After a good visit with family and friends in Cockeysville (MD), Salem (VA), Knoxville (TN) as well as the aforementioned doctors appointments, we arrived safely back in Chattanooga this past Thursday. We met with Dr. Gearhart (Urology) this past Tuesday to discuss the SP tube and the issues Jacob has been having with his urethra (some slight bleeding). Dr. G thinks that the pelvic plate that was inserted during the bladder closure surgery this past fall may be impeding on the urethral tube and perhaps causing the bleeding and some of the discomfort he seems to have in that area.
He advised that he will perform another scope on the same day that we have the stoma revision with Dr. Lau. Initially, we thought this would be on Feb 3rd, but in order to schedule both doctors on the same day, we moved the date to the 10th. The purpose of the scope is to see if the plate is indeed causing some problems and also check to see why he still is unable to pee from that opening. If the plate is causing problems, it will need to be removed. Since the plate is part of the orthopedic side of things, Dr. Sponseller will be the one to remove it, if necessary.
We should point out that the plate, which is made out of titanium, was put in to help stabilize his pelvic bones. We found out that it does normally need to come out at some point, although they usually like for it to stay in a little longer. In Jacob's case, they feel like his pelvic bones have healed well and that should it need to come out, his pelvic bones should remain fairly stable with only a slight bit of movement possible.
Dr. Sponseller will not, however, remove it during this upcoming surgery, rather, it will likely be in a couple of months. This will allow him time to heal from the stoma revision surgery. Also, we did find out that the expected recovery time for the stoma revision is 5-6 days. Please pray that this will hold true as we certainly do not wish to have another extended stay at the hospital, especially knowing that we may need to return again in a couple of months. Also, winter travel between Chattanooga and Baltimore can be tricky at times as well.
Dr. Gearhart was very impressed with how well Jacob's mobility has improved. Jacob tooled around the hallways near his office with his little walker and Dr. G loved it. It is truly an example of how God has blessed us and how He has answered the faithful prayers that so many have offered up on our behalf. In addition, as of the time we are writing this, Jacob has now taken about ten steps on his own and seems to be growing stronger each day. We have much to be thankful for at this time.
In closing, we ask that you pray for us as we prepare for the next round in "Jacob's Journey". We will probably leave for Baltimore on Feb 7th or 8th as there is a rather extensive "bowel prep" that must take place prior to the stoma revision. Please pray for the doctors who will be involved and that the outcome will bring glory to the Lord of all creation. Please pray for James as he will likely stay here in Chattanooga with Gran so he won't miss any school. I (Daddy BA) will likely come back to Chattanooga shortly after the surgery to come back to work and help with James. We'll try to provide another update once we begin our trip to Baltimore, unless something changes between now and then.
God of all gods, King of all kings, to whom all praise, glory and honor is due,
The Arringtons
Sunday, January 25, 2009
Sunday, January 18, 2009
The latest news...
Well, as many can tell, we are not the best "bloggers" in the world and we do apologize for the lack of recent updates. However, we do want to give everyone an update on how everything is going. Jacob has made very good progress from a mobility standpoint. He crawls well and has begun climbing again (something he was pretty good at prior to the last surgeries. He walks very well with the help of his little walker. He has stood and balanced by himself a few times, but hasn't quite taken any unassisted steps, yet. He seems to be close, though. We are very grateful for all the Lord has done for him. Thanks to everyone who continues to pray for Jacob and our entire family.
His stoma, however, continues to be an area of concern. Just this past week, we drove up to Baltimore, where we are currently, to have the General Ped Surgeon check it out. We have been dilating his stoma regularly, but we have been praying for another solution. It has been torture on both he and us having to do this and also it has become more difficult as he has become stronger. Thankfully, the doctor here feels like a stoma revision is in order and has scheduled this for Feb 3. We have one additional doctor visit this coming Tuesday, Jan 20, then we plan to return home until a few days prior to the next surgery. The doctor feels like the revision to the stoma will help with his gas and general "plumbing" issues he has been having. He is not 100% sure what this revision will like, but it may involve moving the stoma slightly below where it is currently. He feels like the recovery time in the hospital will not be more than about 5-6 days for this surgery. Please pray that the surgery will be a success and that the recovery time will be no more than expected.
Oh, and we should mention that the doctor visit this week will be with Dr. G regarding the Urology side of things. Jacob is still using the SP tube and bag, and we feel like we will likely continue. However, he has had some "scant" bleeding (kind of like spotting) from his urethra, and so we don't know if this will be a concern or not. We will try to post some more details on this later this coming week.
We once again thank you for your prayers, despite our less that stellar efforts to keep everyone informed.
God is faithful and will accomplish more than we can every ask or imagine.
