One Year Later...

2009 was quite a year for us. It was filled with both blessings and challenges. Jacob has just turned three and James is five. With one or two exceptions (which we'll explain in a moment), Jacob recovered well from the two major surgeries he had in 2008. He has gained 10 pounds, grown about 8 inches, walks quite well and can definitely carry on a conversation with most anyone or anything. He and his brother get along just like you'd expect from two siblings that are close in age - they love each other one minute and the next minute they are doing a little "pushin' and shovin'".

James started Kindergarten this year and so far has done well. We are excited to see him learn how to read, count to 100 (and beyond), tell us that recess is his favorite class and even go on Field Trips. James did give us a bit of a scare this year. In August, he had two seizures that were exactly a week apart. He has since been put on epilepsy medication and, thankfully, has not had anymore. However, he frequently tells us that his eyes are bothering him. He has had the usual battery of tests - EKG, EEG, MRI, CAT scans and blood work, but we still do not know exactly what caused the seizures or the eye sensitivity.

And now back to Jacob. You may recall from our last post (almost a year ago today), that there were a couple of lingering issues from the 2008 surgeries. Most notably, his pelvic plate is/has eroded into his urethra, which has necessitated us keeping the SP tube (catheter) and urine bag in place since that time. This has proven to be one of our bigger challenges during the past year. At one time, over the summer, while playing on a makeshift water slide, the SP tube came out, sending us immediately to the Emergency Room (the SP tube, as you may recall, is a catheter that comes out of his bladder and empties into a bag that we attach to the side of his leg. It is his only means of urinating, so when it came out, it was definitely "go time." Thankfully, by God's grace and mercy, the ER staff in Chattanooga was able to get a temporary tube in and we later (next day) got it replaced by a Ped Urologist. There was also one other time where it nearly came out, but we, again by the grace of God, were able to inflate the balloon that holds the catheter in place and get an appointment shortly thereafter to have the tube changed out again (we generally had to change it out every 1-2 months, unless something came up).

In addition, we continued to have problems with his stoma (colostomy). There was talk of doing a revision early last year, but the doctors at John Hopkins decided that it was not yet necessary. As the year went along, however, the stoma seems to have grown tighter, making it a challenge for Jacob to pass stool. He would often wake up during the night with what appeared to be pain related to the the catheter, but we later realized that it also had to do with the tightness in his stoma. To help relieve this, we had to dilate the stoma on a daily basis. This was very difficult for us as parents (dilating involves inserting a metal rod into the stoma for the purpose of stretching it out). Once again, by God's grace, we were able to "Convince" our insurance company to cover a home health nurse for us. Ms. Elsea is her name and she has been a tremendous blessing to us. She is a good nurse and has helped remove much of the stress that we experienced in having to dilate Jacob (and help maintain his SP tube). She is also a wonderful Christian lady and we are blessed to have had her in our lives these past few months.

So after that brief update (by Arrington standards), you may be asking, "OK, so what's happening right now?" Well, we have returned to Johns Hopkins for another surgery. The purpose of this one is to try and "fix" the things mentioned above. The surgery is scheduled for today, 1/13/10, at around noon. There will be three main surgeons involved - Urologist, Orthopedic and General Pediatric. The Orthopedic team plans to first remove the pelvic plate that has apparently eroded into his urethra. Urology will then reconstruct his urethra (basically they will have to create another one for him, hopefully using his own skin). The Gen Pediatric team will then evaluate his stoma and revise as needed.

We (minus James) arrived in Baltimore on Monday night (the 11th). The Lord got us here safely in less than 12 hours (by car), which for us is probably a record. Jacob was admitted yesterday at around noon for bowel "prep." Let's just say that this was a pretty challenging time for everyone, especially Jacob. However, as we write this now, he is calm and sleeping well.

