Friday, October 17, 2014

Henry's Home from the Hospital!

After spending a week in the hospital after his ENT/GI procedure, Henry is home! 

His procedure was just as we expected: 
The gastroenterology team used a scope to look at his upper digestive system and found that everything looks great :)
The ENT team used a scope to look at his throat and saw that his tonsils and slightly-larger-than-normal adenoid gland were seriously blocking his airway while he was asleep. So his ENT doctor removed his adenoid and part of his tonsils (not a complete tonsillectomy because apparently that is considered risky in a kid his age), as well as some tissue from around his voice box in order to clear the obstruction. 
All the doctors involved said everything went smoothly. 

So the procedure itself was just what we were expecting, even hoping for. But everything leading up to the procedure and everything following it was totally not what we were expecting!

For starters, the procedure didn't even happen on Oct. 3rd as it had been scheduled! We made all our preparations, brought Henry down to the hospital, checked in, sat in the waiting room... and then we were told that an emergency case had come in unexpectedly and that now the surgery schedule had changed, and, more importantly, there would no longer be room for Henry in the pediatric ICU for his recovery post-surgery. So we got sent home!

He got rescheduled for the following week after James harassed  conveyed our concerns to Henry's doctors. So once again, we prepared for surgery day, dropped Calvin with our cousins, and brought Henry down to Lucille Packard Children's Hospital (LPCH) and this time the procedure actually did happen and it went smoothly. 

Henry in Pre-op with his daddy, waiting to be taken to anesthesia. 

I spent the first night in the ICU with Henry and it was a rough one. Poor little guy was very uncomfortable as he came off the anesthesia and felt the soreness in his throat. He was on pain meds and even a sedative. I could already hear that his breathing was much quieter while he was asleep, but the ICU nurses and doctors felt that he was still working too hard to breathe and they gave him oxygen support via a nasal cannula. 

We had been hoping/expecting to be discharged the next day... but when Henry was checked on by the pulmonologist (lung/respiratory specialist), she said that he would still need a BiPAP to support his breathing during sleep. This was a surprise for us. Based on talking with our ENT doctor, we had hoped/expected that the surgery would allow Henry to sleep safely without a CPAP or BiPAP machine. But the pulmonologist explained that although the surgery successfully cleared the obstructions in his airway (Yay!), Henry's hypotonia (low muscle tone) was still keeping him from breathing well enough without using too much energy when he's asleep (Boo). And he couldn't be sent home until there was a BiPAP set up at our apartment for him to use.

Here's our nugget Henry the day after surgery. He's sleeping with a BiPAP to help him breathe, he's hooked up to lots of monitors, and he's got a big sleeve on to keep him from pulling any of that stuff off. 

Getting that machine to our house was waaaaayyyy more complicated than we were prepared for. Good news was that the hospital case managers did all the work of consulting with our insurance and with the medical device suppliers that our insurance would pay for. Bad news was that it took a week to make it all happen! 

It's complicated and boring to explain why it took a week, but long story short, Henry spent a week in the hospital and James and I took turns spending the night with him. Calvin also spent his fair share of time hanging out at LPCH, playing with their awesome model train and meeting the therapy dogs that come around to visit the sick kids.

And visiting his brother...

Henry's recovery went well. After that first night, he no longer needed the serious pain meds and was fine on Tylenol and Motrin. He got lots of rest, and after a couple of days he showed us that he was getting his energy back. 

"I"m sitting up! I'm smiling!"

"What are all these wires for? Are these, like, important?? LOL!"

"I can go home now, right guys?? Right? Guys...?"

They kept him in the ICU for most of his stay, but finally on his last night he was moved to a regular room. 

Meanwhile, the hospital case managers got things sorted out and the medical device supplier sent someone over to set up the BiPAP equipment at our home. And finally Henry was discharged from the hospital!

Ready to go home from Hotel Hospital!

