Yesterday Silas had his 5th and (hopefully) final Botox treatment to relax the tightened intestinal sphincter that has been giving him problems since he was 1.5 years old. Over the course of these treatments we have been so blessed with great anesthesiologists who allow us to hold Silas on our lap while they put him to sleep in the OR (it goes much smoother that way before and after the procedure). Becides, seeing his parents dress in a full suit for the OR is kind of exciting for him. He really has become brave about the whole thing and we are very proud of him for maturing in this way. He says that his favorite things about going to the hosptial are: getting to ride in the little wagon (instead of a wheel chair), and getting a popcycle when he wakes up in the recovery room. He also likes it when his surgeon tells him funny jokes that make him laugh:).
We won't schedule another Botox treatment in 4 months from now because it appears that his intestines have been trained to relax well enough. If he has a problem down the road, we can address it then. For now, he's doing great so we're gonna let him keep going strong:) His new surgeon has been so knowledgable and experienced with Silas' condition which has allowed Silas to receive the great medical care that he's been needing. Also, he doesn't need to be on a strict diet anymore since his intestines are finally functioning correctly!!
In April we welcomed Levi into our family and we have been so thankful that Silas has felt the best he has in his entire life, just in time for our new baby! He's had ZERO hospitalizations in over a year (a life-time record for him!), he can eat almost anything he wants, he doesn't need any medical interventions to help him go to the bathroom, and he is the healthiest he's been for the longest period of time yet! Once again, our Healer has graced us with His touch on Silas' life. To everyone who's been praying over the years - thank you for your commitment, care, and love!! Our faith had been made stronger from facing some tough times and we've "tasted and seen that the Lord is good" (Psalm 38:4).
Wednesday, September 21, 2016
Friday, October 23, 2015
OR visit in October
As of 10/23/15
The botox treatment in August was so successful we decided to continue doing rounds until his intestine is "trained" to not tighten up. Unfortunately, botox is not permanent and wears off after a couple of months. Silas' wore off 6 weeks after his first treatment, so we've had some minor problems with him not feeling well in the past couple of weeks. We are very relieved he could get treated today and he can start feeling well again! His next round of botox will be in January.
The botox treatment in August was so successful we decided to continue doing rounds until his intestine is "trained" to not tighten up. Unfortunately, botox is not permanent and wears off after a couple of months. Silas' wore off 6 weeks after his first treatment, so we've had some minor problems with him not feeling well in the past couple of weeks. We are very relieved he could get treated today and he can start feeling well again! His next round of botox will be in January.
Pre-op cuddles with daddy are the best!
Nolan saying goodbye to Silas after a little game of ball together in our room.
They let mom in the OR!! It's a really big deal because they never allow that. We just asked (like we do every time), and this time they said YES!!
A little bit of chicken soup for recovery really perked him up again!
Gratutide in September
As of 9/25/15
There is SO much to be thankful for right now!
1) Silas has been feeling SO much better since the botox treatment! Life has been a breeze for us with absolutely NO assisting him to "go". What a relief, what a time-saver, what a joy to have him healthy.
2) Normally, traveling triggers Silas' intestinal troubles because he does "stool holding" while away from home. However, for the FIRST time ever, we have been "traveling" for 5 weeks now and Silas has not had any problems because of stool holding! What a relief. If he didn't have this botox treatment, he surely would have gotten sick and been hospitalized at some point during these 5 weeks of evacuation.
3) Normally, being away from mom and/or dad can trigger intestinal troubles - also because of stool holding. However, Jay and I were able to get away for 6 days in Hawaii to celebrate 10 years of marriage! And, Silas was FINE!!! What a blessing!
4) Our home at Hume Lake was protected miraculously, and no buildings were burned! We will return home in a couple of days :)
We might have to take Silas in to get more botox every 3 months or so, depending on how he is doing. Please join us in praying that he continues to thrive!
Thank you all for your love and care!
At the Fresno Zoo; passing the time while waiting for the fire to clear up.
Refined by the Fire in August
As of 8/10/15
The second opinion from another surgeon last week was SO valuable. He wants to do a few tests on Silas (for you medical nerds: "manometry" and "ganglion cell biopsy" are the tests he'll have while under anesthesia), and he recommends an injection of... wait for it... BOTOX! Yes, it's true. Botox injected in his intestine might actually be the resolution to the problems Silas has faced over the past 2 years. It could help relax an over-active sphincter that might be the culprit for all the troubles (the manometry test will also tell us a few things).
Silas is still recovering from the repercussions of his stomach flu in early July. His energy is definitely back, but his appetite and "regularity" in stooling are far from regular which makes him feel nauseated and he acts irritable.
We are praying that the surgeon will have time to do this botox thing sooner rather than later so Silas can make better progress healing. Thanks for all the love and support!
As of 8/14/15
Thanks for praying! The surgeon was able to squeeze us in for this Monday 8/17 at 10am, however he is on call for emergencies that day, so if an emergency arrises it will take priority over Silas. Pray that doesn't happen!! Silas really needs this procedure sooner rather than later. Again, this is quick manometry test, ganglion cell biopsy, and botox injection into the intestine (scroll down to the last post in "How We Got Here" to find out more details). Should be 15 minutes total under anesthesia. Pray for protection of his brain from long term affects of anesthesia, and also for accurate test results and that the botox would help!
As of 8/20/15
I am always amazed at how God hears our prayers! There were no emergencies, so the surgeon was able to do the procedure as planned! Also, the botox injection went fine and he reacted to the anesthesia great. The cell biopsy showed normal ganglion cells, so no need for any surgeries - YAY!!!!! The botox takes a few days to be effective, so we are just seeing improvement today and yesterday, and let me say how wonderful it is so far. He really seems to be feeling better and "going" much more easily and more often, which means we don't have to "help" him in any way or give him medications anymore. Pray that it only continues to improve and there are no problems in the future. Hopefully this will be a last step in solving his problems and he can be on the road to normalcy.
PS: our family was evacuated from our home at Hume Lake right after Silas' procedure because of the nearing of the "Rough Fire". We are staying with Jenine's parents in Orange County until we are allowed to return home again.
The second opinion from another surgeon last week was SO valuable. He wants to do a few tests on Silas (for you medical nerds: "manometry" and "ganglion cell biopsy" are the tests he'll have while under anesthesia), and he recommends an injection of... wait for it... BOTOX! Yes, it's true. Botox injected in his intestine might actually be the resolution to the problems Silas has faced over the past 2 years. It could help relax an over-active sphincter that might be the culprit for all the troubles (the manometry test will also tell us a few things).
Silas is still recovering from the repercussions of his stomach flu in early July. His energy is definitely back, but his appetite and "regularity" in stooling are far from regular which makes him feel nauseated and he acts irritable.
We are praying that the surgeon will have time to do this botox thing sooner rather than later so Silas can make better progress healing. Thanks for all the love and support!
As of 8/14/15
Thanks for praying! The surgeon was able to squeeze us in for this Monday 8/17 at 10am, however he is on call for emergencies that day, so if an emergency arrises it will take priority over Silas. Pray that doesn't happen!! Silas really needs this procedure sooner rather than later. Again, this is quick manometry test, ganglion cell biopsy, and botox injection into the intestine (scroll down to the last post in "How We Got Here" to find out more details). Should be 15 minutes total under anesthesia. Pray for protection of his brain from long term affects of anesthesia, and also for accurate test results and that the botox would help!
