From a medical standpoint, the last couple of days have been relatively uneventful (we are certainly thankful for that). Jacob has been having some occasional sharp pains in his abdomen, especially last night. There really could be a number of things causing it - from a possible urinary tract infection to his positioning (we were able to take him out for a short ride in the car yesterday) to something simple like constipation or gas. With James and Daddy preparing to head back to Chattanooga this weekend (weather permitting), please pray that we might be able find out what is causing this before we leave.
James got to spend last night with his two cousins, Ronnie and Joshua. This turned out to be a real blessing, especially in light of the difficult night that Jacob had sleeping.
Daddy and James had originally planned to leave for Chattanooga tomorrow. Then, we had heard about potential weather concerns and were going to leave today. Now, with potential weather issues in TN and VA beginning today, we will probably wait until Sunday. Please pray that when we leave, we will have safety in travel.
"His truth is marching on"
Daddy and Mommy
Friday, January 29, 2010
Tuesday, January 26, 2010
Today's Update - James' appointment day
Jacob once again had a pretty good day. We did have a little bit of a scare this evening when Daddy accidentally tugged on his SP tube (while trying to move him from his wagon to the bed). Thankfully, it did not come out, but it did cause Jacob some pain and discomfort. Otherwise, we enjoyed a visit from Aunt RoRo, Ronnie and Joshua and also some therapy dogs. The Children's House will bring in a few dogs every Tuesday for the children and families to enjoy. This week, they brought in two - Rusty and Abbey. Abbey is a very furry and lovable Golden Retriever. Rusty is, well, about the size of a small horse. He is a Great Dane and was quite a hit with all of the little ones as he is actually taller than many of them. Jacob, James, Ronnie and Joshua (and the rest of us) all had a great time with these dogs.
Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.
It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.
Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.
"Let my hands perform His bidding, Let my lips speak forth His praise"
Mommy and Daddy
Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.
It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.
Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.
"Let my hands perform His bidding, Let my lips speak forth His praise"
Mommy and Daddy
Monday, January 25, 2010
Update for today and results from Clinic Visit
Jacob has had a good day today. He has been playing (in his wagon), talking and just being himself. James has also had a good time as well. He got to play with his cousin Ronnie for awhile last night and has met some new friends here at the Children's House. They are ages 8 and 10 and are from Sarasota, FL.
We had a clinic visit today with Dr. Gearhart (Urology). He is pleased with Jacob's progress and advised that we can now put Jacob in a car seat for short drives. This means we will likely try and visit Aunt RoRo, Uncle Ron, Ronnie and Joshua sometime this week. We are going to bring up the car seat and let Jacob "try" it out to make sure that he will comfortable.
Dr. Gearhart advised that Jacob will need to stay off his feet and continue to have his legs lightly wrapped for about two more weeks. His next appointment is scheduled for February 8th at 3:30 pm. At that time, the plan is to remove the stint from his urethra and cap off the SP tube (catheter). We will then monitor the urine output for about three days. This will involve pulling the plug from the SP tube every few hours and checking the output. Since the ultimate goal is to have the urine come out from his urethra (down below), there should not be much output from the SP tube. If everything works as planned for these three days, Dr. G will remove the SP tube entirely. Jacob should then be able to head home shortly after that. Dr. G then plans to do a bladder scope about three months after that to make sure that everything is still flowing properly through his urethra.
The doctors are still unsure what caused Jacob to have the extremely high fever. We are thankful that he has been doing much better over the past few days.
"Let every breath, all that I am, never cease to praise the Lord"
Mommy and Daddy
We had a clinic visit today with Dr. Gearhart (Urology). He is pleased with Jacob's progress and advised that we can now put Jacob in a car seat for short drives. This means we will likely try and visit Aunt RoRo, Uncle Ron, Ronnie and Joshua sometime this week. We are going to bring up the car seat and let Jacob "try" it out to make sure that he will comfortable.
Dr. Gearhart advised that Jacob will need to stay off his feet and continue to have his legs lightly wrapped for about two more weeks. His next appointment is scheduled for February 8th at 3:30 pm. At that time, the plan is to remove the stint from his urethra and cap off the SP tube (catheter). We will then monitor the urine output for about three days. This will involve pulling the plug from the SP tube every few hours and checking the output. Since the ultimate goal is to have the urine come out from his urethra (down below), there should not be much output from the SP tube. If everything works as planned for these three days, Dr. G will remove the SP tube entirely. Jacob should then be able to head home shortly after that. Dr. G then plans to do a bladder scope about three months after that to make sure that everything is still flowing properly through his urethra.
The doctors are still unsure what caused Jacob to have the extremely high fever. We are thankful that he has been doing much better over the past few days.
"Let every breath, all that I am, never cease to praise the Lord"
Mommy and Daddy
Sunday, January 24, 2010
They're Here
Daddy and James arrived last night around 9:00p.m. It was so great to see them and to see James love on Jacob. There was a bunch of hugs and kisses. James didn't want to let go of Jacob he wanted to climb up in the wagon with him and not get out. Speaking of wagon, Jacob has to be wrapped for 4 weeks and no higher than 45 degree angle so this is the only real means of transportation for him.
Yesterday was very busy for Jacob and mommy. We were discharged early in the morning, but didn't leave the hospital until around 11:00 am.
James is having a great time playing at The Children's House with some children that are about his age. Jacob will ride in his wagon for awhile, then go back to his bed to watch his "God Made ..." videos. He will literally start up three of four videos at once (between the TV,computer, Portable DVD player (thanks Grammy and Papa A) and Daddy's phone). He seems to be handling the wrap fairly well, without too many complaints. The Lord has been so gracious to Jacob because he really is (generally) pretty cheerful most of the time, which is amazing considering all that has taken place recently.
Jacob has a follow-up visit with Dr. Gearhart tomorrow afternoon at 3 pm. We are praying that they might allow him to ride in a car seat (so we can all get out a bit).
James has his appointment with the eye doctor on Tuesday at 2:30. Please pray that we might learn more about what has been causing the sensitivity in his eyes.
Daddy will be attempting to work remotely this week - please pray that he will be able to get some things done and that the technology will work as "advertised."
Gran and Papa will be traveling down here on Wednesday of this week and plan to stay until Saturday. Please pray for safety in travel for them as they drive from Knoxville. James and Daddy will probably stay until Saturday as well.
With James missing school this week, it is important that we practice his spelling words and work on his "100th day" project. Please pray that we will be able to accomplish these things this week and balance it with visits to the doctor, time spent with family and daddy's work needs.
"Lord of lords, How Majestic is Your Name in all the earth."
Mommy and Daddy
Yesterday was very busy for Jacob and mommy. We were discharged early in the morning, but didn't leave the hospital until around 11:00 am.
James is having a great time playing at The Children's House with some children that are about his age. Jacob will ride in his wagon for awhile, then go back to his bed to watch his "God Made ..." videos. He will literally start up three of four videos at once (between the TV,computer, Portable DVD player (thanks Grammy and Papa A) and Daddy's phone). He seems to be handling the wrap fairly well, without too many complaints. The Lord has been so gracious to Jacob because he really is (generally) pretty cheerful most of the time, which is amazing considering all that has taken place recently.
