Out and next Steps

Jacob was discharged from the hospital yesterday evening.  We made it back to the McElderry House where we are staying.  He was really motivated to get out of the hospital and did not want Inpatient PT.  His first night out went pretty well.  We will be working on taking steps today, using the walker, around the house.  He has a follow-up appointment tomorrow morning at 10 am with Dr. Ahn and we may be able to begin the trip home tomorrow.  Jacob will likely need extensive PT on an outpatient basis, but we should be able to arrange this at home.

Please continue to pray that Jacob's incision site will heal and that his legs will continue to get stronger each day.  Please pray that he will consume enough liquids, too, to keep the urology side of things in good order.

The Lord is gracious and merciful.

We will try to provide an update tomorrow morning, right after our appointment.

Mommy and Daddy

Here is Jacob sitting up saying, "Look, Mom, no hands."

Discharged today

Thank you Jesus.  Jacob was discharged today and he has a post op appointment Wednesday.

One Step at a Time

Praise the Lord!  Jacob has started to take a few steps using a walker.  If his progress continues and his fluid intake (minus the IV that came out last night) stays consistent, he may be discharged tomorrow.  Also, it is possible that we may not need to stay here for PT and can set it up on an outpatient basis back in Chattanooga.  Our follow-up appt with the surgeon is scheduled for Tuesday morning.

Rejoice in the Lord always.

Mommy and Daddy

The Turkey

God used an inflatable turkey as an incentive to help Jacob get out of bed and to bring smiles to many other children.  We have a remote control connected to it so Jacob can turn it off and on from his chair.  Well, tonight he wanted the motor on it to rest because it has been on for days.  So he told us that  he wanted to get up and go turn it off.  This surprised us because he was so exhausted from PT this morning and afternoon.  But he did it!! 

Thank you Jesus!!

Just happened

Jacob's IV came out so trying to get other side to work.

Ohhhhhhhhhhh Noooooooooooo

Some rough patches, a few potholes and then a smoother road

The last 24 hours have had their share of ups and downs.  Jacob has been dealing with a lot of itching from his pain medicine (we've learned that morphine is the worst for him), low output and leaking from his continence stoma (along with very dark urine) and a major rash on both cheeks that was spreading to his ears and neck. 


Our challenge is that Jacob's condition involves three major disciplines - urology, neurology and orthopedics (along with general pediatrics).  In most cases, though, only one of the three disciplines is taking the lead, based on the type of surgery he is having.  This time, it is Neurology.  However, if something goes wrong with one of the other two areas, it can be quite challenging, especially at night, to get action taken. 


We became concerned yesterday evening with the urology side of things due to the output and color.  At the same time, we were trying to figure out how to stop the rash from spreading.  Jacob was most concerned with the itching and pain meds while Mommy and Daddy were concerned with the pee. 


Sleep was almost non-existent last night as both of us stayed at the hospital, wanting to make sure that we didn't miss the Neuro team so they could connect with urology.  Despite the rough night, though, the Lord began smoothing out the rough spots today.  The pain team came by and were able to change him to a new medicine (Ketorolac/Tordol) - which greatly reduced the itching.  Jacob has been able to slowly raise his  bed - 10 degrees each hour until he reaches 60 degrees.  As of the writing of this, he is at 45.  We are still concerned about the Urology side of things, but a member of that team is expected to stop by this evening.  We were also able to irrigate/flush quite a bit of crud out of his bladder and we pray this will help with the urinary issues.   


At one point, after starting this new pain medicine, Jacob said, "surprise" and started moving his head back and forth rapidly and lifting both of this arms.  This was after not wanting to move at all - saying everything hurt and asking us to help him gingerly move a half inch at a time, just to try and roll to his side.  Our jaws dropped and we couldn't believe what we were seeing.  Dr. Ahn stopped by a little later and was also amazed.  Initially, they told us that Jacob would not be discharged from the hospital until Tuesday and then at that time, he would be looking at the possibility of Inpatient Physical Therapy at Kennedy Krieger. However, after seeing his progress, Dr. Ahn said we might be discharged from the hospital - to either Inpatient PT or better yet, to Outpatient PT - meaning we might be able to start heading home on Tuesday or Wednesday. 


As for the rash, after initially thinking it might be fungal, two members of the Dermatology team came by and believe that it is a contact reaction/allergy to something he had during surgery (maybe tape or detergent).  It is now being treated with a topical steroid.


There is still a great deal of uncertainty concerning his release, PT and ultimately our return to Chattanooga.  But we must rest confidently in knowing that there is no uncertainty with our Lord and HIS sovereign plan.  Everything will ultimately be used to bring glory to HIS name.


