I will start being better about updating!
Things have just been so – busy and yet calm all at the same time. Busy for me personally – because i like to start 873 projects all at the same time and then work on all of them at the same time – and calm on a medical front. I mean, sure I have a kid who still has an IV going right to her heart and we are still trying to boost her calories and hydration back up to her baseline level – but i would say overall things are CALM with her. she isn’t doing any crazy autonomic things, is getting a little stressed respiratory wise but is calming herself back down pretty well, and is starting to ramp back up on her food intake (vs just her formula which was mostly all that she was interested in last week).
So – overall, life with the PICC isn’t too bad! It is SO nice to know that if she does decide to pull a kendall (do something totally random and out of the blue requiring a trip to the hospital), we have access. It is a weight lifted off my shoulders like i can’t even describe to you. i don’t think I even realized for myself how much her access issues play into my day to day stresses with her – because the other day when i started getting that sinking feeling that she might be creeping towards another UTI, I realized – this is easy! We can do IV abx and IV fluids from home IF SHE NEEDS THAT! And I put it out of my mind completely. whereas I am typically dreading having to deal with the inevitable infections/fluid needs/blood draws, and in fact usually wait till the very last possible second to take her in because I know what is coming. Now I know that this PICC isn’t a permanent solution to that, and its really not even worth the risk of infection. But for right now – it is very relieving. While we wait for her body to get some of its own strength back, build up her reserves again – we have Plan B. already made, already accessed.
The plan is to have her hydration/nutrition status re-assessed by our beloved GI, Dr. N, at a followup appt in milwaukee on the 15th. at that time, he will either write orders to keep it in and have fluids or possibly calories (PPN) run through it on some kind of a weekly basis (? I am totally guessing here – didn’t get details from the nurse), OR we will yank it out right there in the office. I feel good with this plan because i would hope by the 15th we have a good idea of how she is recovering from this ileus or metabolic decomp or whatever combo of precipitating factors it was! A REALLY huge boost to her is the fact that the weather has been so mild the past few days. while it makes me sad that summer is coming to an end – the energy and life in this kid since the humidity broke has been amazing to see, and I don’t think I even fully grasped how crappy she had been feeling in the heat/humidity – even though i can count on one hand the amount of hours she played outside all summer. Next summer will be interesting for sure to see how she does.
But anyways – in spite of how slightly freaked out i was at the thought of this, we DID put her in the church nursery on Sunday, and she survived! (well, it would be too quick to tell if anything did happen with the line or if she picked up a virus, but for all outward intents and purposes, she seems fine!) But it did reaffirm in my mind how vastly different her life right now is from her peers.
Two weeks ago she was laying in a hospital bed hooked up to IV’s and oxygen waiting while a PICU intensivist reviewed her labs and ordered more bloodwork to figure out why she was dropping her sugars (and other important electrolytes) even as sugar water was rushing into her veins.
One week ago she had just come home from the hospital with a new attachment in her arm.
This week, she was playing along with the kids in her room in spite of the fact that at anytime, one wrong yank could have ripped a 17 inch line out of her vein, or her tubey out of her tummy, and we would have had to rush to the local hospital (who has asked us not to bring her back there cause they usually can’t help her). i know its slightly over-reactionary –but these are the things that go through my mind as a mom. In spite of the fact that it was covered by a cute (if i do say so myself) little arm-warmer accessory, little babies like to suck on anything they can get in their mouths. What if someone had crawled over to her and found two nice mouth sized little alcohol/heparin flavored caps to suck on?
We quite purposefully do not take her to the nursery all hooked up to all she usually needs. We either assume she will be ok without for the 2 hours of church, or she just doesn’t go to church if she is bad off enough to not be able to be unhooked for two hours. i think this is part of what makes it hard for some of our church friends to fully grasp what we are dealing with most of the time. We make it look easy. Which, some days, it is. But many days, I assure you, it most definitely is not. But you know what? We don’t have a choice. We don’t get to change this for Kendall, so we fit it into our lives as best as we know how and we keep moving forward. But never doubt that her issues are myriad and difficult. She is just an amazing little trooper.
