Fiona Midori King

Fiona Midori King

Hope 4 Fiona

From A Daddy's Heart

 

 

Paxton King-

 

Had some choking this evening and what looks like some pus and bubbling coming around the outside of the G-Tube port but the doc's say the tube port looks like its healing well with no infection. Seems odd to me that a white thick substance that bubbles a bit when she sneezes is normal, but that's what they tell me (if you can tell me otherwise, please do) She's been a little fussy as we put 85 mL into her over 20 minutes every 2 1/2 hours + med's (I think there's still about 10/day). I held her tonight for 2 hours and spent a lot of time looking into her eyes, but could never coax a smile from her. It just seemed she was content to be held by daddy (and hold my hand too). But no IV, no blood pressure meds now for 4 days, and we're talking about pulling the PICC line tomorrow and we've been discussing - just discussing - GOING HOME!!! She is not the same little girl from 30 days ago when she giggled and laughed and ate her meals from a spoon held by her mom. She can only move her eyes, eye lids, & her lips. We see the occasional cough, yawn and sneeze and periodically some choking although there is very little in her throat upon which to cough. I so miss my more animated daughter who would smile when she heard my voice & saw my face... But a daughter at home is FAR better than a doctor in a hospital. Today was my 4th weekend straight in a hospital, and our 17th straight day comes tomorrow as inpatients at Mayo Clinic. I am thoroughly drained. It’s like working 16 hour days for 4 weeks straight, then night you find a bed for 6 or 7 hours and grab a shower & coffee and do it again. And if I have to eat another slice of cafeteria pizza... Ugh! I SO need a break, as does Dee who rarely leaves Fiona Midori’s side. I just hope when this day comes to bring her home and we carry her into the house and place her in her favorite spot and tell her we love her that maybe, for a brief moment, we will see some happiness and a smile on that little face. When our minister came to pray over her, her eyes just lit up and she looked around the room. I still wonder what she saw? But we hope so very much that she wants to come back home for a little bit longer to be loved a bit longer by mommy and daddy before GM-1 extinguishes her light and she is granted her wings to fly high. I looked deep in her eyes tonight and asked her never to forget how much she’s loved and that daddy tried so hard to help her and save her, but just couldn’t. Asked her to remember how special she is and that she will be so badly missed when she leaves us. So… tonight Fiona is stronger than she’s been in weeks. She is quiet, but vitals are good, and food intake is reaching levels from pre-vaccination and pre-seizure (liquids only of course). They prayers have helped. Let’s get the little one back home soon…

 

 

 

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