Vent & Trach Dependent Tubie at a Beach Resort

 Two years ago we took Emma on her first big vacation to the North Georgia Mountains and I wrote a post about the medical challenges that came with it in order for us to take her hiking on the Appalachian Trail. You can read that post HERE. A couple weeks ago, we took her on her first beach vacation to Hilton Head Island in South Carolina!! We went to celebrate Michael and I being married for 10 years as of May 7th! ♥︎

The trip was so much fun and I really wish we could have stayed at least one more day, (we got to enjoy three full days), but Emma and Michael both had doctor appointments at the beginning of the week so we weren’t able to leave until Wednesday afternoon, at 3pm on April 28th. We arrived that night at exactly 9pm. According to Google Maps it was only a 5 hour drive, but of course with picking up lunch and stopping for bathroom breaks, diaper changes, and refilling the car with gas, another hour snuck in.

Emma did okay on the way there, but was a little crabby. She is almost 4 years old now and we recently got her a front facing booster car seat. It is great for her to be able to see outside more easily, and in the baby car seat before, she was constantly straining her neck trying to sit up to see out the windows. But with having to wear the HME piece on her trach for 6 hours in the car (which stands for Heat Moisture Exchange, to keep her airway from drying out) since she wasn’t attached to the humidifier like she is at the house, she coughed more and gagged and required me to suction her every 30 minutes, which is a lot more than normal. I would estimate a normal amount of suctioning to be every 2 hours. I also had to keep wiping her chin and neck area because if her saliva from gagging gets down into her trach area/ stoma that will cause her to cough and gag even more. Such a vicious cycle. She napped a little bit along the way. The photo below is from us driving through Jacksonville. 

Some preparation for the trip before leaving is that I looked up some new sign language to use while we were there. I learned and used the signs for "play" (which one of Emma’s speech therapists used to use a lot but I forgot about), "swim", "ocean', and "water". I also looked where the nearest children’s hospitals were. There was a regular hospital about 20 minutes away, but I was surprised and disappointed that the two nearest children’s hospitals I could find were both almost an hour and a half away! Luckily Emma didn’t have any problems and none of them were needed.

Michael is so great about printing out the three page check off list and putting together Emma’s trach care bags and making sure we have more than everything we need, medical-wise. Him bringing extras of everything came in handy on day two when the bottom of her nebulizer broke off in the tubing after her treatments were done, so we needed a new kit for the next morning, which Michael had a few of. It was also really good that he brought the power strip that we purchased at the Walmart on the cabin trip two years ago because there were limited outlets in our hotel room at Hilton Head. This year we had the car carrier to go on the roof racks and that helped a lot with storage spacing, so Michael was actually able to see out of the windows while driving this time!

We almost ran out of the pink sodium chloride bullets, which are used to flush out her suction catheter of her cough phlegm, but I had three or four bullets left when we got home. If we did run out, I could have filled up a small syringe with water in a pinch. We did forget to bring distilled water for her humidifier, but that wasn’t really an issue since we were able to pick some up from Kroger (grocery store) on the second night. The first night we used tap water from the bathroom, which was okay. When we switched Emma from the HME to the humidifier at night that also caused her to need to be suctioned a lot since the humidifier helps loosen up her secretions (as do her treatments in the morning and night). There was just a lot of suctioning happening overall on this trip! Including us getting up in the middle of the night if it caused Emma to wake up crying due to difficulty breathing.

Here are some photos of our medical supply set ups in the hotel room at the resort:

Pieces of her nebulizer kit drying out. 

 

And after the bottom piece of the nebulizer broke off inside the tubing. 

Emma in her Steve Urkel voice, "Did Iiii do thaaat?"

Our set up for trach care every night!