The Arringtons
His stoma, however, continues to be an area of concern. Just this past week, we drove up to Baltimore, where we are currently, to have the General Ped Surgeon check it out. We have been dilating his stoma regularly, but we have been praying for another solution. It has been torture on both he and us having to do this and also it has become more difficult as he has become stronger. Thankfully, the doctor here feels like a stoma revision is in order and has scheduled this for Feb 3. We have one additional doctor visit this coming Tuesday, Jan 20, then we plan to return home until a few days prior to the next surgery. The doctor feels like the revision to the stoma will help with his gas and general "plumbing" issues he has been having. He is not 100% sure what this revision will like, but it may involve moving the stoma slightly below where it is currently. He feels like the recovery time in the hospital will not be more than about 5-6 days for this surgery. Please pray that the surgery will be a success and that the recovery time will be no more than expected.
Oh, and we should mention that the doctor visit this week will be with Dr. G regarding the Urology side of things. Jacob is still using the SP tube and bag, and we feel like we will likely continue. However, he has had some "scant" bleeding (kind of like spotting) from his urethra, and so we don't know if this will be a concern or not. We will try to post some more details on this later this coming week.
We once again thank you for your prayers, despite our less that stellar efforts to keep everyone informed.
God is faithful and will accomplish more than we can every ask or imagine.
The Arringtons
Thursday, November 20, 2008
Progress, Prayer and Praise
I'm sure that if Jacob could really put together full sentences at this point in his young life, he would certainly say, "It sure is great to be home." I know that Courtney and I thank the Lord daily that we are all back home together again. And while Jacob isn't busting out long sentences, we have seen his vocabulary grow a little each day. He especially enjoys repeating what his older brother says, and James is seldom ever at a loss for words.
Jacob is making good progress all the way around, but there are still some challenges. He's down to only three medicines a day, one of which is only required once per day. His right side pin site has healed well and does not require us to "burn" it any longer. With the help of a Physical Therapist and lots of extra practice, Jacob is now able to sit up pretty well on his own. He has also begun walking again with the help of a mini-walker. He seems to have a very strong desire to walk, motivated in large part by his older brother James. His legs are still a little bit week and his balance is still off, but he improves a little with each day. I almost can't wait for the day I come home from work and he is able to walk or crawl over to the front door to greet me. That will be a great day.
His SP tube and urine bag have pretty much worked as they are supposed to. We had a slight scare one day last week when it appeared that the tube had become clogged. We are thankful that it was actually the bag that was having the problem, and once we removed it, everything began flowing again. We still have to "probe" his stoma on a daily basis, however, we are thankful that the Lord has not only allowed this process to go smoother (i.e. it goes in easier and is slightly less irritating), but has also led several nurses from our church (and a home health nurse who comes once a week) to help relieve us from having to do this all by ourselves. These ladies have all been a blessing to us and we thank God for giving them the heart, desire and skills to help out us out. We have also been blessed to have several families from our church bring us dinner a few times a week. I would be remiss, though, if I didn't thank everyone who has and continues to pray for us each and every day. The Lord hears our prayers and uses them to His glory.
There are several things, though, for which we ask that you pray.
1. Jacob still has trouble sleeping at night and we can't always tell what might be bothering him. We think that often times it may just be gas, but we know that it could be a number of things. Courtney and I are pretty tired, but the Lord continues to be merciful to us and grants us strength, even when we're not sure if we can get out of bed in the morning.
2. Courtney just had surgery on a "bad" tooth today that had been causing her pain for the past few months. The Lord was gracious in that the tooth did not bother her much in Baltimore, but shortly after we arrived back in Chattanooga, the pain kicked in again. We ask that you pray for complete healing and that her pain will subside soon.
3. Courtney's grandfather (Gramps) passed away this past Sunday after battling several health issues for quite some time. Services will be this weekend. He was a wonderful example of what it meant to be a servant to others and we will miss him greatly. We are thankful, though, that he is no longer suffering and is now with his Lord and King in heaven.
4. We must still continue to "burn" the wound site that is located slightly above Jacob's urethra. This "wound" was the place where the false entry point was created back when we were having difficulty cathing him. The wound has "granulized" (not sure if this is the exact word) and we basically have to use silver nitrate to actually burn this tissue. It is a quick, but very painful process (for both us and Jacob). Please pray that this area will heal soon and no longer require this process.
5. It is hard for us to believe sometimes, but our older son James will be heading off to Kindergarten next year, Lord willing. Please pray for wisdom for us as we seek to find the right school for him. We have applied for admission into one of the Magnet schools located in downtown Chattanooga, close to where I work. Admission is based on a lottery system and we may be placed on a waiting list, but would sure like to have him in a good school, located close to where I work (so I can take him in the morning).
6. Lastly, we ask that you pray that God will grant us the wisdom and clarity of thought needed to take care of not only Jacob's needs, but also James and ourselves.
