YIPPEEEEEEE......

We are VERY excited and BLESSED as we drive back to Evansville this afternoon.

We got to Riley early and it worked out great!  Someone else had not shown up and they were able to get us in an hour early!  First we had a great appointment with Dr. Hubbard.  We also met Dr. Schamberger. Today at Jacob's appointment they "maximized his pacemaker."  It was very interesting.

While Dr. Hubbard checked Jacob's pacemaker, Dr. Schamberger did an echo.  We would be amiss if we didn't share the laugh that started this appointment.  God creatively put Jacob's heart on the right side; the percentage of people with their hearts on the right is very small.  It was just natural for Dr. Schamberger to put the echo wand on the left side of Jacob's chest. Apparently Jacob gave him a funny look when he put the gel on the left side of his chest, and Dr. Schamberger soon discovered why when he saw no heart on the monitor!  Dr. Schamberger described the look on Jacob's face as "Got ya!" :) It's not the first time it happened... it won't be the last.  Jacob is VERY creatively made!

It was very cool to watch how they did the test to maximize Jacob's pacemaker function.  Dr. Hubbard changed settings on the pacemaker that caused a lag in how his two ventricular leads fired.  Dr. Schamberger did the test that estimates cardiac output while Dr. Hubbard adjusted the pacemaker.  Jacob's ventricular leads are on two sides of the bottom chamber of his heart. They tested up to 80 milliseconds between how they fired.  Then they tested with one firing first and then the other firing first.  They landed on the best heart function when they fire simultaneously. They are very pleased with how Jacob is doing.  Although they said that the best test is all the walking we did yesterday without any shortness of breath.  (see the post from this morning!)

Tom hung out with Jocelyn during this appointment.  They went and saw the carousel horse by the emergency room and threw coins in, played on the playground, threw money in the "river" in the Riley atrium, and visited the gift shop.  Unfortunately I forgot to fill in for Tom's role of taking pictures.  So maybe we'll meet Dr. Schamberger another time for a picture.  If you look back in the blog, we have various pictures of Dr. Hubbard from the stress test back in early February and other visits.

As we left the cardiopulmonary office area, Jacob and I got to see Lashaunna and Lauren from the metabolic stress test on February 8.  It was an unexpected treat to get to see them on this end of our March Riley adventures.  Lauren asked if we were gonna come back for another test so Jacob could see the difference in his numbers.  I think we'll opt for posting a video for them of Jacob playing basketball with his friends or tennis with Chelsea!  If you missed the metabolic stress test photos... go all the way back to the beginning of the Pics tab.  Tom captured it well!

Lauren came up to see Jacob just after we got discharged from the first visit this month.  Sorry we missed her then but so glad we got to see her today.  After Dr. Hubbard saw the results of the metabolic stress test, she told us that it would probably be just a couple of weeks before surgery.  Seeing Lashaunna & Lauren today was a sweet way to put a bow on this adventure.

Lashaunna, Jacob, Lauren and Kristi 

Metabolic Stress Test.  February 8,2012

After that we were blessed to go have some good laughs with Trina, Tracy, Gin, and Dr. Yancy... but that's for another post because the battery on Jacob's computer is about gone.  So come back for more of the story and more photos!

Fabulous End to Fantastic Day

Yesterday we had a great day at Purdue.  We were surprised by many things...  Don't know that I'll have time right now to write about all of them, but two big highlights even beyond what we discovered at the Biomedical Engineering School...

Purdue is BIG.  We walked about 20 minutes between the buildings where we had appointments.  So throughout the day we walked 20 minutes about three different times.  The FANTASTIC part is that Jacob walked EASILY... it was FANTASTIC... it was phenomenal.  It was SO ENCOURAGING... it was FUN!!

You can really only appreciate how FANTASTIC it is to walk that far with Jacob if you have followed us this last month.  What a month March has been!  And actually November-February weren't so easy either!  November-February Jacob was incredibly limited in what he could do physically.  In mid-October he got very short of breath and uncomfortable when we walked around the Evansville Zoo.  That's when we first knew something was wrong.

Then this month has been all kinds of hard with two admissions to Riley.  On Thursday this week, it will be four weeks since Jacob's big surgery.  He still has two more weeks of weight restriction.  He hasn't been able to play sports all month.

But yesterday walking around Purdue was FANTASTIC!!!

Okay... so right now we are driving to Riley for the next round of tests, so I only have a little bit longer before I need to stop typing for now.

Let me tell you about the FABULOUS part of yesterday.  We got to meet Ana and Yann.  They are French graduate students who got their masters degrees in Aerospace Engineering.  Now Ana is working on her doctorate doing research on fluid dynamics for Dr. Rodefeld's permanent heart pump.  Yann writes code to reproduce the results from Ana's testing so that other testing can be done.  We have lots of pictures to show you, but for now we will tell you that this research is INCREDIBLY EXCITING.  We LOVE getting to be on the front edge of seeing how a heart pump is developed.  It's also INCREDIBLY INTRICATE work.  Please pray for Ana and Yann and Dr. Frankel and Dr. Rodefeld and the others on the team; they need divine creativity and perseverance.

Jacob and many other kids and adults like him have half of a functioning heart.  Jacob has had five heart surgeries to maximize his heart function but he still does not have a pump on the right side of his heart.  This research could very possibly lead to a pump for the right side of the heart for people with only a single ventricle.

Even with all of this research on behalf of kids with single ventricles, Jacob is the first real live person that Ana and Yann have met with a single ventricle and subsequent Fontan circulation.  Jacob "showed off" his scars from his five surgeries.  We hope this will be an additional motivator for their research.  We really enjoyed meeting them.  We were blessed and hope we get to spend some more time with them sometime in the future.