Since Emma is a big girl now, we bought her a blow up mattress for kids instead of bringing the Pack and Play (for babies) like we took to the cabin and on our last trip to Birmingham. However, Emma is far too curious and mischievous these days and loves staying up late and crawling around and pulling on every cord she can, which then sets off various alarms. Such a trouble maker, haha! Michael says we are definitely bringing the Pack and Play next time to keep her in place, but we will have to cut a hole in the bottom of the mesh siding (which Michael will then sew around so it doesn’t keep ripping) in order to put the ventilator circuit tubing through without gravity and condensation causing the bad problem of making water go down her trach while she’s sleeping. We will have to save this kiddy blow up mattress for a few years when she is better at following directions and doesn’t just laugh at us when we gently push her onto her back on the mattress and tell her to go to sleep, tucking the blanket around her small body.

It was also really great that Michael thought to ask Emma’s medical supply company if we could borrow a second battery pack and charger for our trip because we definitely used (and needed) that every day!

Michael also bought her some beach and pool supplies that I was very surprised by because I didn’t think we were going to take her in the pool except for the zero entry area where she could splash around in the part that is only a few inches deep. He also bought her a beach wagon to pull her (and all of her medical supplies) through the sand, which came in handy in other ways too. After we unloaded the car when we got there, and got most of our stuff in to the hotel room, Michael went back out to the parking lot with the beach wagon and filled it up again with the rest of the items in the car that we couldn’t carry the first time- even with the bellhop helping us with the luggage cart.  

Playing with her feeding pump.

Got a great shady spot by the pool!!

Suctioning Emma before we disconnected her from the ventilator and put the T-HME on the end of her trach, so we could go swimming. That's the white piece you can see sticking out under her chin. Michael was very cautious to make sure the water stayed a few inches below her stoma. *Very important!!*

Emma kept trying to sit up straight in the floaty, but it is angled for babies to be able to recline and relax. She loves sitting up and being a part of the action! :) She was only in the pool for about five minutes.

We got the Beau Jardin folding wagon cart from Amazon, with wide all terrain wheels. We both had to push and pull at the same time in the thick, fluffy sand by the dunes (a great thigh work out!), but in the hard sand near the water it was easy for Michael to pull it around by himself.

Everyone who saw us pulling Emma around in the beach wagon, whether we were by the pool, heading to the beach, or still in the hotel, stopped to look at her and commented on how cute and comfortable she looked and how she had a great set up. Or said things like, “She has it made!” A lot of times the shade top was over her so I’m not sure if they saw all the medical equipment that was around/connected to her. She deserves to have it made! She earned this vacation just as much as we had.

The first night after dinner we took Emma over to Harbour Town for waffle cones (for us- none for her, she doesn’t eat by mouth yet- she’s missing out)! The ice cream shop was inside of a store in the back of one of the buildings and was a little bit hard to find, but I’m glad we found it. Michael ordered Bourbon Pecan and I got Monster Cookie with free added toppings of nuts and crushed Oreos. After we paid, the man handed Michael a bag with the receipt and said, “Mr. Gore? This is for your little girl. You have my respect and my admiration.” I was pretty sure it was a shirt for Emma, but wasn’t certain until we got outside. Michael said he saw the man looking through the kid shirts before we got to the register, but assumed the lady in front of us was buying shirts. I love when people acknowledge all that we do for Emma and especially when we get free stuff out of it! He was a very nice man.

Emma's free shirt from the man at the ice cream store! 

On the opposite end of people acknowledging Emma's needs, we also had a sort of weird encounter one evening while waiting for the elevator. There was a couple, maybe in their 50’s. I tend to watch the people who are watching Emma. The husband was kind of staring at Emma in a sort of dazed way. When the elevator opened and his wife walked in, he asked Michael if we were going up. Michael said yes, thinking we would all get in together, but the man pulled his wife out of the elevator by her upper arm. She slapped him away (I never saw her look at us or Emma) and Michael quickly told the man that we were totally fine waiting for the next elevator. Michael thinks they were both drunk and then I did notice that the man wasn’t standing well/ kind of stumbling. The three elevators at the resort came quickly between the five floors and ours arrived in probably 10 seconds after the other couple left. The couple ended up being on our floor too, further down the hall than us and we heard them arguing about us and Emma. The husband being upset that his wife wouldn’t get out to let us go first due to Emma’s medical conditions, and the wife being upset for him trying to make her get out and embarrassing her. We quickly hurried inside our own hotel room. 