Jacob has a follow-up visit with Dr. Gearhart tomorrow afternoon at 3 pm. We are praying that they might allow him to ride in a car seat (so we can all get out a bit).
James has his appointment with the eye doctor on Tuesday at 2:30. Please pray that we might learn more about what has been causing the sensitivity in his eyes.
Daddy will be attempting to work remotely this week - please pray that he will be able to get some things done and that the technology will work as "advertised."
Gran and Papa will be traveling down here on Wednesday of this week and plan to stay until Saturday. Please pray for safety in travel for them as they drive from Knoxville. James and Daddy will probably stay until Saturday as well.
With James missing school this week, it is important that we practice his spelling words and work on his "100th day" project. Please pray that we will be able to accomplish these things this week and balance it with visits to the doctor, time spent with family and daddy's work needs.
"Lord of lords, How Majestic is Your Name in all the earth."
Mommy and Daddy
Friday, January 22, 2010
Morning update
Jacob is still in the hospital, but seems to be doing much better. He has started eating a little and no longer requires the Tylenol for the fever. Thank you so much for your prayers. Mommy was able to get a little bit of sleep last night, but could still use some more.
We still do not know exactly what caused Jacob to have the high fevers. They are still running tests. Jacob seems to be taking most of this in stride and we are thankful that the Lord has granted him this strength. He continues to be quite the talker and socializer, for the most part.
Daddy and James are planning to drive up to Baltimore tomorrow morning and plan to be there for the week. Please pray for safety in travel for them, especially with the possibility of some leftover winter weather issues. Also, Daddy will be driving "his" car (due to it getting much better gas mileage), which has generally been very reliable, but has nearly 300,000 miles on it. Please pray that we will not experience any mechanical or other car related issues.
"King of Kings, Forever and ever"
Mommy and Daddy
We still do not know exactly what caused Jacob to have the high fevers. They are still running tests. Jacob seems to be taking most of this in stride and we are thankful that the Lord has granted him this strength. He continues to be quite the talker and socializer, for the most part.
Daddy and James are planning to drive up to Baltimore tomorrow morning and plan to be there for the week. Please pray for safety in travel for them, especially with the possibility of some leftover winter weather issues. Also, Daddy will be driving "his" car (due to it getting much better gas mileage), which has generally been very reliable, but has nearly 300,000 miles on it. Please pray that we will not experience any mechanical or other car related issues.
"King of Kings, Forever and ever"
Mommy and Daddy
Thursday, January 21, 2010
Morning Update
After quite an ordeal with one of the ER resident doctors, Jacob was finally admitted early this morning (it is a very long story). He is taking ibuprofen to help keep the fever down and continues to basically be himself with some discomfort every so often.
We are waiting for the results of the tests from last night and will update everyone once we have these details.
Please pray that we will be able to find out what has been causing these fevers and treat accordingly. Please pray for Mommy as she got very little sleep last night due to the ER ordeal. We are thankful that God helped Mommy remain patient and calm, even as she and Jacob faced the aforementioned frustrations in the Emergency Room. There were a number of other individuals (nurses and doctors) from the three speciality areas that were a tremendous help, despite the challenges we had with the one ER doctor.
On the flip side, though, there are several nurses who have and continue to go above and beyond. Even when they are not at work or not immediately responsible for Jacob, they are always willing to help (texting, phone calls, you name it). We are so thankful to Kiki, Allie and Ashley for all that they have and continue to do for Jacob.
"How Great Thou art, how great Thou art"
Mommy and Daddy
We are waiting for the results of the tests from last night and will update everyone once we have these details.
Please pray that we will be able to find out what has been causing these fevers and treat accordingly. Please pray for Mommy as she got very little sleep last night due to the ER ordeal. We are thankful that God helped Mommy remain patient and calm, even as she and Jacob faced the aforementioned frustrations in the Emergency Room. There were a number of other individuals (nurses and doctors) from the three speciality areas that were a tremendous help, despite the challenges we had with the one ER doctor.
On the flip side, though, there are several nurses who have and continue to go above and beyond. Even when they are not at work or not immediately responsible for Jacob, they are always willing to help (texting, phone calls, you name it). We are so thankful to Kiki, Allie and Ashley for all that they have and continue to do for Jacob.
"How Great Thou art, how great Thou art"
Mommy and Daddy
Wednesday, January 20, 2010
Another Praise
Jacob's fever is now down below 100. Praise the Lord.
He will still (most likely) be admitted tonight while they await the results of the three tests (x-ray, blood and urine).
We will plan to update you, probably in the morning, once we know more.
Whether it be trials, temptations, or troubles, take it to the Lord in prayer.
Mommy and Daddy
He will still (most likely) be admitted tonight while they await the results of the three tests (x-ray, blood and urine).
We will plan to update you, probably in the morning, once we know more.
Whether it be trials, temptations, or troubles, take it to the Lord in prayer.
Mommy and Daddy
Praise
The IV is "in". The doctors and nurses were able to get the IV into his hand. They are now awaiting the results from the blood work, x-ray and urine.
Your continued prayers are definitely appreciated - may God use them to His glory and to accomplish His perfect will.
Daddy and Mommy
Your continued prayers are definitely appreciated - may God use them to His glory and to accomplish His perfect will.
Daddy and Mommy
Additional request
It appears that Jacob may be admitted tonight to the hospital. The doctors and nurses are having trouble getting the IV in (Jacob has historically been a hard "stick"). Please pray that they will be able to get this IV in and started soon.
Thank you.
Mommy and Daddy
Thank you.
Mommy and Daddy
Fever update
Since Jacob's temp continued to climb (near 106), Mommy took him to the ER. So far, everything has checked out fine (ear, eyes, etc). This fever, however, is similar to the one had the other day in that he is not acting sick. He is talking, playing a little and watching his videos. He even told us that "I am not sick." The doctor at the ER thinks that Jacob may have a urinary tract infection and they are going to do a "belly" x-ray.
Thank you again for praying.
Daddy and Mommy
Thank you again for praying.
Daddy and Mommy
Urgent Prayer Request
Jacob's fever has again spiked up, this time to over 103. We are contacting the Urology team and may have to take him to the ER.
Thank you for praying. We will update you again once we know the next steps.
He is The great physician.
Mommy and Daddy
Thank you for praying. We will update you again once we know the next steps.
He is The great physician.
Mommy and Daddy
Back up...
Jacob's fever has once again climbed back up - to 100.4. Please continue to hold him up in prayer and ask that it might come down and that we might be able to determine what is causing it.
He is faithful.
Mommy and Daddy
He is faithful.
Mommy and Daddy
Coming down...
Praise the Lord that Jacob's fever is down this morning. It was a long night for Mommy CA as she regularly checked on Jacob during the night. Please pray that she might be able to get a little rest this morning. Thank you for your prayers.
"God of wonders, beyond this galaxy - you are Holy"
Mommy and Daddy
"God of wonders, beyond this galaxy - you are Holy"
Mommy and Daddy
Tuesday, January 19, 2010
A little more info and additional prayer request
Jacob's fever has come down a little, for which we are thankful. We spoke with the Urology Department and they have advised that they can actually come see Jacob early in the AM if the fever persists (they make rounds beginning at around 5 am). This will certainly be much preferred, if needed, over having to go the ER.