We are so thankful for everyone who prays for us, even when the updates to this blog disappeared for the past year. For those who prefer to pray for specific items, we have listed these below:

1. Please pray that Jacob is physically ready for the surgery later today (i.e. that he stays healthy between now and then and that all of the "prep" will work as it should).
2. This leads to a praise that we must mention - the Lord has truly been gracious to all of us this past fall, especially Jacob, when it comes to our health. With James in school and a fairly high rate of flu cases in our area, we have made it this far without many problems. James has been sick a couple of times, but each time tested negative for the flu. Courtney and Bryan have also dealt with some sinus and throat issues, too, but in each case, the Lord has protected Jacob.
3. Please pray for the Anesthesiology team that will be working with Jacob.
4. Please pray for the three surgeons who will be operating - Dr. Gearhart, Dr. Sponseller and Dr. Lau.
5. Please pray for the nurses and other hospital staff who will attend to Jacob before, during and after the surgeries. We must point out that it did feel like a homecoming of sorts today and yesterday, as we have been able to reconnect with many of the nurses (Kiki, Allie and Ashley, just to name a few) who took care of Jacob in 2008.
6. Please pray that this surgery will allow him to "pee down below" and no longer require the SP tube and urine bag. Jacob loves to "whestle (wrestle)" and we, as parents, will feel much better about him doing this if there is not a catheter that can come loose.
7. Please pray that his stoma can be sufficiently revised to where we no longer have to dilate and he no longer experiences the same level of discomfort (especially at night).
8. Please pray that the surgery itself will be a success - this may go without saying, but in this case, there is certainly still a chance that the pelvic plate might erode back into the uretha again.
9. Please pray that Jacob will have enough skin and tissue in order to create a new urethra and allow for a good "closure" to the wound.
10. Please pray that the doctor's will be able repair some of the scars left over from the previous surgeries.
11. Please pray that Jacob will heal quickly and not require a long hospital stay. Our best estimate at this point is around 3-4 weeks.
12. Please pray for James - he stayed back in Chattanooga with Gran (Courtney's mom) so he can go to school. Please pray that God will give Gran the extra strength she needs to attend to and care for an active five year old. We are so very thankful for the major sacrificies she has (and continues) to make for our family. Pray that God will bless her richly for these sacrifices.
13. Also for James - we have an appointment for him on the 26th with an eye doctor here at Hopkins (and may schedule one later with a seizure doc). Please pray that we might be able to get some additional insight (and possible solutions) to the eye sensitivity issues.
14. Please pray for Daddy BA as he plans to travel back to Chattanooga this weekend, spend next week with James, then return with James the following weekend for his appointments. Please pray for safety in travel, good weather and no car issues.
15. Please pray for Courtney as she will once again be here with Jacob, at the hospital, the majority of the time. Please pray that she will be able to get some rest and that the Lord will grant her the strength she needs.

We are once again so very humbled and most thankful for all the Lord has done for us through you - His people.

May God Bless you richly and may all glory, praise and honor be unto the One whose mercies are new and fresh every morning.

Mommy and Daddy

PS - we will try to give regular updates over the next few weeks, along with a few photos.

Back Home for Now and What's to Come

After a good visit with family and friends in Cockeysville (MD), Salem (VA), Knoxville (TN) as well as the aforementioned doctors appointments, we arrived safely back in Chattanooga this past Thursday. We met with Dr. Gearhart (Urology) this past Tuesday to discuss the SP tube and the issues Jacob has been having with his urethra (some slight bleeding). Dr. G thinks that the pelvic plate that was inserted during the bladder closure surgery this past fall may be impeding on the urethral tube and perhaps causing the bleeding and some of the discomfort he seems to have in that area.

He advised that he will perform another scope on the same day that we have the stoma revision with Dr. Lau. Initially, we thought this would be on Feb 3rd, but in order to schedule both doctors on the same day, we moved the date to the 10th. The purpose of the scope is to see if the plate is indeed causing some problems and also check to see why he still is unable to pee from that opening. If the plate is causing problems, it will need to be removed. Since the plate is part of the orthopedic side of things, Dr. Sponseller will be the one to remove it, if necessary.

