Getting ready for surgery.

We visited Boston Children's Hospital back in May. While we were there, we had some imaging and underwent neurological testing of the bladder. I was so impressed by the way that we were treated there that our decision to take Lochlan's urological care to Boston, now seems like a no-brainer. The good news is that Lochlan's bladder and lower GI function all seem intact. Lochlan's neurologist would like to do an MRI at some point to rule out a tethered spinal cord, but he gave us his blessing to go ahead and find a permanent way for Lochlan to urinate. We have booked the OR for this Friday.

In order to prevent Lochlan from undergoing unnecessary anesthesia, they plan on using a scope to evaluate Lochlan's urethral stricture, and then doing the surgery while he is still under anesthesia. The urology team is optimistic that they will be able to reconstruct his urethra, but they will not be certain until they use the scope. If they are unable to reconnect Lochlan's urethra, they will find another permanent solution. Lochlan's urologist has estimated that we will be in the hospital for 5 days and then we will need to stay in the area for another 2 weeks. 

There are way too many factors to be nervous about. This week has been horrible. Lochlan has been vomiting non-stop and everyone has been sick (except Declan of course, knock on wood). My biggest fear is that Lochlan will not be well enough to get surgery, or his blood work will be awful. I have already taken 3 weeks off at work, and it will be impossible to get the time back if we have to reschedule. I'm also worried that reconstructing his urethra will result in more strictures and surgeries. Our number one priority has always been Lochlan's quality of life, and a surgery that leads to more surgeries is not what we want for Lochlan. It could also delay Lochlan's kidney transplant.

We have been trying to ignore the overall doom and gloom feeling that came with scheduling the surgery, but we just can't shake it. Every year we look forward to going to Martha's Vineyard with my parents, but we could not make it happen this year because of the surgery. Even last year, when we were at our lowest, we looked forward to celebrating the end of summer at the ocean. This year it felt like the summer ended before it even began because there was nothing fun to look forward to. 

Adam and I will be taking turns staying Boston with Lochlan during the three weeks. We are so fortunate that we have family who have taken time off of work and rearranged their schedules to keep Declan on his routine and in preschool. My heart breaks thinking about spending so much time away from him, and I worry that Lochlan will miss Declan too.

Stress is at an all time high as we plan this trip. There are so many variables and things that could go wrong. I'm not sure that I will continue to pump while I am there alone. It has been hard enough pumping for the last 15 months. Lochlan's homemade  blenderized diet will also be impossible to  continue while there. I am so grateful for friends who have contributed by donating breast milk. One friends has pumped 100s of bags of milk for Lochlan. It amazes me how kind people have been. Lochlan is well loved for sure, and I have faith that the human spirit will continue to help us through tough times ahead. I am hoping that at the end of our trip it will just be a hurdle that we have crossed, and not have to go back.