Also, please pray that Jacob's stitches will not come loose or become infected. Along with the fever this evening, we've noticed some redness near the top of the incision. Jacob's legs have to remain wrapped, but sometimes he has other plans and tries to wiggle out of it.
Mommy and Daddy
Also, please pray that Jacob's stitches will not come loose or become infected. Along with the fever this evening, we've noticed some redness near the top of the incision. Jacob's legs have to remain wrapped, but sometimes he has other plans and tries to wiggle out of it.
Mommy and Daddy
Prayer request and one praise
Please pray for Jacob as he has once again spiked a fever (a little over 101). We have given him Tylenol to try and bring it down. The doctors and nurses have advised that if it goes above 102 that we should take him to the ER. What's really crazy about this particular fever is that Jacob is not acting sick. Part of that may have to do with the paid meds he takes. Whatever the case, we are thankful to serve an all knowing God who works through all of these seemingly crazy and challenging situations to accomplish His good purposes.
One note of praise - Jacob's "movements" have begun in earnest now (he is passing stool). Thank you for your prayers.
God of Wonder, You are Holy.
Mommy and Daddy
One note of praise - Jacob's "movements" have begun in earnest now (he is passing stool). Thank you for your prayers.
God of Wonder, You are Holy.
Mommy and Daddy
Checking out - update and prayer request
Jacob has just now been released from the hospital (Praise the Lord). He and Mommy CA will be heading back to the Children's House here shortly (they've just picked up Jacob's prescriptions).
The next scheduled follow-up will be with Urology this coming Monday (Dr. Gearhart).
Jacob does, however, have a low grade fever and appears to be a little bit flushed. We are, of course, concerned about the possibility of infections and/or illness. Please pray that the Lord will keep he and Mommy healthy and that Jacob will not develop any infections.
Please continue to pray that the Lord will grant us wisdom in making the various arrangments (travel, school, work, etc). At this point, Daddy BA and James may travel to Baltimore this weekend so James can visit with his brother and Mommy (as well as cousins Ronnie and Joshua) and also go to his dr appointment on Tuesday. These plans are still tentative at this point, although Daddy does hope to go up one way or the other.
One interesting thing that we forgot to mention yesterday - Dr. Sponseller, Jacob's orthopedic surgeon, stopped by to check him out. In the process, he actually got Jacob to give him a "high-five." This was pretty big deal for Jacob since he (for obvious reasons) tends to shy away from almost anyone wearing a lab coat or scrubbs.
He leads us by His own Hand.
Mommy and Daddy BA
The next scheduled follow-up will be with Urology this coming Monday (Dr. Gearhart).
Jacob does, however, have a low grade fever and appears to be a little bit flushed. We are, of course, concerned about the possibility of infections and/or illness. Please pray that the Lord will keep he and Mommy healthy and that Jacob will not develop any infections.
Please continue to pray that the Lord will grant us wisdom in making the various arrangments (travel, school, work, etc). At this point, Daddy BA and James may travel to Baltimore this weekend so James can visit with his brother and Mommy (as well as cousins Ronnie and Joshua) and also go to his dr appointment on Tuesday. These plans are still tentative at this point, although Daddy does hope to go up one way or the other.
One interesting thing that we forgot to mention yesterday - Dr. Sponseller, Jacob's orthopedic surgeon, stopped by to check him out. In the process, he actually got Jacob to give him a "high-five." This was pretty big deal for Jacob since he (for obvious reasons) tends to shy away from almost anyone wearing a lab coat or scrubbs.
He leads us by His own Hand.
Mommy and Daddy BA
Monday, January 18, 2010
Update
Jacob had another good night of sleep. He continues to improve a little each day. Dr. Lau (Gen Surgery) came by today and said that we should not worry much about the "movement" concern because it should begin to clear up once he is taken off of some of the meds. They are still planning to release Jacob from the hospital tomorrow, once Dr. G (Urology) has had a chance to come by and evaluate him. Here are a few specific prayer requests:
1. Please pray that Jacob will continue to "pee-pee" down below and that the new pelvic plate will not erode into his urethra. Mommy noticed a little earlier that he was not peeing down below, but here within the past few minutes, she noticed that it started dripping again.
2. Jacob had the tape on his SP tube removed and he has had some pain and discomfort from this. He will have to keep the SP tube and a urine bag in place for an undetermined amount of time (we hope to get some definitive info tomorrow).
3. Jacob still has the rash on his back, but it has improved a little.
4. Even with the encouraging words from Dr. Lau, we are still a little concerned about Jacob being able to pass stool.
5. Please pray that the hospital discharge process will go smoothly for Jacob and Mommy.
6. We definitely need prayer for wisdom in the coming days and weeks. With his release tomorrow and the likelihood that he will need to be back at the hospital within a few weeks for the "finishing touches", we may look to stay in the area rather than have all of us come back to Chattanooga. It appears that the Children's House will likely be able to house us for awhile, which is great. Much of this will depend on what we find out from Urology tomorrow. With James being in school, we definitely want to try and limit the number of days that he misses. This, along with Daddy BA's work, requires a lot of careful planning and decisions to ensure a good balance.
7. James has an appointment next Tuesday with an eye specialist at Johns Hopkins. Please pray that the visit will be informative to us as we seek to find out more about the eye sensitivity issues and how it may be related to the seizures he had last year.
8. Please pray for safety in travel this week as Daddy BA, James, Gran and Papa will all be traveling to Baltimore this week (although we are not yet sure if we will all go up at the same time).
9. Please continue to pray that the Lord will give strength to Mommy as she cares for Jacob (especially while Daddy is back in Chattanooga). Please pray for their safety and health as well.
We are thankful to serve a God who controls all of these circumstances and our prayer, ultimately, is that He will be glorified and that He will use these challenging times to show Himself to those around us.
To God be the Glory, great things He has done.
Daddy and Mommy
1. Please pray that Jacob will continue to "pee-pee" down below and that the new pelvic plate will not erode into his urethra. Mommy noticed a little earlier that he was not peeing down below, but here within the past few minutes, she noticed that it started dripping again.
2. Jacob had the tape on his SP tube removed and he has had some pain and discomfort from this. He will have to keep the SP tube and a urine bag in place for an undetermined amount of time (we hope to get some definitive info tomorrow).
3. Jacob still has the rash on his back, but it has improved a little.
4. Even with the encouraging words from Dr. Lau, we are still a little concerned about Jacob being able to pass stool.
5. Please pray that the hospital discharge process will go smoothly for Jacob and Mommy.
6. We definitely need prayer for wisdom in the coming days and weeks. With his release tomorrow and the likelihood that he will need to be back at the hospital within a few weeks for the "finishing touches", we may look to stay in the area rather than have all of us come back to Chattanooga. It appears that the Children's House will likely be able to house us for awhile, which is great. Much of this will depend on what we find out from Urology tomorrow. With James being in school, we definitely want to try and limit the number of days that he misses. This, along with Daddy BA's work, requires a lot of careful planning and decisions to ensure a good balance.