As of 8/20/15
I am always amazed at how God hears our prayers! There were no emergencies, so the surgeon was able to do the procedure as planned! Also, the botox injection went fine and he reacted to the anesthesia great. The cell biopsy showed normal ganglion cells, so no need for any surgeries - YAY!!!!! The botox takes a few days to be effective, so we are just seeing improvement today and yesterday, and let me say how wonderful it is so far. He really seems to be feeling better and "going" much more easily and more often, which means we don't have to "help" him in any way or give him medications anymore. Pray that it only continues to improve and there are no problems in the future. Hopefully this will be a last step in solving his problems and he can be on the road to normalcy.
PS: our family was evacuated from our home at Hume Lake right after Silas' procedure because of the nearing of the "Rough Fire". We are staying with Jenine's parents in Orange County until we are allowed to return home again.
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| Photo taken by a Hume staff member while on a plane on Thursday 8/20 at 4pm. The billows of smoke dwarf Hume Lake, which is immediately to the left of the fire. We have been praying for the wind to blow East to keep the fire away and allow firefighters to create more protective barriers. |
A Joyful July
The low FODMAP diet really revolutionized our lives. Silas took ZERO antibiotics for one year and had only a couple of minor/brief hospital stays for stool-holding (usually revolved around traveling away from home). Then in late June 2015 he got a legitimate intestinal virus and was in the hospital for 9 days, and tested positive for SIBO for the first in over one year, so he got back on the antibiotics and strict diet again, but that's not so bad compared to 2014! He has felt better overall, and well enough to play and go on adventures, but still wasn't his old self in some ways for about 1 month.
On a follow up visit last week with his pediatrician, we were advised to gain a second opinion from another surgeon because it's possible that the Hirschprung's disease is not completely gone and this is why Silas is so sensitive to stool-holding and intestinal viruses. We have an appointment to see a different surgeon on August 6th.
Would you please pray with us for God's leadership over this situation. The last thing we want him to endure is another surgery. Pray that there might be another way to help him. Thank you!
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| 7/15 Daytrip to the Kings River for Jay's birthday! |
Would you please pray with us for God's leadership over this situation. The last thing we want him to endure is another surgery. Pray that there might be another way to help him. Thank you!
What Happened in 2013/2014
As of 1/29/13
On Monday, 1/28/13 Silas had another contrast x-ray test in the hospital. It was a fairly quick and routine exam to find out the success of the previous surgery back in December. We had a great team in the room, and the data was gathered rather quickly which allowed a lower-stress environment compared to previous experiences during the same test. The surgeon said he's happy with what he saw and is moving us towards final surgery. We are heading out of town to Orange County for almost two weeks which means that Silas will go quite a while without being dilated. We will see his surgeon after the trip for another dilation and if Silas feels typical and hasn't changed much in size, we should start making arrangements for surgery as soon as possible.
All three of us are spent and done in many different ways. It's an on-going struggle to balance the amazing blessing of such an amazing kid and all the fun that comes with him against the challenges and difficult stuff we've gone through. Its a taxing and fulfilling place to be, and it has stretched who we are. We are looking forward to some more "normal" time with our li'l guy so we can just be a family and let the last year become more of a memory and less of an ongoing reality.
His confidence is growing and he waves all the time.
As of 2/17/13
The surgeon was pleased with Silas' colon at the most recent visit this past week. Despite going nearly 3 weeks without being dilated his colon didn't tighten up very much, which is a good sign. Doc wants to dilate him again in 2 weeks just to be "safe" before scheduling a surgery to reverse the ileostomy.
On another note, Silas just turned one! We had a wonderful time celebrating while we were in Orange County and we're looking forward to celebrating again with our Hume friends after his surgery. He's learning new things everyday and we're enjoying watching grow. Some of his most recent new tricks: dancing, taking a few steps, and sign language.
1st Birthday party, enjoying a s'mores cupcake.
As of 2/19/13
After a brief phone conversation with the Dr, he agreed to tentatively schedule the final surgery asap which would be next Wednesday! Its tentative based on how Silas' colon feels during his dilation the day before. If it doesn't feel right, we may need to postpone until he does feel correct which could be another month or more, we never know. Next Tuesday is a turning point to go down one of two roads.
We're prayerful that:
1- Silas is completely healed and ready for surgery
2- The hospital will have availability
3- We will be rested and have clear minds for this next step.
As of 2/26/13
Today's doctor appointment was disappointing. The surgeon noticed some tightening in Silas' colon in the area where December's surgery was, which is enough reason for him to want to do more testing before thinking about reversing the ileostomy. Tomorrow, with Silas under anesthesia, the surgeon will run some tests on his colon to get a better idea of what's going on inside there. If he sees good things, he may just do the surgery right then and there - that would be nice, but we're not holding our breath for that (though we are packing in case it does happen since that would mean staying in the hospital for one week). Thank you for keeping our family in prayer tomorrow!
As of 2/28/13
On Wednesday 2/27 Silas had a colonoscopy procedure in the Operating Room to see how much his colon has healed since December's surgery. If it looked healed, the surgeon would do surgery to reverse the ileostomy right then and there. If it didn't look healed, the surgeon would not operate - and that's what happened. Apparently part of Silas' colon has some "granulation" inside of it - inflammation/blood vessels trying to heal the area after surgery. The granulation grows inside the colon and can act as a blockage and if Silas were to try to go to the bathroom, he'd feel constipated because of it. The plan is to flatten out the granulation by having Silas dilated every week with a larger sized metal rod for 4-8 weeks until it flattens out and then he can have the ileostomy reversed.
Also, the surgeon took a few cell samples from that area and the biopsy results will come in next week (just another type of test to make sure we're not missing anything).
Silas is feeling better now that he can eat again. He had to fast Monday-Wednesday in case he ended up having surgery. He lost almost 2 lbs and was fussy by Wednesday, no surprise there. The medical staff was very accommodating and allowed Jenine to nurse him immediately after he woke from anesthesia. We gave him solids a bit later and he couldn't get enough! He gained his 2 lbs back and is grateful for every meal ;) He's a bit uncomfortable from being dilated while under anesthesia (doc used a very large sized rod that time), as well as some skin irritations around the incision from December, and a new tooth coming in so we're keeping him on pain meds until those things settle down.
We felt covered by God that day. Even though things didn't pan out the way we hoped, we sensed his peace that He was doing what was best for Silas. He gave the surgeon confidence in what he saw, He gave us amazing medical staff before, during, and after the procedure, and we just knew He didn't forget about us. Thank you, thank you, thank you for continually lifting up our son. We are confident his resilience is a result of your prayers.
As of 2/28/13
On Wednesday 2/27 Silas had a colonoscopy procedure in the Operating Room to see how much his colon has healed since December's surgery. If it looked healed, the surgeon would do surgery to reverse the ileostomy right then and there. If it didn't look healed, the surgeon would not operate - and that's what happened. Apparently part of Silas' colon has some "granulation" inside of it - inflammation/blood vessels trying to heal the area after surgery. The granulation grows inside the colon and can act as a blockage and if Silas were to try to go to the bathroom, he'd feel constipated because of it. The plan is to flatten out the granulation by having Silas dilated every week with a larger sized metal rod for 4-8 weeks until it flattens out and then he can have the ileostomy reversed.
Also, the surgeon took a few cell samples from that area and the biopsy results will come in next week (just another type of test to make sure we're not missing anything).
Silas is feeling better now that he can eat again. He had to fast Monday-Wednesday in case he ended up having surgery. He lost almost 2 lbs and was fussy by Wednesday, no surprise there. The medical staff was very accommodating and allowed Jenine to nurse him immediately after he woke from anesthesia. We gave him solids a bit later and he couldn't get enough! He gained his 2 lbs back and is grateful for every meal ;) He's a bit uncomfortable from being dilated while under anesthesia (doc used a very large sized rod that time), as well as some skin irritations around the incision from December, and a new tooth coming in so we're keeping him on pain meds until those things settle down.
