right arm, I took a closer look. I carefully tried moving his hand, then bending his wrist, then his elbow... all was fine. But when I tried to move his arm in a way that required the use of his shoulder, he wanted nothing to do with it, and was in obvious pain.

I looked at his shoulders and was surprised at what I saw:

His right shoulder was clearly lower than his left shoulder. Also, his right shoulder blade looked quite a bit lower than the left side. I was immediately concerned he had dislocated his shoulder considering the impact of hitting the ground with such force. #majormomfail

Hubs was working from home Friday, so my mom come over to keep the older 3 while we took Squish to the ER. We considered the nearby urgent care center, but our expectation was that if he had in fact dislocated his shoulder, it would result in a trip to the ER anyway in order to have a pediatric orthopedic doctor sedate him to put the shoulder back in place.

Thankfully, overall, the trip was uneventful. Squish was such a trooper as we waited to be seen at the ER.

He’s using his left hand to color here. My poor sweet babe!

It wasn’t long at all before we were called back. He was such a trooper and was charming both of the lovely nurses.

They got us settled into a room to wait on the ER doctor to see him.

Again, Squish was such a trooper! He had to put on a tiny little hospital gown, and was just so patient throughout the whole process. He really had a hard time doing things with just one hand, so daddy had to help him drink his water. LOL!

An intern came in to examine him, and it was the most movement I've seen from Squish's right arm without him complaining at all! There was even a tiny "pop" as he manipulated his arm and shoulder for a few minutes. I was surprised Squish didn't wince in pain, but I don't doubt it was just because someone other than mommy + daddy were doing it. He may or may not work us over a tiny little bit since he is (currently) our youngest and most spoiled babe. ;)

Thankfully, he eventually figured out how to make that sippy cup work with just the one functioning arm! LOL!

Eventually, the resident came by to see him and evaluate him. He said he'd like to order a few x-rays to see what's going on. He didn't think anything was broken or dislocated, but wanted to rule it out regardless.

A few minutes later, a nice nurse from pediatric radiology came by to take us for his x-rays. He started out pretty cooperative, which was nice. Unfortunately, I wasn't allowed to stay in the room with him due to my being 21 weeks pregnant, so I had to step out and leave daddy in charge.

I will say it was absolutely HEARTBREAKING to stand on the other side of that door and hear my sweet baby crying as they had to move him and force him into (likely painful) positions in order to get the images they needed to diagnose him. I was grateful daddy was with him, but there's nothing like a mama's sweet hugs and caresses when undergoing uncomfortable procedures. I was about in tears before they finally opened the door seemingly ages later for me to come in and rescue my sweet Squish.

We went back to his room and waited for the doctors to read the scans and give us the diagnosis. This actually happened a LOT quicker than I had expected! They came in to tell us Squish had a fracture in his clavicle (collar bone).

Apparently, this was one of the better bones to break because they told us they fully expect it to heal on its own with NO intervention. So no sling, cast, surgery... nada!

Praise the Lord!

It really was such a relief to know he wouldn't have to be put under anesthesia or have any complex procedures performed on him. It was further heartbreaking to realize he'd been suffering with a broken bone for 2 days, but the fact that they didn't do anything about it made me feel a little better. The same things we'd been doing -- letting him self-manage the use of his arm/shoulder, keeping up a Tylenol/Advil regimen, making sure he takes it easy in order to eliminate the possibility of injuring it further -- that was basically all they told us to do! What a relief!!

Now, the worst part of all of this (if you ask the older 3), is that we had to cancel the vacation we had scheduled to Great Wolf Lodge!

Hubs and I had been planning it for a while, and we told the kids about it two weeks ago, so they've been counting down the days until we were to leave, which was supposed to be bright and early TOMORROW morning! They weren't too excited about the delay, but I promised we would reschedule as soon as we possibly could (and we did!).

World's Best Mom

So I think E is gonna have that "third child" complex thing for sure. Here he is going on 4 months old and I have yet to post his birth story on the blog nor hang up a single picture of him at the house.

Horrible mom. Scarring my children for life since 2007.

On another note, I know I still haven't updated y'all on Chase's cath results or his Fontan timing. The short story is his cath went great, his pressures are great, making him a good candidate for the Fontan, and that's really all we know. We've scheduled an appointment with his local cardiologist next month as he will share any news/updates from the team at MUSC at that time, but honestly we aren't expecting much more than confirmation that we're still good for next spring. I'll update again after that appointment.