7. James has an appointment next Tuesday with an eye specialist at Johns Hopkins. Please pray that the visit will be informative to us as we seek to find out more about the eye sensitivity issues and how it may be related to the seizures he had last year.
8. Please pray for safety in travel this week as Daddy BA, James, Gran and Papa will all be traveling to Baltimore this week (although we are not yet sure if we will all go up at the same time).
9. Please continue to pray that the Lord will give strength to Mommy as she cares for Jacob (especially while Daddy is back in Chattanooga). Please pray for their safety and health as well.
We are thankful to serve a God who controls all of these circumstances and our prayer, ultimately, is that He will be glorified and that He will use these challenging times to show Himself to those around us.
To God be the Glory, great things He has done.
Daddy and Mommy
Sunday, January 17, 2010
Prayer Request
Jacob is in search of a "movement." Ok, we'll explain. Ever since yesterday, he has been eating very well, which is definitely a praise. However, he has not had any stool and with everything he has been eating, he is starting to get a little uncomfortable.
The nurses are giving him some Miralax and softeners to try and get things moving along. They don't believe this is a huge problem at the moment, rather, they think it is a result of all of the meds he has been taking and just a side effect of the surgery.
Please pray that this issue will resolve itself quickly and not cause any additional problems.
He is Lord over all.
Mommy and Daddy
The nurses are giving him some Miralax and softeners to try and get things moving along. They don't believe this is a huge problem at the moment, rather, they think it is a result of all of the meds he has been taking and just a side effect of the surgery.
Please pray that this issue will resolve itself quickly and not cause any additional problems.
He is Lord over all.
Mommy and Daddy
Fun photo's with Chattanooga's snow
Chattanooga's first snow
Jacob say cheese
Mommy made the boy's their first snowman
Trying to catch a snowflake
Giving mommy a big grin
A "quick" release...(maybe)
The doctors have indicated that Jacob may be released from the hospital as early as this Tuesday (the 19th). His lower legs will remain wrapped and he will keep both the stint and SP tube in for at least another three weeks or so. At that time, he will be evaluated to see if his bladder is still draining through his urethra. If it is, they may remove the stint and "cap off" the SP tube for another few weeks, with the hope that he can eventually have the SP tube removed entirely (this is definitely one of our biggest prayers, too).
He continues to eat well - he even took down some mac and cheese today and a little bit of a hospital hamburger (you know, the good kind). Praise the Lord for these improvements.
The rash on his back is still an area of concern, but we pray this will be able to clear up over the next few days (especially once he is able to leave the hospital).
Daddy BA is back in Chattanooga with James and glad to be home with him, but he definitely misses Mommy and Jacob.
Amazing Grace, How sweet the sound.
Mommy and Daddy
He continues to eat well - he even took down some mac and cheese today and a little bit of a hospital hamburger (you know, the good kind). Praise the Lord for these improvements.
The rash on his back is still an area of concern, but we pray this will be able to clear up over the next few days (especially once he is able to leave the hospital).
Daddy BA is back in Chattanooga with James and glad to be home with him, but he definitely misses Mommy and Jacob.
Amazing Grace, How sweet the sound.
Mommy and Daddy
3 Praises
Thank you Jesus. Daddy just pulled in the drive, Jacob is eating and mommy just woke up.
After Jacob fell asleep I went to the Children's House for a shower and to rest. But couldn't rest so I came back and Jacob was still asleep. My brother Ron called and said he would come sit with Jacob at 6:00. This was a perfect time because at the Children's House a church was bringing dinner. A very nice lady who's name was Stacey walked with me back to the hospital to help carry my food and drink. This was a perfect time for her to meet Jacob and ask if she would pray for him. I gave her the blog address to read and to share with other's. God is great to bring so many people in our lives to be able to share his story.
It is so good to see him eating now. Before his nap after the tube came out he had some juice, broth and a purple Popsicle. As soon as they got the ng tube out he asked for goldfish and cheese-its, so we gave him 2 goldfish to start slow. Now he is up to 5 small cups. Wow!!
As for me, I really passed out and got 2 1/2 hours of great hard sleep. I didn't hear our neighbor move out, them cleaning the room, moving a hospital bed in or Elisha (our wonderful nurse tonight) work on Jacob. I feel great! Thank you again for praying for me to be able to sleep in the hospital.
After Jacob fell asleep I went to the Children's House for a shower and to rest. But couldn't rest so I came back and Jacob was still asleep. My brother Ron called and said he would come sit with Jacob at 6:00. This was a perfect time because at the Children's House a church was bringing dinner. A very nice lady who's name was Stacey walked with me back to the hospital to help carry my food and drink. This was a perfect time for her to meet Jacob and ask if she would pray for him. I gave her the blog address to read and to share with other's. God is great to bring so many people in our lives to be able to share his story.
It is so good to see him eating now. Before his nap after the tube came out he had some juice, broth and a purple Popsicle. As soon as they got the ng tube out he asked for goldfish and cheese-its, so we gave him 2 goldfish to start slow. Now he is up to 5 small cups. Wow!!
As for me, I really passed out and got 2 1/2 hours of great hard sleep. I didn't hear our neighbor move out, them cleaning the room, moving a hospital bed in or Elisha (our wonderful nurse tonight) work on Jacob. I feel great! Thank you again for praying for me to be able to sleep in the hospital.
A little note to Daddy and James
Jacob and I love and miss both of you very much.
We hope you two have fun tomorrow
and we will be together again real soon.
Much love
Saturday, January 16, 2010
Almost time for rest
Jacob is just about to fall asleep for his afternoon nap and maybe me too. Daddy got on the road around 11:30 and its 2:00p.m. now so he will be getting in real late. James might be staying with Papa and Gran over at Nana's house. Thank you for praying for Bryan as he drives home.
Rejoice always
Bryan and Courtney
Rejoice always
Bryan and Courtney
Rise and Shine
Jacob's stoma woke up and we saw poopoo. That was so good to see, now he can start eating and they will take his ng tube out sometime this morning. His potassium was a little low this morning, but much higher than yesterday so they will give him some thru his ng tube right before they take it out. Our nurse Julie H will take the tube out in 30 min.
Daddy is saying goodbye to us and getting lots of love and kisses before he leaves for TN. It's hard to let go of him, but I know James will be happy to see him back home.
Daddy talking to Jacob before he gets on the road
Daddy telling him everything will be ok and he will be back real soon
Jacob looking up saying "back to the Children's House". I wish it was that close.
Getting a goodbye kiss
We just said our prayer and giving our kisses.
Notice Jacob's arms.
Friday, January 15, 2010
Big brother saying goodbye
James saying goodbye to Jacob before he goes with Gran
What a sight
Lots of hugs
and kisses before we leave
Evening Update
Jacob has had a pretty good day, today, with one exception. His stoma is slowly coming around (waking up). His fever has pretty well subsided. The rash on his back, however, appears to be getting worse. They are going to see if he needs some sort of anti-fungal med or powder to help treat it. Jacob hasn't complained about it a lot, but we can tell that it bothers him and appears to make him itchy. Thanks for your prayers regarding these concerns - please continue to pray that the healing and mending process will go smoothly and quickly for Jacob and that this rash will clear up soon.