We felt covered by God that day. Even though things didn't pan out the way we hoped, we sensed his peace that He was doing what was best for Silas. He gave the surgeon confidence in what he saw, He gave us amazing medical staff before, during, and after the procedure, and we just knew He didn't forget about us. Thank you, thank you, thank you for continually lifting up our son. We are confident his resilience is a result of your prayers.
As of 3/7/13
Apparently the "granulation" material in Silas' large intestine can be removed faster than trying to flatten it out with the dilator rods each week. The doc can "cauterize" it (burn it until it fries and falls off) - a much quicker route to getting that area healed enough so that Silas can have a BM with no constipation after his intestines are reconnected.
Our main concern is the amount of anesthesia Silas has been exposed to in his first year of life. This will be his 10th or so time going under, and studies have shown that excessive amounts of anesthesia in young children could result in negative, long-term effects on the learning and behavioral areas of the brain. We do not want this to happen to Silas and are pleading with God to protect every brain cell from any damage. We always ask the medical team to use the minimum amount of anesthesia necessary for the minimum amount of time, and we pray that request is always honored. Please pray for Silas brain to be protected tomorrow and always.
Thank you!
As of 3/8/13
Thank you for praying for Silas today in his OR visit today. The surgeon didn't end up doing anything to him because the scar tissue just "disappeared"! He said his colon (aka large intestine) looks healed enough to reconnect his intestines - maybe as soon as next week. We're waiting for him to meet with the other surgeons to discuss the situation before we hear a final decision. Silas came in and out of anesthesia just fine besides being sore in his behind from being probed with a scope. Thank you, thank you, thank you for your prayers!!
As of 3/8/13
Thank you for praying for Silas today in his OR visit today. The surgeon didn't end up doing anything to him because the scar tissue just "disappeared"! He said his colon (aka large intestine) looks healed enough to reconnect his intestines - maybe as soon as next week. We're waiting for him to meet with the other surgeons to discuss the situation before we hear a final decision. Silas came in and out of anesthesia just fine besides being sore in his behind from being probed with a scope. Thank you, thank you, thank you for your prayers!!
As of 3/12/13
The only thing holding Silas back from having surgery was the scar tissue inside his large intestine at the previous surgery site. Since that scar tissue miraculously disappeared by the time the Doctor had an exhaustive look inside last week, Silas is now ready and healed correctly to have that final surgery we've all been waiting a year for.
Surgery is schedule for tomorrow, 3/13/13, around 12 or 1pm. We'll stay in the hospital with him for his week-long recovery. He'll be on IV fluids for pain management and nutrition for the first few days, and then we can feed him gradually as his appetite comes around. After that, he will be closely watched to make sure his intestines are functioning correctly and that he is able to have a normal bowel movement.
We would love prayer for:
1.) Surgery - no complications, minimal blood loss, accuracy/precision of the surgeon's hands and mind, minimal time on anesthesia.
2.) Recovery - no infections, successful pain management, correctly functioning intestines, rest for Silas and us, minimal nausea and good appetite for Silas, attentive/caring nurses.
Thank you for every prayer. We know He hears us!
As of 3/13/13
God has blessed us in many ways today:
1.) Silas had a successful surgery and his ileostomy was reversed - yay!!
2.) There were no complications, minimal blood loss, short time on anesthesia, smooth surgery.
3.) Pain is being managed very well so far.
4.) We've had wonderful hospital staff who have been very attentive and caring to all of us.
5.) Silas has been resting mostly peacefully since he woke up from anesthesia, and we feel like we'll be able to get some rest tonight too;)
It's only the first night and anything can happen at any time, but for now we're soaking in the peace and joy that God has covered us with and we'll enjoy every moment of it ;)
Thank you for all your prayers!
As of 3/19/13
The blessings continue to flow. The morning after surgery, Silas had his first "bm" showing that his intestines were already functioning after surgery (often, the intestines shut down for a couple days after surgery), and we were pleasantly surprised that things were already moving. The doctor allowed Jenine to nurse Silas all day and he ate eagerly. He was alert and happy all day on Thursday; he hardly seemed to be in pain. Any fussing was because he was hungry. That night the doctor allowed him to have solid foods since he tolerated the milk so well. By Friday morning, just shy of 2 days post-surgery, the doctor discharged him since he was doing so well. We couldn't believe we were already headed home!
Silas was glad to see his home again and we were glad to see him doing so well. Our only challenge has been the skin on his diaper area. The doctor told us to expect bad rashes since his skin wasn't used to having poop on it, but this rash has been relentless! The reason it's so bad is that he has a bm every 30-60 minutes and his skin is constantly being irritated. He goes so frequently because his large intestine hasn't been used in such a long time that it is "learning" how to work again. After 1-2 months he should go less frequently. Until then, we'll continue the frequent diaper changes, caking on the rash cream, epsom salt baths, and distractions. He's been waking up each night with discomfort so Jay and I have been a little zombie-like the past few days. We traded the annoying bags for the irritating rash, but it's a welcomed change. We're so thankful that our little boy is all reconnected and that it actually works!
Thank you for all your prayers this past year. They truly have been our sustenance through the ups and downs we've faced and it's been a joy to share our praises with you. How awesome it is that we've seen the Lord at work in Silas in many ways this year. We pray that would continue throughout his life in many different ways.
Our God is Healer!
Update:
Things were going pretty smoothly after his 5th surgery in March 2013 except for some major diaper rash problems that never resolved completely until he was potty trained. We welcomed Nolan into our family in September 2013 and life just got really busy with two young kids.
Things started to get rough for Silas in early November 2013 when he started some severe vomiting episodes and was hospitalized every 2-6 weeks until June 2014 for dehydration. The cause was unexplained but he did test positive for small intestinal bacterial overgrowth (SIBO) and was on antibiotics almost constantly because of it. The doctors told us he might have to always be on antibiotics like some of their other patients are. We prayed for a resolution and God led us to siboinfo.com, which completely revolutionized his health. Not only did he not need antibiotics anymore, but the vomiting episodes almost vanished (except for a couple around the holidays when we traveled, and he was later diagnosed with the common behavioral trait of "stool holding" which triggered the vomiting and dehydration again). So, we stopped traveling and he was fine! Although we did take a family trip to Portland, Oregon in December 2014 to visit the SIBO "guru" who's research and education has allowed us to revolutionize Silas' health over the past year.
As an established patient of his, Silas can now be treated by this expert over the long distance thanks to modern technology, which has really been a blessing to our whole family. We spent the year weaning him from a very strict diet the first few months, and gradually reintroducing certain foods over periods of weeks. He handled them fine and we enjoyed having more variety again, and also welcomed more normalcy in our family life as his health stabilized.
As of 3/19/13
The blessings continue to flow. The morning after surgery, Silas had his first "bm" showing that his intestines were already functioning after surgery (often, the intestines shut down for a couple days after surgery), and we were pleasantly surprised that things were already moving. The doctor allowed Jenine to nurse Silas all day and he ate eagerly. He was alert and happy all day on Thursday; he hardly seemed to be in pain. Any fussing was because he was hungry. That night the doctor allowed him to have solid foods since he tolerated the milk so well. By Friday morning, just shy of 2 days post-surgery, the doctor discharged him since he was doing so well. We couldn't believe we were already headed home!
