Our trip started at 4:00 Tuesday morning when I dragged myself out of bed to pump one more time before leaving. (Thank goodness for a baby that takes bottles!) Speaking of bottles, I chugged a bottle of this on the way to the airport:
We had checked in online and printed our boarding passes, and we weren't checking any bags, so we went straight to the security checkpoint. I hadn't connected her to the feeding pump yet so that made it really easy to get through security with all of our liquids. They were very kind to us and made it really easy for us. They inspected her medical stroller by hand since it was too big to go through the x-ray machine, and while they did that, I went through the liquids with the TSA agent. Since we hadn't set off the metal detector, I was able to touch our things. (not the case on the way home) She said we would need to take the pump bag out of the backpack and put it into their machine but I offered to open it and let her hold the little strip of paper over it to do the vapor test instead, and that was MUCH faster and easier for both of us. They visually inspected the 2 bottles of liquid medication but didn't have to do anything else with them, and our ice packs were frozen solid so they didn't count as liquids. Piece-o-cake. Raya is cute and charming at 5am so they gave her stickers and told her how cute she was. She loved the attention, of course. :)
We made it to the gate pretty fast so we had time to get a gate check pass for the stroller (which they technically considered a wheelchair) and they also gave us a pass to preboard. That was MUCH appreciated and needed. Everyone in Phoenix was very nice! Raya was just a teensy bit excited about getting on the plane:
We got onto the plane and that was when I realized that she had soaked through her pull-up (thank you, overnight feed) and her pants were wet so we made a quick pit stop in the bathroom. And of course, we had to take an airplane bathroom selfie:
Once we got back to our seats and got all settled in for the flight, I got out her special surprise. Last week, we had made 10 Tubie Friends and donated them to our GI clinic. Build-A-Bear was having a great sale when I bought them so I got Raya one too. I thought it would be nice for her to have something to snuggle on our trip. I had also gotten a $10 gift card for $5 as part of the sale, so we went to BAB last week and I let her pick out an outfit for "a very special little girl who needs a pretty outfit for her Hello Kitty." I just didn't tell her who the little girl was. :) Needless to say, she was really excited about her new "Hella Kitty" when I pulled it out of her backpack.
We sat near the front of the plane, and since we were some of the first people onto the plane, we watched a LOT of people get on. As the plane was filling up, Raya said, "Wow, there's a lot of people that have to go to this doctor!" Apparently she thought everyone on our flight was going to LA to see a motility specialist like she was. :)
Taking off was about the most exciting thing that's ever happened to her. She thought it was HILARIOUS. When the flight attendant brought me my juice and a cup of ice, I gave the cup of ice to Raya. She looked at me and got a big smile on her face and said, "What?! They have my favorite snack on this plane!!" When I asked her if she wanted to have the baggie of Kix I had brought for her, she said, "No thank you. I just don't want to get the Kick taste in my mouth right now."
Getting up for a 6:45am flight is not the most fun thing to do but nothing beats watching the sunrise from an airplane. It was beautiful!
Losing the bag caused a bit of a delay but we finally made it to CHLA at 11:00 that morning. I was feeling quite down and dejected by the time we got up to her room as I kept remembering everything I had packed in the lost bag. We walked into her room and saw that Santa had just visited and had left her a Hello Kitty jewelry kit on her bed. *cue the Mommy tears*
There wasn't much to do the first day. When the weather cleared a little, I pulled up the shade and realized that we had a fabulous view from our room on the 6th floor. I am not familiar with Los Angeles geography and didn't realize how close the hospital is to Hollywood but we could see the Hollywood sign from our room. It looks farther away in the crappy cell phone picture than it actually looked from her room but now I understand why people say it's not as exciting in real life as it is on TV. :) It was cool to see it though. We had a beautiful view! (not evidenced by the following picture but we really did)
As the sun started to go down, we noticed how beautifully the garden at the main entrance of the hospital was decorated for Christmas. They had it closed because of the rain but it was pretty to look at, even from the opposite end of the hospital 6 floors up.
