Back in Baltimore 2016

After a year off from doctor visits and over two years since Jacob's last surgery, we have returned to Baltimore. As noted in the previous post (Jacob's timeline), he has a bladder stone that has been causing him (we think) to have recurring urinary tract infections. The stone is about 1 cm, which isn't huge, but isn't small. Our doctor in Chattanooga, Dr. Mullins, who also was a resident and fellow at Johns Hopkins, communicated directly with Dr. Gearhart to arrange for the stone to be removed while we were here for the picnic and doctor visits.

After an overnight stop off in Salem, VA (to see Bryan's parents and two grandmothers), we arrived in Baltimore this past Friday night. The annual Bladder Exstrophy picnic was on Saturday and we enjoy reconnecting with our cloacal exstrophy families (five in total - which sounds small until you consider that this birth defect only occurs in about one out of every 300,000 live births). We also celebrated 25 years of Dr. G being the Pediatric Urology Chief at Hopkins and 30 years of the BE Picnic. It was a great time.

Several of the families converged at the hotel (not planned) and hung out for awhile. Sunday, a few of us visited the Baltimore Zoo. Jacob especially enjoyed seeing the giraffes. Sunday night, we connected with Ms. Cathy, who was our long time Manager at The Children's House. It was great seeing her again.

Monday(yesterday), we had an appointment with Dr. Sponseller to check out Jacob's left leg and club foot. His report was generally positive and while we do need to try and bring Jacob's weight down a little, he did not feel like we needed surgery to address his club foot, at least not at this time. He thinks we can consider the serial casting process to try and increase mobility in his foot, but can do this in Chattanooga. It will essentially involve weekly casts that gradually stretch his Achilles tendon. This is not always successful, but would not require surgery. He also said that he didn't think we needed to see Neurology about Jacob's spine at this time. Overall, he seemed pleased and definitely wants to take a conservative approach, especially considering that Jacob will be having bladder surgery.

Today, Jacob had a CT scan at about 10 this morning. Thankfully, it required no sedation or dye and only took about two minutes. As an additional surprise/treat, we got to have lunch with "Kiki" (Karen), one of our most favorite nurses who has taken care of Jacob all the way back to his 2008 surgeries. Thank you, Lord, for these opportunities.

His surgery to remove the bladder stone is tomorrow morning at 9:30. We are to arrive at 8 am (which isn't as early as some of his previous surgeries). We aren't sure how long the surgery will last, but we do expect that Jacob will need to stay one night in the hospital. He, of course, doesn't want to have the surgery or stay in the hospital. He doesn't like the thought of an IV (not sure anyone does) and the general discomfort of coming off of anesthesia. However, we know he hasn't enjoyed the recurring infections and mobility issues that have been affecting him for the past few months.

As we prepare for tomorrow morning, we ask that you all pray for the following:

1. That you will grant the doctors success in accessing and removing the bladder stone.
2. That removing this stone will stop the urinary tract infections.
3. That he will be able to stop taking the daily antibiotics.
4. That his recover will be fast and that we will be able to head back to Chattanooga in the next couple of days. He is supposed to leave the hospital with a tube/catheter/SP tube in that we can have removed in Chattanooga.
5. That the LORD will be glorified through it all.

We also have a few praises:

1. For the encouraging report from Dr. Sponseller concerning his foot and leg.
2. While we were unable to get into the Children's House for the duration of our stay, we were able to get into one of the McElderry Houses, similar to where we stayed in 2008. These are much more reasonable that hotel rooms and are so close to the hospital. It is an entire house, too, so it gives us a feeling of home.
3. For the wonderful time of fellowship we've had with friends and the fantastic doctors, nurses and staff here at Hopkins.

We will try to provide updates throughout the day tomorrow.

Thank you for your prayers and support.

May God be glorified.


Mommy and Daddy