Silas was glad to see his home again and we were glad to see him doing so well. Our only challenge has been the skin on his diaper area. The doctor told us to expect bad rashes since his skin wasn't used to having poop on it, but this rash has been relentless! The reason it's so bad is that he has a bm every 30-60 minutes and his skin is constantly being irritated. He goes so frequently because his large intestine hasn't been used in such a long time that it is "learning" how to work again. After 1-2 months he should go less frequently. Until then, we'll continue the frequent diaper changes, caking on the rash cream, epsom salt baths, and distractions. He's been waking up each night with discomfort so Jay and I have been a little zombie-like the past few days. We traded the annoying bags for the irritating rash, but it's a welcomed change. We're so thankful that our little boy is all reconnected and that it actually works!
Thank you for all your prayers this past year. They truly have been our sustenance through the ups and downs we've faced and it's been a joy to share our praises with you. How awesome it is that we've seen the Lord at work in Silas in many ways this year. We pray that would continue throughout his life in many different ways.
Our God is Healer!
Update:
Things were going pretty smoothly after his 5th surgery in March 2013 except for some major diaper rash problems that never resolved completely until he was potty trained. We welcomed Nolan into our family in September 2013 and life just got really busy with two young kids.
Things started to get rough for Silas in early November 2013 when he started some severe vomiting episodes and was hospitalized every 2-6 weeks until June 2014 for dehydration. The cause was unexplained but he did test positive for small intestinal bacterial overgrowth (SIBO) and was on antibiotics almost constantly because of it. The doctors told us he might have to always be on antibiotics like some of their other patients are. We prayed for a resolution and God led us to siboinfo.com, which completely revolutionized his health. Not only did he not need antibiotics anymore, but the vomiting episodes almost vanished (except for a couple around the holidays when we traveled, and he was later diagnosed with the common behavioral trait of "stool holding" which triggered the vomiting and dehydration again). So, we stopped traveling and he was fine! Although we did take a family trip to Portland, Oregon in December 2014 to visit the SIBO "guru" who's research and education has allowed us to revolutionize Silas' health over the past year.
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| December 2014 Our first family plane ride was fun! |
The Events of 2012
The First Few Weeks
Silas was born in early February 2012. He came 6 weeks before his due date so he was taken to the NICU (Neonatal Intensive Care Unit) for monitoring and continued development. He was big for being early - 5 lbs and seemingly healthy. We thought it wouldn't be long before we could take him home.
During his first week with us we thought he was constipated so he was given enemas and suppositories and he finally "went" after 4 days, but it was only a small amount compared to how much he was eating. His doctors thought the Magnesium in his body (Jenine was on Magnesium to stop labor so Silas got it too) caused this and said it should go away in a week or so. His constipation continued.
By the time he was about 2 weeks old, his belly became very distended and x-rays showed his intestines were very expanded. He was treated for what doctors thought was NEC (Necrotizing Enterocolitis) - a deadly infection of the intestines fairly common among premies. He was put on strong antibiotics and his feedings were discontinued. Finally after a few days his belly looked normal and his blood tests were normal so we began feeding him again. After a week the same thing happened again. When it happened a third time after that the doctor said, "Babies don't get NEC three times. It must be something else," and he ordered more extensive testing which revealed two partial blockages in his colon (also called the large intestine, or large bowel). The blockages were thought to be scar tissue as a result of intestinal tearing from being so distended - evidence of NEC. Surgery was the only way to remedy the problem. His feedings were discontinued for the 3rd time since his belly was so distended and he was fed intravenously.
Surgery #1
We were awakened at 11pm the night before surgery with a call from the NICU that Silas would need a blood transfusion before his surgery in case he should lose too much blood. Excuse me... he needs what? May we speak with his doctor please? After the doctor explained the dangers of entering surgery with low iron and he calmed our qualms about the safety of transfusions, we consented to the transfusion and prayed all night long that he would be okay - and he was. The next day our 5-week-old had surgery to remove the portion of intestine with blockages (mid-March). The surgery was successful but the following day the doctor came to us with less-than-good news. While we were holding our healing infant (who was on Morphine & Tylenol to help manage his extensive pain), the doctor told us that pathology testing on the colon segment that was removed showed that there were missing ganglion cells - an indicator of Hirshsprung's Disease. Basically, not enough colon was removed and the problem wasn't solved because he didn't have NEC after all. He would need another surgery to remove more colon. This is a common surgery called a Pull-Through where the end of his colon (the curvy part) is removed and the middle of it is pulled down to his rectum, creating a straight line instead of a curve.
Surgery #2
After a few days of healing Silas went under surgery for a second time. This surgery didn't go quite as planned. The Pull-Through was successful but his intestinal tissues were so fragile from his previous surgery and from being packed with stool for so long that the surgeon didn't feel comfortable allowing Silas to pass stool through his freshly incised colon because infection risks were high. He decided to give Silas a temporary ileostomy (similar to a colostomy) to redirect his stool out of his small intestine into an external pouch to avoid it passing through the colon while his colon healed from surgery. After 6-8 weeks of healing Silas would have one more surgery to remove/reverse the ileostomy and then he would be back to normal. We were not expecting this and we were very distraught that things turned out this way, however we were thankful that our baby was okay. A special nurse came and trained us in changing the external pouch and caring for the skin around the pouch/bag (which can easily become irritated).
A Pain in the...
Since Silas was not passing stool out of his bottom and it was being rerouted into the external pouch, the muscles in his bottom needed to be stimulated so they wouldn't stiffen up and "forget" to work whenever the intestines could be put back together again. The stimulation procedure is called dilation; something the surgeon could do in his office every two weeks. We were horrified at this first visit: with Silas completely awake and alert, the surgeon gently thrusted a long metal rod up into Silas' bottom multiple times, in and out, in and out. Silas screamed until he turned grey and was covered in sweat. We couldn't believe he had to go through this 2-3 more times until his ileostomy could be reversed. We counted down the weeks and prayed they would fly by quickly - and they did. During this time we enjoyed a little trip to Orange County and visited our family and friends and we even had a lovely baby shower.
Finally, 8 weeks passed and the surgeon felt that Silas' muscles were working properly. He ordered a contrast x-ray (like a video x-ray) to be certain his intestines were healed and ready to reverse the ileostomy. In early May Silas had this x-ray and it showed he was healed and ready for surgery again. We rejoiced that our baby was healed and we could say good-bye to this annoying ileostomy. And then... he got the stomach flu and we were back at the hospital for Mother's Day weekend while he got rehydrated and well enough to come home. Fortunately he was completely well for his surgery date two weeks later.
Surgery #3
In mid-May Silas went in for what we thought would be his final surgery to reverse the ileostomy. Again, things did not go as planned. During the surgery the surgeon flushed Silas' colon with saline to be sure it was clear of obstructions and, sure enough, there was an obstruction. Since he couldn't find exactly where the blockage was, he was unable to remove the blockage and close the ileostomy. Instead, he saw it beneficial to use the other end of the intestine to create a second ostomy for further testing to help locate the blockage. At the end of the day, Silas was left with not one, but two ostomies. We were in disbelief that things turned out like this. Why didn't the contrast x-ray show the blockage? We were angry, disappointed, and in shock. Once again, Silas' extreme pain was semi-managed by Morphine and Tylonol with Codine. He moaned and cried for 24 hours straight since the meds weren't enough, but more drugs would be unsafe so we held him constantly. Silas did't look like Silas. He was very puffy from the IV fluids, stiff from the pain, constantly clenched his fists arched his back, squeezed his eyes closed, his voice was raspy from being intubated (breathing tube during surgery). To make things more uncomfortable his IV's kept falling out so nurses had to poke him repeatedly to find another "good vein", only to have it fall out again. He ended up with one in the center of his forehead. We couldn't believe he was going through this again, and this time for no good reason! His pain levels dropped each day and he finally opened his eyes and stopped moaning on the third day. After nearly a week in the hospital Silas felt well enough to go home, though he wasn't quite himself yet. His appetite was mediocre, he was lethargic, his sleeping patterns were irregular, and it took about 6 weeks before he finally acted like himself again.
