Sleeping With Joey : An Alarming Adventure

Part of the new routine of Orson’s mic-key button (Its really called a mic-key button I promise, it’s not just a cute name we came up with) is of course learning how to do the continuous feeds at night. We had several very well trained professionals’ (one was so well trained her bill was $300 for her 7 minute explanation in the hospital) show us how to use the Joey pump (again the real name, not just a cute name we came up with) that controls the feed throughout the night, and we feel like so far we have that part down. The actual operation of the machine, we can do it.

There are concerns however. Part of having the pump and using it is, it is hooked up to an IV pole (yes we are the proud owners of an IV pole, maybe one day I will paint it). This IV pole has to be close to Orson’s bed, as close as we can get it actually, so that the tube that goes from the bag that is feeding him to his stomach has plenty of leeway for him to sleep comfortably. Concern - Orson sometimes roles out of his bed. The IV poll is metal and has 6 metal octopus legs that hold it upright, pins, and castor wheels as well. Solution, the IV pole is all tucked in with several layers of blankets, plus one currently unused doggy pillow pet to provide a nice soft cushion in case he does role out of bed.

Another concern is keeping the tubing straight and preventing Orson from wrapping it around his body. He usually sleeps pretty sound but we have come into check him over the past couple of weeks and some nights it has been wrapped around his neck and or stomach. Big concern. I have found that there are dozens of message boards across the internet of parents with this same concern and asking others for advice. “So I have this child who is getting the extra calories they need at night, but how can I make sure they don’t strangle themselves at the same time?” Solution, prayer, lots of going in and checking on him, prayer, trying to convince yourself that the tubing wouldn’t be able to really strangle him, and prayer.

Also we have been warned several times by the surgeon that in the beginning and throughout the whole time he has his mic-key button it could really at any time fall out (the balloon holding it in place from the inside could pop and the whole thing falls out), sometimes it happens while the kid sleeps. If it comes out and isn’t noticed (because they are asleep) or isn’t replaced with another button or “foley” which is a temporary replacement tube for the button until an actual button can be obtained if the original pops they the body will heal at such a rapid rate that within 2 hours the surgery will need to be done again. Solution, a foley is kept with me at all times. A new sealed button is on the shelf at home, but if we are out and about and it happens the foley will need to be used until we can get to the button.

We have a goal from our CF team to get Orson to 2 cans of his prescribed formula a night. We worked our way up to it and are currently there. Now we have to figure out how his body responds to it. How fast do we set the pump for? We have been testing different amounts per hour to see what is best. Is he experiencing pain from the use of the pump? Yes it seems sometimes he is. Because of his pancreas not functioning he needs enzymes, of course even with these feeds at night. So do we wake him up in the middle of the night to take them. Yes. He takes his enzymes before he starts his feed and then again when its over between 3 and 4 in the morning. Lately he has been asking for an antacid as well at 3am because of some stomach pain.

Frank and I have a little routine worked out. The alarm goes off on the pump when the bag is empty or if any other problem such as a kink in the line occurs. I have a monitor on my side of the bed that is literally 12 inches from my ear so I hear the Joey alarm first. If it isn’t just a kink in the line, or Orson needing to go to the bathroom (he is drinking for 8 hours straight so he needs to go at least once during the night and be unhooked from his pump) then Frank and I have our adventure.

I bring in the 10 cc’s of water in a jumbo syringe (we need that to flush the line going into his button to make sure it is clean and all the calories he can get are pushed in) and also a cup with water, a straw, and his 2 enzymes. I use my cell phone to light up the button while Frank connects the syringe, flushes the line, puts a clamp on the feed line so it doesn’t leak formula all over the place. He then carefully so as not to hurt Orson lines up the tiny black line with the other tiny black line that unlocks the feed line from the button and disconnects it, then he closes up the button and takes Orson to the bathroom again (he will have already gone once in the middle of the night) and then carries him back to bed. Orson very sleepily takes his enzymes and then most nights rolls over and falls asleep, but some nights stays up for an hour trying to fall back asleep.

I am personally so sincerely grateful for a man like Frank is who is absolutely there and willing to help with all of this. I know there are parents who do this alone. I cannot imagine that, it’s overwhelming enough doing it together. So my hat is off and wild applause is given to a caregiver doing it alone.

A routine is being established. The kids all like to take turns setting up Orson’s pump at night, even Orson loves a turn of course. Frank and I are getting used to our part throughout the night. So far the alarm going off doesn’t wake up the boys. It will be interesting to see how this all goes when I am also getting up to feed the baby in a few weeks and Maelee is sleeping in the boys room as well. It’s a good thing it will be summer time so we can sleep in or take naps (ha ha, good one right!).

Frank and I are both very grateful that Orson has been so accepting of his button. He is asking questions and learning about it, helping take care of it, and dealing with the new feelings that a balloon in your stomach brings to him. He tells me “Mom my button is bobbing up and down again, you should give me Tylenol.” We love the illustrated Book of Mormon stories and use it with our kids for scripture study at night. When I think of how Orson has done so far with his new button I keep thinking of the picture of this guy.
 

 

It is part of the story of Alma the elder and the burdens that were placed on him and his people.

Mosiah 24:15 “And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”

How awesome is this illustrated man, a big goofy grin on his face with that heavy basket. That is how Orson and we “his brethren” are doing this, the Lord is strengthening us because we are asking Him to.

Frank and I are still working on “submitting cheerfully” to the new change, but we also draw strength from watching how well Orson is handling it. He is pretty cool, and his brother and sister are helping him rock it as well.