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Thank You!

Just a quick post to say Thank You to the family and friends who have prayed us through another big heart procedure on our sweet Chase. The tally is up to 2 heart surgeries, 3 heart caths, 2 bronchoscopies and 2 outpatient surgeries. This boy has been through a LOT, with at least one more heart surgery to go.

We just simply couldn't walk this journey if it weren't for the grace of God and the love and support of our family, friends, neighbors, Facebook friends, twitter followers and blog readers. I send much love and gratitude to each of you!!!

I promise I'll write a post soon with the findings from today's cath and the plan for Chase's last scheduled heart surgery, the Fontan. For now my focus is on getting Chase settled into bed (after some late-night Mario Wii per his request) and getting little E fed and settled down for the night. Oh, and hopefully a long, restful night for mommy & daddy, too!

Thanks again to all of you for supporting us though our journey.

❤️ hugs!


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Cath Complete!

Just got the call at 12:05 PM. Going to see my boy.


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Cath Update #4

Our fourth update came in at 11:37 AM. They are pulling out the catheters now and preparing to put pressure on the insertion sites. This means they are finishing up and will have him up to recovery soon. Keep praying!!


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Cath Update #3

Just got our third update at 10:51 AM. They are coiling some collateral vessels and we'll get another update in about an hour. Please keep praying for my boy!!!

FYI: "Collateral vessels are abnormal blood vessels that connect the aorta with the pulmonary arteries, but they are normally small and are not used. Children with congenital heart disease have enlarged collateral vessels, which can let blood flow from an artery to an adjacent artery or it may carry blood downstream and then back to the same artery. To stop this flow and pumping blood into the lungs, coil embolization creates a blood clot which stops this reverse flow."

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Cath Update #2

Just got our second call at 10:07 AM. They ended up using three access points, one in both legs and one in the right side of his neck. We were not expecting this. They are doing the contrast dye angiograms now.

Please keep praying.

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Cath Update #1

Just got our first call at 8:57 AM. He went under the anesthesia fine. They have femoral venous access in his right leg and are assessing arterial access from either his neck or left leg. Will get another call in about an hour.

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Cath Prep

Today has been quite an eventful day and I have never been more proud of BOTH of my boys! We had an early morning start to get us to MUSC in time for Chase's pre-cath work up, but the boys were both champs in the car. E slept basically the entire time and went almost 6 hours before he was finally ready to eat again! I was glad he did so well since this was his first long trip. Chase enjoyed lots of movies and snacks and for the most part seemed okay with our trip. He did say he didn't want to go to Charleston because he didn't want "that boy looking in his ears" (his ENT doc's student at his last visit), but overall didn't have many complaints.

We had the work up completed in record time! Only about 2 1/2 hours for the EKG, height, weight, oxygen saturation and questions. And Chase was straight up AMAZING!!! He handled everything with ease and there were no major freak outs (THANK YOU, iPad!!!). He even asked questions and wanted to know what was happening the whole time. Obviously quite different than his last cath almost 2 1/2 years ago! We answered all of his questions and discussed each activity beforehand so he'd know what to expect.

Here's our boy getting his EKG like a mad man:


And who owned the echo?? Oh, that's right -- it was Chase!


After we met with our favorite pediatric cardiology interventionist to discuss the procedure and saw our amazingly awesome anesthesiologist, we got our game plan for the cath and headed over to ENT for a quick follow up for Chase's ear tubes.

And by "quick" I mean that we waited OVER 2 1/2 HOURS just to see his ENT, who literally spent about 8 minutes in the room, 7 of which was small talk!

Whew.

Once we were finally able to leave the hospital, we went straight for -- you guessed it! -- ICE CREAM!!! I figured our big boy deserved a treat after the day he had (and the day he's going to have tomorrow).



Thanks in advance for your thoughts and prayers during Chase's cath in the morning. I'll post updates here as often as I can. We expect it'll take anywhere from 2 to 5 hours, depending on whether or not they need to do any coiling or ballooning.

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Another Heart Cath

Considering I haven't blogged in a while, it may come as a surprise to many of you to hear that Chase will be having another heart catheterization procedure at MUSC later this week. While Chase's special heart is something that is constantly on my mind, it's not something I choose to write about here often, unless of course we have heart-related news to share.