We had to face the inevitable that afternoon and get an IV placed. I had requested IV team as soon as we got to her room and thankfully, we had a WONDERFUL nurse who listened to me and called IV team. Raya is a very strong little girl and it took 4 of us to hold her and get the IV in, but they got it in on the first poke and it was perfect! They used an ultrasound vein finder and I hadn't seen that type be used before so it was cool to see how they did it. They also used a Bard StatLock to keep the IV in place and it made for such a nice, stable IV. It was not a mess of tape, gauze, and cotton balls that constantly had to be readjusted like most of the IVs we've had at our hospital.
We switched her from formula to Pedialyte around 3:00 that afternoon. After her IV was in and we had the plan lined out for Tuesday night & Wednesday morning, Raya and I snuggled up in her bed with "HellaKitty" and watched movies.
Raya likes to surprise me. Usually at times when it makes me look silly in front of other people. Like when they asked if we needed anything and I asked for some juice and crackers for me but didn't ask for anything for her. She never drinks anything but water so I never even offer her juice anymore. It turns out that if it's in a cute little box with a straw, she likes it. Go figure.
I have to say that I was impressed by how quickly the hospital got all of her meds and formula to us. We actually ended up using our Nexium packets from home because they didn't have the same thing in their formulary (which I expected) and they were fine with it since I had brought them in the original packaging with the prescription label. We were only about an hour or so behind our normal schedule on her sleepy meds. After being up since 4:30 am, it was sweet relief when she was able to go to sleep. It's hard to put into words how I feel when I see her peacefully sleeping. Much like eating, sleep is something that does not come easy to her so it makes me happy to see her relaxed and resting.
She was supposed to go NPO at midnight (NPO = nil per os, or nothing by mouth) but we just turned off the Pedialyte at 11:30 when they came in to do night meds and the nurse started her IV fluids then too so they didn't have to come back in at midnight. I loved all of our nurses!
Transport came up at 6:15 Wednesday morning to take us downstairs for an EGD. It was kind of funny to wake her up and get her out of bed at an early hour just to take her downstairs and put her back to sleep for an endoscopy. She was a little anxious but she snuggled with "HellaKitty" and took it like a big girl. I'm kind of in love with this picture I snapped on my phone while we were walking down the hall:
And pictures of our glowing thumb:
And pictures of our tiger shirt with leads coming out the top:
And asked questions about how the nurse connects IV tubing to this little blue thing:
Meanwhile, I talked to all of the nurses & doctors that came by. I was able to chat with anesthesia about giving her something to keep her from getting nauseated and something to keep her from waking up like a wild animal, both of which have happened before. They didn't have the clonidine that we normally use but they used precedex instead and it worked beautifully. Once we had that all figured out, we met Dr. Punati, the motility specialist, who was doing the EGD. We talked about how the day was going to go with the EGD and then the manometry study and she answered some of my questions. A few minutes later, they hauled my darling girl off to have her procedure done. She had her beloved pink blankie with her and her new Hello Kitty, and she didn't get upset at all like she usually does when we get to the place where I have to say goodbye and go to the waiting room.
I felt like it took forEVER for them to call me. I was bored. There was nothing good on the TV in the waiting room, my phone didn't get reception there, I didn't have any money in my pockets to go buy breakfast with, and all the magazines were in Spanish and I didn't feel like I had enough brain power at that time of morning to try and read them. It was almost 8:00 when they took her back for the EGD and about 9:00 when they came to get me. That's a really long time for an EGD. It made me wonder what she had found in that little stomach. I started to feel a little bit hopeful that maybe she actually HAD found something, even though I suspected that she wouldn't. My suspicions were correct. She brought me back pictures of a beautiful, perfect stomach and small intestine.