Jacob still has the NG tube in his stomach (this went in before surgery as part of the bowel prep and currently allows them to "deposit" certain oral meds directly into his stomach) and cannot (yet) eat any solid foods or drink anything beyond what the IV fluids provide. The doctors were prepared to take the NG tube out, but decided to wait a little longer because his stomach was just a little bit distended (swollen) and he has not passed any "poo", yet.
We do not know how long Jacob will have to stay in the hospital, but he will likely have to remain in the Baltimore area for at least four weeks (this was based on the estimate from the Urologist). Their plan is to remove the stint in his urethra at that time and then monitor him closely for another couple of weeks. If he still drains urine well from down below, they will then close off (and later remove) the SP tube (catheter) that he has had since the surgery in 2008.
Daddy BA will be leaving for Chattanooga tomorrow morning - please pray for safety in travel. Also, please pray for Mommy as she will be with Jacob throughout the next week. Anyone who has ever stayed with a friend or family member who is hospitalized for an extended period of time will know how it can wear on you in more ways than one (especially when it comes to getting good sleep). Please pray that God will pour out his mercy on Mommy this week and give her that strength that only He can provide. Please pray that both will be able to get some good rest each night.
We hope everyone is enjoying the pictures and we hope to get more posted over the next week or so.
May the glory of the Lord shine down on us.
Mommy and Daddy
Jacob still has the NG tube in his stomach (this went in before surgery as part of the bowel prep and currently allows them to "deposit" certain oral meds directly into his stomach) and cannot (yet) eat any solid foods or drink anything beyond what the IV fluids provide. The doctors were prepared to take the NG tube out, but decided to wait a little longer because his stomach was just a little bit distended (swollen) and he has not passed any "poo", yet.
We do not know how long Jacob will have to stay in the hospital, but he will likely have to remain in the Baltimore area for at least four weeks (this was based on the estimate from the Urologist). Their plan is to remove the stint in his urethra at that time and then monitor him closely for another couple of weeks. If he still drains urine well from down below, they will then close off (and later remove) the SP tube (catheter) that he has had since the surgery in 2008.
Daddy BA will be leaving for Chattanooga tomorrow morning - please pray for safety in travel. Also, please pray for Mommy as she will be with Jacob throughout the next week. Anyone who has ever stayed with a friend or family member who is hospitalized for an extended period of time will know how it can wear on you in more ways than one (especially when it comes to getting good sleep). Please pray that God will pour out his mercy on Mommy this week and give her that strength that only He can provide. Please pray that both will be able to get some good rest each night.
We hope everyone is enjoying the pictures and we hope to get more posted over the next week or so.
May the glory of the Lord shine down on us.
Mommy and Daddy
We miss James
James Daddy, mommy and Jacob love you sooooo much.Daddy will be home soon. I miss you baby James.
Love mommy
What can I get done while Jacob is sleeping
Yes its me, Courtney on the blog posting pictures. I am so glad I have a little time to do this while Jacob is sleeping.
I want to say thank you to each and everyone of you for the many, many prayers. So amazing to see how God is answering them. Love to all
I want to say thank you to each and everyone of you for the many, many prayers. So amazing to see how God is answering them. Love to all
Uncle Ron and Aunt Roro get Jacob to smile
After having fun with Allie when we first got there, Jacob had to get the NG tube. He did not like this at all. He said his nose hurts.
Jacob started feeling better when he saw Uncle Ron and Aunt Roro.
We love you Uncle Ron and Aunt Roro, cousins Ronnie and Joshua
One additional update this morning
We forgot to mention another praise - so far, all of the tests for things like the flue and RSV have come back negative. He will probably have to remain the the "droplet precaution" room for about a week, provided that all tests continue to come back negative. He does seem to be better today with regard to the chest congestion, too, for which we are definitely thankful.
May His name be lifted up.
Mommy and Daddy
May His name be lifted up.
Mommy and Daddy
Morning Update
Jacob had a very good night of sleep without too many issues. This morning, however, he does have a fever of around 100 that they are treating along with a bed rash on his back. He certainly seems to be feeling better as a whole and the talkative little boy we know and love seems to be "coming back." As an example, Jacob first asked me this morning where his "poo-poo" bag was at (His stoma hasn't totally "awakened" from the surgery so they have not a put a colostomy bag back on, yet). I told him that he didn't need one, quite yet, but will probably need one soon. When the nurse came in a little later, he then proceeded to ask her the same question. This is definitely a good thing because he really didn't pay much attention to these things yesterday. He also asks every person that comes in, "What are you going to do?"
Members of each of the medical teams came by to see Jacob this morning - Urology, Ortho and Gen Surgery. All were pleased with his progress. Urology estimates that that he will need to have his legs wrapped for about a week. We are waiting to find out when he might be able to sit up a little.
Praise the Lord for his progress and please pray for the areas of concern noted above.
Most Blessed, Most Glorious, King of all kings - may all of the glory be His alone.
Mommy and Daddy
Members of each of the medical teams came by to see Jacob this morning - Urology, Ortho and Gen Surgery. All were pleased with his progress. Urology estimates that that he will need to have his legs wrapped for about a week. We are waiting to find out when he might be able to sit up a little.
Praise the Lord for his progress and please pray for the areas of concern noted above.
Most Blessed, Most Glorious, King of all kings - may all of the glory be His alone.
Mommy and Daddy
Thursday, January 14, 2010
Prayer request and quick update
Jacob is running a fever (just under 101) and has a fair amount of thick mucus in his chest. As a precaution, we have been moved to a different room (kind of like isolation, but not quite that serious.) Please pray that he will be able to cough the "stuff" out and that his fever will come down. The doctors are running some tests to see if he has picked up any sort of virus, etc.
God is Good.
Mommy and Daddy
God is Good.
Mommy and Daddy
Afternoon update and word of thanks
Jacob is now in a room and resting peacefully at the moment. He has had a few pain related episodes this afternoon, but nothing that seems like a major concern. Part of it may have to do with some lingering effects from the anesthesia yesterday. We do want to report another praise that we forgot to include this morning. The PIC line that did not want to go in correctly yesterday did fall right into place last night and is working well today. The PIC line is sort of like an IV, but designed to stay in longer and prevent the need for multiple IV replacements. Please continue to pray for Jacob, especially in regard to the pain management process, but we also ask that you remember the praises as well.
We were thankful to have a visit from Pastor Rick Cash with Valley Baptist Church. He came and offered words of encouragement and also prayed with us. Valley Baptist, along with many other congregations, has prayed faithfully for our family over the past three years. In addition, they have also been our "church away from home" whenever we are in the area (this is Uncle Ron and Aunt RoRo's church). They graciously allowed James to attend Pre-K there in 2008 while Jacob was here at Hopkins for those surgeries. This past summer, when we were attending Sunday morning worship there, Jacob walked right up to the front to participate in the Children's Sermon. This was a wonderful moment for all of us as it was truly a visible demonstration of God's grace and mercy toward Jacob(and all of us).
We have been so blessed and also humbled by the wonderful outpouring of kindness and the prayers offered up from all of these wonderful brothers and sisters in the Lord - from our home church, Covenant Presbyterian in Chattanooga, to Valley Baptist here in Baltimore (Cockeysville) and many others in between.