Some of you may recall that Chase had what was considered his pre-Fontan cath back in March 2011. The purpose of this cath was to confirm Chase would be a candidate for the Fontan, the third and final scheduled palliative surgery for his congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). This cath was supposed to be his last/only cath before his third heart surgery.

However, almost 2 1/2 years have passed since his last cath procedure, and we (his parents, pediatric cardiologist and surgical team at MUSC Children's Hospital), have all agreed that it would be best to get another peek at his heart before we schedule his Fontan, which will most likely take place next spring. So that means another heart procedure involving general anesthesia and all of the not-so-lovely risks of a heart catheterization procedure.

Ugh.

Please keep our little Rock Star Chase in your thoughts and prayers throughout this week as we prepare for his procedure. The last time we went through this he wasn't quite 1 1/2, so it wasn't terribly difficult to care for him since he wasn't able to verbalize his fears, concerns, etc.

This time around, we have a very opinionated almost 4-year-old on our hands, who will be VERY aware of what is going on around him and VERY unhappy with all of it. This one is gonna be hard on all of us (none more so than Chase, of course), considering we'll also have our hands full with our little 3 month old while supporting Chase through this procedure. Should be interesting!

Here's a pic of our little Chase following his March 2011 heart cath procedure:

We're praying he rocks out this procedure and that we don't find any surprises. If you're curious about his previous cath from 2011, you can read about that here.

Thanks for your prayers!

All Good

Just a quick update to say that Chase did amazingly well for his appointments and procedure at MUSC this week. He had the tubes put in first case on Wednesday (started at 7:30 AM) and we were discharged by 9 AM. Coming out of the anesthesia was pretty hard on him this time around. All of his other procedures (i.e., two heart surgeries and two heart catheterizations) required deeper anesthesia (obviously) so he was kept "under" and comfortable for several hours afterwards. This time it was different. It was more important to be sure he was stable and breathing well than to keep him comfortable (unfortunately). So this meant that when we were called back to see him in recovery, his anesthesiologist (whom we LOVE dearly) was trying his best to comfort Chase, to no avail. Mommy took over, cuddled up with him and tried to get him some juice. He still was NOT happy or comfortable. They ended up giving him some morphine for the pain, but didn't want to put him out with anything stronger than that if they could help it. I was having a hard time getting him to relax and BOY is that kid strong! He was arching his back and flailing in my arms -- it was all I could do to keep him from falling off my lap! But luckily we were able to get him to relax and calm down, without having to give him anything stronger than morphine and some Tylenol.

We were on our way home after relaxing at the hotel for about an hour or so, and had an uneventful trip home. I've had the joy of putting drops in his ears 2x/day for 3 days following his procedure, and (not surprisingly) he's been incredibly awesome with allowing me to put the drops in and hold him on each side for 5 minutes afterwards. I flipped out a bit yesterday morning when he woke up because he had a lot of dried blood outside his right ear. Then I put him in his chair while I got breakfast ready, and noticed him digging in his right ear with his finger, which was then covered with fresh blood. ACK! It kept bleeding slightly for about an hour, even with cotton balls in his ear. I spoke with MUSC and they assured me it was normal to see some bleeding for up to 2 days following the procedure, so that helped me relax a bit. Plus I haven't seen any other problems since yesterday morning and today they both look great!

Of course he's been back to his happy, adorable little self since a few hours after the procedure. It didn't take him long to bounce back and hubs and I feel like we've already seen some improvement. He seems more interested in conversations and is starting to improve some of his sounds. I hope it continues and we see more and more improvements in the coming weeks/months.

Thanks to those of you who lifted us up in prayer for Chase's procedure and our travel to/from MUSC. We appreciate the love and support that the blogging community provides to us throughout our journey.

My sweet little loves...

Pictured above: Chase, Monkey, Beary, LO and Corrina Shorrina

Day 2 Update

Chase had a good night. We both were able to sleep for about two hours, then up to play for about two more, then another three hour nap. He was wonderful and is definitely starting to get his sweet, lovable personality back.

We went down for a chest xray earlier this morning and are waiting to be called down for an echo. Once those are done, the docs can review everything and (hopefully) approve our discharge. We're hopeful that'll happen by 10 or 11 AM but one never knows how that translates in "hospital time." I'm looking forward to getting out of here, getting our stuff packed up at the hotel and getting on the road home this afternoon. I can't wait to sleep in my own bed! These past two nights have been exhausting!!

