Fourth of July

I'm a few weeks late posting Fourth of July pictures, but we had such a wonderful time. We spent the weekend with my parents, brother, and his girlfriend Jenn at Bear Creek Lake State Park. Sam is such a fish in the water and loves to dig in the sand.




After the lake, we drove to Cartersville, VA where the fire department puts on a HUGE fireworks display in the middle of the field. We were literally in the middle of nowhere. I was nervous about how Sam would react to the volume of the fireworks, but he was totally mesmerized and stayed up until 11pm watching them!

Chocolate Lover

Last night at the grocery store, Sam was riding in the toy car attached to the front of the grocery cart. During the time it took Brad to move the groceries from the cart to the check-out belt, Sam reached into the candy display and helped himself to a Hershey’s chocolate bar. He managed to open the wrapper and ...start eating the chocolate before anyone noticed! That’s my boy – loving chocolate!

On another note, we are working on his fear of medical professionals after the scary hospital stay. We bought Sam a play doctor's kit and have been practicing listening to the teddy bear's heart, taking teddy's temperature, etc. It seems to have helped a lot - we had an appointment with the pediatric pulmonologist yesterday and the pediatrician today and he was totally fine with the stethoscope, thermometer, looking in his ears, etc. He's so funny though, he totally hated when they took a tape measure around his head to measure the size of his head (he also hates wearing hats, so maybe it's more related to not liking things on his head than a fear of doctors?!).

Finally, animal sounds are the theme for the week. Here's a video of him roaring like a lion!

Enjoying 16 months

Sam turned 16 months yesterday which is hard to believe. We are thoroughly enjoying this stage and his newfound independence. He's walking and very much in the "search and destroy" mode. He has so many "tricks." He's learning body parts and can identify eye, ear, nose, chin, teeth, and toes (although he thinks of toes as piggies from "this little piggy went to the market, etc"). He has a handful of words including mom, daddy, dog, keys, yogurt, water, thank you, and no.

He has so many "tricks" and cracks us up all day long. He loves to clap his hands when he hears "if you're happy and you know it clap your hands!" He plays peek-a-boo by putting his hands on his eyes and pulling them off, very surprised. He is learning animal sounds, roaring like a lion is his favorite, but he's also working on hissing like a snake, neighing like a horse, and making fish sounds. Hide-and-seek is one of his favorite games, he loves to play rough, swing upside down, and be tossed up in the air in the pool.



At the Little Gym, he is one of the strongest kids and has taught others how to hang from the bars unassisted. He is finally beginning to eat better (no more picky eating, thank goodness!) and his love affair with the dog has grown stronger (unfortunately it's one sided love, she mostly tolerates him).

His favorite activities include climbing the steps, standing up in chairs, going down the slide, swinging, playing on the rocking horse, and chasing the dog. Here are a few videos of our silly, sweet, precious boy.

Sam came home from the hospital Saturday July 17!

Meant to post this last Saturday - but here is the email we sent out Saturday July 17

WE ARE HOME! The hospital discharged Sam about an hour ago, we are beyond excited (as evidenced by the very excited Sam in the attached picture). We have a long few days ahead of us with breathing treatments and meds every 4 hours (even at night when he's asleep) and a number of follow-up appointments, but it feels wonderful to be home.

Sam walked in the door and practically threw himself onto the dog and wrapped her in a huge hug and lots of slobbery kisses. He is already more relaxed in the few minutes he's been home.

Thank you all for your never-ending support during this whole ordeal, we could not have made it through this week without knowing there were so many people there to help us and support us.

Hope you have a spectacular Saturday!

Saturday hospital update - getting closer to going home!

Hi everyone, things here are rapidly improving. Sam had a great night and they took him off the high flow oxygen and replaced it with a regular canula. This morning we met with the pediatric pulmonologist, pediatrician, respiratory tech, and nurse to figure out the next steps to prepare him for going home.

