That is today’s goal. Moving forward with Kendall’s feeds, moving forward with a plan to get her HOME, moving forward with the 9824 other things in life that have been put on hold while we try to figure out medical mystery child.
I am SO ready to move forward.
right now i am actually ready to move my foot forward onto the janitor who thinks its necessary to move kendalls bed around RIGHT NOW to get all the dirty laundry – yes i am sure that the three blankets and one sheet we have in there are of the utmost priority to the linen service. SHE IS ASLEEEEPPPPP!!!!!
Ok, brief rant aside.
Here is somewhat of an update of what is going on. I don’t know or remember what I have put on FB, what i have told some people in person – so I’ll just recap it all here.
Obviously – Plan B was enacted.
Plan B was originally to come have a PICC line placed (a type of more permanent IV that goes in the arm and directly to the heart – but not a PERMANENT permanent Iv. It’s a temporary permanent iv. Got it?) – and once the PICC line was in, we would start her on some PPN (partial parenteral nutrition) or TPN (total parenteral nutrition). The original plan was also that since we can all assume that this is unlikely to be a “quick fix”, that we would come home on the PICC, have home nursing come out and help adjust all these new IV foods/labs/etc, and life would move on.
Except that docs really don’t like doing that.
Nor do mommies.
The docs DO like to let little kids lay in the hospital for indeterminate amounts of time until little tummies wake up. Mommies do not.
Mommies like magic pills that don’t exist that make things all better and are the perfect happy medium between “laying in a hospital room” and “bringing a medically complex kid home with a known infection risk”.
Mommies never get their way.
So for right now, we are still stuck. Moving forward in the most miniscule infinitessimallly measurable of steps. I don’t know what the answer is, but I know Who Does. And I know that He has never let us down before. When things seem to be overwhelmingly dark, the light always shines. When it seems like we are stuck without answers – answers begin to show up. So while I may be barely stifling my frustrations and questions and whining under the surface – I will remain calm. I will wait for the right answer to be revealed here. Because i KNOW. IT. WILL.
Kendall does have the PICC in right now, and she is getting a modified form of “PPN” – we are giving her body a lot of carbs (sugar!!!) and electrolytes, no protein and no fat, through the PICC. She is on 10cc/hr of full strength formula – this is GREAT!!! And while its not going “smoothly” or “perfectly”, it is going. She finally pooped late yesterday afternoon – just a tidge under a week! I never thought i’d be so happy to change a stinky diaper – but it meant things were finally starting to “wake up” a little bit!
I can’t get any of the four nurses i have asked for an extra extension for kendall’s G-tube so that I can relieve the pressure that is building up in there – so now she is just leaking bile and formula out of the stoma (around where the balloon holds her button into place in her stomach). But I think I just finally got one to understand that I am not asking for one from Santa Claus for Christmas, i need it RIGHT NOW. They are also going to bump her feeds up from 10cc to 20cc and see how she tolerates that! That would be awesome if it works! Because if we can get her up to her goal of 40 cc – I think we can bust outta here!
I am still up in the air about what to do about the PICC. I know she needed it. And right now, even though things are waking up, I know that most of that is because she is getting the fluids/hydration she needs through the IV. I am the teeniest bit worried that once we take her off the IV fluids again, she will start having a rough time again. BUT – i am leaving that in God’s hands. I have way too many other fun things to worry about – like dance auditions for the girls, seeing all my babies all together again, catching up on laundry and cleaning, getting geared up for a great awesome fun year of Kidstown (the kids program I work with as my PT job at our church)!!! And Just Moving Forward with LIFE!!!!
So keep those prayers comin’ for this little monkey’s tummy. It is not real happy with us at the moment, but hopefully it can remain un-angry enough to let us prove to the docs that we can go HOME before we sit here all weekend doing NOTHING!!!
(and now i am hopefully going to go back and update some pittsburgh info – since all of that is now quickly slipping from my memory!)
love and hugs –