A Major Pain in the...
Since Silas still has an ileostomy, we need to continue dilating his rectum and colon to keep the muscles stimulated so they don't atrophy from not being used. We took him to the surgeon's office in early June after Surgery #3 and have been taking him every two weeks since. He cries so intensely and so much at these appointments that he's normally very exhausted the rest of the day, but feels okay the next day.
By the end of June the after-effects of the last surgery were virtually gone. We had our lively, happy boy back and he started sleeping through the night! The Wagner household was a happy place. And then... he got dilated for the second time since surgery and it was more painful than normal. Not only did he continue crying after being dilated, but he woke up throughout the night crying in pain, he had a fever, and a poor appetite. The surgeon wasn't surprised and said he'd be fine in a few days. Well, a fews days went by and Silas wasn't fine. He still wasn't eating well and lost weight - almost 1 pound!
His surgeon was concerned too. He ordered an immediate contrast x-ray (like a video x-ray) to see what was going on inside. The x-ray showed his colon was pinched in like an hour-glass in the region where the Pull-Through surgery (Surgery #2) was. His surgeon was not sure whether this was a result of dilating him too abrasively (he had used a larger rod that day in attempt to expand the muscles more), or the stitches were separating and creating scar tissue - in which case he would need a re-do of Surgery #2 - something we've been praying against. Only time can tell us. We decided to continue dilating him in hopes that it was the first option and his surgeon would use a more precise method of dilation so he wouldn't too aggressive but still do just enough benefit the muscles. He would do it in two days in the operating room with x-ray guidance and Silas under anesthesia. On July 3 Silas had this special dilation procedure and, thankfully, it was uneventful. Silas felt fine afterwards and came home an hour after he woke up. He has felt fine after all six dilations in the doctor's office since.
As of 8/24/12
Every few visits the surgeon uses a slightly larger metal rod in order to gradually expand his colon. Earlier this month the surgeon went to a larger size and Silas has felt okay since then. The plan is to use that size a few more times until his muscles feel more relaxed.
In about 1.5 months from now Silas will get another contrast x-ray to see if there's been any improvement since late June. If so, he will undergo anesthesia again to have a scope sent into his colon to visually observe the area that was obstructed. If the area appears to be made of muscle then there's nothing more to do except remove the ileostomy. If it appears to be scar tissue, he will need to have another Pull-Through surgery, leave the ileostomy, continue dilating him, and attempt to remove the ileostomy after a few months.
Obviously, we're praying for the first option and ask that you would join us. The surgeon is hopeful that is the case since it "feels" like Silas' muscles are responding to the dilation however we won't know for certain until we see the x-ray and have the scope procedure.
None of this will happen for a couple of more months. Until then, we're prayerfully getting him dilated every two weeks (it's tricky because dilating him too much could cause inflammation, but not dilating him enough could allow the muscles to tighten up). We're also enjoying our sweet boy as he's feeling well. He's 15 lbs, learning to sit, roll over, and he loves "talking" to us. He's a joy to us. He's very observant and likes to watch people and his surroundings.
As of 9/20/12:
Thank you for your continued prayers for our li'l trooper. The dilation appointments have continued to go well and Silas has had no adverse reactions.
At this past visit (Tues, 9/18), his surgeon shared that he would like to schedule some testing to see how well Silas has healed and find out if he's ready to have his ileostomy reversed. Silas will have the testing done in 3 weeks when the surgeon is available to do it in the Operating Room. He will also be dilated one more time in his office in 2 weeks to prevent his muscles from stiffening before the testing gets done.
Also, the surgeon is sharing Silas' situation with the other pediatric surgeons on his team at a meeting tomorrow in order to gain feedback from their opinions about his course of treatment. Please pray that if there's something unthought of thus far, that it will be brought to light.
During his first week with us we thought he was constipated so he was given enemas and suppositories and he finally "went" after 4 days, but it was only a small amount compared to how much he was eating. His doctors thought the Magnesium in his body (Jenine was on Magnesium to stop labor so Silas got it too) caused this and said it should go away in a week or so. His constipation continued.
By the time he was about 2 weeks old, his belly became very distended and x-rays showed his intestines were very expanded. He was treated for what doctors thought was NEC (Necrotizing Enterocolitis) - a deadly infection of the intestines fairly common among premies. He was put on strong antibiotics and his feedings were discontinued. Finally after a few days his belly looked normal and his blood tests were normal so we began feeding him again. After a week the same thing happened again. When it happened a third time after that the doctor said, "Babies don't get NEC three times. It must be something else," and he ordered more extensive testing which revealed two partial blockages in his colon (also called the large intestine, or large bowel). The blockages were thought to be scar tissue as a result of intestinal tearing from being so distended - evidence of NEC. Surgery was the only way to remedy the problem. His feedings were discontinued for the 3rd time since his belly was so distended and he was fed intravenously.
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| 3 1/2 weeks old in the NICU |
Surgery #1
We were awakened at 11pm the night before surgery with a call from the NICU that Silas would need a blood transfusion before his surgery in case he should lose too much blood. Excuse me... he needs what? May we speak with his doctor please? After the doctor explained the dangers of entering surgery with low iron and he calmed our qualms about the safety of transfusions, we consented to the transfusion and prayed all night long that he would be okay - and he was. The next day our 5-week-old had surgery to remove the portion of intestine with blockages (mid-March). The surgery was successful but the following day the doctor came to us with less-than-good news. While we were holding our healing infant (who was on Morphine & Tylenol to help manage his extensive pain), the doctor told us that pathology testing on the colon segment that was removed showed that there were missing ganglion cells - an indicator of Hirshsprung's Disease. Basically, not enough colon was removed and the problem wasn't solved because he didn't have NEC after all. He would need another surgery to remove more colon. This is a common surgery called a Pull-Through where the end of his colon (the curvy part) is removed and the middle of it is pulled down to his rectum, creating a straight line instead of a curve.
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| Silas' colon before Surgery #1. The white arrows indicate the two blockages that would be cut out along the two black-ink lines above/below each arrow. The markings on the bottom of the colon is the area where Surgery #2 would occur (the Pull-Through) which connects the black circle above the top arrow to the the rectum. Basically, everything below the top arrow was removed in Surgery #2. |
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| Silas' colon didn't look like either of these, which is why he had ALL the doctors fooled. (Compare with the x-ray above) Not even the surgeon expected this - and he's been practicing for nearly 40 years! He's suspicious that all the enemas altered the look of his colon. |
Surgery #2
After a few days of healing Silas went under surgery for a second time. This surgery didn't go quite as planned. The Pull-Through was successful but his intestinal tissues were so fragile from his previous surgery and from being packed with stool for so long that the surgeon didn't feel comfortable allowing Silas to pass stool through his freshly incised colon because infection risks were high. He decided to give Silas a temporary ileostomy (similar to a colostomy) to redirect his stool out of his small intestine into an external pouch to avoid it passing through the colon while his colon healed from surgery. After 6-8 weeks of healing Silas would have one more surgery to remove/reverse the ileostomy and then he would be back to normal. We were not expecting this and we were very distraught that things turned out this way, however we were thankful that our baby was okay. A special nurse came and trained us in changing the external pouch and caring for the skin around the pouch/bag (which can easily become irritated).