We are His people and the sheep of His pasture.
Daddy and Mommy
We were thankful to have a visit from Pastor Rick Cash with Valley Baptist Church. He came and offered words of encouragement and also prayed with us. Valley Baptist, along with many other congregations, has prayed faithfully for our family over the past three years. In addition, they have also been our "church away from home" whenever we are in the area (this is Uncle Ron and Aunt RoRo's church). They graciously allowed James to attend Pre-K there in 2008 while Jacob was here at Hopkins for those surgeries. This past summer, when we were attending Sunday morning worship there, Jacob walked right up to the front to participate in the Children's Sermon. This was a wonderful moment for all of us as it was truly a visible demonstration of God's grace and mercy toward Jacob(and all of us).
We have been so blessed and also humbled by the wonderful outpouring of kindness and the prayers offered up from all of these wonderful brothers and sisters in the Lord - from our home church, Covenant Presbyterian in Chattanooga, to Valley Baptist here in Baltimore (Cockeysville) and many others in between.
We are His people and the sheep of His pasture.
Daddy and Mommy
Morning Update
Jacob had a good night and we likewise got some good rest. His output from "down below" continues to increase. Praise the Lord. He is still fairly sedated in order to help with the pain. They have a regular room ready for him and he should be moving out if the PICU within the next hour or two. All of his surgeons have been by this morning and all continue to be pleased with his progress.
Please rejoice with us regarding the success of the surgery and please continue to pray for us as we move into the recovery phase. We don't have a firm estimate on how long Jacob will need to be here, but our best guess is probably about three to four weeks. Please continue to hold up James in your prayers this week while we are away, although he is no doubt being sufficiently spoiled by Gran and Papa A (he is in Chattanooga helping us with some home improvement projects).
Little ones to Him belong - they are week but He is strong.
Mommy and Daddy
Please rejoice with us regarding the success of the surgery and please continue to pray for us as we move into the recovery phase. We don't have a firm estimate on how long Jacob will need to be here, but our best guess is probably about three to four weeks. Please continue to hold up James in your prayers this week while we are away, although he is no doubt being sufficiently spoiled by Gran and Papa A (he is in Chattanooga helping us with some home improvement projects).
Little ones to Him belong - they are week but He is strong.
Mommy and Daddy
Wednesday, January 13, 2010
Settled in the PICU
We just left the PICU about a half hour ago and have come back to the Children's House for the night. Jacob woke up briefly, asking to watch one of his video's, then was out again. The plan is to keep him sedated throughout the night. He may go to a regular room tomorrow. We will be trying to get a little rest tonight, while we can. We do want to pass along one particularly encouraging bit of news - Jacob has "pee peed down below" - just a little - but more than he did after the 2008 surgeries. This was probably the biggest thing we have been praying for prior to the suregery today. It has also served as a motivating tool that we have been using with Jacob in order to try and prepare him for what happened today. He has mentioned several times recently how he wanted to pee pee down below, just like his brother. Our prayer is that this is exactly what will continue to happen more and more over the next few days and weeks.
Jacob does have a wrap around his legs, presumably to help keep him from opening up the incision. He did not require traction, but will probably have a breathing tube in, at least until tomorrow. He also will continue to have an SP tube in for some time, until they doctors are confident that his urethra is sufficiently draining his bladder.
We can't thank you enough for all of your prayers today. We truly sensed them going up, like a sweet aroma to the Lord.
Good night for now and we'll look to provide another update in the morning.
Give thanks to the Holy One.
Daddy and Mommy
Jacob does have a wrap around his legs, presumably to help keep him from opening up the incision. He did not require traction, but will probably have a breathing tube in, at least until tomorrow. He also will continue to have an SP tube in for some time, until they doctors are confident that his urethra is sufficiently draining his bladder.
We can't thank you enough for all of your prayers today. We truly sensed them going up, like a sweet aroma to the Lord.
Good night for now and we'll look to provide another update in the morning.
Give thanks to the Holy One.
Daddy and Mommy
He just came out of the OR
The nurses just wheeled Jacob from the OR to the PICU. They are checking him in right now. We saw him briefly as he passed by (he is still asleep) and we should be able to go to his bedside in about 30 mins. The Pediatric Doctor who was with him when he came out said that he did great.
Thanks for your continued prayers.
Because of His Love.
Mommy and Daddy
Thanks for your continued prayers.
Because of His Love.
Mommy and Daddy
Part III finished - waiting for him to come out
Dr. Lau came out about 10 minutes ago and advised that the stoma revision went well. He basically shortened his colon by removing the problem area, then created a new stoma. He kept everything in the same location and also tried to keep the stoma size the same. He feels confident that he has taken care of the stricture (tightness) and that we should no longer have to dilate. This, in and of itself, would be a huge answer to our prayers.
Jacob should be coming out of the OR in the next few minutes and be moved to the recovery area. He will likely stay in the PICU (Ped Intensive Care Unit) tonight for better pain management and may remain sedated as well.
We will update everyone again once Jacob is in the recovery room.
Rejoice in the Lord always - again I say, rejoice.
Mommy and Daddy
Jacob should be coming out of the OR in the next few minutes and be moved to the recovery area. He will likely stay in the PICU (Ped Intensive Care Unit) tonight for better pain management and may remain sedated as well.
We will update everyone again once Jacob is in the recovery room.
Rejoice in the Lord always - again I say, rejoice.
Mommy and Daddy
Parts I and II really finished this time
Dr. Gearhart just came out again and said that he had gotten Jacob closed up and everything seems good. Dr. Lau has just now begun the last phase of the surgery, the stoma revision.
Amazing Grace, how sweet the sound
Mommy and Daddy
Amazing Grace, how sweet the sound
Mommy and Daddy
Part II of three complete - Ortho
Dr. Sponseller just came out and advised that the new "plate" (actually a bar) went in well. He brought us a copy of the x-ray that shows everything clearly. Very neat. Dr. Lau is currently working on the stoma revision and Dr. G is closing up the incision that Urology and Ortho used for Parts I and II.
May God be praised - above all names.
Mommy and Daddy
May God be praised - above all names.
Mommy and Daddy
Part I of three complete - update from Urology
Dr. Gearhart, the primary doctor and Urologist, just came out to let us know that the urethra reconstruction is complete and he is confident that it went according to plan. Dr. Sponseller is replacing the plate (which Dr. G advised is actually now a bar) as we speak. Dr. Lau will go in shortly after that for the stoma revision. During our conversation with Dr. Gearhart, we let him know about this blog and also told him that many people are praying. He replied, "There is no doubt that we had help today, from above." In addition, Aunt RoRo called to let us know that the sunset this evening is beautiful, almost as if the Lord is smiling down on us.
Thanks again for your prayers.
The Lord is good, his love never fails.
Mommy and Daddy
Thanks again for your prayers.
The Lord is good, his love never fails.
Mommy and Daddy
Update and prayer request
As of 4:30 pm, the Urology team is still working on Jacob. The General Pediatric surgeon came out and spoke with us for a few minutes. He is the one who will be working on (revising) Jacob's stoma (his name is Dr. Lau). He advised that he is trying to decide between two different revision techniques, each with potential pros and cons. Please pray that the Lord will grant him wisdom in choosing the best one for Jacob.
