The main reason for not posting is I was instructed by the staff in Cincinnati that I could not publicly post about any results while the trial was ongoing and even afterwards when the data is being analyzed. I signed a bunch of paperwork at the start of the trial and apparently I agreed to this stipulation in all the fine print - oops! I must be very careful about any information I divulge so I will be focusing on non-trial related news of which there is plenty.
What I can say is I know getting Joshua up to the top notch Cincinnati Children's Medical Center was well worth it, regardless of the results of the drug trial. I would definitely do it again, especially with our super helpful Aunt Karen up there to help us every step of the way. She was amazingly supportive and made the trips enjoyable with home-cooked meals and lots of sightseeing. Joshua paid for her services with many hugs and sincere laughs and smiles. I'm pretty sure Aunt Karen thought she got a pretty good deal!
As every year of Joshua's existence has been, this one was filled with highs and lows with many bumps in the road. We made it through some scary episodes, but I feel Joshua is in a much better place now then he was in the beginning of 2014 from a medical standpoint. He is basically off all maintenance antibiotics and we have a clear plan for weaning from his IV fluids in 2015 with the goal of removing his CVL as soon as it is safe to do so. Unfortunately, the plan involves a hole in his stomach with the surgical insertion of a g-tube for feeding and rehydration. I had desperately hoped to avoid this since Joshua has managed to make it so long without one which is unique for his condition. If we ultimately get to trade the CVL for the g-tube, we will take it since the CVL has so much more infection risk associated with it. The g-tube will allow us to provide bolus feeds during the day or continuous feeds at night along with the ability to provide extra fluids for rehydration when needed. While transitioning away from the IV fluids through the CVL, not having a means of giving Joshua extra fluids would mean many, many hospital stays in order to get a peripheral IV - something none of us want since hospital stays are very difficult on the whole family. So the g-tube is necessary for multiple reasons, I am just having a tough time accepting my baby going through yet another invasive surgery even if it is for the better in the long run. Hugging him and saying goodbye as he is taken back to the OR by a stranger gets harder every time, no matter if the surgery is considered "routine".
We made it through another terrifying central line infection in April caused by the nasty bacteria Klebsiella. The fever from this infection brought on a febrile seizure that landed Joshua in the PICU for the first time. Boy, I sure do hope we never see the inside of those walls again. After spending one night watching and listening to Joshua's poor little neighbor code seven times, I was exceedingly grateful to leave with nothing worse than a short seizure and sepsis. I am reminded over and over again every time we are admitted how fortunate we really are and how much worse Joshua's situation could be. I am also made to remember those things that are important versus others which are not. If your child was in the hospital and their condition was hanging in the balance - would you worry/stress/fret over that circumstance, detail, or plan? If the answer is no, then it's really not that important so give yourself and your family a break and don't get your panties in a wad over it!
The real theme of the year in my opinion has been Joshua's developmental delays, rigorous therapy schedule, and the eventual Autism Spectrum diagnosis he was given in October. And I thought I already had as much worry and anxiety as I could for our little superhero - wrong! I can't describe how much of a blow this was to me and David. We know so very little about how to help Joshua with this, but we will learn. Joshua is currently in Speech therapy, Occupational Therapy, Hippotherapy (horse therapy), Feeding therapy, and will be starting in an ABA program at UGA the second week of January. He is using sign language consistently and is able to communicate with us pretty effectively even with only one spoken word. His therapists continue to remark how smart he is and how quickly he picks up on things and I think speech is right around the corner.
The goals for 2015 will be continued early intervention for Mr. Joshua's delays and autism, as well as removal of the CVL after the g-tube is stable. He will also be starting at the special needs Pre-K in August for 3 hours a day (terribly exciting and frightening at the same time). I hope for less hospital admissions and more socialization with children his own age. I pray for patience for me and more fun times with my spouse. I give thanks for our extended families and dear friends that have carried us through the toughest times and provide us an outlet when we need it most. May the very best be in store for you and your family in the New Year!
