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
Tuesday, October 14, 2008
Sunday, October 12, 2008
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
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
Wednesday, October 8, 2008
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
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
Tuesday, October 7, 2008
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
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
Monday, October 6, 2008
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
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
Saturday, October 4, 2008
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
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
Friday, October 3, 2008
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.
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