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
Friday, November 7, 2008
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