May His Love shine down on us.
Mommy and Daddy
May His Love shine down on us.
Mommy and Daddy
Second Update
One of the nurses who put the PIC line in Jacob (kind of like an IV, but can usually stay in longer) just came out and informed us that as of about 2 pm, the first doctor (surgeon) has begun his part. Placing the PIC line was a little bit of a challenge, but he does have two regular IV's in place (arm and foot) so all appears to be OK.
Mommy and Daddy
Mommy and Daddy
Surgery underway
As of about 1 pm today, Mommy and Daddy left Jacob in the Operating Room in the capable hands of the surgeons (and of course, the Lord). He slept very well last night and was generally in good spirits today. They estimate that the sugery will last four to five hours, so we will provide another update soon.
Thank you all for your prayers.
May the God of our salvation be exalted.
Mommy and Daddy
Thank you all for your prayers.
May the God of our salvation be exalted.
Mommy and Daddy
Tuesday, January 12, 2010
One Year Later...
2009 was quite a year for us. It was filled with both blessings and challenges. Jacob has just turned three and James is five. With one or two exceptions (which we'll explain in a moment), Jacob recovered well from the two major surgeries he had in 2008. He has gained 10 pounds, grown about 8 inches, walks quite well and can definitely carry on a conversation with most anyone or anything. He and his brother get along just like you'd expect from two siblings that are close in age - they love each other one minute and the next minute they are doing a little "pushin' and shovin'".
James started Kindergarten this year and so far has done well. We are excited to see him learn how to read, count to 100 (and beyond), tell us that recess is his favorite class and even go on Field Trips. James did give us a bit of a scare this year. In August, he had two seizures that were exactly a week apart. He has since been put on epilepsy medication and, thankfully, has not had anymore. However, he frequently tells us that his eyes are bothering him. He has had the usual battery of tests - EKG, EEG, MRI, CAT scans and blood work, but we still do not know exactly what caused the seizures or the eye sensitivity.
And now back to Jacob. You may recall from our last post (almost a year ago today), that there were a couple of lingering issues from the 2008 surgeries. Most notably, his pelvic plate is/has eroded into his urethra, which has necessitated us keeping the SP tube (catheter) and urine bag in place since that time. This has proven to be one of our bigger challenges during the past year. At one time, over the summer, while playing on a makeshift water slide, the SP tube came out, sending us immediately to the Emergency Room (the SP tube, as you may recall, is a catheter that comes out of his bladder and empties into a bag that we attach to the side of his leg. It is his only means of urinating, so when it came out, it was definitely "go time." Thankfully, by God's grace and mercy, the ER staff in Chattanooga was able to get a temporary tube in and we later (next day) got it replaced by a Ped Urologist. There was also one other time where it nearly came out, but we, again by the grace of God, were able to inflate the balloon that holds the catheter in place and get an appointment shortly thereafter to have the tube changed out again (we generally had to change it out every 1-2 months, unless something came up).
In addition, we continued to have problems with his stoma (colostomy). There was talk of doing a revision early last year, but the doctors at John Hopkins decided that it was not yet necessary. As the year went along, however, the stoma seems to have grown tighter, making it a challenge for Jacob to pass stool. He would often wake up during the night with what appeared to be pain related to the the catheter, but we later realized that it also had to do with the tightness in his stoma. To help relieve this, we had to dilate the stoma on a daily basis. This was very difficult for us as parents (dilating involves inserting a metal rod into the stoma for the purpose of stretching it out). Once again, by God's grace, we were able to "Convince" our insurance company to cover a home health nurse for us. Ms. Elsea is her name and she has been a tremendous blessing to us. She is a good nurse and has helped remove much of the stress that we experienced in having to dilate Jacob (and help maintain his SP tube). She is also a wonderful Christian lady and we are blessed to have had her in our lives these past few months.
So after that brief update (by Arrington standards), you may be asking, "OK, so what's happening right now?" Well, we have returned to Johns Hopkins for another surgery. The purpose of this one is to try and "fix" the things mentioned above. The surgery is scheduled for today, 1/13/10, at around noon. There will be three main surgeons involved - Urologist, Orthopedic and General Pediatric. The Orthopedic team plans to first remove the pelvic plate that has apparently eroded into his urethra. Urology will then reconstruct his urethra (basically they will have to create another one for him, hopefully using his own skin). The Gen Pediatric team will then evaluate his stoma and revise as needed.
We (minus James) arrived in Baltimore on Monday night (the 11th). The Lord got us here safely in less than 12 hours (by car), which for us is probably a record. Jacob was admitted yesterday at around noon for bowel "prep." Let's just say that this was a pretty challenging time for everyone, especially Jacob. However, as we write this now, he is calm and sleeping well.
We are so thankful for everyone who prays for us, even when the updates to this blog disappeared for the past year. For those who prefer to pray for specific items, we have listed these below:
1. Please pray that Jacob is physically ready for the surgery later today (i.e. that he stays healthy between now and then and that all of the "prep" will work as it should).
2. This leads to a praise that we must mention - the Lord has truly been gracious to all of us this past fall, especially Jacob, when it comes to our health. With James in school and a fairly high rate of flu cases in our area, we have made it this far without many problems. James has been sick a couple of times, but each time tested negative for the flu. Courtney and Bryan have also dealt with some sinus and throat issues, too, but in each case, the Lord has protected Jacob.
3. Please pray for the Anesthesiology team that will be working with Jacob.
4. Please pray for the three surgeons who will be operating - Dr. Gearhart, Dr. Sponseller and Dr. Lau.
5. Please pray for the nurses and other hospital staff who will attend to Jacob before, during and after the surgeries. We must point out that it did feel like a homecoming of sorts today and yesterday, as we have been able to reconnect with many of the nurses (Kiki, Allie and Ashley, just to name a few) who took care of Jacob in 2008.
6. Please pray that this surgery will allow him to "pee down below" and no longer require the SP tube and urine bag. Jacob loves to "whestle (wrestle)" and we, as parents, will feel much better about him doing this if there is not a catheter that can come loose.
7. Please pray that his stoma can be sufficiently revised to where we no longer have to dilate and he no longer experiences the same level of discomfort (especially at night).
8. Please pray that the surgery itself will be a success - this may go without saying, but in this case, there is certainly still a chance that the pelvic plate might erode back into the uretha again.
9. Please pray that Jacob will have enough skin and tissue in order to create a new urethra and allow for a good "closure" to the wound.
10. Please pray that the doctor's will be able repair some of the scars left over from the previous surgeries.
11. Please pray that Jacob will heal quickly and not require a long hospital stay. Our best estimate at this point is around 3-4 weeks.
12. Please pray for James - he stayed back in Chattanooga with Gran (Courtney's mom) so he can go to school. Please pray that God will give Gran the extra strength she needs to attend to and care for an active five year old. We are so very thankful for the major sacrificies she has (and continues) to make for our family. Pray that God will bless her richly for these sacrifices.
