Did you hear? Boston Children’s Hospital was ranked #1 again by U.S. News & World Report. Not only that, but the Urology team was ranked #1 too! We certainly aren’t surprised. In case you can’t tell from our posts, we may have fallen in love with Boston Children’s Hospital. There are some great superstars providing outstanding care to families just like ours.
Speaking of superstars. We have our very own superstar living with us. After Julia’s surgery Dr. Borer approached us about being interviewed for their website to help inform other families about bladder exstrophy, and hopefully help parents make a decision about care for their child. Sean and I of course said yes. Well the story was just published today. You can view it in two different places on Boston Children’s Hospital website. The more in depth story is under Patients’ Stories, and the other is under their Greatest Children’s Stories. Feel free to share these stories on your social media sites. The more we share them the more informed people will be, and hopefully parents like us will feel a little better knowing that they are not alone.
We sure did miss our Boston family this past month and a half. It seems like we’ve been home so much longer. Guess with the girls getting out of school for the Summer and moving into our dream home that’s to be expected.
Yesterday Sean, Julia, and I hopped on a plane and headed to Boston for some follow up visits. This was Julia’s first time flying and she was a pro. She had her first appointment yesterday afternoon with opthamology. If you remember in one of my previous posts I kind of complained about how they were nearly impossible to see (no pun intended 😉). Well now that we have been to a couple of appointments, we forgive them. Julia’s doctor has been great. This time he did another full exam of both eyes for any changes and had us get an ultrasound done of them too. Things seem to be about the same. We’re still not sure exactly what she can see out of her left eye, but it responded to light so we’re going to try patching her right eye for thirty minutes a day to help strengthen it and see what develops. Her doctor also spoke very highly of MUSC’s pediatric opthamology department so hopefully they will live up to his praise.
Today was a very busy day for Julia. We started out with a visit to dermatology. Her bottom has still been healing from the horrible diaper rash she developed while in the hospital after her bladder closure surgery. Yes, her poor bottom has been trying to heal since the end of March. While it does look way better there are still a few areas trying to fully heal. We didn’t really receive any new information but I wanted to make sure there wasn’t anything more we could do since we don’t see our Charleston dermatologist until next week. We are looking forward to finally meeting her as we have heard only good things about her.
After dermatology we headed to radiology. Julia needed to get a DMSA injection for a later scan to check on her kidneys. This was definitely the worst part of her day. The technician had a hard time finding a good vein on Julia. After finding one that may work it ending up not letting the dye go in so they had to try again. The second time did work but boy was Julia ticked off. We haven’t seen her that mad since her PIC line was removed after her surgery. After some cuddles we moved to another area of radiology to get an ultrasound done of her kidneys then another area to get an X-ray of her abdomen. Poor baby was worn out after all of that. Sean and I grabbed a quick bite to eat in the cafeteria, then decided to wait in the urology waiting area until our next appointment, the DMSA scan.
In case you haven’t been paying attention, we really like the urology department. Especially The Big Three. At first Sean asked if we should go wait in the radiology waiting area for the hour we still had, but I said I’d rather go hangout in urology in case we could say some more hellos. Well good thing we did because all three of our favorite people were available to see us. We got Julia’s vitals done and went ahead with her exam which she passed with flying colors. We then went off to radiology one more time for the final scan.
What we thought would be a quick 10 minute scan, which they preferred her asleep for, ended up being a thirty minute scan. And this was when Julia should be getting hungry, not tired. Luckily when they swaddled her she started sucking on her pacifier and fell asleep. We then went back to urology to review all of the imaging she had done. Everything looks great. She still has some reflux to her kidneys, but nothing to be concerned about. Julia has continued to heal nicely and her bladder continues to do what it should. After lots of hugs and trying to get them to move to Charleston, we headed to the airport.
We are now back in Charleston with our big girls and ready to get some rest. Thank you Dr. Borer, Rosemary, Lauren, & team for a wonderful visit. We’ll see you in September.
Today was a big day. Almost exactly one month after Julia’s bladder repair surgery, her cast came off! Yay! We are now back to being able to change diapers regularly, take baths, wear bottoms to clothes, cuddle more easily, and see her kick her little legs. Oh how I’ve missed seeing those cute little legs.
We started off the day seeing our favorite urologist, Dr. Borer. He did the honors of removing Julia’s cast and lifting her out of it. Her little legs started moving as soon as they were free. Next up was an ultrasound of her kidneys and bladder to make sure everything looks good post surgery. We then took her to get an x-ray with dye going through her suprapubic tube to see if it drained from her bladder out the way it should.
After all of that we went back to see Dr. Borer. He couldn’t hide his excitement. Everything is looking great. Go Julia! Next step was to start clamping her suprapubic (SP) tube. Dr. Borer clamped it and sent us on to our final appointment, orthopedics, and told us to come back in two hours. Orthopedics was quick and easy. The cast was more or less gentle on her sensitive skin and her pelvic bones look good.
Back at Dr. Borer’s office we checked her SP tube for urine and only drained 4 milliliters. We then checked her diaper and there was urine in it. Yay! Never did I think I would get so excited over a wet diaper. Dr. Borer showed us how to cap Julia’s tube and drain it. We are now checking it every two hours like we did at his office and recording the results, with the exception of over night where we attach the bag back to the SP tube to drain. Over the next few days we will share the data with him and slowly increase the time in between checking the tube until it can be removed. Once that happens, we’re coming HOME!
For now we are just grateful for good news and counting down the days until our sweet little family can be together again.