To our Kiki

I'm still working on yours.  Almost ten years of amazing love from you...it's taking a little time to write.  We love you so much!!!!

Our amazing nurse

Liz three years ago you became part of our family.  You have loved, laughed and cried with us.  When we first had you as our nurse you were so quiet...you had no idea what kind of family God put in your life that day.  Boy were you in for a surprise.  I don't think you had ever seen so many inflatable's inside a hospital or the Children's House before.  You loved Jacob's Frosty the Snowman so much, that I wouldn't dare forget to bring him on this trip.  And of course Jacob wouldn't let me leave home without Frosty and Turkey, if he could he would have brought all the others.

You are an amazing nurse, but most of all, an amazing person.  And I'm so glad we have you!!!  Thank you for coming to see us on your day off.  I wouldn't know what I'd do if I didn't get a picture of you and Jacob with his inflatable's.  Thank you for taking care of Jacob.  But most of all, thank you for taking care of me!!  You were the calm in my storm.  You listened to my worries and then you acted on them faster than the beat of my heart.  What an amazing nurse!!!  Not only did you take care of our son, your patient, you took care of us.  Not an easy thing to do, I know for sure, but God gave you this amazing ability.  And I am so blessed and truly thankful He chose us to be a part of it.  We love you sooooooo much!!!

God sent a student

We always love coming back to see our Hopkins hospital family who take such good care of us while we are there.  We have grown into a huge family for almost 10 years now.  And our family continues to grow every time we come back.  This time God gave us a student.  One that we will never forget.  She fell in love with our son, just as fast as we fell in love with her.  Her NC accent was way better than our southern Tennessee accent, at least I thought so.  She becomes a nurse in December, but in my eyes...she was already one.  We love you Brooke.  Thank you for taking care of our son and thank you for wanting to be part of our huge family.  You have a beautiful soul!!  When God calls us back to our Hopkins family, I just know you will be there to take care of us again.  You are AMAZING!!!

Love you MORE!!!

Brooke called Jacob her Patrick Star (from Sponge Bob) and wrote his name on his water cup with measurements/times to help him get the amount needed.  He still gets a big smile on his face when we mention this to him.   

Close up with the special cup

Giving Thanks

We stopped off to thank the Jefferson County WV Sheriff department for going above and beyond the call of duty for our family.  Thank you God for the men and women who serve and protect us all.

Listen and obey

God told me tonight we needed to go down the street to the Northeast Market to get dinner.  All of us, not just Daddy.  We arrived 30 minutes before they close, so there were a lot of vendors that had already shut down for the night.  But God had one still open and waiting for us, Heavenly Hotdog Grill. Two young men stepped down from the counter while the others prepared our food. I was able to share a little about our trip and how God has worked miracles.  One of them asked if he could pray for us and then we all held hands and prayed.  Unbelievable experience, nothing we expected when God told all of us we need to go.  I wish I would have gotten a picture of them and wrote their names down, but we we're just so blown away from the blessings that poured out from them.  The one that came up with the recipe for the drinks....AMAZING!!!  You will see a picture of Jacob enjoying every one of them.  The strawberry with lemon lime twist is his favorite!!!  Thank you, Jesus, for these God loving, young men that He brought into our paths.  We are truly thankful and blessed that we were able to meet them.  We will see you next time we are in Baltimore.  Keep up the fantastic work that God has blessed you with.  To God be the glory in all that we do.

Jacob loved the fresh fruit drinks from Heavenly Hot Dog Grill and we gotta say, we agree with him.  Flavors include mango (2), strawberry tea, blueberry and pink lemonade.  As you can probably see, there is actual fruit floating in these drinks. 

The food was also fantastic.  Mac and Cheese, pulled pork and Collard Greens.  If you are ever in Baltimore, stop by the Northeast Market, about two blocks from Hopkins, and check out the Heavenly Hot Dog Grill - the food and the people. 

Faith and Free to Go

Jacob got a good report from Dr. Ahn and Kelly today.  We are cleared to come home and hope to start our trip back tomorrow morning.  Dr. Ahn was particularly impressed with how quickly he had started walking again, especially after not being able to do so for 70 days.  Thank you Jesus!!


Please pray that Jacob's back and legs (especially) will do well on the long trip and that we will arrive back safely in Chattanooga (please, Lord, no more deer encounters). 


Through Jacob's story and by faith in His name (faith that only He can grant), the Lord has demonstrated His power, grace, mercy and love over and over again.  By this same faith that brought Jacob and us through the storms of travel and surgery, we believe He can and will use it again to bring rain to put out the wildfires.  He tells us in His Word that if we have faith the size of a tiny mustard seed, we can move mountains.  Or in this case, bring rain that is not in the forecast.




1 Kings 18:41-45 ESV
And Elijah said to Ahab, “Go up, eat and drink, for there is a sound of the rushing of rain.” So Ahab went up to eat and to drink. And Elijah went up to the top of Mount Carmel. And he bowed himself down on the earth and put his face between his knees. And he said to his servant, “Go up now, look toward the sea.” And he went up and looked and said, “There is nothing.” And he said, “Go again,” seven times. And at the seventh time he said, “Behold, a little cloud like a man's hand is rising from the sea.” And he said, “Go up, say to Ahab, ‘Prepare your chariot and go down, lest the rain stop you.’” And in a little while the heavens grew black with clouds and wind, and there was a great rain.

