Tuesday Riley had his appt with lung transplant.
Labs all looked good. Still waiting on EBV. Riley did struggle some with pulmonary function testing so we will repeat the PFT’s in about 6 weeks when he sees heart transplant. Hopefully he can get his numbers up some. There will also be a repeat CT scan done towards the end of summer.
Riley’s weight is up to 63lbs from 58 when he was in for his bone infusion therapy last month. Can’t say we’re surprised given the added nutrition he’s being getting through his gtube since having to stop drinking by mouth due to the aspirating. No one is really quite sure as to what the goal is when it comes to Riley’s weight. The first 5 years he was in the one percentile. After transplant he bulked up to 60 percentile. As he learned to eat by mouth and was weaned down on steroids he went back down below the 10 percentile. Today he’s at 18. So for now since we are utilizing the gtube more since he can’t drink we are going to aim for 25 percentile and go from there.
We have not given up on Riley’s ability to drink again. He is working with speech to try and improve his technique. We are also in the process of trying to get Riley on Dr Zur’s (ENT) schedule for evaluation of vocal cord paralysis. She is already aware of Riley’s case per heart transplant and would like to see him. If Riley does have vocal cord paralysis there is a procedure called Renervation with EMG that could correct the problem. The last thing we want is to put Riley through another surgery but the last thing Riley wants is to never be able to drink again. That being said .. the phrase ‘quality of life’ was said more then any person would want to hear in an appointment. The reality is if we want to let Riley drink we could. He Will Be damaging his lungs. It’s almost looked at as he already beat the odds of being here 6 years post transplant and some people I guess would be happy they had that and therefore let Riley be happy Now by letting him drink. Knowing it will shorten his life but again we don’t know how much longer he’ll beat the odds so give him that quality of life now. That choice is on our shoulders. As Riley’s parents we’ve decided to not give that up yet. There are so many other things in Riley’s life that make him happy besides the ability to drink. We’ve taken away one thing with the hopes of finding an answer. We are praying that Dr Zur is that answer. If she’s not and the speech to improve his technique also doesn’t stop the aspirating .. we will then revisit the drinking versus quality of life debate.
We are in the process of planning a family meeting with Riley’s team. Also waiting to finalize an appt with Dr Zur. Riley has an appt with the bone health doctor in June and we will schedule his next heart transplant appt along with his CT scan and PFT’s.
Thank you all for being on this #Journey with Riley and our Family.
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.