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

Slight Adjustment in Plans

Jacob is now scheduled to have his pins removed on Wednesday, rather than tomorrow. The urology team was already planning a second scope of his bladder and so everyone involved agreed that both should take place together. From a pain perspective, this should work out better for Jacob because he will be slightly sedated for the scope and now also the pin removal as well.

Jacob has done quite well over the past couple of days, especially considering the episode of fevers, diarrhea and flu like symptoms he had last week. He has especially improved in the area of fluids. He is drinking very well and no longer requires an IV. Thanks for all of the prayers that have been offered up for this specific concern.

We will update everyone again once the pins are out. We expect this procedure (and the scope) to take place sometime around mid-day or so on Wednesday.

The Lord is faithful, gracious and merciful beyond measure.

Daddy BA

Praise

Please rejoice with us that the cycle of high fevers that Jacob has been going through for the past day or so has subsided. He has had a pretty good day today and has been eating a little and drinking well. The doctors are still evaluating some labs to try and determine what caused this episode, but it appears to be related to some sort of bacterial or fungal infection, perhaps in or around the larger catheter tube. Jacob is still dealing with some diarrhea and a "sore" stomach, so please continue to pray that these things will clear up soon.

I (Daddy BA) arrived early this morning from Chattanooga. I'm thankful to the Lord for safety in travel and the ability to stay alert for the long and late trip.

As it stands now, we are still on for his pins and fixator to come out on Tuesday morning, 10/7.

We give thanks with grateful hearts for all the Lord has done for us.

Daddy BA

Urgent Prayer Request

Please pray for Jacob. Courtney just called and is very worried about Jacob. His fever was over 103 degrees today. Now it is down to 100.2, but he is shivering and fingers are blue and she is very worried. There are no results from the blood work yet, but Courtney wants your immediate prayers for him. Please pray for Bryan as he is driving up here tonight.

Prayer Request

Over the past eight hours or so, Jacob has spiked a fever of about 101 degrees and has been fairly uncomfortable for most of the night. He has also lost his appetite and is not drinking much in the way of fluids. In addition, one of the incisions from his first surgery appears to have opened up a little, but we don't know exactly what may have caused this, yet, or what steps the doctors may want to take to address it.

I will be heading up tonight and plan to arrive tomorrow afternoon. Please pray that Jacob's fever might come down, that Courtney will have the strength she needs to care for him (help is on the way), and that I might have safety in travel.

Thank you for your continued prayers and may God be glorified through these circumstances.

Daddy BA

Update and Praise

Jacob just now came out of the procedure (scope) and Dr. Gearhart advised that the problem appears to be the result of some swelling in his bladder neck. He does not think it will be a long term issue and he inserted a catheter into his urethra to promote draining in that area. They then plugged up the main catheter tube that they had been using to drain his bladder up to this point.

The plan now will be for Dr. G to, if necessary, perform another scope next week after the pins and fixator are removed. He noted that he can't lift Jacob's legs up to get a "better" view now, but will be able to do so once the pins are out. The procedure itself didn't take more than about five minutes and Jacob is now in the recovery room.

Thanks to everyone out there who prayed for Jacob during this time and really to all who have lifted him up at prayer during the past eight weeks. Please rejoice with us that the procedure went well and it appears to be something that will correct itself over time.

To God be the Glory.

Daddy BA

Quick Update

Jacob is scheduled to have a scope done on his bladder today at 2:30 pm. It may happen sooner if there is an opening, but this is the plan as it stands now. Jacob has been a little fussy today because he has not been able to eat anything in the time leading up to the procedure. Please pray that the Lord will grant wisdom to the doctors so that they may be able to properly diagnose and treat this drainage issue.

Please rejoice with us that the concern we had with his stoma does not appear to be a problem. The doctors advised that it will sometimes retract inside and then come out again later. They checked it out and said that it appears to be working as it should and that they see no reason to take any further action at this time.

May we lean wholly on the Everlasting Arms, with the faith and strength that He alone provides.

Daddy BA

Prayer Request

We'd like to ask everyone to pray for Jacob. His bladder is still not draining properly and the plan is for him to have a scope done tomorrow morning to see what might be causing this issue. It will involve light sedation and is supposed to be a fairly short procedure. It does, however, involve a trip to the Operating Room.

In addition, Courtney noticed that his stoma has recessed into his body, although it is still functioning properly. We are waiting to hear from the doctors as to what this might be and will update everyone once we know.

Please continue to hold Jacob up in your prayers, asking that the Lord may glorified in these circumstances and that those around us might, through our words and actions, see God's great faithfulness at work.

Daddy BA