I have faith that when we get home there will be a great rain, sufficient enough to put the fires out.

Trust in Him

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

Rough start to the day

Jacob is having a rough morning.  They are changing his pain meds because he is itching so much on the one he is on now.  He has been crying, fussing and itching non stop since 6 this morning.  He just fell asleep.  Thank you Jesus, because he needs to rest.

Bath time and on to his side

Morning Update

Jacob had a pretty good night.  After several unsuccessful attempts, an IV nurse was able to draw his blood on the first try (using the fancy vein finding machine) - Praise the Lord.  He is still a little swollen and has some leg pain and itching (associated with the pain meds).  He remains on his stomach, but the doctor says he can go side-to-side today.  Tomorrow, if things go well, he will be able to roll over on his back. 


So far, his legs are both moving well and all in all, the Lord has given him a positive attitude throughout. 


Thank you for praying and lifting Jacob up before the Throne of Grace. 


Mommy and Daddy


Up next - We are known for Thanksgiving and Christmas Inflatables...

God's timing is everything

We made it back and Jacob didn't even know we were gone.  Thank you, Jesus, for that.  We hated to leave him and go so far away.  But now that is behind us and we continue to move forward with God's plan.  Can't wait to see what's next.  There is always an opportunity to share with others how amazing our Father is.

Jacob's IV isn't working to draw blood.  Please pray they will figure something out because he DOES NOT LIKE NEEDLES, IV's, meds, flushing... anything going into veins.

Three years

Three years ago, God gave us this van on our way to a surgery.  Three years later, while on our way to a surgery, God is leaving it here.  Thank you Jesus for giving us nine amazing safe trips to and from Hopkins.  We are truly blessed.  We are on our way back now to the hospital.  By the way, he is still sleeping.  He just woke up one time for a minute and asked "Where is mommy?"  Our nurse told him we went to the car and he went back to sleep.  Thank you all for praying.

Resting comfortably and highly medicated

The Van

Please pray for Bryan and I as we travel back to our van to gather all our belongings.  The appraiser called and said our van is totaled and that there is no rush for us to get our stuff, but to let him know as soon as we can go.  Bryan and I talked and said while Jacob is in the PICU he has a one on one nurse and will be ok until we get back.  Well as I was typing this we get a phone call saying they have a room ready for Jacob and they are moving him now to the children's floor.  We are an hour away from our car and can't turn back now, but we know God has all of us.  It breaks our hearts to leave him.  But we know it will be quicker for both of us to go and get it taken care of so we can get back and focus on his recovery.  To God be the Glory.

Good morning

Thank you Jesus Jacob did awesome thru the night.  After 1am he called out momma only once to push his pain button.  Before one, it was a little rough getting his pain under control, but that's normal.  Thank you ALL for praying.  It was and is amazing to watch God work.

In recovery

Jacob has arrived in the PICU.  He is in a good bit of pain, especially in his back, but it is being managed fairly well.  

He will need to lay on his stomach for two days.  We can move him on his side if needed to change colostomy bag and adjust catheter/pee bag. 

The incision site and stitches look good, but is pretty long.

Thank you again for praying. 

Mommy and Daddy

Out of surgery

Dr. Ahn just came out and the surgery is finished.  He feels like it went well and that Jacob's nerve function looks good.  The cord was definitely tethered and he removed a lot of the lypoma that was restricting his spinal cord.

Jacob is expected to be in the hospital until perhaps the weekend.  He will be in the ICU tonight and may transfer to a room tomorrow.  We have a follow-up appointment next Tuesday.

Thank you all for praying for Jacob and us - to God be the glory - and we ask for your continued prayers as Jacob recovers.

Mommy and Daddy

Update

We just received our latest update and the doctors expect to be finished in about an hour and a half (around 6 pm).

Thank you for your continued prayers and the many notes of encouragement on FB, by text and phone.

Despite the rough patches we've encountered over the past 24 hours, the Lord has used the prayers of His people to remind us that He is still on the throne - still has it all under control.

Mommy and Daddy

Two hour update

He is ok and they are still working.

He just went back

Trust in Him

A deer was standing in our lane last night.  We were on a two lane hwy and a car was heading towards us.  So God picked the deer instead of us and the people in the other car.  Thank you Jesus we all are ok.  We were two hours away from Baltimore, God sent us a policeman that drove us the rest of the way....AMAZING!!  More details later, but we have a rental now and heading to the hospital.

Saying goodbye to brother

Heading up

We are making our way to Baltimore via stops in Knoxville and Salem (VA).  We hope to arrive this evening.

The surgery is scheduled for tomorrow morning at 11 am, but we are to be there at 8:45.

We are thankful that the Lord has kept everyone healthy up to this point and we continue to covet your prayers as we travel today and prepare for surgery tomorrow.

We were unable to get into the Children's House, but are thankful for the Lord's provision of a room nearby and then the McElderry House lodging once Jacob is released from the hospital.

As of right now, they estimate 2-5 days in the hospital and a post op follow-up appointment on 11/15.

We are reminded of a children's song that really speaks powerful words and encourages us as we look ahead to this surgery:

"My God is so Big, so Strong and so Mighty, there's Nothing my God cannot do".

Mommy and Daddy