As of about an hour or two ago, the pesky scab around the continence stoma finally broke free and is now off. Praise the Lord.
Mommy had been regularly soaking it in an attempt to move it along (before next week's procedures), but in doing so, it was making the adhesive on his colostomy bag come off prematurely.
Also, Jacob's output has been good over the past few days and he has been drinking (well, sometimes with a little bit of bribery/incentive involved).
We also have a couple of prayer requests. First, please pray for Jacob (and all of us, really) in the coming weeks. We have a few planned and tentative dates for the "next steps" in the recovery. Here they are:
Dec 16th - remove two kidney stints
Dec 17th - IVP test (kidneys). This will involve the placment of an IV, so please pray for this will go smoothly (Jacob has historically been a difficult "stick").
In addition, we also have an appointment with Dr. Jallo, Jacob's neurologist, to check out his leg pain and tip-toe walking.
Lastly, Daddy and James are planning to travel up this weekend. Please pray for safe travels as there is a potential for mixed precip on Saturday, at least in the Baltimore area.
Unto the King Eternal, Immortal, Invisible, the only Wise God, be all Praise and Glory.
Mommy and Daddy
Tuesday, December 10, 2013
Saturday, December 7, 2013
Leaving the ER
One of the doctors who was in on Jacob's surgery checked him out and after several ultrasounds, they've decided to send him home. We are thankful that he did not require an IV and that he did not have to get admitted. We are still concerned about the output, so we'd like to ask for your continued prayers - mostly that he will drink plenty of water and that a return trip to the ER will not be needed.
We certainly covet and appreciate your prayers.
To God be the Glory.
Mommy and Daddy
We certainly covet and appreciate your prayers.
To God be the Glory.
Mommy and Daddy
Another Update
After running an ultrasound, the doctors advised that they could not find any pee in the bladder. This is strange because he has been drinking today. They are going to try to get Jacob to drink a lot of water and see if this gets things moving again. If not, the docs may run another test on his kidneys.
Thank you for praying.
Mommy and Daddy
Thank you for praying.
Mommy and Daddy
Prayer update
Please continue to pray for Jacob. The pee still would not come out, so he and Mommy are heading to the ER.
Hold to God's unchanging Hand.
Mommy and Daddy
Hold to God's unchanging Hand.
Mommy and Daddy
Prayer Requests and update
We'd like to request prayer for Jacob today. One of his kidney stints is not flushing very well. In addition, he has complained of some pain in that area. Ultimately, the doctors want the pee to stop coming through the stints and only come through the SP tube (directly from the bladder). The stints continue to produce some urine, so please pray that everything will start to come through the SP only.
Lastly, there is a scab near the continence stoma that has become a bit of a concern. Mommy has been soaking it since Tuesday in the hopes that it will fall off well before the 16th. However, it seems to be kind of tangled up with a few stitches and doesn't want to come off.
As of today, the plan is to continue flushing and maintaining the SP tube from his bladder and the two kidney stints until the 16th. At that time, Dr G plans to remove the two stents and "activate" the continece stoma (begin cathing). Please pray that everything will stay on schedule and that these areas of concern will resolve quickly.
The Lord, He is God. Blessed be the Name of the Lord.
Mommy and Daddy
Lastly, there is a scab near the continence stoma that has become a bit of a concern. Mommy has been soaking it since Tuesday in the hopes that it will fall off well before the 16th. However, it seems to be kind of tangled up with a few stitches and doesn't want to come off.
As of today, the plan is to continue flushing and maintaining the SP tube from his bladder and the two kidney stints until the 16th. At that time, Dr G plans to remove the two stents and "activate" the continece stoma (begin cathing). Please pray that everything will stay on schedule and that these areas of concern will resolve quickly.
The Lord, He is God. Blessed be the Name of the Lord.
Mommy and Daddy
Tuesday, December 3, 2013
Happy Birthday, Jacob
Today is Jacob's 7th birthday. In reviewing our blog, we realized that we never really shared the story of his birth and some of the events that took place between 12/3/06 and his surgeries in late 2008, when we started this blog. So it seemed fitting that we do so today - on his birthday.
It is kind of a long read, but we know there are some who may be interested in hearing Jacob's story from the beginning.
It is hard to believe that exactly seven years ago, Jacob was born into this world and a mere 24 hours later, he was taken by medical air transport from Chattanooga to Baltimore. It was certainly a whirlwind day for Mommy and Daddy, along with our friends and family.