May God bless each one of you richly and may He grant you the peace that passes all understanding.
Daddy BA
Jacob is making good progress all the way around, but there are still some challenges. He's down to only three medicines a day, one of which is only required once per day. His right side pin site has healed well and does not require us to "burn" it any longer. With the help of a Physical Therapist and lots of extra practice, Jacob is now able to sit up pretty well on his own. He has also begun walking again with the help of a mini-walker. He seems to have a very strong desire to walk, motivated in large part by his older brother James. His legs are still a little bit week and his balance is still off, but he improves a little with each day. I almost can't wait for the day I come home from work and he is able to walk or crawl over to the front door to greet me. That will be a great day.
His SP tube and urine bag have pretty much worked as they are supposed to. We had a slight scare one day last week when it appeared that the tube had become clogged. We are thankful that it was actually the bag that was having the problem, and once we removed it, everything began flowing again. We still have to "probe" his stoma on a daily basis, however, we are thankful that the Lord has not only allowed this process to go smoother (i.e. it goes in easier and is slightly less irritating), but has also led several nurses from our church (and a home health nurse who comes once a week) to help relieve us from having to do this all by ourselves. These ladies have all been a blessing to us and we thank God for giving them the heart, desire and skills to help out us out. We have also been blessed to have several families from our church bring us dinner a few times a week. I would be remiss, though, if I didn't thank everyone who has and continues to pray for us each and every day. The Lord hears our prayers and uses them to His glory.
There are several things, though, for which we ask that you pray.
1. Jacob still has trouble sleeping at night and we can't always tell what might be bothering him. We think that often times it may just be gas, but we know that it could be a number of things. Courtney and I are pretty tired, but the Lord continues to be merciful to us and grants us strength, even when we're not sure if we can get out of bed in the morning.
2. Courtney just had surgery on a "bad" tooth today that had been causing her pain for the past few months. The Lord was gracious in that the tooth did not bother her much in Baltimore, but shortly after we arrived back in Chattanooga, the pain kicked in again. We ask that you pray for complete healing and that her pain will subside soon.
3. Courtney's grandfather (Gramps) passed away this past Sunday after battling several health issues for quite some time. Services will be this weekend. He was a wonderful example of what it meant to be a servant to others and we will miss him greatly. We are thankful, though, that he is no longer suffering and is now with his Lord and King in heaven.
4. We must still continue to "burn" the wound site that is located slightly above Jacob's urethra. This "wound" was the place where the false entry point was created back when we were having difficulty cathing him. The wound has "granulized" (not sure if this is the exact word) and we basically have to use silver nitrate to actually burn this tissue. It is a quick, but very painful process (for both us and Jacob). Please pray that this area will heal soon and no longer require this process.
5. It is hard for us to believe sometimes, but our older son James will be heading off to Kindergarten next year, Lord willing. Please pray for wisdom for us as we seek to find the right school for him. We have applied for admission into one of the Magnet schools located in downtown Chattanooga, close to where I work. Admission is based on a lottery system and we may be placed on a waiting list, but would sure like to have him in a good school, located close to where I work (so I can take him in the morning).
6. Lastly, we ask that you pray that God will grant us the wisdom and clarity of thought needed to take care of not only Jacob's needs, but also James and ourselves.
May God bless each one of you richly and may He grant you the peace that passes all understanding.
Daddy BA
Friday, November 7, 2008
Home at Last
After part of three days and two nights on the road, we ALL arrived back safely in Chattanooga yesterday afternoon. The trip itself, even though long, went well and everyone stayed healthy. I know that Courtney and Jacob were especially happy to be back in their own home again after being away for 100+ days. Please rejoice with us and give thanks to the Lord for all he has done.
There are a few challenges that lie ahead for us and so we continue to ask for your prayers. The catheter situation did not work out for us or for Jacob, so the doctor agreed to let us keep the SP tube and "pee" bag in place for the time being. The plan is to return to Johns Hopkins in early January for another bladder scope. We may then attempt to catheterize his urethra again and go from there.
In the meantime, we do have a pretty rigid schedule we have to follow that involves everything from wound care to around the clock meds to stoma care. Here are a few specific items for which we seek your prayers:
1. The transition back to home life for everyone, especially Courtney and Jacob. This may sound trivial, but there will likely be an adjustment period for all of us.
2. Jacob's stoma - we have to probe it twice a day to prevent skin from growing over it. While this is a quick procedure, it is painful for him and rough on us. The doctors tell us that if the skin were to grow over the stoma, it will require a pretty major surgery.
3. Jacob's urination and SP tube - we had a slight concern last night that perhaps the tube was becoming clogged with particulate of some kind. With instruction from one of the doctors, we were able to flush it out and things seemed to start flowing again. Please pray that the SP tube will stay in and that "pee" will flow out as it should.