While playing with the nurse this morning, the oxygen to the canula was accidentally pulled out and he didn't miss a beat and kept playing. So, he's finally off oxygen completely for the first time in 4 days and seems to be doing fine. Hurray! They're continuing to monitor his vitals to see how his lungs respond to regular room air, especially while he naps, but we're on the right path!

We're all tired and ready to go home. Sam has a lot more energy and his "search-and-destroy" tendencies are difficult to unleash when he's attached to wires and can't move around very much. He even has learned a new word this week ("cheese") and a new animal sound ("what does snake say?" ssssss!)

It's been a long few days but we can see the light at the end of the tunnel!

Thanks again for all of your support!

Friday update on Sam in hospital

Hi everyone, thanks again for all of your support - it is really amazing and helped to lift our spirits through some very long days. We're hanging in there and just taking things one day at a time.

The good news is that we have convinced Sam's medical team to coordinate their exams/treatments to allow him to get as much sleep as possible. The bad news is that his heart rate dropped very low all night long and the alarms rang constantly which resulted in more tests and exams. The fun just never ends around here! We now think that the low heart rate may just be his base line when he's in a deep sleep and doesn't necessarily mean anything. So, we're now watching that too.

His breathing is improving and his struggle for air isn't nearly as bad as it was on Wednesday - bu it still requires him to use far too many muscles in his chest, neck, and back to breathe. He is still on the high flow oxygen, and they had to turn it up to 50% (yesterday it was down to 35%, our goal is to get it at 21%) and they had to turn the volume back up to 5 liters (we were down to 3.5 liters yesterday). But, they cut the dosage of the albuterol breathing treatments in 1/2 (from 10mg to 5mg) and it only takes about a minute to administer the new dosage (rather than the incredibly torturous 10 minute treatment before). We are still doing it every 3 hours - we need to be able to stretch the treatment to every 4 hours before we can go home, and we will continue giving him these treatments at home. He also needs to be off the oxygen before we can go home...so we're here definitely until Saturday, possibly longer. Not really sure at this point. Brad and I haven't left the hospital since Wednesday, we've become quite familiar with the place by now!

Sam's appetite has improved and we're giving him anything he will eat right now. His meals have mostly consisted of pedialyte, yogurt, applesauce, pudding, ice cream, and crackers. But, his eating and drinking has been good enough to stay off the IV and they've now fully removed the IV from his arm. He now has full use of BOTH hands, so we are very happy. He had plastic tubes on his arm to prevent him from pulling out the IV - needless to say, he was not happy with those. He also thinks that all of the cords that are grouped together on his back and hang down behind him are his newly-found tail. He is playing with it the same way he plays with the dog's tail, he's very funny!

The oral steroids continue to make him hyper right after he gets the meds, but we enjoy these precious moments of smiles and laughter. Last night he played with a plastic cow toy for a long time while eating some crackers - he ate a few crackers and then fed the rest of his crackers to the toy cow. Here is a very cute picture of him putting crackers in the cow's mouth. :) In spite of everything, he still manages to make us laugh.

We're hanging in there, trying to get some sleep when we can. We've had some nice visits with friends and relatives who've stopped by, brought us dinner, and kept us company. My mom got Sam a terrific mylar balloon that he has used as a punching bag and loves watching it pop back up each time.

We'll continue to keep you updated. Thanks again for your support, it means so much to us. We apologize that we haven't returned a lot of your phone calls, but cell reception in here is quite spotty and it's hard to hold conversations in between Sam's crying and his many many exams/treatments. Email and texts are the easiest way to communicate right now. Thanks for understanding.

Thursday Update on Sam in hospital

Hi everyone, thanks again for your notes and calls. We're hanging in there, pretty sleep-deprived, but ok. We're learning how to convince the medical staff to coordinate their schedules so they can do their exams/treatments back to back (ie torture Sam for an hour straight) and then let him actually sleep for a few hours a a time. Last night they kept coming in and waking him up every 30-45 minutes. This morning he was very overtired and agitated from being woken up - and when he is agitated, he struggles to breathe. So, we've had a discussion with everyone and hope to coordinate things a bit more - right now we have a 2.5 hour window of no treatments/exams and are hoping he'll be able to sleep for a while now. Brad and I are sleeping overnight in the hospital with him and basically not leaving his side.

