Post Scope Update

We wanted to let everyone know that the bladder scope went well today (the wait to get in was much longer than the procedure itself). Courtney and I went into the Operating Room again to practice using the catheter on Jacob. It was much easier this time than it was before and we praise God for this. Jacob has a couple of appointments and follow-ups to go to between now and next Tuesday and then perhaps we'll be able to head home to Chattanooga after that.

James went to visit his cousins Ronnie and Joshua for the day (and effectively set up a triple team on his Aunt RoRo). James did get to go back to his preschool today here that he had attended throughout August and September. It was great for him to be able to attend again and see some of his friends at Uncle Ron and Aunt RoRo's church. We are so thankful for their willingness to allow him to attend.

Please pray for continued healing for Jacob and for Courtney and me as we administer meds and catheterize regularly. We are still a little nervous about the whole cath process in light of what happened before, but we know that the Lord is stronger and greater than any of these challenges. Likewise, there is nothing that we go through for which He does not also go through with us.

Praise be to THE King of all kings,

Daddy BA

It's Been Awhile - an update

Our apologies for not providing an update in awhile. The last week and a half have been a little bit wild and crazy. Last week, while James and I were back in Chattanooga, Jacob had a pretty rough week with bladder spasms and some general discomfort in his belly (and perhaps elsewhere). This resulted in a rough week for Courtney as neither were able to sleep very well. James and I returned to Baltimore this past Sunday and after several visits to various doctors this week and some slight adjustments and changes in meds, Jacob is sleeping a little better at night.

Jacob is scheduled to have his bladder scope tomorrow morning at 11 am. Please pray that everything will go well and that Courtney and I will become comfortable with the catheterization process once again. Also, please pray that we might be able to all head home soon. If things go well this time, we may be able to head home by the middle of next week.

We'll try to get another update in tomorrow evening after the procedure.

The Lord is gracious and merciful.

Daddy BA

Update from this week

Jacob's scope this past Wednesday went well. Thank you for your prayers. He did not have to be admitted to the hospital afterwards, and we certainly praise God for that. The doctors inserted a catheter that will remain in place until around the 29th of this month. At that time, he will have another scope done and we will again practice doing the catheterizing on our own. There may be one additional follow-up shortly after that and then by God's grace, we hope to come home.

I drove back to Chattanooga this past Thursday and will be working here and helping Gran take care of James. It will be great to have James here with me, but much more so when all four of us can be together again. Please pray that this will be soon. Please pray specifically for Courtney and Jacob as they remain in Baltimore during these next couple of weeks. Jacob continues to be on three medications and is being weened off of two of them. Please pray that he will not have any of the symptoms that can occur when coming off of pain medications and that he will stay well over the next few weeks. Please pray for Courtney, too, that God will grant her the strength she needs to care for Jacob and herself. I am thankful that we have family up there who live pretty close and can be an outlet for Courtney and Jacob to be able to get out and about. We thank the Lord often for leading us to Johns Hopkins and, despite all of the challenges involved, also allowing us to be in a place where we have family close by.

In addition to the things mentioned above, please also pray that one of Jacob's pin sites will heal. This was the same pin site that we trouble with when the pins and fixater were still in and now that the metal is all out, the "wound" continues to have trouble closing up. When he had the procedure done this past Wednesday, they gave us some things to help treat this site because it has shown signs of infection. Please pray that it will heal quickly and completely.

One last thing for now, and this one is a praise. In about five more days,we will be able to remove the wrap from Jacob's legs and he can begin to put some weight on them. He has been moving his legs quite well since the pins were removed and we truly look forward to getting him "back on his feet."

"Open the eyes of our hearts, Lord, so that we can see you high and lifted up, shining in the light of your glory."

Daddy BA

A slight change in plans - prayer requests

Late Sunday afternoon and evening, we began having trouble catheterizing Jacob. He was in a lot of pain and we could not get the cath to go into his bladder. After two unsuccessful attempts, we talked to the Urology team and they advised us to bring him to the ER. They met us there and also attempted to cath Jacob and were also unsuccessful. The Urologist on call discovered that there was a "false entry" point that had been created slightly above the regular "pee" outlet. We are not sure how this occurred because we had been successfully cathing for several days. So, we have stopped cathing and are using the SP tube for now to drain his bladder.

Tomorrow morning at 9 am, Jacob is scheduled to go to the Operating Room to have another scope done on his bladder and also have a cath put in. This will remain in place for about two weeks and if all goes well here, we may be able to come home shortly after that. I plan to go back to Chattanooga on Thursday and help Melanie (Gran) take care of James (they returned to Knoxville this past Sunday). I will then come back up towards the end of the two week period.

Please pray for Jacob tomorrow as he undergoes this procedure. Please also pray that he will begin "peeing" through the correct path and that he will continue to heal from his previous surgeries. One of his pin sites (where the pins used to be) has shown some signs of infection, so please pray that this particular site will heal as well. We are thankful that he has been very cheerful since his initial release from the hospital and has been a absolute joy to see his vocabulary and personalities both begin to really develop.

This slight setback is definitely a little frustrating for us, but we are confident in knowing that the Lord works all things according to His good will and continue to pray that He will be glorified.

"His name is Wonderful, Jesus our Lord."