I was fine with that. She hasn't had symptoms of ulcers or anything like that. I was hoping she would tell me there was a problem with Raya's pylorus (the valve between the stomach & small intestine) because there are things we can do about that but there was nothing visibly wrong with her stomach. They took me in to PACU (post anesthesia care unit) to sit with her while we waited for her to wake up.
I don't care who you are or how many times you've done this, it is always a little bit disturbing to see your child in a drug-induced sleep with monitors, wires, and oxygen connected to them. She's usually on blow-by oxygen after anesthesia so the cannula was something I wasn't expecting to see. One thing I do always appreciate though is that whenever she takes her blanket back with her, the nurses always cover her up with it when she's done so that she wakes up wrapped in her own blanket.
She probably could have kept on sleeping for another 3 hours but we had to wake her up so we could get back upstairs to her room for the manometry study. She couldn't stay awake but she woke up enough that they were okay to let her leave PACU. We got her back to her room and kept working on waking her up since she was supposed to be awake during the whole manometry study.
A few minutes after we got her settled back in to her room, Dr. Punati's nurse came to connect her to the computer for the manometry study. This is what it looked like:
I will do another post and go into detail about the actual testing process but suffice it to say it was a long day trying to keep a very active 5 year old still and being patient with her when she got impatient with everything. I spent a lot of time taking the caps off of her markers, putting them back on, swapping out one set of toys for another, trying to get her to understand how much longer it would be until she could have a sip of apple juice or water (because 5 year olds don't understand "2 more hours"), and looking at the data being recorded on the monitor:
In case anyone is curious, this is what it looked like when the G tube was out and the manometry catheter and NG tube were in:
When she got bored with the movies & TV shows and all her other stuff, she played on the iPad.
|"Um, Mommy, I can't really see it very good. Can you take a picture so I can see it?"|
Just when we were reaching our limits with everything, we heard some beautiful music coming from down the hall. Raya couldn't get out of her bed to go look but I stepped out into the hallway and saw that a Mariachi band was playing requests for each of the kids on the floor.
Not long after we were serenaded, we reached the end of the study. We took one last picture of the funny tubes in her stoma and then it was time to take the NG tube and manometry probe out and put in a new G tube.
I thought she would have sworn off of food & liquids after that experience but she wanted her juice box back when we were done putting in the new tube. All the nurses wanted to see her tube because most of them had never seen an AMT Mini One before. It was nice to be able to explain to them why we chose to switch from the MicKey and what features make the Mini One a better tube for Raya. (I'm not saying the MicKey is inferior, just that it is not the best tube for Raya.)
After that, our sweet, wonderful day nurse, Maya, came to give evening meds and get one more set of vitals before she was off for the night. She was so great to Raya (and to me) and life at the hospital is SOOOO much easier when your child likes their nurse!
When all of that was finished, we got her changed into her pretty new Hello Kitty nightgown that I had bought her for our trip. Getting the sleeve over her IV was tricky but she was so happy to have it on!
Thursday morning, we started off the day by brushing hair & teeth and getting out of bed for some much-needed activity. It's so much easier to do that when you're off of IV fluids! We had a lot of time to pass that day while we waited for the motility doctor to come talk about the results of the study, and then waited for discharge papers. We colored:
We tried to sneak away while Mommy was in the bathroom to visit the adorable little baby on the other side of our room, and dance behind the curtain in our candy cane slippers.
We tried on our (kind of) matching bracelets:
We paused for a moment to be amused by the size of the IV pump and feeding pump:
And also paused for a moment to appreciate how neat and tidy her IV site was, thanks to the StatLock they used to keep it in place. SOOOO much nicer than the IVs we get at our hospital that are kept in place by a mess of tape, gauze, and cotton balls and have to be adjusted every time somebody looks at them. This one was perfect the entire time it was in and never had to be adjusted at all. The adhesive left some marks (probably because of the way they removed it) but the IV itself was perfect.