I'm happy to report that LO has had a wonderful "vacation" here with her Gramma & PaPa. She's in heaven having their undivided attention for two days straight! They took her to the aquarium yesterday and when I talked to her last night, she was non-stop with all she wanted to tell me about her day and all the fun she had. It makes being here in the hospital and putting Chase through this procedure a little easier knowing she's taken care of and is having so much fun! Yay!!

Thanks again to everyone for your prayer support. We are very grateful to have friends and family care about our little family. Thank you!




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Cath Update

Cath was successful! He had no negative reactions to the anesthesia. The LPA narrowing measured 3.5 and was ballooned to 5. There was no restriction in the blood flow where the narrowing was, so that was a blessing. His valve showed a mild regurgitation, which was previously only trace (not an improvement). His pressures and heart function looked great. There was one large collateral that he had to coil. He didn't see any reason to rush his Fontan -- meaning we will probably have about a year 'til his next surgery, and he shouldn't require another cath beforehand.

Overall we got great news. Now we need to keep him flat and still for another 30 minutes (he's still sedated for now so that helps). Should head to an overnight room on the floor in a few hours once he's awake and alert.

Thank you for your prayers today!


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Cath Update

12:57 PM - The cath is complete. They will page us when he's back in Same Day where we can see him and discuss the results.


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Cath Update

12:07 PM - Dr. Baker is ballooning the LPA.


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Cath in Progress

Chase is undergoing a heart catheterization right now (they took him back around 8:10 AM). It's what they're considering a "pre-Fontan" cath, although I don't like to think of it that way. Their way makes it sound like the Fontan is just around the corner, and this momma ain't no fan of that idea. And really, it's their fault because they told me it wouldn't be Fontan time until Chase was 3 or 4 years old. So I'm choosing not to call this a pre-Fontan cath. I'm going to choose to call it a diagnostic/interventional cath procedure.

Regardless.

My boy had Versed for the first time before they took him back for the procedure. I was curious to see how that would work out. Would he be a funny drunk? Or an angry drunk? Would it have no impact on him whatsoever? Or would it cause an unexpected complication?

I'm happy to say it seemed to do what it was intended to do. He was already very sleepy (following a very L-O-N-G night where there was maybe 3 hours of total sleep for Chase, hubs and I), and after the Versed kicked in, he started to act a little bit silly.



See what I mean?

It obviously worked because he let the anesthesiologist (dressed in scrubs, of course!) take him from mommy and carry him out of the room. Yay?

He's going under general anesthesia for (I believe) the sixth time. And intubated for the sixth time. They're going to insert a catheter into his femoral artery as well as an artery in his neck and fish them all up and around his heart, arteries n' stuff (obviously I don't know the technical terminology) to do a bunch of things.

What sort of things?

Lots of things. As I mentioned, they're considering this his pre-Fontan cath. Some of the highlights include:

1. Anatomical measurements are made on the angiograms
2. Pressures throughout the heart and surrounding blood vessels
3. Pictures (angiograms)
4. Addressing LPA narrowing (most likely by balloon)

Hubs and I are sitting in the PCICU waiting room, where we spent countless hours during Chase's birth, Norwood surgery, two bronchoscopy procedures and Glenn surgery. Being here brings back a flood of memories. The familiar surroundings, smells, people... I told hubs I felt an overwhelming urge to go to the pumping room that's right next door to the PCICU waiting room. I spent countless hours in there, too. I'm so glad we're past the hurdle of surgeries (at least until the Fontan), but I'm not loving being here for Chase to endure an invasive cath procedure. My sweet, sweet boy...

It is now 11:07 AM. We've received three pages/updates so far. Basically (1) they have completed an echocardiogram (after he was under anesthesia, so they should get great images with him being still), and (2) the interventional pediatric cardiologist (a.k.a. Dr. Baker, the one performing the cath) obtained access (meaning the IVs and catheters are in place) and he is taking measurements and checking Chase's oxygen saturations at various points throughout his circulatory system, and (3) Dr. Baker is still taking measurements before he balloons the LPA. It'll probably be about an hour before we receive our next update.

Thanks in advance for your thoughts and prayers. We are hopeful by ballooning his LPA, it will give him more time before he needs his Fontan. But more than anything we are hopeful the procedure goes as expected without any complications and that Chase recovers well. Please continue to keep him in your prayers.

I'll post updates as we receive them. Thank you for your prayers and patience.

Whoa

Just whoa.

