Just because it’s probably been a while since I’ve done a good update on Kendall. If you aren’t on her facebook page – Hope For Kendall – (you can easily click on the “like” button over there —>), you should be. I try to do some updates there on a weekly basis, and if anything huge comes up, that’s where I post it.
Overall, I’m so pleased to report that she is doing amazingly well. 6 months ago, I did not know if we would be here. I hoped – I hoped even against what I was being told by her doctors – and I prayed, oh how i prayed. And I WILLED her to get better, be better, push through, fight through, prove the odds wrong once again.
And she has.
I know God has big plans for this little miss. He is the reason that she is here, thriving, doing so well. Your prayers to our merciful God are why she continues to do what she does on a daily basis. It has not been an easy road by any means though.
You will not always hear a whole lot about the true ins and outs of all Kendall deals with on a daily or weekly basis. Part of that is because there are a few people involved peripherally in Kendall’s care who like to misuse the information they read on the internet about her, part of it is just that I don’t feel the need to post about every single time something goes wrong or is hard to deal with. A large part of it is because I never want to be one of “those moms” – the ones who seek attention for themselves via plastering their child’s medical issues everywhere. Sure, I share a lot of Kendall’s struggles. Maybe sometimes I have been guilty of sharing too much, but everything I share, I do because I feel at the time that it is the right thing to do. There are times when I think people need to hear what she is up against, because sometimes we all need to be reminded to stop complaining about the small stuff, and sometimes we need to stop and realize what a miracle it is that our bodies function as well as they do every day. And sometimes I just want people to understand how very amazing my beautiful warrior princess is.
Whatever my reasoning on that day – there are many times when I do not update simply because there wasn’t a whole lot of “good” or positive to share that day. It was just another day we all survived. It was full of nausea, tummy pains, headaches, meltdowns, behavior challenges, lots of therapy, lots of sleeping, lots of medicines, lots of my brain working overtime trying to plan for 12 different contingency plans based on the next hour. And really – these things don’t always need an update. Because at the end of the day, or the week, Kendall is still doing GOOD.
My definition and boundary of “doing good” has expanded so far these past few months I can’t even describe it to you. It’s hard because the other girls get caught in that same super wide web of “oh, well as long as you aren’t requiring a ventilator to breathe right now, you’re probably healthy enough to go to school/dance/the store.” Surviving what we all survived those scary nights in July has changed all of us a little bit. Hopefully for the better. Sometimes for the not so good. When we were in the ER a few weeks ago with Kendall she knocked one of her leads off her chest and THAT alarm started going off and I felt my chest constrict and the room start spinning a little bit – it was just the NOISE that set me right back in that moment of panic and it took me almost an hour to calm back down. I hate even looking at ambulances sometimes, thinking of her ride up to the hospital that day. I sometimes envy the “problems” of regular childhood illnesses that I see my friends dealing with. Sometimes I hold someones baby and I instinctively adjust for GJ tubes and pulse ox probes that aren’t there, and then I panic when I feel their smooth bellies like maybe I’ve pulled their tubey out. (Pardon my little foray into my own personal therapy session here….)
So maybe it isnt just the last few months that has changed us but the whole of Kendall’s life experience.
Whatever the definition of time we use – I know that it has changed me. It has changed how I perceive HER, and her issues. It has stretched us both, mother and daughter, in our indefinable intertwined relationship, to learn to understand the other better, to trust the other more, to become both more dependent and independent of each other.
And now when I try to update about how she’s doing – it has come to this. She is doing good. She is doing better than anyone expected. We don’t know for how long we have this awesomeness, which makes it all the more awesome because we try so very hard to not take the good days for granted. She has adjusted to her IVIG infusions like a champ as we have learned to tweak the protocol under which she receives it. And to say “oh they are going great, she handles them fine” – even saying that is to neglect to convey to you what her body endures on that long day. She is awoken at 4:30 am to be placed into a cold car for a 2.5 hour drive. She is nauseated by all the movement in what should be the middle of a REM cycle. She is nauseated by the movement of the car for the first 30-45 minutes until her brain catches up with her a little bit. She retches and gags quietly to herself in the backseat while she tries to fall back asleep in spite of how bad she feels. We get to the hospital and walk down to the infusion center where she is swooped upon by 2-3 nurses hooking her up to vitals, taking blood, bringing medicines in and hooking her up to the machine she will be tethered to for 6+ hours. In order to help the IVIG be absorbed better into her bloodstream, she receives a high amount of IV 5% dextrose in addition to her TPN that also runs concurrent. The dextrose makes her jittery, but she can’t do much to burn off the energy because she is tired from the high doses of IV benadryl she must also receive in order to keep her body from attacking the IVIG. She receives almost 2 liters of fluid into her little body during her infusion. The demand on her heart to keep up with pumping this much fluid is enormous. She must also have her foley cath in her “Cinderella” during this time because it would be impossible to keep up with the amount of fluids retained in her bladder otherwise. And then when it is all done, and her other appointments have been completed for the day, we pack up in the car again for the long drive home, often getting home just in time for bedtime, so she can wake up early the next day and go to school.