4. Jacob's wound care - he has two wound sites that have been slow to heal and require us to "burn" them with silver nitrate to help them heal.
5. Jacob's fluid intake - it is very important that Jacob drink plenty of fluids to stay hydrated and to keep things flowing through the SP tube
6. Jacob's medications - at present, he is taking about four different medicines, some every four hours, in addition to Tylenol and Ibuprofen. Some of these meds will continue for a long time and others will require that we gradually wean him from them to try and reduce the occurrence of withdrawal symptoms.
6. James - it is important that we not allow all of Jacob's needs to completely overshadow James. Also, please pray for us as we look for a school for James (he will likely enter kindergarten next fall).
7. Sleep for all of us - please pray that Jacob will sleep well at night. He continues to wake up from time-to-time and we cannot always tell what may be bothering him. It could be gas or could be something involving his bladder or some other type of pain. Please pray that we will have wisdom in knowing how to treat these episodes as they come up.
Again, though, we are so very thankful for your prayers throughout this journey in our lives. God had definitely used them to sustain us. Please give all praise to Him for the great things He has done.
In Christ Alone,
Daddy BA
There are a few challenges that lie ahead for us and so we continue to ask for your prayers. The catheter situation did not work out for us or for Jacob, so the doctor agreed to let us keep the SP tube and "pee" bag in place for the time being. The plan is to return to Johns Hopkins in early January for another bladder scope. We may then attempt to catheterize his urethra again and go from there.
In the meantime, we do have a pretty rigid schedule we have to follow that involves everything from wound care to around the clock meds to stoma care. Here are a few specific items for which we seek your prayers:
1. The transition back to home life for everyone, especially Courtney and Jacob. This may sound trivial, but there will likely be an adjustment period for all of us.
2. Jacob's stoma - we have to probe it twice a day to prevent skin from growing over it. While this is a quick procedure, it is painful for him and rough on us. The doctors tell us that if the skin were to grow over the stoma, it will require a pretty major surgery.
3. Jacob's urination and SP tube - we had a slight concern last night that perhaps the tube was becoming clogged with particulate of some kind. With instruction from one of the doctors, we were able to flush it out and things seemed to start flowing again. Please pray that the SP tube will stay in and that "pee" will flow out as it should.
4. Jacob's wound care - he has two wound sites that have been slow to heal and require us to "burn" them with silver nitrate to help them heal.
5. Jacob's fluid intake - it is very important that Jacob drink plenty of fluids to stay hydrated and to keep things flowing through the SP tube
6. Jacob's medications - at present, he is taking about four different medicines, some every four hours, in addition to Tylenol and Ibuprofen. Some of these meds will continue for a long time and others will require that we gradually wean him from them to try and reduce the occurrence of withdrawal symptoms.
6. James - it is important that we not allow all of Jacob's needs to completely overshadow James. Also, please pray for us as we look for a school for James (he will likely enter kindergarten next fall).
7. Sleep for all of us - please pray that Jacob will sleep well at night. He continues to wake up from time-to-time and we cannot always tell what may be bothering him. It could be gas or could be something involving his bladder or some other type of pain. Please pray that we will have wisdom in knowing how to treat these episodes as they come up.
Again, though, we are so very thankful for your prayers throughout this journey in our lives. God had definitely used them to sustain us. Please give all praise to Him for the great things He has done.
In Christ Alone,
Daddy BA
Saturday, November 1, 2008
Prayer Request
Last night, we again had difficulty "cathing" Jacob. This morning, we took him to the ER to see the Urologist on call. He was able to get it to work, but it was not nearly as smooth as it was a couple of days ago. We even tried using a smaller catheter, which helped a little, but it was still difficult and very uncomfortable for Jacob. So, the doctor put a catheter in to stay until Monday afternoon, when we will see Dr. Gearhart at his clinic.
We don't anticipate having to extend our stay at this point (we hope to leave Tuesday), but we do ask that you pray that the doctors will find a good solution to these challenges we've been having with the catheter. In addition, we also have to "probe" his stoma once or twice a day to help keep skin from growing around it. We discovered this yesterday when we had a clinical visit with the General Pediatric Surgery team.
Praise the Lord, for His love and faithfulness endure forever.
Daddy BA
We don't anticipate having to extend our stay at this point (we hope to leave Tuesday), but we do ask that you pray that the doctors will find a good solution to these challenges we've been having with the catheter. In addition, we also have to "probe" his stoma once or twice a day to help keep skin from growing around it. We discovered this yesterday when we had a clinical visit with the General Pediatric Surgery team.
Praise the Lord, for His love and faithfulness endure forever.
Daddy BA
Thursday, October 30, 2008
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
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
Wednesday, October 29, 2008
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
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
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