James and I are so glad to finally have Henry home and to not be taking turns sleeping in the hospital! We are adjusting to using the BiPAP for Henry. We were expecting a small machine with a mask attached... but it's a pretty big set-up. There's the machine itself with the tubing and the breathing mask, plus a small humidifier, plus a compressed oxygen machine, and then a back-up oxygen tank just in case. We are getting lots of support from the company that supplies the equipment. They will do several home visits over the next few weeks to make sure we are really comfortable using the machines and that the machines are working properly. 

Here's a pic of the machines. The blue box on top is the BiPAP ventilator itself. The small white box below it is the humidifier. The big black box under the desk is the compressed oxygen tank. In the corner behind the desk you can kind of see the handle of the extra oxygen tank.

Thank you to everyone who has been keeping Henry and our family in your thoughts and prayers. We are all doing just fine. We're very thankful that Henry's surgery went well. And though we were not super excited to spend a week at LPCH or to have all this medical equipment set up in our home, we are grateful to have the support Henry needs to sleep safe and sound.

Thursday, October 2, 2014

Henry's On Deck: ENT and GI Procedure Tomorrow

All summer I had this nagging reminder in the back of my mind that Calvin still needed that last hernia repair surgery. And every time it would pop back to my attention, it brought with it a wave of nervous nausea at the thought of my sweet boy going into surgery again - even for such a simple and safe procedure.

After so many tiny moments of worry over Calvin needing another surgery, I am a little baffled to be faced with not Calvin, but Henry going under anesthesia tomorrow instead. How did we get here??

Calvin's surgery has still not been scheduled. I never heard back from the scheduler (she was waiting to hear from the cardio-anesthesiology team) and now that he's recovering from a clavicle fracture, we are just going to wait until he's all healed up before we try to contact them.

Meanwhile, Henry's on deck for tomorrow. He is having a "sleep endoscopy" to examine his respiratory tract because of his severe sleep apnea and to examine his upper digestive tract because of his severe acid reflux, frequent vomiting, and trouble swallowing liquids.

Henry will be put under anesthesia, and his ENT (ear, nose, and throat) doc will use a scope to look at what's blocking his airway and causing the sleep apnea. The ENT doc will also look for a certain type of cleft (laryngeal cleft) that could be causing him to aspirate liquids (get fluid in his lungs when he drinks thin liquid like water).

The GI (gastroenterology and internal medicine) doc will also use the scope to examine his upper digestive tract to check for any abnormalities that could be causing the reflux and vomiting. He will also take swabs from Henry's esophagus to test for allergies and acid reflux damage.

If there's anything that can be "fixed" surgically, the docs will do it right then and there. It might mean removing his adenoid gland, or some tissue around his voice box. There may not be anything "fixable" after all. We won't know until afterward. Even if there's nothing the docs can do surgically, the procedure should give us some information about what's going on in his little respiratory and digestive systems so that we can figure out how to better help our little guy.

Breathing and eating seem like they should be such simple things. I pray that one day they will be simple things for Henry.

I pray that the surgical team will be skilled and capable. I pray that the procedure helps us in some way to make life easier or safer for Henry. I pray that he will be able to recover and heal quickly.

I am thankful to have access to amazing medical care. I am thankful to have family and friends to help us out when we need it. I am thankful for my beautiful little family of four.

We will report to LPCH bright and early in the morning. We will drop Calvin off at our cousins' house for the day. The doctors plan to keep Henry overnight in the ICU, so I will stay the night with him. If you're interested in updates about Henry tomorrow, I will post them on the blog's Facebook page. Prayers and positive thoughts are appreciated. Thanks :)

Tuesday, September 30, 2014

Summer Photo Shoot 2014

After several very busy weeks with lots of doctor appointments for both boys, this last week has been nice and mellow. We're laying low with Calvin recovering from his clavicle fracture, and we finally have a bit of a lull in appointments. 

Henry's endoscopy procedure is coming up this Friday and I am possibly being incredibly calm about it, or possibly in total denial about it... I think it's actually both. I'm deliberately ignoring the things to worry about and focusing on pragmatics and prayer. Thank you to all those out there who have also been keeping our boys in your thoughts and prayers.

Running has been a really lovely distraction for me. I am really starting to get into it! I pushed myself a little too hard Sunday and Monday (got a 5k PR! 32:22) and am now taking a couple of days off with a sore ankle, but I expect to be back behind that jogging stroller by the end of the week.

