This picture is why it’s so difficult to travel with a medically complex child. You look at all the luggage and think we must be planning to be away for a week. But in reality this is for a one night stay in a hotel just 2 hours away. I packed less when I went on a mission trip out of the country for 11 days. To make it worse, only one of these 9 bags has Daniel and my things in it. EVERYTHING else is Lily’s things that she needs. We only packed the necessary items and the necessary emergency things. When you’re away from home with a child who cannot eat orally and has a feeding tube you have to pack extra necessary things because you can’t run to Wal-Mart and get it.
Lily has to sleep with oxygen so we pack a large heavy oxygen concentrator. If we are going to be away for a few days and we know a few weeks ahead of time our supplier can coordinate for a sister company to drop off a concentrator at the place we will be staying. But for one overnight stay it’s just not worth the hassle of all the phone calls to make sure it’s being taken care of. Not to mention the “what if things get messed up and it isn’t there when we need it”. I don’t want Lily to be the one to suffer because someone dropped the ball. This isn’t just an inconvenience. This can be life threatening!
Two of the large black bags contain Lily’s Vibrating Vest that shakes the junk loose from her lungs so she can cough it up easier, and a Cough Assist machine to use if she isn’t able to cough well on her own. The Vibrating Vest we use daily, but the Cough Assist is as needed. I’d be so upset with myself if we decided not to bring it because it’s a large inconvenience, and Lily ended up really needing it.
Another bag has a back up suction machine, because if one breaks she can get sick quickly. Lily can’t spit the junk out of her mouth when she coughs and is likely to inhale and aspirate it, possibly leading to pneumonia. It’s just not worth the risk to not have a suction machine. This bag also contains her nebulizer machine which she uses daily as well. This helps keep her lungs open and helps her to cough up stuff too.
The electric cooler and the casserole tote contain her food for the next day and a half. This has been a very helpful investment because not all refrigerators in hotels are cold enough and some don’t have the tiny freezer in them to keep our ice packs frozen.
The purple bag under the casserole tote has her supplies for all 7 medications she takes, feeding supplies, bottled water, diapers, wipes, clothing, extension cords for all the electrical stuff we have to plug in, and a pulse ox to keep track of her oxygen levels as she sleeps. This lets me know if I need to turn up her oxygen or to wake her up and help clear her airway by suctioning or using the Cough Assist.
And finally the last bag contains her 2 pillows to help position her when she sleeps, her weighted blanket to help keep her muscles relaxed as she sleeps, and of course we can’t forget to bring Mr. Bear.
Needless to say all of this is exhausting and quite stressful to pack. We’d love to someday take Lily to Disney, or maybe even on a plane or a cruise ship. We’d love to show her the world and for her to experience all God’s beautiful creations. But just the thought of all the planning practically gives me a panic attack. So for now we will do these little trips that are within a day’s drive, and continue to pray that she will someday not need quite this much “stuff”.
Even though such a little trip can be overwhelming, the fun family time and seeing Lily’s contagious smiles are so worth the hassle!