Monday, August 12, 2013

Whether it's 20 feet or 2,000 miles.

Yesterday afternoon, as we carried out the steps in preparing to take our family to the Drive in movie theater that evening, I thought it might be interesting to share a rough timeline of what it takes for us to leave the house with Wyatt. It's not always pretty! Though, some days we can make it happen pretty quickly if we need to. ("quickly" is a relative term, of course.) Other days it can take hours to accomplish. There are a lot of factors that can hasten or hinder the process.

And it is certainly a process.

Whether we're only moving 20 feet or going 2,000 miles its all got to happen. The following is sometimes interchangeable depending on the situation. If he's sleeping we will do everything we can to prepare before needing to disrupt the king of sleep. Though, if he is really deep asleep there are times he will sleep right through changing clothes and the transfer too. But in a general sense, this is the step by step process to get our boy on the move:

1) 8-10 hours before the time we are to leave (if it's not an emergency) we make sure his wheelchair, ventilator and suction machine batteries are all charged or plugged in to be charged. The pulse-ox stays plugged in when we are in the house, so the battery is always ready to go. And double check to make sure we have enough liquid oxygen and full E size o2 tanks.

2) Tell Wyatt that we have plans and where we are going. Note: the happy must be turned up real loud to combat the grumpy sounds that he may put out initially. :) This sounds so much easier than it really is some days. (We don't always tell him we're going away ahead of time, depending on what the outing is and how he's feeling. Sometimes he becomes anxious and will obsess about it. And sometimes we do it to avoid any disappointment if he's really looking forward to it and we can not go for some reason.)

3) Flush an ending infusion of medicine, pull up another med that he needs and begin infusing. There is always something to be flushed and started. 

4) Wash his face, suction if he needs it, talk about what he's going to wear (sometimes he cares). Maneuver his body to get him changed and dressed. Being sure to encourage him to help by pushing his arms or legs into his clothes, if he's up for it.

5) Carefully remove the multiple hanging IV bags and pumps from the IV pole and load them all into his backpack.
 
6) Continue trying to talk him into how much fun we're going to have or reassuring him it's going to be ok. This may be an ongoing task...
 
7) Untangle all the IV lines that we just twisted up into a big knot by loading them in the backpack. I can't handle when the IV lines get tangled!

8) Drain his foley bag of urine and chart the amount.

9) Warn Wyatt of the loud noise that he will hear and fill one liquid oxygen companion (companions are like "tanks" for liquid oxygen.)

10) Carry one, two or three, depending on where we are going, E size oxygen tanks up from the basement to put in the van. With the regulator and appropriate tubing.

11) Flush the ending med, pull up the next one that he needs and begin infusing.

12) Figure out what meds he will need for the amount of time we will be gone from the house. Pack his med bag with the vials of medicines, saline flushes, various sizes of needles and syringes that will be needed, alcohol wipes, batteries, saline bags, TPN and supplies if we will need to change it when we are out, along with other care supplies.

13) Put the suction machine in its travel bag to go to the van. While I'm at it, change the canister, tubing and such if needed. 

14) Remind Wyatt of all the times that he didn't want to go somewhere but he ended up having a lot of fun or that it turned out ok. (His memory is not good, so lots of reminders are helpful sometimes!)

15) Maneuver his wheelchair from the back of the house to the front. (This too can be a lot trickier than it sounds...some of you have seen us drive this thing in tight spaces!)

16) Flip the arm rest up on the side of his wheelchair...after I spend some time trying to figure out how to do it because I always forget which little lever I need to flip. 

17) Fill the second liquid oxygen companion. (You can't fill them both at the same time. No, not because I forget while running around trying not to forget anything. You really can't.)

18) Lower his bed the whole way down as close to the floor as possible, as well as the foot and head of the bed- making it flat.

19) Pull Wyatt up to a sitting position, sliding and gently pulling his legs over the side of the bed.

20) Recite the benefits of fresh air for a kid. ;) 

21) While steadying him in a sitting position, stare at the numerous IV lines extending from his double lumen central line, the foley and its bag, both G and J drain tubes and attached bags, pulse ox cord and his oxygen tubing while trying to make a plan to lift him without pulling anything out of his body or the pulse ox off his toe. (I confess, it happens more than I'd like to admit, that I pull the cannula out of his nose or pull his poor toe nearly off his foot as the pulse ox cord gets caught on something. But those two possibilities may be the safest of all the other things that could happen. So, I'd say we're doing good!) 