We should point out that the plate, which is made out of titanium, was put in to help stabilize his pelvic bones. We found out that it does normally need to come out at some point, although they usually like for it to stay in a little longer. In Jacob's case, they feel like his pelvic bones have healed well and that should it need to come out, his pelvic bones should remain fairly stable with only a slight bit of movement possible.

Dr. Sponseller will not, however, remove it during this upcoming surgery, rather, it will likely be in a couple of months. This will allow him time to heal from the stoma revision surgery. Also, we did find out that the expected recovery time for the stoma revision is 5-6 days. Please pray that this will hold true as we certainly do not wish to have another extended stay at the hospital, especially knowing that we may need to return again in a couple of months. Also, winter travel between Chattanooga and Baltimore can be tricky at times as well.

Dr. Gearhart was very impressed with how well Jacob's mobility has improved. Jacob tooled around the hallways near his office with his little walker and Dr. G loved it. It is truly an example of how God has blessed us and how He has answered the faithful prayers that so many have offered up on our behalf. In addition, as of the time we are writing this, Jacob has now taken about ten steps on his own and seems to be growing stronger each day. We have much to be thankful for at this time.

In closing, we ask that you pray for us as we prepare for the next round in "Jacob's Journey". We will probably leave for Baltimore on Feb 7th or 8th as there is a rather extensive "bowel prep" that must take place prior to the stoma revision. Please pray for the doctors who will be involved and that the outcome will bring glory to the Lord of all creation. Please pray for James as he will likely stay here in Chattanooga with Gran so he won't miss any school. I (Daddy BA) will likely come back to Chattanooga shortly after the surgery to come back to work and help with James. We'll try to provide another update once we begin our trip to Baltimore, unless something changes between now and then.

God of all gods, King of all kings, to whom all praise, glory and honor is due,

The Arringtons

The latest news...

Well, as many can tell, we are not the best "bloggers" in the world and we do apologize for the lack of recent updates. However, we do want to give everyone an update on how everything is going. Jacob has made very good progress from a mobility standpoint. He crawls well and has begun climbing again (something he was pretty good at prior to the last surgeries. He walks very well with the help of his little walker. He has stood and balanced by himself a few times, but hasn't quite taken any unassisted steps, yet. He seems to be close, though. We are very grateful for all the Lord has done for him. Thanks to everyone who continues to pray for Jacob and our entire family.

His stoma, however, continues to be an area of concern. Just this past week, we drove up to Baltimore, where we are currently, to have the General Ped Surgeon check it out. We have been dilating his stoma regularly, but we have been praying for another solution. It has been torture on both he and us having to do this and also it has become more difficult as he has become stronger. Thankfully, the doctor here feels like a stoma revision is in order and has scheduled this for Feb 3. We have one additional doctor visit this coming Tuesday, Jan 20, then we plan to return home until a few days prior to the next surgery. The doctor feels like the revision to the stoma will help with his gas and general "plumbing" issues he has been having. He is not 100% sure what this revision will like, but it may involve moving the stoma slightly below where it is currently. He feels like the recovery time in the hospital will not be more than about 5-6 days for this surgery. Please pray that the surgery will be a success and that the recovery time will be no more than expected.

Oh, and we should mention that the doctor visit this week will be with Dr. G regarding the Urology side of things. Jacob is still using the SP tube and bag, and we feel like we will likely continue. However, he has had some "scant" bleeding (kind of like spotting) from his urethra, and so we don't know if this will be a concern or not. We will try to post some more details on this later this coming week.

We once again thank you for your prayers, despite our less that stellar efforts to keep everyone informed.

God is faithful and will accomplish more than we can every ask or imagine.

The Arringtons

Progress, Prayer and Praise

I'm sure that if Jacob could really put together full sentences at this point in his young life, he would certainly say, "It sure is great to be home." I know that Courtney and I thank the Lord daily that we are all back home together again. And while Jacob isn't busting out long sentences, we have seen his vocabulary grow a little each day. He especially enjoys repeating what his older brother says, and James is seldom ever at a loss for words.