I was having to do the class lists for our kids’ ministry (my job at our church) – and as I realized all her little friends were moving up into the big class this month, and even a few who are a few months younger than her, it made me a little sad for her. Now – don’t try to say anything to make me feel better about this because I know it is on the tips of a few of your tongues. It is what it is. this is Kendall’s life. we COULD move her up – but I think it would be too much for her. It was my decision/input to keep her with the younger babies for a little while longer. It’s just that these things come up as stark reminders of what she deals with, and what she goes through, on a week in, week out basis. she is a fighter though – and lets nothing hold her back when she is ready to go! so she will be back with her friends soon, crashing along to keep up with them, tripping over the shoes she is so adamant to wear lately.
she was in a “real outfit” the other day for the first time, really, ever. It wasn’t a onesie (which we typically keep her in to protect her tubey, give it a little more support with the tightness of a onesie to her body), and it wasn’t pajamas. It was a real t-shirt, real jeans, and a real pair of little girl shoes. It was like she knew too that she was all dressed up and as cute as could be. and JUST as i was going to grab my camera to capture the cuteness of it all, i noticed that her tubey had leaked ALL over the shirt, staining it with bilious dumpage and soaking her and her jeans. moment over.
but it was a glimpse of my real “little girl”, not just “my baby”. I don’t know if I am making that delineation real clear –but in my mind – it was huge. As one of my 893 projects, i am doing the semi-annual “find the floors of the girls’ closets” clothes clean out – putting the summery stuff away, sorting through what fits and doesn’t for fall, sorting through what might fit the next K next year, and what is worth keeping or donating. it’s a process and an undertaking to be sure. But in this process, i am re-discovering all of Kaylen’s cute outfits from 2 years ago, when Kendall was first born. It is so weird to think she is actually so much OLDER than kaylen was when she was born, and yet still not quite at that developmental level. Getting there though, definitely getting there. (the picture is of kaylen when she was 22 months, kendall’s age, at our neighborhood egg hunt. I have no idea whose buttocks are at the top of the screen. don’t think i want to know. too lazy to go crop them out.)
For the rest of us – we are slowly settling into the routine of getting back to a routine. I am finding an ebb and a flow to my days that allows for not only our crazy therapy schedule, but also some good one-on-one time with kaylen, some work in the home office, and (*gasp*) – even some housework. I still don’t have it all perfected, and i have a crazy few weeks ahead getting my “work” stuff ready (kicking off our children’s ministries starting back up for the fall semester) – but, we’re making it happen! Couldn’t do it without the support of a few good friends and family – but really, can you do much in life if not for the support of those around you?
The girls find out this Saturday if they made their dance teams, and then the craziness of dance days will begin again once we get that schedule all sorted out. It is nice to have a sense of “normalcy” to our lives, to looking ahead to the next few weeks. Sure we have a few medical appts here and there – but we also have the normalcy of dance, and church events, and photography sessions to look forward to. I like that. I want to start being able to think in terms of “months” vs. “weeks” as our lives have dictated the past couple of years.
It has been a fun weekend – a “last blast of summer” if you will (even though it felt decidely un=summery which is not ok with me!) – but we have an early start tomorrow taking Ben to get his rental car for his work trip this week, then right to therapies, meetings, dance classes, and a week without Ben. So – on that note, i bid you adieu.
Thanks for checking in with us. I know there is so much more i am needing to update on… I will get to it.
and thank you – to those of you who not only check in with me daily (ok sometimes hourly) on Facebook and email – but to those of you who take the time on a Sunday morning to come ask me how we’re doing, tell me you’re praying, or just give me a hug. YOU are what keeps me going, YOU are the answer to your own question “how do you do it?”
and to my wonderful aunt margie – i didn’t get a chance to thank you for the card you snuck into my purse a few weeks ago. I can’t put my gratitude into words. you and grandma and my wonderful cousins are my only link to sanity during those long milwaukee stays – so thank you for your faithfulness and opening your home to us!
I cant’ even begin to thank everyone who needs to be thanked right now, so I will stop trying. If you have done something/said something/prayed something/sent something/cooked something/emailed something – you are appreciated. i hope you all know that.
thanks from the bottom of my (and my family’s) heart.