Daddy BA

Elvis (Jacob) has left the building (hospital)

We are so happy to report that as of Friday afternoon, Jacob was released from the hospital. He has a follow-up appointment with his Urologist on Tuesday morning, and then our plan is to hit the road and head for home. Jacob was absolutely thrilled to get out of the hospital. We rolled him to the house where we are staying in a stroller and he had a huge grin on his face the whole time. Thank you so much for your faithful prayers to this point. After just over 10 weeks in the hospital, we are so thankful to be close to returning to Chattanooga. We thank the Lord for his abundant grace and mercy that He has displayed during this time.

Jacob will require some "extra" attention over the next few weeks. We will be catheterizing him every four hours or so and continue to use the SP tube in between. The SP tube will remain in him as a back up for about the next two weeks. Please pray that Jacob will gradually gain more control over his urination and be able to begin voiding some on his own, so that we can feel safe in removing the SP tube.

In addition, Jacob will be taking four different meds for the next few weeks, two of which will require us to follow a weaning schedule. Please pray that we will be diligent in keeping up with his meds (we gather from his expressions that some of these do not taste all that good).

Also, Jacob's legs will have to remain wrapped for two weeks before he can begin any sort of weight bearing activities. He is able to bend his knees, but his legs must remain together (outside of cathing and bathing). He is gradually regaining strength in his neck, arms and back. As expected, these areas are fairly week due to the length of time he was on his back. Please pray that the overall healing process will go well and that, but God's grace, he might be able to walk before long. He will begin physical therapy after the two week "wrap" period is over.

Papa, Gran and James left today, heading for Knoxville. Please pray for safety in travel for them. Our travel plan is to leave Tuesday after the appointment and arrive back in Chattanooga either the same day or on Wednesday. Please pray for Jacob as he has not traveled well following his last couple of hospital stays. Also, Mommy CA and I will be driving separately (two vehicles), so we especially covet your prayers for this "last leg" of the journey.

To Him who is able to do (and has done) more than we can ask or imagine,

Daddy BA

Say Goodbye to the Pins and throw in a surprise

After 10 weeks of pins, a fixator and traction, we were finally able to officially say goodbye to them today. They were removed as part of a procedure that also involved a second scope of his bladder. I'll speak about the scope in a few moments, but wanted to let everyone know that Jacob looks great without all of the metal in/on him and what a joy it was for us to be able to hold him in our arms again. He seemed to really relish the moment and did want to be put back into his bed. The entire procedure took about an hour or so, with an additional hour of recovery. Jacob has typically come out of these procedures and surgeries a little groggy and cranky, but not this time. He was about as happy as we've seen him in quite a while and his Mommy and I definitely shared in this joy with him. Please take a moment to praise the Lord for all He has done for Jacob through the skilled hands of the doctors and nurses here at Hopkins.

Now, as for the bladder scope, it revealed that there is basically some scar tissue that has blocked his urine from properly passing through his urethra. Dr. Gearhart and his team brought Courtney and me into the Operating Room to show us how to catheterize Jacob. He had mentioned to us that this was a possibility, so it was not a surprise when we were called to go back, although we really didn't know what it might involve. However, as soon as we arrived, we were greeted with a most pleasant surprise. Dr. G said something to the effect of, "I believe this boy has some continence" (meaning that he has at least some ability to control the flow of liquid from his bladder.) This was absolutely unexpected and Dr. G noted that this is extremely rare in cloacal exstrophy patients due to the issues with their spinal columns and the associated nerves in that area. We do not know exactly what this may mean for Jacob in the long run, although there is a possibility that he may not need to have some of the bladder augmentation/catheterization surgeries later in life and may be able to begin training himself to do this at a slightly younger age than we expected. At this point, though, we are just so thankful to have the pins out and then on top of that, to really see the Lord choose to display His power, love and mercy before so many here at the hospital. We are reminded that nothing is impossible for our Lord, no matter how great the "odds."

Courtney and I will be responsible for catheterizing Jacob on a fairly regular basis, at least until he begins to exhibit a bit more control over this area. It is not a difficult task to actually carry out, but it is very uncomfortable for Jacob right now and will take some time before he (and we) get used to it. Please pray for us as we take on this new responsibility and pray that this indeed will get things flowing in the right direction and from the right place.

We will likely be discharged from the hospital on Friday and then have a follow-up with Dr. G next Tuesday. We may be able to come back to Chattanooga shortly after that.

We ask for your continued prayers as we get closer to the end of this particular journey in our lives, but also ask that you remember to thank and praise the Lord as well, for He has truly done great things.

May God and God alone be glorified.

Daddy BA

Quick Note regarding tomorrow's procedure

Just wanted to let everyone know that the scope and pin removal procedures are scheduled for 2 pm tomorrow (10/8). As these are both relatively minor procedures, the time may change (earlier or later), but this is the plan as of now. We are really looking forward to being able to hold Jacob again and also get one step closer to being discharged from the hospital. We don't know for sure exactly when he will be released, but it could be by the end of the week. We will likely remain in Baltimore, though, for a few days, especially until things are "flowing" well from his bladder.

Please pray that tomorrow's procedure's will go as planned, especially as it pertains to the bladder draining fluid properly. Pray for wisdom, clarity and skill for the two surgeons who are involved. And praise the Lord for all He has done for us during this challenging time.

We hope to update everyone sometime tomorrow evening.

All power, majesty and praise be to our Lord and King.

Daddy BA