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| Silas' "tree" of IV pumps: Morphine, 2 antibiotics, TPN (fluids + vitamins, electrolytes), lipids (fats since he wasn't allowed to eat for the past 3 weeks). |
Home at Last
After a week of healing in the hospital, we finally took Silas home! Silas was 7 weeks old (we took him home one week after his due date of 3/19/12) and we were THRILLED to finally be out of the hospital with our little boy all to ourselves. Time at home was sweet as we bonded with our little boy and watched him grow each day. Changing the ileostomy bag each day was quite a project. It took about 30 minutes to gently peel off the old bag, clean his skin, prep the skin, and apply the new bag. There were days when it leaked and we had to change it multiple times in one day - once we changed it 5 times in 24 hours! Silas cried/wailed in discomfort during these little projects so we soothed him with a sweetened pacifier (We're more efficient now. We change the bag in 10 minutes, no sweetened pacifier needed. Just toys and silly songs from mom & dad to keep him distracted. The bag rarely leaks anymore.) |
| 3/29/12 gestational age: 10 days First time in his own bed at home! |
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| Silas' ileostomy. He's 2 months old here (gestational age: 2 weeks) We change the plastic bag every 24 hours. Breast-fed babies have golden yellow stool. His is liquid because it hasn't gone through the colon, which absorbs water. |
A Pain in the...
Since Silas was not passing stool out of his bottom and it was being rerouted into the external pouch, the muscles in his bottom needed to be stimulated so they wouldn't stiffen up and "forget" to work whenever the intestines could be put back together again. The stimulation procedure is called dilation; something the surgeon could do in his office every two weeks. We were horrified at this first visit: with Silas completely awake and alert, the surgeon gently thrusted a long metal rod up into Silas' bottom multiple times, in and out, in and out. Silas screamed until he turned grey and was covered in sweat. We couldn't believe he had to go through this 2-3 more times until his ileostomy could be reversed. We counted down the weeks and prayed they would fly by quickly - and they did. During this time we enjoyed a little trip to Orange County and visited our family and friends and we even had a lovely baby shower.
Finally, 8 weeks passed and the surgeon felt that Silas' muscles were working properly. He ordered a contrast x-ray (like a video x-ray) to be certain his intestines were healed and ready to reverse the ileostomy. In early May Silas had this x-ray and it showed he was healed and ready for surgery again. We rejoiced that our baby was healed and we could say good-bye to this annoying ileostomy. And then... he got the stomach flu and we were back at the hospital for Mother's Day weekend while he got rehydrated and well enough to come home. Fortunately he was completely well for his surgery date two weeks later.
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| 5/23/12 3.5 months old (gestational age: 2 months old) All prepped for Surgery #3 and not happy about the 24 hour fast |
In mid-May Silas went in for what we thought would be his final surgery to reverse the ileostomy. Again, things did not go as planned. During the surgery the surgeon flushed Silas' colon with saline to be sure it was clear of obstructions and, sure enough, there was an obstruction. Since he couldn't find exactly where the blockage was, he was unable to remove the blockage and close the ileostomy. Instead, he saw it beneficial to use the other end of the intestine to create a second ostomy for further testing to help locate the blockage. At the end of the day, Silas was left with not one, but two ostomies. We were in disbelief that things turned out like this. Why didn't the contrast x-ray show the blockage? We were angry, disappointed, and in shock. Once again, Silas' extreme pain was semi-managed by Morphine and Tylonol with Codine. He moaned and cried for 24 hours straight since the meds weren't enough, but more drugs would be unsafe so we held him constantly. Silas did't look like Silas. He was very puffy from the IV fluids, stiff from the pain, constantly clenched his fists arched his back, squeezed his eyes closed, his voice was raspy from being intubated (breathing tube during surgery). To make things more uncomfortable his IV's kept falling out so nurses had to poke him repeatedly to find another "good vein", only to have it fall out again. He ended up with one in the center of his forehead. We couldn't believe he was going through this again, and this time for no good reason! His pain levels dropped each day and he finally opened his eyes and stopped moaning on the third day. After nearly a week in the hospital Silas felt well enough to go home, though he wasn't quite himself yet. His appetite was mediocre, he was lethargic, his sleeping patterns were irregular, and it took about 6 weeks before he finally acted like himself again.
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| 3 1/2 months old (gestational age: 2 months old) 5/25/12. 48 hours after Surgery #3. Forehead IV administered hydration fluids, morphine, and antibiotics to fight possible infection. Looking less puffy but he's exhausted from a long day of continual interruptions - poking, blood pressure every 2 hours, doctors checking him. |
Since Silas still has an ileostomy, we need to continue dilating his rectum and colon to keep the muscles stimulated so they don't atrophy from not being used. We took him to the surgeon's office in early June after Surgery #3 and have been taking him every two weeks since. He cries so intensely and so much at these appointments that he's normally very exhausted the rest of the day, but feels okay the next day.
By the end of June the after-effects of the last surgery were virtually gone. We had our lively, happy boy back and he started sleeping through the night! The Wagner household was a happy place. And then... he got dilated for the second time since surgery and it was more painful than normal. Not only did he continue crying after being dilated, but he woke up throughout the night crying in pain, he had a fever, and a poor appetite. The surgeon wasn't surprised and said he'd be fine in a few days. Well, a fews days went by and Silas wasn't fine. He still wasn't eating well and lost weight - almost 1 pound!
His surgeon was concerned too. He ordered an immediate contrast x-ray (like a video x-ray) to see what was going on inside. The x-ray showed his colon was pinched in like an hour-glass in the region where the Pull-Through surgery (Surgery #2) was. His surgeon was not sure whether this was a result of dilating him too abrasively (he had used a larger rod that day in attempt to expand the muscles more), or the stitches were separating and creating scar tissue - in which case he would need a re-do of Surgery #2 - something we've been praying against. Only time can tell us. We decided to continue dilating him in hopes that it was the first option and his surgeon would use a more precise method of dilation so he wouldn't too aggressive but still do just enough benefit the muscles. He would do it in two days in the operating room with x-ray guidance and Silas under anesthesia. On July 3 Silas had this special dilation procedure and, thankfully, it was uneventful. Silas felt fine afterwards and came home an hour after he woke up. He has felt fine after all six dilations in the doctor's office since.
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| 7/3/12 Little boy in a big bed. Silas coming off anesthesia after being dilated in the operating room at Children's Hospital. |
Every few visits the surgeon uses a slightly larger metal rod in order to gradually expand his colon. Earlier this month the surgeon went to a larger size and Silas has felt okay since then. The plan is to use that size a few more times until his muscles feel more relaxed.
In about 1.5 months from now Silas will get another contrast x-ray to see if there's been any improvement since late June. If so, he will undergo anesthesia again to have a scope sent into his colon to visually observe the area that was obstructed. If the area appears to be made of muscle then there's nothing more to do except remove the ileostomy. If it appears to be scar tissue, he will need to have another Pull-Through surgery, leave the ileostomy, continue dilating him, and attempt to remove the ileostomy after a few months.
Obviously, we're praying for the first option and ask that you would join us. The surgeon is hopeful that is the case since it "feels" like Silas' muscles are responding to the dilation however we won't know for certain until we see the x-ray and have the scope procedure.
None of this will happen for a couple of more months. Until then, we're prayerfully getting him dilated every two weeks (it's tricky because dilating him too much could cause inflammation, but not dilating him enough could allow the muscles to tighten up). We're also enjoying our sweet boy as he's feeling well. He's 15 lbs, learning to sit, roll over, and he loves "talking" to us. He's a joy to us. He's very observant and likes to watch people and his surroundings.
