My friends, I am truly sorry to have left you hanging so rudely right at this spot. I have not had working internet or computer for two days, and believe me, I have been feeling the responsibility like a heavy weight. Joe came tonight to pick up the non-functional laptop and leave our old one here with me. The old laptop is not letting me access the photos, so they will have to wait until I can get tech support from Joseph when he is awake tomorrow morning.
If the current internet access holds until tomorrow afternoon, I hope to catch up then on all the waiting emails!
Katie has gone from 5 to 20 mLs/hour of food continuously through her NG tube since Sunday, with the plan to increase by 5 mLs/hour per day until she reaches 45 mLs/hour. Today she reached 25 mLs/hour, and all her labwork shows that she is handling the increase very well so far.
Some of you may be interested to know that her nutritionists are estimating that she was receiving about 600 calories per day on the diet that the orphanage was giving her, and it was severely deficient in many vital nutrients. For instance, her gums are swollen, inflamed and bleeding due to a serious lack of vitamin C in her diet, and she is currently receiving doses of ascorbic acid three times a day through her NG tube.
When she reaches 30 mLs/hour, they will be adding 5 mLs of my milk every hour as an injection via syringe into her NG tube. This injection of food into a feeding tube using a syringe is also known as a bolus feed. This is how we fed Katie last week, and how we fed Verity last year during the weeks she had an NG tube.
Tomorrow, there will be an interruption to Katie’s progression toward more calories. After midnight, she will receive only IV fluids until her PICC line is placed sometime during the day on Wednesday. This is a procedure that will require her to be under anesthesia.
In order to enable the doctors to keep close watch over her electrolytes and blood sugar during this crucial time, as well as begin to rule out a long list of possible health issues, Katie has needed to have so many pricks and blood draws that she is quite speckled and bruised. Her list of necessary blood work is so long, and her available blood supply so small, that this procedure will go on for some time to come. The PICC line will provide comparatively safe access to her blood without traumatizing her every time.
A long succession of specialists have come to examine our rare treasure over the past three days. The highlights I can think of right now~
Katie’s heart is perfectly normal. Now is the time to tell you that we were aware that there was a possibility that she would need open heart surgery, so we are thankful to learn that her heart was better than her official medical report stated, and not worse. This also reveals to us what we suspected–the unlikelihood that she was actually examined by a cardiologist annually or received an echo as her medical report claimed was the case.
Her bones are so porous due to malnutrition that they are like the bones of a little old lady with osteoporosis. Her spine shows that she has had multiple compression fractures due to improper handling of her fragile bones.
Not surprisingly, during this hospitalization, Katie has regressed in her attachment process. She was very cranky during all her waking hours on Tuesday. I have so much more to write about this, but, uh, yep–it will have to wait as well. Katie just needed her whole bed changed, I haven’t slept yet tonight, I need to put away the milk from the last pumping, wash bottles and pump parts, get myself ready for bed, it’s past 1:30 am, and 4 am is coming soon! And she is beginning to fuss again. As one of my new friends recently said, “This is the hardest work I’ve ever loved!”
That’s all I can think of that should be in this initial update, except to ask for prayer for all of us right now. This tough time is temporary, and YES!!! It is worth every difficulty!!!! And we appreciate your prayers more than I can adequately say. If I try to verbalize it, it comes out in tears instead of words.
My prayers these days are simple. “Help!”
I am determined that my next blog post will be a joyful one. But you are also welcome to put your questions into emails and comments for an upcoming Q & A.
Thank you, friends. Bless you.
“He shall call upon me, and I will answer him; I will be with him in trouble…”