22) Put the foley bag's little hanger in the pocket of my jeans and attach his G and J tube drains to a belt loop in the same area. So, when I lift him they will be attached to me and won't fall. Throw the backpack containing all the IV pumps and bags over a shoulder or sit it somewhere close enough it won't pull as we transfer him. 

23) I can only lift him one way now due to his size, so I hug him around his chest, under his arms and lock my hands behind him as tightly as I can. Bryan is able to lift him in a cradle hold.

24) He tells me (or Bryan, depending on who is transferring him) I'm going to pull his catheter, IV lines and/or drain bags. 

25) I reassure him that I have all the bags and they won't pull.

26) He tells me that they are already pulling.
 
27) I tell him they aren't pulling because we haven't even moved yet and there is a lot of slack.

28) He says, "but I think they feel like they might be pulling."

29) I tell him ok, but I'll check everything when I get him into his chair.

It's as if we have a script.

30) If he's able to, I ask him to try to hold around my neck (he's unable to move his arms that much or hold on well, but he always tries his best!)

31) I begin to count: 1. 2. and 3. Lifting him as strongly as I can while turning and taking a few steps to plop him in his chair.

32) Placing him in his chair is not always perfect. So, we lift him again to get him in the right spot.

33) I point out to him that "We did it!",  thank him for helping me and we both sigh with a small amount of relief.

34) We readjust his shirt and pants, reattach the pulse ox and/or reposition the cannula...sometimes all of the above. 

35) Find the buckles and seat belt attached to his wheelchair. He sometimes will try buckling the seat belt while I attach the harness.

36) If he was grumbling about going somewhere, it's at about this point that he begins to look forward to what we're doing, if it's something he will enjoy. Sometimes we just have to get him up and out of his bed! If it's not a place that he will enjoy (like the hospital, shopping, etc.) then our little dance of complaints and convincing will continue for a bit. 

37) Once Wyatt is in place, it's time to load the chair with everything else. First the Trilogy and the IV backpack across the back, position the vent tubing and his mask on top and securing them, then the pulse-ox machine clipped on the side, the syringe pump clipped on its hanger, his foley and g/j drain bags positioned in their designated spots and the one o2 companion hanging on the other side. I carry his med bag and we must also carry the other o2 companion.

38) Give him a choice of hats to wear and place the one he picks on his head. Make sure he has his glasses on if he's awake.

39) Turn off the high flow oxygen concentrator, start the portable oxygen running and then marvel at how quiet the house is when the concentrator is turned off. It is really loud!

40) Maneuver his wheelchair out to the back of our house, through multiple doorways, out to the deck and down the ramp that extends along the side of our home. A bit of an obstacle course in itself.

41) We load him in the van, attach all the tie downs to his chair and buckle his seat belt. The girls get in their seats and buckle up behind him.

 42) It's likely we forgot the E tanks and the suction machine in the house. So, Bryan or I go back in to get them.

43) We hook up his oxygen tubing to an E tank for the drive. Saving the liquid o2 companions for when he's moving in his wheelchair. On the high liter flow that he needs the E tanks don't last...we'd need to pull a wagon full of tanks with him to go anywhere! But in the car they work and it saves the liquid o2 for when he's moving, which gives us more time out.

44) It's then that I will look around and realize that, in the rush of things, Maggie forgot to do her hair or Jilly's face is a mess or I didn't even get to look in the mirror before walking out of the house. So, I dig deep into my bag to retrieve the wipes or a comb or lip gloss, at the least, to get us all looking somewhat presentable.

45) Then I will notice the flashing red light on his IV pump. A med that had been infusing needs flushed and another med started. So, we either begin another infusion or if we're running way, way late we make the decision to wait until we get there if it's not too long of a drive.

46) Finally, we are able to pull away from the front of our house, asking each other one more time "Do we have everything?" I hate to even admit it, but after all that there have still been times that we circle the block to come back to our house to pick up something that we did indeed forget.

So, there you have it...that's almost everything that goes into getting all the DeStephanos out of the house for a short time. It may not be glamorous, but we do it. Somedays we're exhausted before we even start and it feels as if we have a mountain to climb before getting anywhere, but we can't let that stop us from living. It's all worth it. He's worth it! 
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1 comment:

  1. The team of love for Wyatt is priceless. Hes very lucky to have a family such as his!

    ReplyDelete