Morning Update

We met with Dr. G this morning and he reviewed all of the results from the day before.  He arranged an appointment with Dr. Ahn, our nuerosurgeon, tomorrow morning at 8:30.  He wants us to see if something may still be tied into the tethered cord.

Dr G also mentioned that sometimes these kids lose mobility and remain wheelchair bound.  He said we really need to treat the spina bifida separately from some of the other aspects.  He did, however, prescribe ditropan to try and help with some of the urinary issues we've been having.

Jacob feels stronly that it is the titanium bar and screws that are in his pelvis.  His Mommy and I sometimes forget that Jacob, now almost 10, can and should provide insight on what is going on when his body is hurting.   Dr. Sponseller will review the x rays when he returns next week.

So we are still not sure why Jacob can't walk and will determine what's next based on what Dr. Ahn tells us tomorrow.   We will also check for the results from the urine culture to see if anything there.

Thank you for your diligent prayers. 

There is Power in the Blood.

Mommy and Daddy

 

Still searching...

After many tests today, the doctors are still unsure as to why Jacob cannot walk.  Jacob has been released from the hospital for now and we are staying with a wonderful friend/former nurse of Jacob's.  We meet with Dr G tomorrow morning and hope to find out what to do next.  This is certainly frustrating, but we pray that the Lord will be glorified.

Leaning on the Everlasting Arms.

Mommy and Daddy

At Johns Hopkins - update

Jacob, Mommy and Daddy arrived safely at Hopkins last night and checked into the ER.  As of early this morning, all threedisciplines - urology, nuerology and orthopedic have seen Jacob.  None can find a conclusive link to the leg pain he has been having.  Neuro has ordered an abdominal MRI that will take place later today.  Otherwise, Jacob's pain remains a mystery.

Please continue to pray for answers and resultion to Jacob's  pain.  Also, all of our usual lodging places are full, so we'd ask that everyone pray for an opening.

While Jacob's leg pain remains a mystery to the doctors, we are thankful to serve a God who knows all things - nothing is hidden or surprising to Him.  We pray that He might reveal these things to us according to His good and perfect will.


Mommy and Daddy

Heading Back to Baltimore

Following the June surgery to remove a few bladder stones, Jacob had two really good months.  Other than some leakage from his continence stoma, he finished out his summer vacation and started back to school in early August. 


Then, at the end of August, we attended a family pool party where Jacob fell and seemed to hurt his leg.  During a routine check-up with his Pediatrician, earlier in the month, he had again tested positive for a urinary tract infection.  We checked with our local Urologist (the one who knew us from his time at Johns Hopkins) and he advised us to hold off on antibiotics unless Jacob was showing symptoms.  Since he was not showing symptoms, we held off, but when he started to lose mobility, we started it up again.  Towards the end of that week, Jacob was again feeling better so we attended another family birthday party where Jacob seemed to do very well. 


However, upon returning from the party (on Labor Day), he was again complaining about leg pain.  We continued with the antibiotic for the urinary tract infection, but after about seven days, he was not showing any improvement in his mobility.  We scheduled an appointment with the Urologist, who discovered a different infection in his bladder.  We started another antibiotic, meant to specifically target this UTI, praying diligently that this one would resolve his mobility issues.  As you may recall, he has had this cycle going on for about a year now.  After another week, his leg pain has not improved.  We had x-rays and a blood test this past week, but everything looks OK from those.  After consulting with our doctors here and calling Dr. G at Hopkins (and lots of prayers - thanks to the many who have prayed for us), we have decided to head back to Baltimore. 


The plan is to leave tomorrow morning (9/20) and take Jacob to the Emergency Room.  The reason for this is so that he can receive attention immediately and get admitted if necessary, rather than trying to schedule appointments (on Dr. G's advice).  As we prepare to leave, here are our primary prayer requests:


1.  For safety in travel tomorrow  - especially as their are reported gas shortages in various places from here in TN on up into VA. 
2.  That we will be able to quickly find some answers as to Jacob's mobility issues.  We pray that he will not need extensive surgery, although we know the Lord will be with us even if that is the case.
3.  That in the event that surgery is needed, Jacob's mobility will be restored.
4.  For the Lord's provision financially in terms of travel, lodging and meal expenses.  We hope to get into The Children's House for the duration of our stay, so we'd ask for prayers that a spot will be available for us.
5.  For James as he will be staying behind with Gran and Papa.  Please pray for them, too, as they take him back and forth to school, help with homework and prepare him for his two day SOAR adventure  (overnight camping trip) with his school. 
6.  For Mommy and Daddy, that we will rely totally on HIM to guide and provide for us.  This trip is a little different from some of others in that we really don't know how long we will be at Hopkins or what all Jacob will need to have done while there.
7.  Lastly, that we will be a witness to others who may not know Jesus as Savior, Lord and King.  He always puts these opportunities before us, whenever we are there, whether it be in the hospital or at The Children's House.


Thank you for your prayers and may God be glorified.


Mommy and Daddy

All done with a nice surprise

The doctor just came in and the stone is out.  In addition, as a wonderful surprise, he was able to remove the stone through the stoma without an incision.  

He should be released today and not require an overnight stay or an extra tube.  

Praise the Lord.

Mommy and Daddy

Surgery Day

Good morning.  We arrived at the hospital at 8am and Jacob is in the preparation area.  His surgery is scheduled to start at about 9:50 and last for about two hours (maybe less).  As of now, he will need to stay overnight for observation in the PACU, but could be released as early as 7 am tomorrow.

Thank you for your prayers.

Daddy and Mommy

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