We had a very informative meeting with the pediatric pulmonologist who was quite helpful. They're going to do some tests to try to get a better handle on what has caused this (especially since it came on so suddenly) and how we can prevent this from happening again. We will definitely be in the hospital until tomorrow, most likely until Saturday or Sunday.

The good news is that they've taken him off the IV and just have the IV in his arm for medications. We hope to possibly remove the IV from his arm this afternoon. The high-flow oxygen has also been lowered. Originally we were at 100% oxygen at 10 liters. Now we're down to 35% oxygen at 3.5 liters. The goal is to be at 21% oxygen (room air).

The dosage of the albuterol breathing treatment has also been cut in 1/2 and is being given every 3 hours which we are quite happy about - the albuterol has made him hyper and then he crashes afterwards. But, during his hyper silly times, we are enjoying his playful search-and-destroy personality. He loves to throw things out of the crib and we played with golf balls for a long time on the floor.

He is still hooked up to 5 monitors and other cords which significantly limits his mobility which frustrates him. But, he's eating more (he devoured 1/2 a pancake and a big cup of applesauce this morning) and seems more alert. He continues to wheeze and use his chest/back/neck muscles to breathe, much more than we'd like.

Thanks again for all of your notes, it means so much to us to hear your words of encouragement and support.

Sam in the Hospital

Hi everyone, you have probably already heard by now but Sam is in the hospital with a terrible respiratory virus. He was up all of last night not feeling great and was wheezing this morning so we took him to the pediatrician first thing this morning. He began to get worse at the dr office and the pediatrician dialed 911 to have an ambulance take him to the ER (lights, sirens, etc).

We spent most of the day in the ER and are now settled in the Intermediate Care Unit (thankfully, we are not in the pediatric ICU). He has had a very low-grade fever (99.5-100.4) and is no longer vomiting. It is not RSV (which he had a minor case of last fall), just a bad respiratory virus. They are giving him oral steroids 1x/day, breathing treatments of albuterol every 2-3 hours, he is on a constant canula in his nose of high flow oxygen (which he keeps trying to rip out), and an IV in his arm. He is also hooked up to 5 monitors to keep track of breathing, heart rate, etc. - ie, there are a million cords everywhere.

Brad and I are staying overnight in the hospital with him - we expect he will be in the hospital at least until Friday if not longer. He's beginning to eat a bit which is encouraging. Thank you all for your messages and notes, we really appreciate your support. It has been a very long and challenging day. It breaks our hearts to see our sweet little boy in pain. Thankfully his spirits have lifted somewhat tonight and we've had some sweet moments of smiles, laughter, and playing. He has even done his great "roar like a lion," given us kisses, played with some toys, waved to everyone, and talked up a storm (not sure I've heard words quite as sweet as hearing him say "hi mama"). Attached is a picture of him waving during one of his happy moments tonight.

We are in a private room and can be reached on our direct line at 703.776.6533. We are in Room 533 at iNova Fairfax Hospital in Falls Church, VA (it has the best children's center in northern va). We also have our laptops and blackberries to keep us busy during the many hours he is sleeping. The poor little guy isn't getting much sleep. Every time he falls asleep, one of the doctors/nurses comes in and wakes him up to draw blood, do a breathing treatment, take his temp, etc.

We're hanging in there, but it's been a long day. In many ways it feels a lot like the NICU days, but it is also very different. A good friend brought us Thai takeout for dinner tonight. My mom and brother are here too. We feel so grateful to have such an amazing support system. We will keep you all updated. Thanks again for your support, it means so much to us. Love, Becca, Brad & Sam