Bee was admitted to the hospital.
Barely 18 lbs at 3 1/2 years old, she was starving to death. Severely malnourished, and with stunted growth, despite one attempt after another, the team was unable to do enough to help her tolerate feeds. Thickening, adding calories, different formulas (she has been on every formula on the market in Ontario that isn't manufactured for a specific diet (eg: keto) or specific metabolic disorder), different tubes, rates, medications... they had all failed, and she was admitted to the hospital for intensive observation to see if there was something they were missing. During this admission, she was started on TPN for the 3rd time, hopefully with the goal of letting her gut rest and recuperate. She was discharged the day before her Wish trip, then readmitted for a surgery that we were told was our only option.
The surgery failed - 6 weeks later, she was further behind than she had been when she was admitted. Not tolerating any feeds, she was reliant entirely on TPN, and despite many efforts, we were making no headway.
The Chief of Peds walked in one morning and informed me that if we wanted to take Bee home, she would have to go on TPN.
Bee's GI told us that if she was dependent on TPN, she would not live for another 2 years. She would die from severe sepsis, or liver failure, or worse... We were not trying hard enough, he said. We had given up, he said. If we saw other doctors, or gave her different meds, or agreed to more surgery... it would get better, he said.
Against his advice, but with the full support of the Chief of Peds, on May 12th, 2009, Bee came home on TPN. She had been in it since April 8th (this time around), the day after the failed operation.
In the 3 years, 7 months and 28 days since we brought her home, Bee has been septic repeatedly, had many stays in different critical/intensive care units, been transferred from one hospital or unit to another when her care needs were too great for her current location, developed drug induced hepatitis, liver failure, kidney dysfunction and so on. In February, she was referred to Hospice. She has been poked, prodded, harassed and interfered with. Every day, every single stinking day, we have gone through the routine of preparing and connecting her TPN. The very same formula that we were told was going to be her end, we have been knowingly and begrudgingly infusing into her body. It is the epitome of the love/hate relationship - without it, she would be gone already. With it, are we just postponing the inevitable?
Today, Bee is 7 years, 2 months and 17 days old. She has spent well over 1/3 of her life inpatient in the hospital or at various clinic appointments. She has been on TPN for more than 1/2 of her life. She has had some sort of central venous access for 3/4 of her life, tubes of one variety or another for even longer.
But...
Today, January 10th, 2013...
All that changes.
Today, January 10th, 2013, exactly 4 years to the day from her admission that sped up the spiral and led us here...
Bee's TPN has been discontinued.
Tonight, for the first time in nearly 4 years, Bee will go to bed at home without being connected to tubes/pumps/fluids.
Tonight, she is a free bird. There is no explanation as to why she is tolerating enteral feeds, and we have decided it doesn't matter. Will she need TPN again in the future? Maybe. Will we be crestfallen if she does? Probably, but we'll adapt.
However, tonight, January 10, 2013, I will sit in her room, listen to no pump whirring and beeping, and gaze upon our special gift... our little miracle.