She does all of this with so very little complaining, it nearly breaks my heart when I think about it. She doesn’t question “why me?” – she just takes it for the part of her life that it is. She doesn’t try to take any of her “attachments” off, or get frustrated when she is tangled up in them like so much spaghetti tied in knots. She doesn’t whine that her head hurts or her tummy hurts or her heart hurts or her bladder hurts – she whispers these hurts to me when the door is shut and it is just her and I, knowing that there is not much I can do to make it better, just hold her and stroke her hair and tell her she will feel better soon. This is just who she is. The strongest kid I know.
But this is just life in the trenches. We keep on keepin on. Really, it’s not so bad. I know so many of my friends would love to “only” have Kendall’s issues to deal with. It is what our every day lives are like – this give and take of good days and bad days.
We will soon be starting what we hope is “intestinal rehabilitation”. Her team has been working very hard to come up with a modular formula that will have the correct amount of nutrients and the least amount of “bad” stuff (sugars, fillers, random chemicals found in most commercial formulas). It is a complicated process that would require us to basically have a lab in our kitchen to properly prepare it – so as such it has to be prepared at a pharmacy and delivered to us every few days. As you might imagine, the cost of this will be redonkulous. We are awaiting and hopeful that insurance will approve this process. Originally we were supposed to admit Kendall to the ICU in order to start this process, but one of our awesome doctors pointed out that we could not define success or failure based on a few days, and that our overall goal for Kendall has always been to care for her at home. We have strict orders to head in to the ICU if she does appear to be not handling the starting of formula into her gut (even though the list of “signs of intolerance” her GI gave me she already does on a near daily basis with just pedialyte going into her gut). ..I guess it’s just going to be a lot of trial and error. It is scary to be in this place – truly stuck between a rock and a hard place. She is stable right now, her gut is as happy as I’ve ever seen it be. She is growing and thriving with her ridiculous amount of parenteral calories (her IV nutrition). Every once in a while she decides she wants to snack on something, and she can if that’s what she feels like, and if she doesn’t want to eat for days on end, no worries either. But the risks of continuing to rely on that IV are horrible to think about. Even though it comes with it’s own set of risks, we HAVE to give this a try. We could push her gut right into a translocation (infections that make her sick like this summer), which is why we need to have an almost immediate response time to any issues so she can be admitted and started on antibiotics quickly, or we could lose all the ground we have already gained with being able to have her getting some enteral pedialyte. Both of these risks are very much worth it compared to the huge risk that it is to continue relying on TPN for all of her nutritional needs.
No one knows what to expect – even though we all hope for a miracle. The miracle would be that she could get back on full enteral (into her J tube) feeds. But at this point, if we can get her consistently tolerating ANY amount of formula, and can taper her TPN calories and even maybe some of her TPN time, it is that much more HOPE that we have that we can stay one step ahead of her whacked out little system. I know we can make some big strides. I know she is as strong as she has ever been and is ready for this challenge, even though part of me wishes it was not going to be SUCH a challenge for her. Part of me would love to keep her this happy and functional and not ever have to put her through the hard stuff. But the hard stuff is what keeps her doing so well. the long hours of therapy and the discomfort of making her learn to pee on her own without the foley in all the time, and all of the other things we push her to do – this is what is saving her life. I know this. So we will push her through this too, and know that in the end she will come out stronger than ever.
I don’t know when all of this will start – I know only that it has been in the works since the week after Thanksgiving. Whenever it happens, it will be the best time.
So that is where she’s at right now. We are still working hard to get all the pieces in place for her Make a Wish trip – i cannot believe the logistics we have been working through just to try to find a week that will work – and now to get a nurse approved, then i think we can start our official “Yay Get Excited It’s a Real Countdown”. IF the dates manage to get locked in! I am sure the MAW people are going to hate us by the time all of this is said and done…it’s just craziness trying to find the right time between dance/seasons/enough time to plan for all the other issues we need….It’s making my head spin just thinking about it. So i will stop for now until I have more solid details to share with you!
Anyways – thats our update as of this moment.
Thanks for checking in on us!
Love and hugs~