And here's another lovely distraction! While visiting Georgia this summer, we snagged the chance to do a photo shoot with a very dear friend of mine who is a professional photographer, Lindsay Christerson. She did a beautiful job and I just can't resist showing off our family photos! I had intended to share these weeks ago, but things got so crazy around here that I didn't get the chance until now. 

Thank you, Lindsay, for these beautiful photos! To see more of her work, check out Lindsay Joy Photography.

Wednesday, September 24, 2014

5 Ideas for Playing with Sensory Balloons

With Calvin on the injured list, we are staying home as much as possible to avoid having to strap him into his car seat with the sling and all. Tomorrow we've got his appointment with the orthopedist to get his clavicle x-rayed again. It is only Wednesday and I already have cabin fever. On the upside, I am all caught up on laundry for once! And (in-between more episodes of Mickey Mouse Clubhouse than I would like to admit) we've had lots of time to play and read and do some "funtivities" like art and sensory play that I had been getting lazy about.

So today I was trying to think of something new to do, or at least something we hadn't done in a while, and I came across these sensory balloons from last winter.

You may remember that Calvin promptly rejected these balloons, despite my enthusiasm.

They have been sitting in the cabinet, lonely and unused, since then. Until today! It's 9 months later, so it is probably time to give them another try.

Here's the thing. Even though I was so excited about making these and writing about them and sharing them here on the blog and pinning that post on Pinterest and everything, I wasn't actually sure what to do with them (also part of the reason they have been sitting in a cabinet for so long). I mean, you feel them, duh. But what else??

So today we played with them (Calvin decided he didn't hate them anymore) and here's what we came up with:

5 Ideas for Playing with Sensory Balloons

1. Touch and Feel
This is the obvious one. Encourage your little one to feel the textures and notice the differences. 

2. Pinch, Poke, and Press
Probably also obvious. By doing different things to play with and put pressure on the balloons you can notice how some of them change shape and others go back to their original shape. It's also just more ways to experience the textures. Calvin had to work really hard to pinch or poke hard enough to leave a mark. Little hand muscles at work. Too bad it's only his right hand at the moment!

3. Listen
I would not have thought of this if Calvin hadn't noticed it first. The different balloons actually do make different sounds when you squeeze/pinch/poke them. Calvin is so attentive to sounds. He pointed to his ear after playing with the sand one for a while, indicating that he heard a sound. At first I thought he was talking about Henry making sounds, but he pointed back at the balloon and sure enough, it makes a scratchy sound when you squeeze it!

4. Use Other Body Parts
Sensory play is not just about hands. So I let him see how the balloons' textures felt on his knees and elbows, arms and legs, even his head and toes. He really liked pressing his toes on the balloons. I also rolled each one on his back for a little massage. He started to put one in his mouth, which I didn't want him to do, but I showed him how to close his mouth and touch the balloons to his lips and cheeks. 

5. Talk 
Any kind of play is an opportunity to work on language. With the sensory balloons, you can introduce some descriptive words like bumpy, rough, scratchy, stretchy, firm, and pliable as well as verbs like press, pinch, roll, etc. You can also talk about comparing the balloons. Which one is heavier? Which one has bigger bumps? Which one do you think has sand inside? Etc.

Look, you guys! He doesn't hate them!!
Henry immediately liked them :) 

Anybody have other suggestions? Do your kids like stuff like this? I'm very interested in new ideas for sensory play.

Sunday, September 21, 2014

Why are Collarbones so Wimpy?!?

Seriously. Why are collarbones so wimpy?? James has broken both of his, and now our little bean Calvin's got his first (and hopefully last!) fracture and guess what it is. His collarbone.

It happened during second breakfast. Calvin told his dad that he was hungry, so James offered him toast. Calvin went to get into his chair at the kitchen table while James went to make the toast. Calvin doesn't sit in a baby highchair anymore, his has a toddler chair similar to this one by Keekaroo with the lower step low enough that he can climb in and out of it by himself. He has been getting himself into and out of his high chair without help for several months. He does this many times a day, no problem. This particular time, he fell backward. We don't know why/how exactly he fell. One second James saw him getting into the chair, the next second, James turned around to finish fixing the toast and was surprised to hear a thud followed by Calvin crying. Calvin was lying on his back. James picked him up to console him. Calvin was very upset and asked to go back to bed.