Even though this has been one of our more trying trips, especially in light of the events that occurred on the way up, we are amazed at how many people the Lord has brought us into contact with during our first week here.  In addition to new doctors, nurses and hospital staff (and a fair number we already knew), we've met policy officers from Jefferson Co, WV.  We've had conversations with multiple individuals from our insurance company and the Repair/Towing shop (where we said goodbye to the ole "family truckster.")  We met an Uber driver who took us to Enterprise (who actually said he would pray for us and our surgery), three Employees at Enterprise Rent-a-Car, the staff at the hotel where we stayed on the first night, a manager at the short term housing where we stayed the first three nights and our friend Ms. Teresa, who has been so great in terms of finding lodging for us when the Children's House has been unavailable.  We've also reconnected with a family that we shared a room with during our 2008 surgery (their son has the same condition as Jacob) and of course Kiki and Liz, two of our most favorite nurses (Kiki from past surgeries and Liz more recently). 


I'm sure there are others we've failed to mention and still others we haven't met, yet.  One of prayers, prior to any surgery or trip to Hopkins, is that the Lord will bring individuals into our path who may not know Him and then use our feeble words and actions to shine forth with the truth of HIS gospel.  


Well, with this trip, He has certainly brought many individuals into our path.  We continue to pray that He might use even us to accomplish HIS good purposes and that we might plant seeds that HE will cause to grow into a bountiful harvest. 


Mommy and Daddy

Some rough patches, and few potholes and then a smoother road

The last 24 hours have had their share of ups and downs.  Jacob has been dealing with a lot of itching from his pain medicine (we've learned that morphine is the worst for him), low output and leaking from his continence stoma (along with very dark urine) and a major rash on both cheeks that was spreading to his ears and neck. 


Our challenge is that Jacob's condition involves three major disciplines - urology, neurology and orthopedics (along with general pediatrics).  In most cases, though, only one of the three disciplines is taking the lead, based on the type of surgery he is having.  This time, it is Neurology.  However, if something goes wrong with one of the other two areas, it can be quite challenging, especially at night, to get action taken. 


We became concerned yesterday evening with the urology side of things due to the output and color.  At the same time, we were trying to figure out how to stop the rash from spreading.  Jacob was most concerned with the itching and pain meds while Mommy and Daddy were concerned with the pee. 


Sleep was almost non-existent last night as both of us stayed at the hospital, wanting to make sure that we didn't miss the Neuro team so they could connect with urology.  Despite the rough night, though, the Lord began smoothing out the rough spots today.  The pain team came by and were able to change him to a new medicine (Ketorolac/Tordol) - which greatly reduced the itching.  Jacob has been able to slowly raise his  bed - 10 degrees each hour until he reaches 60 degrees.  As of the writing of this, he is at 45.  We are still concerned about the Urology side of things, but a member of that team is expected to stop by this evening.  We were also able to irrigate/flush quite a bit of crud out of his bladder and we pray this will help with the urinary issues.   


At one point, after starting this new pain medicine, Jacob said, "surprise" and started moving his head back and forth rapidly and lifting both of this arms.  This was after not wanting to move at all - saying everything hurt and asking us to help him gingerly move a half inch at a time, just to try and roll to his side.  Our jaws dropped and we couldn't believe what we were seeing.  Dr. Ahn stopped by a little later and was also amazed.  Initially, they told us that Jacob would not be discharged from the hospital until Tuesday and then at that time, he would be looking at the possibility of Inpatient Physical Therapy at Kennedy Krieger. However, after seeing his progress, Dr. Ahn said we might be discharged from the hospital - to either Inpatient PT or better yet, to Outpatient PT - meaning we might be able to start heading home on Tuesday or Wednesday. 


As for the rash, after initially thinking it might be fungal, two members of the Dermatology team came by and believe that it is a contact reaction/allergy to something he had during surgery (maybe tape or detergent).  It is now being treated with a topical steroid.


There is still a great deal of uncertainty concerning his release, PT and ultimately our return to Chattanooga.  But we must rest confidently in knowing that there is no uncertainty with our Lord and HIS sovereign plan.  Everything will ultimately be used to bring glory to HIS name.


Even though this has been one of our more trying trips, especially in light of the events that occurred on the way up, we are amazed at how many people the Lord has brought us into contact with during our first week here.  In addition to new doctors, nurses and hospital staff (and a fair number we already knew), we've met policy officers from Jefferson Co, WV.  We've had conversations with multiple individuals from our insurance company and the Repair/Towing shop (where we said goodbye to the ole "family truckster.")  We met an Uber driver who took us to Enterprise (who actually said he would pray for us and our surgery), three Employees at Enterprise Rent-a-Car, the staff at the hotel where we stayed on the first night, a manager at the short term housing where we stayed the first three nights and our friend Ms. Teresa, who has been so great in terms of finding lodging for us when the Children's House has been unavailable.  We've also reconnected with a family that we shared a room with during our 2008 surgery (their son has the same condition as Jacob) and of course Kiki and Liz, two of our most favorite nurses (Kiki from past surgeries and Liz more recently). 


I'm sure there are others we've failed to mention and still others we haven't met, yet.  One of prayers, prior to any surgery or trip to Hopkins, is that the Lord will bring individuals into our path who may not know Him and then use our feeble words and actions to shine forth with the truth of HIS gospel.  


Well, with this trip, He has certainly brought many individuals into our path.  We continue to pray that He might use even us to accomplish HIS good purposes and that we might plant seeds that HE will cause to grow into a bountiful harvest. 


Mommy and Daddy