As of 9/20/12:
Thank you for your continued prayers for our li'l trooper. The dilation appointments have continued to go well and Silas has had no adverse reactions.
At this past visit (Tues, 9/18), his surgeon shared that he would like to schedule some testing to see how well Silas has healed and find out if he's ready to have his ileostomy reversed. Silas will have the testing done in 3 weeks when the surgeon is available to do it in the Operating Room. He will also be dilated one more time in his office in 2 weeks to prevent his muscles from stiffening before the testing gets done.
Also, the surgeon is sharing Silas' situation with the other pediatric surgeons on his team at a meeting tomorrow in order to gain feedback from their opinions about his course of treatment. Please pray that if there's something unthought of thus far, that it will be brought to light.
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| He loves to play outside! 9/15/12 7.5 months old
As of 10/7/12
Thank you for your continued prayers. This has been a long road for our family but our Healer and Comforter has been with us all along.
Silas' surgeon shared about Silas with his colleagues a couple weeks ago and they all believe we're on the best possible route for his situation and that we should continue on as planned. Thank you for praying about that. This coming Wednesday, 10/10/12, Silas will go under anesthesia for the 5th time since birth. Though he will not have an operation, the surgeon will perform a procedure on him in the Operating Room in order to determine how his colon has healed from the previous surgeries (the technical name for this procedure is sigmoidoscopy). First, the surgeon will inject contrast dye into Silas' 2nd ostomy and watch it travel through his colon under video Xray. We want to see the colon expand and contract as it pushes the dye completely through the entire colon with no obstructions or narrowing.
Second, the surgeon will send a scope into Silas' colon and closely observe the area that was previously blocked at Surgery #3 (which was why the ileostomy was not reversed at that time as was planned). We want him to see muscle tissue, not scar tissue. If it's scar tissue then Surgery #2 will have to be re-done and the ileostomy will remain for another few months after that.
Prayers:
1.) That Silas will respond well to the anesthesia and come out of it with no problems.
2.) That the surgeon will clearly see everything he needs to see in order to make a proper judgement for Silas' course of treatment. *When Silas had this same procedure before Surgery #3, the results incorrectly showed that he was healed and ready to have the ileostomy reversed. This caused an unsuccessful and unnecessary surgery, followed by a long recovery period. Please pray against incorrect results this time!
3.) That Silas won't need a re-do of his Pull-Through surgery (Surgery #2). Pray that removal of his ileostomy is all that's needed. As of 10/10/12 The X-ray and scope procedure in the Operating Room today went perfectly. Silas did great with the anesthesia and woke up hungry! We got what we asked for: his colon pushed the contrast dye completely through with no blockages and the surgeon saw muscle tissue - not scarring - which means Silas will not need a re-do of Surgery #2! All good things, glory to God. Thank you for praying. The surgeon will share today's results with his colleagues and then we'll make plans for removal of his ileostomy. His only concern was that he may have caused tearing today when he used the scope to look inside because of it's large size. We're praying against that because tearing means scar tissue, and scar tissue means blockages; however any tearing was probably minimal so it's not a major concern at this point - especially because Silas is feeling so well right now which is a good sign. Silas will be dilated 1-2 more times in the surgeon's office over the next few weeks to ensure his muscles stay respondent until surgery and to minimize any scarring that may result from today's procedure.
As of 11/28/12 This post is backdated since we haven't posted in a while, but here's the most important info to get you up to speed: After the surgeon shared the results of October's xray and scope procedure with his colleagues, a new concern arose: an area of Silas' lower colon (large intestine) that looks substantially thinner than the rest of the colon. We decided to do more testing in order to avoid another unsuccessful surgery. First test: Three weeks ago we took Silas to Children's Hospital's Imaging department for a very un-fun procedure. He was awake for the entire 45-minute probing of his colon. He cried nearly the whole time while we held him down on the table. The results were not convincing enough to show that things are functioning properly, so the doc called for another test. Second test: Today, with Silas under anesthesia in the Gastrointestinal Lab area of the Operating Room, the GI specialist put a scope through his rectum and looked at the thinned area of the colon from a different angle. He also extracted cell samples from that area to make sure the cells are still alive. Fortunately, his colon seems to be in good health but we won't know for sure until the lab results come in later this week. We'll let you know what we find out. Thank you for your prayers! 
11/15/12
9.5 months old
Ugh. Sorry to sound depressed but honestly, we are. Once again, we have inconclusive results. The biopsy on Silas' colon last week in the Operating Room showed a lack of the necessary ganglion cells that move waste out of the body. Maybe it was just an "unlucky" spot for a biopsy - we hope. If there's a large amount of these missing cells then Silas would not be able to have a normal bowel movement if his ileostomy (bag) were reversed. However, just a few missing cells is okay and he would function just fine without them - we pray this is the case. Tomorrow Silas will have a 5th test - another biopsy in a different area of his colon to determine what kind of surgery Silas will have next week. Yes, surgery next Wednesday to be exact. What kind of surgery? We're not sure yet. He will either have his ileostomy reversed (we PRAY), or he will have his 2nd surgery re-done (the "Pull-Through") to remove the area of colon with no ganglion cells and leave the ileostomy on while the colon heals (we pray AGAINST in the name of Jesus!). Please join us in praying that God would guide the surgeon to the "right" spot tomorrow when he extracts a sample of Silas' colon tissue. Pray that pathology will find those necessary ganglion cells in the tissue sample so that Silas can have his ileostomy reversed next Wednesday and all this traumatic doctor stuff will be over for him. Thank you! P.S: Silas is still recovering from a violent stomach flu he got on Thanksgiving. His appetite hasn't been good and he's lost some weight. Please pray he will get his strength back before surgery next week because surgery will take A LOT out of him.
As of 12/11/12
Well, the journey we've been on (and thought was almost over), just made an unexpected and unfortunate left turn. The secondary biopsy results from last week showed there are no live ganglion cells in a small area of Silas' colon. Those cells were alive, but apparently Silas' intestine had a small infection after a previous surgery which cut off blood supply to the cells which caused them to die (none of us knew about this happening). Those cells are necessary for pushing stool out of the body; without them Silas would be permanently constipated like he was when he was born. For the first time in our surgeon's 30+ year career, he will have to re-do the Pull-Through surgery that he did on Silas when he was just 6 weeks old (Surgery #2) in order to remove the area of colon with no ganglion cells. This will require that Silas keep his ileostomy for about two more months while his colon heals from another surgery. Of course this is not at all what we expected or hoped for Silas so we cling closer to Christ as we walk through this with our little guy. While this news is a delay to our plans, it's also progress in really getting Silas where he needs to be before his ileostomy can finally be reversed. Main prayers: 1.) Smooth surgery with no complications, minimal blood loss, no infections. 2.) Successful pain management with minimal side affects. 3.) That Silas' appetite would come back soon after surgery and that he wouldn't feel nauseous. Silas will have surgery this Wednesday, 12/12/12 at 12:00pm at Children's Hospital. At 12:00am Wednesday, he will stop eating food and be on a Pedialyte-only diet until after surgery. He will also recover at Childrens while being monitored and on IV's for about a week or until he is ready to eat again. We will stay with him in his hospital room. We welcome healthy visitors at any time, so feel free to drop by if you'd like to visit - please contact us via email or cell phone if you plan to come.
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As of 12/13/12
Thank you for praying for Silas' surgery and recovery.
The surgery went well, though it took nearly twice as long as we expected.