Then it was FINALLY time to get out of there! (but only after refusing to change out of our Hello Kitty nightgown, which was totally fine because we had a really late flight)
I thought about grabbing something to eat before we left the hospital but we were both antsy to get out of there and I figured I'd just get something at the airport. We crossed the street and headed to the subway stop, at which point Raya plugged her nose with both hands and said, "Mommy, do we HAVE to get in the elevator? It stinks in there!"
Getting through airport security was a little less smooth on the way home but it was something I could have prevented. If you are ever traveling with a child who is on medical fluids, disconnect them from the pump before sending them through the security checkpoint. If I had remembered to do that before we got to the checkpoint, she would not have had to get a "pat-down" (that I don't think ever really happened) and they would not have had to inspect everything we were carrying on without me being able to touch any of it. I get that rules are rules but I did appreciate that when we were leaving Phoenix, the TSA agent was able to let me move things around for her and help her inspect things so that nothing got spilled and it was easy for me to put everything back how I needed it to be packed. Even with the extra inspections, it still wasn't bad getting through security and they were still really nice to us, even when I asked the lady if she had put clean gloves on. (she didn't like that I asked her) The worst part was trying to keep Raya from walking away while I put everything back together and put my shoes back on. They kind of took their time inspecting her stroller. Once I was able to strap her back in, everything was fine.
I have decided that LAX is an awful airport. Or at least the Southwest terminal is awful. There are very few food options, all of which are ridiculously overpriced, and it was far too crowded to navigate with Raya's stroller and our bags. I ended up settling for a coffee-free drink from Starbucks that was loaded with dairy (which Piper did not appreciate a day or two later) and a chocolate chunk muffin. We found a spot on the floor (yes, the floor, which was as crowded as the chairs) and waited for a flight to leave so that there would be a chair to sit in. I gave her the evening doses of her meds to keep her on schedule and then realized I needed to pump again before the flight. We went to the horribly tiny and crowded bathroom and waited for one of the only 2 stalls that her stroller would fit in while I pumped. I hate pumping in bathroom stalls but what else am I supposed to do.
She didn't last long once we got back to the gate. I found the perfect seat right on the end so that I could park her stroller right next to me without it being in everybody's way, but then I decided I'd better get a preboarding pass while there wasn't a line. The only rudeness I encountered the whole time we were at the airport was when I told the lady at the Southwest counter that I needed a preboarding pass for my daughter. Without even pausing, she replied right back to me, "We only give those to people with disabilities." At that point, Raya was passed out in her ginormous medical stroller with her feeding pump backpack attached to the handle and hospital bracelets still on her arm. I was a little dumbfounded at the way she shot right back telling me I couldn't have one because when we were in Phoenix, a woman who appeared to be quite able-bodied had cut in front of me and told the gate agent that she needed a preboarding pass, and when the agent asked her why, she said that she just needed extra time boarding the plane. If she can do that and get one, I thought the woman could have at least been polite enough to look for the child that I had said needed one. *end rant* I told the lady that my daughter was under the age of 5 and that we had medical equipment and that I would be having to carry her onto the plane. Once she finally looked around the counter and saw Raya passed out in the stroller, she said, "Oh, okay, I couldn't see her." Next time, I hope she actually looks first rather than being snippy at someone.
We were once again blessed by the kindness of strangers when it was time to get on the plane. As I was looking at everything and trying to figure out how I was going to manage carrying our bags, folding up the stroller, and getting a very much asleep Raya onto the plane, some off-duty flight attendants came over and took my bags from me, and then one of them held Raya while I folded up her stroller at the bottom of the jetway. They got us settled into our seats and I was so appreciative. Before long, we were up in the air and waving goodbye to Los Angeles.
Our plane landed at midnight and it was about 1:00 in the morning when we got home. I was greeted by some very thoughtful gifts on the kitchen table and a nice, clean house. It made me feel very loved.