The hardest part

Is the drive I think. Driving away from home, towards the hospital. Leaving half of my heart at home with the three who are so excited to see me, thinking i am home for good with kendall, and driving towards the other part of my heart, laying in her hospital crib, yanking her tube out for the 28029th time today. little stinker. lest you think poor baby kendall is lolling around being a sick baby, she will now display for you the fact that she is NOT as sick as her inpatient status would lead you to otherwise believe.

Today she has managed to puke JUST enough to concern her docs, but not enough to get her on IV nutrition as threatened last nite. YAY! 

she has also seriously pulled her NG out 5 times. In less than 24 hours. this was SUCH a better idea when she was totally hypotonic and had no therapy! now that we are encouraging her to use her arms, pull them to midline, grab objects – well, hey, who are WE to get upset when she does all of that with her oh so convenient to grab and yank tube right there on her face???? The problem is, she just looks SO DARN CUTE when she is sitting there holding a tube spraying formula all over herself like –  “look mom! you do’nt have to worry anymore, i got this annoying thing out of my nose ALL BY MYSELF!!!! aren’t you proud???”

She also ripped the nebulizer tube away from her respiratory therapist and put it into her mouth all by herself and held it there till the meds were gone – it was seriously cute. and if i seriously could find my camera battery charger i could show you a seriously cute picture of her doing it! but i can’t. so that will have to wait.

So all in all  – just another exciting day here at our home away from home.

I did get to go home and get my phone and laptop chargers at least. take a shower in something that i can actually fit my whole body into instead of the “SPACIOUS PRIVATE SHOWERS” in each patients room here. by spacious i am assuming they mean, hey, if you are anorexic and/or under the height of 4 feet, you should be good to go!” if you’ve ever seen the will ferrell movie “elf”, you know the scene where he is all cramped up in a shower, splashing water on himself? that’s what the showers here are like. If you think ahead and don’t mind a four day wait, they can also put you on a list to get into the parent’s apartments they have here. where you can take a shower in a real shower. maybe i’ll put my name down now, and by the time kendall decides to have another full body meltdown, it will be my turn!

sorry. i am using humor, or attempting humor, to distract me from the fact that i think i have ebola virus of the optic nerve, ben is still in WI for work, my other three children aren’t with me, and i am not with them, and i am probably coming home with a child back on tube feeds indefinitely. but i have to keep telling myself, its not a step backwards. its just a step. just one step in kendall’s journey.  I know we are here for a reason. i begged and pleaded with God to only let us come inpatient if it meant answers. So i have to believe that SOMETHING will come out of this stay. 

She does get to go have an actual imaging study tomorrow. and boy does it sound like a hootin’ hollerin’ good time – a barium enema. Not to be confused with a barium swallow study – no, no. this time they’ll shove the barium UP the exit-hole and see what happens to it. how they come up with these tests is really beyond me. but if it tells us more about why kendall cannot seem to regulate her own GI tract, then great. so we’ll have that fun test bright and early thursday morning. We are still waiting to hear if they can coordinate an OR for us to have a few other imaging tests done while we’re inpatient here on Friday, vs waiting till next thursday and doing it outpatient (as was already planned, just not for as much testing as we are now looking at trying to order). i am VERY grateful that at least this GI is finally listening to us when we are saying ” LOOK INSIDE THIS CHILD PLEASE!!!!” Playing “pin the meds on the baby” isn’t working for her anymore, and I’d REALLY like to break this 2.5 month streak between hospital stays at some point in her first year of life. If we could just have SOME kind of prognosis about who/what/when/where/why she is still struggling with her dysphagia (not swallowing right), and food allergies (to completely hypoallergenic elemental foods), and then throwing up most of what she eats (in spite of 4 or 5 different meds to stop that), then we’ll be good. i do’nt need to have a written in stone answer handed down from Mt. Sinai (although that might come in handy!), i just need to have at least a dartboard to start throwing darts at. Right now I feel like we’re just throwing a bunch of darts up in the air while being blindfolded.

I can pinpoint that its clearly exposure to heat and humidity making her go all rag-doll like and stop functioning from a GI standpoint. the question is WHY. sure we all get affected by the heat to some degree, but you don’t just see a bunch of people puking their guts out laying around on their driveways because it got a little humid outside. So something in kendall’s makeup has her just a little too sensitive to it all. Her system is working just a little too hard to try to maintain a baseline. And i just need to know what is the plan to try to support her. Cause it just really isn’t going to work out for me to run her up here for a tune-up every two weeks. there has to be a better way.

But we can only take it one step at a time, so that’s what we’ll do. Starting tomorrow morning.

sorry to be so rambly – apparently my starbucks induced hyperactivity just came to a screeching halt!

i’ll post more tomorrow when we know something.

 

terra