Wednesday, March 7, 2012

A series of changes.

We're currently in the process of having shift nursing set up for in our home. Up until this point we've carried out all of Wyatt's care at home by ourselves and we've strived to "make it work," as I often say. And it has worked for us and our family's lifestyle. But I do agree with the many others that have brought up the point, there could be a time and place that a helpful nurse would compliment our routine, as well. So, the process is started. And I've found myself stressed! I can be a little particular with how things are done, I suppose. And trusting my child's medical care with someone other than Bryan or myself can be difficult. We met with our first potential nurse yesterday afternoon and I don't see a working relationship happening between us...not a good match.

I know some look at us as if we're crazy to not have nursing with the amount of care that Wyatt's requiring...I get that. Some days as I'm infusing meds continuously and juggling each level of his care, I think we must be too! But we've adapted and settled into a routine. We may still be crazy, but it works for us most days.

I'm not sure why I get such mixed feelings about nursing. I adore our infusion and hospice nurses, and the nurses that often take care of Wyatt while in the hospital. I'm trying to be a little more open to the idea and hope that eventually it'll all work out and we'll welcome a trustworthy, confident (in the care being given) nurse into our weekly routines.

Wyatt's been hanging out in his special tomato chair and swinging in the swing these days. He really enjoys the freedom of movement the swing offers him. He and I have been working toward him sitting in different positions (with a little less support) and even trying to stand more often. I can see he's becoming stronger in areas and more confident as he feels the change too. It's exciting to see him regaining some of his strength! But he also appears to be working toward mastering the art of color changing at this point. His respiratory system seems to be finding it difficult to keep up with an increased demand. He relies on the bipap support, including a set rate of 25 breaths per minute, with an additional 3 liters of oxygen all hours of the day. And yet at times his body is craving more in one way or another. We've been told he's at the maximum pressure settings for a bipap, so right now we're unsure what else we can do for him. What I am sure of, we all greatly miss seeing his face that's hidden behind the bulky masks. Not to mention the indents and markings from the pressure of his masks that are embedded into his skin.

This weekend we removed his mask for a minute as we transferred him from his wheelchair to his bed, Jilly exclaimed, shocked "I didn't even recognize Wyatt!! He looks like another boy!" It's true, his appearance has greatly changed since he's become very sick. Add that to very rarely seeing him without a bipap mask and I'm sure he does look like a whole different child to the girls.


The picture on the left was snapped during a quick switch from his bipap to a nasal cannula on the day our RV arrived for his Make a Wish trip, during the last week of October. The picture on the right was taken just last week following a good face wash/tooth brushing and before I put his bi-pap mask back on. I knew his looks changed but didn't realize to what degree until I put pictures side by side.


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1 comment:

  1. Change is never easy.... I hope you can find the right "fit" for home nursing... God already has that nurse for you... She/he is just being prepared to come into your home and give you some much needed time to just "be" with Wyatt instead of being caught up in his care... Just think, you can read to him, snuggle, maybe watch a movie without being the person performing all the required tasks! Keeping you in my prayers!
    Michele (IV nurse)

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