Didn't think the emotions would be so overwhelming by waiting 'til the last minute to let reality sink in.

Prayers, please.


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Operation: "Bubble" is a GO!

"I'm totally dreading the fact that Chase has a heart catheterization scheduled for next week at MUSC. I'm just about as anxious and afraid as I would be if he were going in for heart surgery. The cath procedure will require general anesthesia and putting Chase on a ventilator. I hate seeing him intubated. I hate knowing that tube down his throat is most likely going to cause irritation. I hate not knowing how he'll respond to the anesthesia this time. Last time we were stuck in the hospital for 3 days after his pre-Glenn cath because he just couldn't get out from under the anesthesia enough to keep his oxygen saturation where it needed to be. I can't imagine trying to keep a nasal cannula of o2 on my active, mobile almost-17-month-old should he need it again this time. I hate the fact that they'll be inserting a balloon inside a catheter inside of his femoral artery and inflating it in his left pulmonary artery to help with the poor blood flow due to a significant narrowing. I hate that we'll be required to stay overnight (hopefully just ONE night). I hate that Chase and I will be together at the cardiac step-down unit while hubs and LO are at the hotel. I hate going through all of this -- putting my son through all of this -- knowing it's impossible for me to explain it to him at this age. He won't understand what's going on or why mommy is standing by, doing nothing, while the doctors and nurses are poking at him, putting lines in him, etc. My heart hurts already for what I'll be putting my son through. But I pray it will be a successful procedure and that it will improve his blood flow to his left lung.

Another thing I don't like about this process is Operation Bubble is back on. You know, the big bubble we lived in for ages after we first brought baby Chase home, throughout the time before his Glenn, then for several months after his Glenn? I don't like the bubble.

And I especially don't like it this time around. There are so many reasons. Like LO for example. We took her out of school last week, will keep her out all this week, and keep her out the week of his cath as well. So 3 weeks of preschool she'll be missing. It makes me totally bummed for her, although in her mind (based on what mommy told her), it's just spring break. A 3-week long spring break. I know she doesn't understand it all, but thankfully she's rolling with it, as usual. She's such a good big sister to her special-hearted little brother.

Chase has been making HUGE progress with his physical therapy. But we've had to cancel PT for the past 2 weeks, this week, and next week. It'll be about a month without therapy when he's finally able to resume it in early April. His PT is going to be completely stunned at the grown up little man who has replaced the little baby/toddler she's been working with for so long. He's walking Every.Where. And he's squatting with complete control. And standing up independently from a sitting position. He's no longer crawling. At all. I'm not believing this little man who is replacing my baby boy! I'm not ready for this!!

We just started speech therapy about 3 weeks ago. But again, we had to cancel it for the past 2 weeks, this week, and next week as well. It'll again be about a month without therapy before we're able to resume it again in early April. I've been trying my best to work with him, but I'll be happy to have a professional back to help him with his speech. He makes lots of noises and matches inflection and tone amazingly well, but he's not really saying any consonant sounds like he should be at his age. We'll get there, obviously, but after we get past this upcoming hurdle.

On top of all of this, hubs and I have had to make some additional decisions in Chase's best interest. Obviously hubs has to work. But outside of that, there is no scheduled interaction with any human being outside of the four of us. My lunches with girlfriends? Canceled. Dinners out at restaurants? Notsomuch. Shopping trips to Target or the grocery store with both kids in tow? Not gonna happen. I'm not a fan of bubble life -- not by ANY means -- but it is what we believe is necessary to keep our son healthy and strong for his upcoming heart catheterization.

Please keep us in your thoughts and prayers as we prepare for next week. This is never easy. Obviously. But pray for hubs and I to have the strength we need to do what we need to do, including handing over our son to the anesthesia team at MUSC for this heart cath. Pray for LO, who is known to roll with the punches, and is excited about spending time with her Gramma & PaPa in Charleston. To her, this will most definitely seem like a vacation, which is exactly what I want for her. And of course, pray for Chase. This will not be fun for him by any means. It's so hard at his age because he knows what happens when people in scrubs are around him, and he doesn't like it one bit! But there's obviously no reasoning with him yet, either. I will do my best to spoil the snot out of him following the procedure and in the days and weeks after. And pray that the cath goes well, they are able to successfully balloon his LPA, that there are no unexpected complications, no new "issues" or "concerns" seen on the echo or cath results, and that he recovers well. My sweet, sweet boy.

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.