We really didn't know exactly what Jacob had, other than what we could see (the picture at the top of the blog gives you some idea). We are thankful that the surgeon on duty when he was born was honest in saying she hadn't seen anything like this before. She located two hospitals, one in Seattle and the other in Baltimore.
By God's grace and mercy, we ended up at John's Hopkins in Baltimore. It turns out that this really is the premier facility, in the world, for treating bladder and cloacal extrophy. We've heard many stories from families where other hospitals have attempted surgeries on exstrophy infants/kids only to have the surgeries fail - mostly due to the rare nature of the birth defect. Cloacal exstrophy occurs in only one out of every 250-400,000 live births and is considered one of the most severe birth defects where human life can still be supported. Of course we know that As an added bonus, our Lord allowed us to go to a place that was within 30 minutes of family.
However, since Mommy had just had a C-Section delivery, we were not able to go up until two days later. Thankfully, Uncle Ron and Aunt RoRo checked on our little Jacob until we were able to get there to be with him.
Jacob spent the first three weeks of his life in the NICU at Johns Hopkins. He had an omphalocele surgery to put his bowel/intestines back inside and also had a stoma/colostomy put in place. We met Dr. G for the first time and he told us that Jacob had cloacal exstrophy. He said that he was encouraged by the size of Jacob's bladder and the amount of bowel he had. There were, however, some other physical aspects to his condition that we knew would present some challenges down the road.
Shortly after that, still during his first week out in the world, we found out that he needed heart surgery. It was one of those, "whoa, wait a minute" moments - very unexpected - especially considering everything else that was going on. It turned out to be a PDA surgery, which while it was around his heart, was (thankfully) not as serious as we first thought. By God's grace, he was released from the hospital two days before Christmas - a great gift to us even as we celebrated the greatest gift of all (Jesus).
Over the next few months, we became "experts" at taking care of an exposed bladder (saline and saran wrap), a colostomy and a club foot (which required an achilles surgery, cast and bar). Within about a month of getting out of the hospital, we made our first trip back to Erlanger here in Chattanooga, as Jacob had gotten RSV. He spent several days in the hospital and we quickly learned that cloacal's can become dehydrated very quickly, due to their much shorter than normal bowels and difficulty with nutrient absorption.
Later in that same year, we noticed that he had a fatty bulge on his lower back. We had it checked out and it was determined that he had a tethered spinal cord that would require surgery. We scheduled the surgery for the end of August, but God had a different plan for us. Upon arriving in Baltimore a few days prior to the surgery, Jacob started to develop a cough. We went to the pre-op area only to have them tell us that it was too risky to put Jacob under anesthesia with his cough. So, we headed back to Chattanooga and rescheduled for it for the end of the next month.
This time, the surgery took place as planned and Jacob was in the hospital for a week or two. The suregery went well, but the recovery was pretty challening. Since Jacob's bladder was still out at the time, his urine was always getting close to the incision site. He had several large openings/wounds in his lower back that required daily treatment of bandages, gauze, and some other stuff to promote healing.
Mommy busted out her McGyver skills and came up with a system to help keep the pee from making it around to his back. She used a combination of a diaper, men's guard and female pad. It took quite a bit of trial and error and it wasn't a very pretty site to see (literally or figuratively), but it worked like a charm.
But then there was the wound dressings. These had to be continued for several weeks after Jacob was released from the hospital. Mommy attempted to handle them, but it became tough to stomach the site of the large openings. Thankfully, we ended up getting a great home health nurse, Ms. Elsie, who, in addition to being a tremendous help to us, was also a fine Christian woman. Even though it seemed like it took forever, the wounds did eventually heal up.
It is hard to believe that exactly seven years ago, Jacob was born into this world and a mere 24 hours later, he was taken by medical air transport from Chattanooga to Baltimore. It was certainly a whirlwind day for Mommy and Daddy, along with our friends and family.
We really didn't know exactly what Jacob had, other than what we could see (the picture at the top of the blog gives you some idea). We are thankful that the surgeon on duty when he was born was honest in saying she hadn't seen anything like this before. She located two hospitals, one in Seattle and the other in Baltimore.
By God's grace and mercy, we ended up at John's Hopkins in Baltimore. It turns out that this really is the premier facility, in the world, for treating bladder and cloacal extrophy. We've heard many stories from families where other hospitals have attempted surgeries on exstrophy infants/kids only to have the surgeries fail - mostly due to the rare nature of the birth defect. Cloacal exstrophy occurs in only one out of every 250-400,000 live births and is considered one of the most severe birth defects where human life can still be supported. Of course we know that As an added bonus, our Lord allowed us to go to a place that was within 30 minutes of family.