I was supposed to take Calvin and Henry to a baby play group, but Calvin was still so upset that I let him stay in bed and watch Mickey Mouse Clubhouse instead. About an hour later, he was still in a really bad mood and when I asked him if he was hurt, he pointed to his shoulder. When I moved him around to check his shoulder he fussed and cried, so I could tell it hurt. I checked to be sure it wasn't dislocated, and it wasn't, but I was worried that it might still be injured. So James looked at it and we called the nurse and ultimately decided we needed to go to the ER.

Our cousins, Pam and Hartley, came over to babysit Henry while James and I carefully put Calvin into his carseat and headed to the hospital. I was relieved to see the ER just about empty and we didn't have to wait long to be admitted. The doc checked him out and listened to our story, then ordered some x-rays to be taken. We did have a pretty long wait to be taken to the x-ray room, but in the meantime they gave Calvin a pain reliever which cheered him up quickly. So he was in a good mood again when we went to have the x-rays taken and the technician said he was really cooperative.

Sure enough, the x-rays showed that one of his wimpy collarbones (clavicle) is fractured. We suspected as much based on Calvin saying his shoulder hurt, but not based on the fall itself. I am really surprised that a fall from such a low height could have broken his clavicle.

Dear Collarbones: Don't be such a wimp!! Sincerely, Diana

So the ER nurse brought the smallest size sling that they had, and it is still way too big for our tiny guy. So he (the nurse) rolled up a towel and used it to pad the sling, which made it usable at least, though not ideal. When we got home, we wrapped a self-adhesive bandage around the sling to help keep him from being able to move his arm at all.

He'll be in that effing sling for about 4 weeks. In the meantime he'll need to be seen by a pediatric orthopedist. Because we don't have enough doctor appointments on our schedule already!


Calvin is handling the whole thing really well, though. He hasn't complained about the sling at all. He's figuring out how to move around and play with his toys one-handed, and how to boss everyone else around to make us get stuff for him. Dealing with one-handed sign language is going to be a big adjustment for all of us. He keeps trying to use the hand that's in the sling to sign and I'm trying to help him understand that he needs to just leave that whole arm alone. And some of the signs look like other signs if you don't have both hands involved... Like when Calvin was trying to tell us he wanted to "play" and James was convinced that he was saying "potty." So James is making him stay on the potty, and Calvin is getting more and more frustrated because he's finished peeing and doesn't want more potty, he wants to play!

I also happen to think James and I are handling the whole thing really well. Part of me feels like, why aren't I more upset about this? And I think it's because we've dealt with so much other medical stuff with the boys that our tolerance for getting tough news from doctors is pretty high at this point. I think it's also because Calvin is taking it so well. (He's kind of awesome, that kid.) It also helps that it was really an honest accident - it wasn't like we were letting him climb bookshelves or something weird and dangerous. My grandmother who lives upstairs is the only person (so far) who has said to me "You should have put him into the chair. You shouldn't let him climb." And yeah, if we had put him into the chair it's less likely that he'd have fallen. But he's a good climber. He can get into the chair by himself because we let him try. It's important to us to let Calvin learn to do things independently, even at a young age and even at his small size. And yeah, accidents happen and they suck. And it's a part of learning and a part of life, and it's hard, but we recover.

So we're praying for speedy healing and that Calvin continues to be his cheerful and patient (and sometimes bossy) little self! And thanks to all our family and friends who have been praying for him and for us :) We appreciate all the love and thoughts and prayers.

Friday, September 12, 2014

We Got Halloween Back!

We got a little bit of good news about Henry's ENT procedure! An earlier spot opened up in our doctor's schedule, so his procedure is now scheduled for October 3rd instead of Halloween! Yay!