13. Also for James - we have an appointment for him on the 26th with an eye doctor here at Hopkins (and may schedule one later with a seizure doc). Please pray that we might be able to get some additional insight (and possible solutions) to the eye sensitivity issues.
14. Please pray for Daddy BA as he plans to travel back to Chattanooga this weekend, spend next week with James, then return with James the following weekend for his appointments. Please pray for safety in travel, good weather and no car issues.
15. Please pray for Courtney as she will once again be here with Jacob, at the hospital, the majority of the time. Please pray that she will be able to get some rest and that the Lord will grant her the strength she needs.
We are once again so very humbled and most thankful for all the Lord has done for us through you - His people.
May God Bless you richly and may all glory, praise and honor be unto the One whose mercies are new and fresh every morning.
Mommy and Daddy
PS - we will try to give regular updates over the next few weeks, along with a few photos.
James started Kindergarten this year and so far has done well. We are excited to see him learn how to read, count to 100 (and beyond), tell us that recess is his favorite class and even go on Field Trips. James did give us a bit of a scare this year. In August, he had two seizures that were exactly a week apart. He has since been put on epilepsy medication and, thankfully, has not had anymore. However, he frequently tells us that his eyes are bothering him. He has had the usual battery of tests - EKG, EEG, MRI, CAT scans and blood work, but we still do not know exactly what caused the seizures or the eye sensitivity.
And now back to Jacob. You may recall from our last post (almost a year ago today), that there were a couple of lingering issues from the 2008 surgeries. Most notably, his pelvic plate is/has eroded into his urethra, which has necessitated us keeping the SP tube (catheter) and urine bag in place since that time. This has proven to be one of our bigger challenges during the past year. At one time, over the summer, while playing on a makeshift water slide, the SP tube came out, sending us immediately to the Emergency Room (the SP tube, as you may recall, is a catheter that comes out of his bladder and empties into a bag that we attach to the side of his leg. It is his only means of urinating, so when it came out, it was definitely "go time." Thankfully, by God's grace and mercy, the ER staff in Chattanooga was able to get a temporary tube in and we later (next day) got it replaced by a Ped Urologist. There was also one other time where it nearly came out, but we, again by the grace of God, were able to inflate the balloon that holds the catheter in place and get an appointment shortly thereafter to have the tube changed out again (we generally had to change it out every 1-2 months, unless something came up).
In addition, we continued to have problems with his stoma (colostomy). There was talk of doing a revision early last year, but the doctors at John Hopkins decided that it was not yet necessary. As the year went along, however, the stoma seems to have grown tighter, making it a challenge for Jacob to pass stool. He would often wake up during the night with what appeared to be pain related to the the catheter, but we later realized that it also had to do with the tightness in his stoma. To help relieve this, we had to dilate the stoma on a daily basis. This was very difficult for us as parents (dilating involves inserting a metal rod into the stoma for the purpose of stretching it out). Once again, by God's grace, we were able to "Convince" our insurance company to cover a home health nurse for us. Ms. Elsea is her name and she has been a tremendous blessing to us. She is a good nurse and has helped remove much of the stress that we experienced in having to dilate Jacob (and help maintain his SP tube). She is also a wonderful Christian lady and we are blessed to have had her in our lives these past few months.
So after that brief update (by Arrington standards), you may be asking, "OK, so what's happening right now?" Well, we have returned to Johns Hopkins for another surgery. The purpose of this one is to try and "fix" the things mentioned above. The surgery is scheduled for today, 1/13/10, at around noon. There will be three main surgeons involved - Urologist, Orthopedic and General Pediatric. The Orthopedic team plans to first remove the pelvic plate that has apparently eroded into his urethra. Urology will then reconstruct his urethra (basically they will have to create another one for him, hopefully using his own skin). The Gen Pediatric team will then evaluate his stoma and revise as needed.
We (minus James) arrived in Baltimore on Monday night (the 11th). The Lord got us here safely in less than 12 hours (by car), which for us is probably a record. Jacob was admitted yesterday at around noon for bowel "prep." Let's just say that this was a pretty challenging time for everyone, especially Jacob. However, as we write this now, he is calm and sleeping well.
We are so thankful for everyone who prays for us, even when the updates to this blog disappeared for the past year. For those who prefer to pray for specific items, we have listed these below:
1. Please pray that Jacob is physically ready for the surgery later today (i.e. that he stays healthy between now and then and that all of the "prep" will work as it should).
2. This leads to a praise that we must mention - the Lord has truly been gracious to all of us this past fall, especially Jacob, when it comes to our health. With James in school and a fairly high rate of flu cases in our area, we have made it this far without many problems. James has been sick a couple of times, but each time tested negative for the flu. Courtney and Bryan have also dealt with some sinus and throat issues, too, but in each case, the Lord has protected Jacob.
3. Please pray for the Anesthesiology team that will be working with Jacob.
4. Please pray for the three surgeons who will be operating - Dr. Gearhart, Dr. Sponseller and Dr. Lau.
5. Please pray for the nurses and other hospital staff who will attend to Jacob before, during and after the surgeries. We must point out that it did feel like a homecoming of sorts today and yesterday, as we have been able to reconnect with many of the nurses (Kiki, Allie and Ashley, just to name a few) who took care of Jacob in 2008.
6. Please pray that this surgery will allow him to "pee down below" and no longer require the SP tube and urine bag. Jacob loves to "whestle (wrestle)" and we, as parents, will feel much better about him doing this if there is not a catheter that can come loose.
7. Please pray that his stoma can be sufficiently revised to where we no longer have to dilate and he no longer experiences the same level of discomfort (especially at night).
8. Please pray that the surgery itself will be a success - this may go without saying, but in this case, there is certainly still a chance that the pelvic plate might erode back into the uretha again.
9. Please pray that Jacob will have enough skin and tissue in order to create a new urethra and allow for a good "closure" to the wound.
10. Please pray that the doctor's will be able repair some of the scars left over from the previous surgeries.
11. Please pray that Jacob will heal quickly and not require a long hospital stay. Our best estimate at this point is around 3-4 weeks.
12. Please pray for James - he stayed back in Chattanooga with Gran (Courtney's mom) so he can go to school. Please pray that God will give Gran the extra strength she needs to attend to and care for an active five year old. We are so very thankful for the major sacrificies she has (and continues) to make for our family. Pray that God will bless her richly for these sacrifices.
13. Also for James - we have an appointment for him on the 26th with an eye doctor here at Hopkins (and may schedule one later with a seizure doc). Please pray that we might be able to get some additional insight (and possible solutions) to the eye sensitivity issues.
14. Please pray for Daddy BA as he plans to travel back to Chattanooga this weekend, spend next week with James, then return with James the following weekend for his appointments. Please pray for safety in travel, good weather and no car issues.
15. Please pray for Courtney as she will once again be here with Jacob, at the hospital, the majority of the time. Please pray that she will be able to get some rest and that the Lord will grant her the strength she needs.
We are once again so very humbled and most thankful for all the Lord has done for us through you - His people.
May God Bless you richly and may all glory, praise and honor be unto the One whose mercies are new and fresh every morning.
Mommy and Daddy
PS - we will try to give regular updates over the next few weeks, along with a few photos.
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