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.