However, since Mommy had just had a C-Section delivery, we were not able to go up until two days later. Thankfully, Uncle Ron and Aunt RoRo checked on our little Jacob until we were able to get there to be with him.
Jacob spent the first three weeks of his life in the NICU at Johns Hopkins. He had an omphalocele surgery to put his bowel/intestines back inside and also had a stoma/colostomy put in place. We met Dr. G for the first time and he told us that Jacob had cloacal exstrophy. He said that he was encouraged by the size of Jacob's bladder and the amount of bowel he had. There were, however, some other physical aspects to his condition that we knew would present some challenges down the road.
Shortly after that, still during his first week out in the world, we found out that he needed heart surgery. It was one of those, "whoa, wait a minute" moments - very unexpected - especially considering everything else that was going on. It turned out to be a PDA surgery, which while it was around his heart, was (thankfully) not as serious as we first thought. By God's grace, he was released from the hospital two days before Christmas - a great gift to us even as we celebrated the greatest gift of all (Jesus).
Over the next few months, we became "experts" at taking care of an exposed bladder (saline and saran wrap), a colostomy and a club foot (which required an achilles surgery, cast and bar). Within about a month of getting out of the hospital, we made our first trip back to Erlanger here in Chattanooga, as Jacob had gotten RSV. He spent several days in the hospital and we quickly learned that cloacal's can become dehydrated very quickly, due to their much shorter than normal bowels and difficulty with nutrient absorption.
Later in that same year, we noticed that he had a fatty bulge on his lower back. We had it checked out and it was determined that he had a tethered spinal cord that would require surgery. We scheduled the surgery for the end of August, but God had a different plan for us. Upon arriving in Baltimore a few days prior to the surgery, Jacob started to develop a cough. We went to the pre-op area only to have them tell us that it was too risky to put Jacob under anesthesia with his cough. So, we headed back to Chattanooga and rescheduled for it for the end of the next month.
This time, the surgery took place as planned and Jacob was in the hospital for a week or two. The suregery went well, but the recovery was pretty challening. Since Jacob's bladder was still out at the time, his urine was always getting close to the incision site. He had several large openings/wounds in his lower back that required daily treatment of bandages, gauze, and some other stuff to promote healing.
Mommy busted out her McGyver skills and came up with a system to help keep the pee from making it around to his back. She used a combination of a diaper, men's guard and female pad. It took quite a bit of trial and error and it wasn't a very pretty site to see (literally or figuratively), but it worked like a charm.
But then there was the wound dressings. These had to be continued for several weeks after Jacob was released from the hospital. Mommy attempted to handle them, but it became tough to stomach the site of the large openings. Thankfully, we ended up getting a great home health nurse, Ms. Elsie, who, in addition to being a tremendous help to us, was also a fine Christian woman. Even though it seemed like it took forever, the wounds did eventually heal up.
We had one reminder, though, from that surgery that stayed in place for over six years. There was a stitch in his lower back that didn't come out. We could see it clearly, but removing it at the time might have opened him up for a potential infection. So the surgeon advised that we should just leave it. It sometimes irritated Jacob because it was right at his pants line and we did sometimes put bandages and neosporin on it. Otherwise, we just left it there. BUT - whenever we had our evening prayer time, we would mention the stitch, asking that God would protect it from infection and that it might come out according to His will and timing.
Earlier this year, God decided it was time for the stitch to come out and it did so without any real pain or worries.
Over the next few months, we prepared for the two "big" surgeries - bladder closure and osteotomy (pelvic bone). Within less than a year, we would be heading up to Hopkins again for what turned out to be a 10 week hospital stay and 101 total days in Baltimore. But to find out more about what happened then, be sure to check out the older posts in our blog.
As we look back, we see more and more clearly how God has worked in and through all of these circumstances, that which was pleasing to Him. And we rejoice in knowing that all of the glory - in the tough times and the good times, belongs to Him alone.
Happy Birthday, Jacob. We love you greatly and thank The Lord daily for the great things He has done for you, for us, for our friends and family, for all of the faithful prayer warriors out there and for any who have been (and hopefully will continue to be) touched in some way through this journey.
Mommy and Daddy
Update from today's appointment
Mommy and Jacob returned a few moments ago from his appointment with Dr. G. The report was good and as it stands now, he is scheduled to get the two kidney stents removed on Monday, 12/16, and have an ultrasound the next day. After removing the stents, we will begin catheter training.
We are still not completely sure what happened with the infection, but we will continue with the antibiotic and are most thankful for the good report.
Thank you for praying.
Mommy and Daddy
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