In order for the surgeon to get to the area of colon he needed to work on, he had to pull out Silas' entire small intestine since it was in the way. In doing so, he discovered an adhesion (a sticky, band-like substance that binds two coils of intestine together from their exterior walls) on his small intestine. If the adhesion were left there, it could grow and cause the small intestine to develop a blockage later in life so the surgeon decided to remove it. This adhesion was the result one of Silas' previous surgeries because adhesions occur from intestines being handled during surgery. They don't "like" being touched and develop these sticky bands as a reaction to being handled. Praise God this was discovered yesterday. We pray that no more adhesions develop as a result of yesterday's handling of intestine.
The other thing the surgeon noticed was that Silas' ileostomy was too small and he had grown out of it. The surgeon believes that the ileostomy has been acting like a partial blockage because of it's small size. Therefore, he made the ileostomy larger so that Silas' stool would be able to come out more easily until he can finally get the ileostomy reversed in a couple months from now after he's done healing. This discovery explains some things we've been noticing: Silas' growth has slowed over the past few months and he hasn't gained much weight. His appetite hasn't been great and he's been fussy, waking in pain at night (we thought it was teething). He's also had what we thought was the flu 5 times in just 6 weeks. The surgeon believes these problems may be the result of the ileostomy constricting the stool output; stool may have become backed up in his small intestine and caused pain, vomiting, reduced appetite and therefore, reduced growth. Whew - aren't we glad he had surgery yesterday and this was discovered! We hope/expect/pray that the larger ileostomy will relieve these problems and allow his appetite and growth to improve.
These two discoveries were helpful for Silas, but frustrating also because they are evidence of "complication on top of complication" - meaning, they wouldn't even exist if Silas hadn't been through so much. What started out as something small and relatively simple at birth keeps growing in complexity and other issues develop as more time and more medical interventions are necessary. Please pray that God would gather up all these "extras" in Silas' body, heal them, and call it finished for good.
Pain management has been much improved from past surgeries. We tried a different form and it's allowing Silas longer stretches of comfort, rest, and healing - all glory to God. He's not nauseous at this point and we pray that would continue. He's not allowed to eat for another day or so, so he's on IV nutrition instead. Until he is allowed to eat again, Jenine is pumping breast-milk to be donated to a milk bank for premies in hospitals. Being 24 hours into this experience, we expect a good, more comfortable recovery for Silas and hope he transitions off of pain management and onto a more structured routine faster than previous times. He has a more involved surgery to recover from which may have different variables, but it should be a smoother transition as far as pain and nutrition goes.
Silas had minimal blood loss during surgery and he isn't showing any signs of infection at this point - thank the Lord.
The medical staff has been very attentive, gentle, and caring for Silas and we feel blessed.
Once again, we appreciate your thoughts and prayers for our little guy and our family. Thank you.
Once again, we appreciate your thoughts and prayers for our little guy and our family. Thank you.
As of 12/18/12
Here is a quick update on our little trooper -
The first three days after Wednesday's surgery went as expected. Silas couldn't move much, cried a lot when we moved him and slept a ton. Due to the extra work in the OR, he took a couple extra days to start moving around and feeling well enough to try to eat. On Saturday the Dr had allowed us to feed him, so Jenine cautiously began nursing when he had a desire. On Sunday, he ate more and began smiling a little at silly faces and funny noises. He also made a game out of pulling on his blanket, bitting it and yanking it out of his mouth. It was pretty fun to watch, as an extremely simple thing brought a good amount of fun and happiness.
Monday came new set of challenges. Si threw up what seemed to be everything he had eaten the last 24 hours over multiple episodes. The Dr reacted in a respectable way and put a stop-feed on him to prep him for X-Rays Tuesday to find out what was going on. We weren't shocked at the possibility of X-Rays and what they could mean, but sure weren't happy about the situation.
Tuesday, radiology took a standard X-Ray as well as a gastro-intestinal X-Ray and both came back in favor of healthy and correct function and appearance of his small intestine, leaving the vomiting unexplained. The Dr allowed feeds again and Si has drank or eaten small amounts and kept it all in, for now. Praise God on a gut that seems to work at the moment. Jenine continues to work with him regularly and we just wait to see how he does.
We'll offer and hopefully build up a normal eating routine again and be discharged soon. Obviously this is still very much an active story, and we'll update as we can.
Please pray that Silas would be able to keep down his food and for mom and dad to get rest. We pray against any possible complications from the extra work done in surgery and that we can move on to healing his bowel again so we can work toward getting the ileostomy reversed in a timely manner.
Thank you!!!
The first three days after Wednesday's surgery went as expected. Silas couldn't move much, cried a lot when we moved him and slept a ton. Due to the extra work in the OR, he took a couple extra days to start moving around and feeling well enough to try to eat. On Saturday the Dr had allowed us to feed him, so Jenine cautiously began nursing when he had a desire. On Sunday, he ate more and began smiling a little at silly faces and funny noises. He also made a game out of pulling on his blanket, bitting it and yanking it out of his mouth. It was pretty fun to watch, as an extremely simple thing brought a good amount of fun and happiness.
Monday came new set of challenges. Si threw up what seemed to be everything he had eaten the last 24 hours over multiple episodes. The Dr reacted in a respectable way and put a stop-feed on him to prep him for X-Rays Tuesday to find out what was going on. We weren't shocked at the possibility of X-Rays and what they could mean, but sure weren't happy about the situation.
Tuesday, radiology took a standard X-Ray as well as a gastro-intestinal X-Ray and both came back in favor of healthy and correct function and appearance of his small intestine, leaving the vomiting unexplained. The Dr allowed feeds again and Si has drank or eaten small amounts and kept it all in, for now. Praise God on a gut that seems to work at the moment. Jenine continues to work with him regularly and we just wait to see how he does.
We'll offer and hopefully build up a normal eating routine again and be discharged soon. Obviously this is still very much an active story, and we'll update as we can.
Please pray that Silas would be able to keep down his food and for mom and dad to get rest. We pray against any possible complications from the extra work done in surgery and that we can move on to healing his bowel again so we can work toward getting the ileostomy reversed in a timely manner.
Thank you!!!
As of 12/24/12
We've been home since Thursday 12/20 evening. Here's how we got here...
The Dr allowed Silas to eat again on Tuesday after the X-Rays came back with favorable results. Jenine fed him on a gradually increasing schedule and was able to build up to full feeds without any set-backs and he kept it all to himself. He ate well on Wednesday and began playing in the evening. The doctor discharged him on Thursday morning and we left without hesitation ;)
All three of us are happy to be home - especially Silas. Since the moment we got here he's been all smiles and giggles, playing with his toys as if nothing ever happened. This recovery is going way smoother than the last one. He has a great appetite, he's sleeping well and therefore we are too. Thank you all for praying for his surgery, recovery and healing - God has been answering prayers and we're grateful.
We're enjoying our first quiet Christmas at home as a family with Jays folks.
The Dr allowed Silas to eat again on Tuesday after the X-Rays came back with favorable results. Jenine fed him on a gradually increasing schedule and was able to build up to full feeds without any set-backs and he kept it all to himself. He ate well on Wednesday and began playing in the evening. The doctor discharged him on Thursday morning and we left without hesitation ;)
All three of us are happy to be home - especially Silas. Since the moment we got here he's been all smiles and giggles, playing with his toys as if nothing ever happened. This recovery is going way smoother than the last one. He has a great appetite, he's sleeping well and therefore we are too. Thank you all for praying for his surgery, recovery and healing - God has been answering prayers and we're grateful.
We're enjoying our first quiet Christmas at home as a family with Jays folks.
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