His sleep apnea still stinks. The fact that he has to have the procedure at all stinks. But I'm feeling less anxious and upset about it, and it really does help to know that he'll be able to have the procedure done sooner and not on Halloween! I'll take comfort in small victories. And now I can order their costumes! And get back on Pinterest to figure out what adorable pumpkin-flavored goodies I can make! We got Halloween back! I'll take it!

We're doing animal costumes this year. (Of course! For our little animal-lover, Calvin!) Lions and tigers and bears! Oh my!

Anybody else already excited for Halloween, like me? Got costumes planned?? Do tell! Or is it a surprise? ;)

Monday, September 8, 2014

5k Mama: Giant Race

Last week was rough around here. I've been really stressed about Henry's sleep apnea and his upcoming sleep endoscopy and Calvin's upcoming hernia surgery.

Small update on Henry and the sleep apnea: We are going to try to get him seen by a specialist at the sleep clinic just to try to get more info/help, and we are also going to request that he be given a CPAP to use for now since the sleep endoscopy is several weeks away.

And about Calvin's surgery: Again, it's a really routine ventral hernia repair (it's right above his belly button). He's had a hernia repair done before, so we know how it works. It's minimally invasive. Tiny cut, tiny stitch, go home the same day, but it is done under general anesthesia. He's healthy enough to undergo the procedure, but he does have a VSD - a teeny tiny hole in the tissue between the chambers of his heart which causes him to have a heart murmur. Don't worry, the VSD isn't causing him any problems and it doesn't need to be repaired any time soon. But, there is a special team of cardio-anesthesiologists who specialize in doing anesthesia for kids with heart defects. So, because Calvin's got the VSD, we're waiting to hear back from the cardio-anesthesiologists to schedule his surgery.

So we had two medical appointments last week, and our usual four therapy appointments, though I canceled one of the therapy visits because on top of everything the boys came down with a cold. Runny noses, coughing, fever, the works. Henry's coughing was making him throw up, but luckily that only happened a couple of times.

So yeah, it was a rough week.

On Sunday, a welcome distraction came in the form of the Giant Race - a race benefitting Project Open Hand with a San Francisco Giants theme, held at Giants' stadium AT&T Park.

In June (or was it May? I think June.) I went for an outdoor run for the first time since before I had Henry and I was proud to discover that I could still run a 5k without killing myself :) I've been running once or twice a week since then and I felt like registering for a race would be a fun way to motivate me to keep it up.

Pre-race selfie in front of the stadium #superflatteringangle #tryingtoblamethecameraangle
Starting line! I'm all set with my pink headphones!

I was in the last pace group for the 5k. Which means I was in the slowest group of the shortest race that day. Which also means that I was in a group with a lot of people who were walking, not running, the race. I'm out of practice when it comes to race running, so I had forgotten about the part where you're heading out from the starting line and you've got to, like, throw some bows or something to get past all the slow people in your way so you can get some space and get your run on! Next time I gotta get there early so I can be at the front. And possibly lie about my running pace so I'm not with all the walkers!

Crossing the finish line on the field at the stadium! Can ya find me? I'm right in the middle of the pic.
I finished in 35:46, which is my usual running time for a 5k. According to my Strava app, it was a PR, but only by a few seconds :) The finish line was right there on the field, and the runners were greeted by Giants mascot Lou Seal! (Calvin kept calling him a dog!)

Sweaty selfie with Lou Seal at the finish line
James and the kids, along with my cousin Pam and her kids, were up in the stands above the finish line waiting to see me cross. So fun to see them right there when I finished the race!

My cheering section! 
The runners got to hang out on the field to rest and celebrate.

NBD. Just hanging out at AT&T park. On the field. Where the Giants play. 

Unfortunately my fam couldn't join me. I took a few minutes to myself to chill before joining them up in the stands.

#dontjudge #garlicfries #ballparkfood
Then I treated myself to some of AT&T park's finest cuisine. 

Calvin was pooped as we headed home.
Henry was awake, but he was tired too. They were both still a little sick.

Later, Calvin was admiring my race medal. 
C: "Dog?"
Me: "No, it's a seal. It's Lou Seal."
C: (Nods.) "Dog."