There was another, nicer, couple at the table behind us at dinner on the last night of our stay. (We got free dinner entrees as an anniversary gift from the hotel! I made sure to call ahead and let them know we were staying there for our 10 year anniversary to see if we could get any freebies. I was just expecting swan towels or fake rose petals on the bed or chocolate covered strawberries.) That couple peeked at Emma sleeping in the stroller during our dinner. I never mind adults or other kids looking at Emma. It’s hard not to look at her, especially with all her eye drawing equipment, and uber cuteness! That wife asked us a few simple questions about her and then began daydreaming out loud to her husband about when their son was four years old.

** Photos from our Beach Day(s)! We often kept Emma in the tide pool area. Michael was worried about her getting too close to the ocean, even with me sitting right behind her and holding her, thinking she would get scooped up by a wave, never to be seen again! 🌊 🙈  In the later pictures (striped swimsuit) the tide pools were out further and kind of meshed with the ocean so it was a compromise for both of us, haha.  But it was fun to see Emma "sensory play" (floral swimsuit), digging her baby fingers into the wet sand and continually throw it and laugh, getting little chunks all over her body and in her hair. 

Great "wave" capture photo by Daddy!! Those baby toes are curled so tight. Haha. 

One of the biggest (and heaviest) challenges of our trip was luckily something we knew about in advance: we had to carry ALL off her medical supplies (over 100 pounds total) on our shoulders through Harbour Town on Friday night! For the dinner cruise that Michael booked for us for Friday night, it was not handicap accessible, which is sad to think that nobody in a wheelchair can go on it because the only way to get on the boat is by going up seven steps and then taking a step across from the step platform onto the boat. They didn’t have a ramp to get on the boat, which Michael called in advance about to check on. Thankfully, they did have a big, long ramp to get down from the pier to the dock.

Michael carried:
Ventilator & batteries – 60 pounds, oxygen D tank – 8 pounds & Emma – 20 pounds

I carried:
Medical bag – 12 pounds & the suction machine bag – 10 pounds (Wow, it sure felt like a lot more with how big and bulky they both are!)

Stopping for a break while I went into the cutesy souvenir shops. 

When we got on the boat, one of the female employees told me I could put my bags down before she took our family photo with their nice camera. I looked at Michael who was still carrying everything and I said, “No, we want to remember everything we had to do to get her on this boat!” However, in the photo you can barely see the bags anyway. That’s what we took all of our own pictures for!

  **Note the stairs/ step ladder thing to the side. There was also a large step to go over when going inside to the dining area that a wheelchair would not be able to roll over. 

Cutting up Michael's chicken for him since Emma was being a hyper, silly handful and he was not fully able to enjoy his dinner with two hands. Kids, am I right? ;)

A super nice guy offered to take our picture for us- without us asking. I love that! 

At the end of the night, when we got back to our room, Michael showed me his immediate shoulder wounds. He had similar ones two years ago when he turned the ventilator into a backpack so he could carry Emma on the Appalachian Trail.

Our next planned trip will be to Delaware when we go up sometime later this year for Emma’s leg surgery!! We met with the doctor about that on April 26^th, but have not yet received the call from his assistant about when the surgery is scheduled for. Hopefully we can stay in the Ronald McDonald House then too, like we were able to when she had surgery in Michigan a few years ago, although we should only be in Delaware for a week or two. I'll write another medical post, about leg stuff...... eventually. ;)

Here's the last of our medical Hilton Head photos- Michael packing up early on Sunday, May 2nd as we let Emma sleep a little longer:

such cute Hip Dysplasia and Genu Recurvatum

Plugging the ventilator and batteries into the cigarette lighter/ charger for the 5-6 hour drive home. Emma did better on the way home and was not as antsy. She stayed in her carseat the whole time and did not need to get out, which saved us a little bit of time. Hooray! 

So sad to be leaving. We're all already day dreaming about our next relaxing family vacation!  :)   :)   :)