Jacob is making good progress all the way around, but there are still some challenges. He's down to only three medicines a day, one of which is only required once per day. His right side pin site has healed well and does not require us to "burn" it any longer. With the help of a Physical Therapist and lots of extra practice, Jacob is now able to sit up pretty well on his own. He has also begun walking again with the help of a mini-walker. He seems to have a very strong desire to walk, motivated in large part by his older brother James. His legs are still a little bit week and his balance is still off, but he improves a little with each day. I almost can't wait for the day I come home from work and he is able to walk or crawl over to the front door to greet me. That will be a great day.

His SP tube and urine bag have pretty much worked as they are supposed to. We had a slight scare one day last week when it appeared that the tube had become clogged. We are thankful that it was actually the bag that was having the problem, and once we removed it, everything began flowing again. We still have to "probe" his stoma on a daily basis, however, we are thankful that the Lord has not only allowed this process to go smoother (i.e. it goes in easier and is slightly less irritating), but has also led several nurses from our church (and a home health nurse who comes once a week) to help relieve us from having to do this all by ourselves. These ladies have all been a blessing to us and we thank God for giving them the heart, desire and skills to help out us out. We have also been blessed to have several families from our church bring us dinner a few times a week. I would be remiss, though, if I didn't thank everyone who has and continues to pray for us each and every day. The Lord hears our prayers and uses them to His glory.

There are several things, though, for which we ask that you pray.

1. Jacob still has trouble sleeping at night and we can't always tell what might be bothering him. We think that often times it may just be gas, but we know that it could be a number of things. Courtney and I are pretty tired, but the Lord continues to be merciful to us and grants us strength, even when we're not sure if we can get out of bed in the morning.

2. Courtney just had surgery on a "bad" tooth today that had been causing her pain for the past few months. The Lord was gracious in that the tooth did not bother her much in Baltimore, but shortly after we arrived back in Chattanooga, the pain kicked in again. We ask that you pray for complete healing and that her pain will subside soon.

3. Courtney's grandfather (Gramps) passed away this past Sunday after battling several health issues for quite some time. Services will be this weekend. He was a wonderful example of what it meant to be a servant to others and we will miss him greatly. We are thankful, though, that he is no longer suffering and is now with his Lord and King in heaven.

4. We must still continue to "burn" the wound site that is located slightly above Jacob's urethra. This "wound" was the place where the false entry point was created back when we were having difficulty cathing him. The wound has "granulized" (not sure if this is the exact word) and we basically have to use silver nitrate to actually burn this tissue. It is a quick, but very painful process (for both us and Jacob). Please pray that this area will heal soon and no longer require this process.

5. It is hard for us to believe sometimes, but our older son James will be heading off to Kindergarten next year, Lord willing. Please pray for wisdom for us as we seek to find the right school for him. We have applied for admission into one of the Magnet schools located in downtown Chattanooga, close to where I work. Admission is based on a lottery system and we may be placed on a waiting list, but would sure like to have him in a good school, located close to where I work (so I can take him in the morning).

6. Lastly, we ask that you pray that God will grant us the wisdom and clarity of thought needed to take care of not only Jacob's needs, but also James and ourselves.

May God bless each one of you richly and may He grant you the peace that passes all understanding.

Daddy BA

Home at Last

After part of three days and two nights on the road, we ALL arrived back safely in Chattanooga yesterday afternoon. The trip itself, even though long, went well and everyone stayed healthy. I know that Courtney and Jacob were especially happy to be back in their own home again after being away for 100+ days. Please rejoice with us and give thanks to the Lord for all he has done.

There are a few challenges that lie ahead for us and so we continue to ask for your prayers. The catheter situation did not work out for us or for Jacob, so the doctor agreed to let us keep the SP tube and "pee" bag in place for the time being. The plan is to return to Johns Hopkins in early January for another bladder scope. We may then attempt to catheterize his urethra again and go from there.

In the meantime, we do have a pretty rigid schedule we have to follow that involves everything from wound care to around the clock meds to stoma care. Here are a few specific items for which we seek your prayers:

1. The transition back to home life for everyone, especially Courtney and Jacob. This may sound trivial, but there will likely be an adjustment period for all of us.
2. Jacob's stoma - we have to probe it twice a day to prevent skin from growing over it. While this is a quick procedure, it is painful for him and rough on us. The doctors tell us that if the skin were to grow over the stoma, it will require a pretty major surgery.
3. Jacob's urination and SP tube - we had a slight concern last night that perhaps the tube was becoming clogged with particulate of some kind. With instruction from one of the doctors, we were able to flush it out and things seemed to start flowing again. Please pray that the SP tube will stay in and that "pee" will flow out as it should.
4. Jacob's wound care - he has two wound sites that have been slow to heal and require us to "burn" them with silver nitrate to help them heal.
5. Jacob's fluid intake - it is very important that Jacob drink plenty of fluids to stay hydrated and to keep things flowing through the SP tube
6. Jacob's medications - at present, he is taking about four different medicines, some every four hours, in addition to Tylenol and Ibuprofen. Some of these meds will continue for a long time and others will require that we gradually wean him from them to try and reduce the occurrence of withdrawal symptoms.
6. James - it is important that we not allow all of Jacob's needs to completely overshadow James. Also, please pray for us as we look for a school for James (he will likely enter kindergarten next fall).
7. Sleep for all of us - please pray that Jacob will sleep well at night. He continues to wake up from time-to-time and we cannot always tell what may be bothering him. It could be gas or could be something involving his bladder or some other type of pain. Please pray that we will have wisdom in knowing how to treat these episodes as they come up.

Again, though, we are so very thankful for your prayers throughout this journey in our lives. God had definitely used them to sustain us. Please give all praise to Him for the great things He has done.

In Christ Alone,

Daddy BA

Prayer Request

Last night, we again had difficulty "cathing" Jacob. This morning, we took him to the ER to see the Urologist on call. He was able to get it to work, but it was not nearly as smooth as it was a couple of days ago. We even tried using a smaller catheter, which helped a little, but it was still difficult and very uncomfortable for Jacob. So, the doctor put a catheter in to stay until Monday afternoon, when we will see Dr. Gearhart at his clinic.

We don't anticipate having to extend our stay at this point (we hope to leave Tuesday), but we do ask that you pray that the doctors will find a good solution to these challenges we've been having with the catheter. In addition, we also have to "probe" his stoma once or twice a day to help keep skin from growing around it. We discovered this yesterday when we had a clinical visit with the General Pediatric Surgery team.

Praise the Lord, for His love and faithfulness endure forever.

Daddy BA

Post Scope Update

We wanted to let everyone know that the bladder scope went well today (the wait to get in was much longer than the procedure itself). Courtney and I went into the Operating Room again to practice using the catheter on Jacob. It was much easier this time than it was before and we praise God for this. Jacob has a couple of appointments and follow-ups to go to between now and next Tuesday and then perhaps we'll be able to head home to Chattanooga after that.

James went to visit his cousins Ronnie and Joshua for the day (and effectively set up a triple team on his Aunt RoRo). James did get to go back to his preschool today here that he had attended throughout August and September. It was great for him to be able to attend again and see some of his friends at Uncle Ron and Aunt RoRo's church. We are so thankful for their willingness to allow him to attend.

Please pray for continued healing for Jacob and for Courtney and me as we administer meds and catheterize regularly. We are still a little nervous about the whole cath process in light of what happened before, but we know that the Lord is stronger and greater than any of these challenges. Likewise, there is nothing that we go through for which He does not also go through with us.

Praise be to THE King of all kings,

Daddy BA