Ana, Jacob, Yann in Ana's lab at Purdue.  March 26, 2012

A Big Day Ahead

Today is a big day.  We are visiting Purdue with Jacob and Jocelyn stayed with NaNa & PawPaw.

Jacob has been interested in pursuing biomedical engineering in college since his project with Dr. Rodefeld on artificial hearts.  That day in April 2011 is when we first heard about Dr. Rodefeld's research.

Today we will investigate Purdue.  Because we were preoccupied most of the month of March, I just looked online about University tours last week.  The regular tours of the university were full, but we still have a full day planned.

First at 1:30pm we will start with a tour of the Biomedical Engineering building.  At 2:30pm we will go to an Engineering Information Session. After that we have a great opportunity to visit Ana Kerlo. Ana is a graduate student that works with Dr. Rodefeld on his research for kids and adults with Fontan circulations.  Ana is from France and her parents are friends with Dr. Fontan.  We don't really know what to expect at her lab, but that makes it exciting!  We have seen a few pictures from Dr. Rodefeld.  He showed us parts of the presentation that he gave in London in early 2011.

So... here we go... but just in case you are wondering... we are still IU fans! :)

Dr. Rodefeld, Jacob, & Ana in July 2011

It's a special day!

check it out....

I napped!

Sorry, Tom....

(see previous post!)

did you see that truck?

I think we got hit again.... don't think this last one was an 18 wheeler with full cargo.... but it was big.  I don't know my truck types well enough to know what it was and I think my eyes were closed anyway. 

I'm sure at some point we will feel less exhausted and more in tune with every day living and life beyond our home... we are not there yet. 

However... did you know that sometimes insurance companies call just to check in?  Yes, they do... I witnessed it first hand yesterday!  I was nervous when I got a voicemail from Anthem and was asked to return the call.  My first thought was "Oh my... surely they will still cover this last admission even though I didn't think to call and precert it."  I actually was pretty nervous and bumming.

When I got to talk to Dee, I was relieved and blessed!  She is a nurse case manager who received a referral for Jacob's case.  She really did just offer compassion and encouragement.  I'm sure she would've offered medical guidance if it were needed, but compassion and encouragement were what was needed.  And quick turn around second admission was covered without my forethought to call.  I gave Dee our blog address.  I hope she takes a look at it today.  I was blessed!  Thanks, Anthem, for that personal touch!

Tom's birthday is tomorrow.  I think I might go buy a birthday present today... but then again... I might take a nap and give him an IOU.  Until I brought it up, he hadn't even realized it was his birthday week.  Maybe he will forget again........  :)

Even with a wonderful son with a remarkable attitude who is recovering well and can begin to feel the benefits of a biventricular pacemaker, the Riley aftermath is tough.

Thanks for coming along with us for the admission rides and the post-Riley aftermath with us!  We continue to need your prayers!

Sorta Getting Back to Normal... What is Normal?

It's been a few days since I've written.  We came home exhausted on Thursday evening, March 15.  The only thing that was better is that Jacob was a week further out from major surgery than when we came home the first time, so his pain level was better. 

Other than that... purely exhausted!  Friday the big outting was back to see Dr. Bee, Jacob's chiropractor.  He needs to go back in two weeks, so the fact that Dr. Bee thought Jacob could go two weeks instead of five days was an improvement. 

Saturday Tom and Jacob were thankful for March Madness.  I was thankful they were occupied, and I could rest!  Jocelyn just bounced around from person to person bringing mostly smiles and glad to be home.

Sunday was a time warp.  We had just been to church the week before, but since then we had unexpectedly made a several day trip up to Riley that included more sleepless nights, more uncertainty as to why Jacob had a fever, and more alarms and tests and medicine.  SO MUCH happened in one week that it was hard, very HARD, to believe that it had only been one week.  I looked at the date on the bulletin several times to really take in that it had only been one week.  I knew that the week before Steve had beautifully preached on John 14 and this past week Ken talked about John 15.  So we tried to press on.  But it felt like a month since we had been to church... not only one week.  Many people that we saw at church hadn't heard that we went back up.  More story to tell...

By after church we were all exhausted some more.  Tom tackled our back yard because the grass was out of control.  The weather has been in the 80s this week.  (That's 27+C for those of you around the world!)  So in addition to the grass needing attention, Jacob has incredible spring fever which doesn't go well with our sports-driven kid who just has a huge new SEVEN INCH thoracotomy scar, a 10 lb weight restriction, and can't lift his arms above his head. 

It turned out to be a low-key and discouraging afternoon.  But we rallied again.  Friends brought meals.  Jacob had fun at Chelsea's house- although he didn't feel like going to the Sunday night high school group at church.  I understood, I wasn't ready to be around lots of people either.  Stir crazy, missing friends, but overwhelmed...

Monday morning brought another doctor's appointment.  This time to see Dr. Morera, Jacob's cardiologist here in Evansville.  It's always good to see Dr. Morera.  He adjusted Jacob's medicine, ordered a Holter monitor (a 24 hour EKG reading for heart rhythm), and was thankful with us that Jacob is doing so well. Other than next week when we see Dr. Hubbard at Riley, Jacob will be seeing Dr. Morera weekly for a few weeks as medicine is adjusted. 

Tom went back to work yesterday, so he is in the heat of projects and meetings.  We continue to be thankful that Ryan covered so much last week on the project out of town.

Last night we went to Jacob's induction ceremony for National Honors Society. It was good to see friends and be encouraged by people who have been praying and following our story.

Today Jacob started tackling some school work.  We talked yesterday about a plan to tackle pre-calc homework this week.  I was proud of him when he came down at 8:30am to get his book and get started.  It wasn't much later that he came down and said that he discovered that it hurts to write and he had no idea how many muscles it takes to push down on a pencil.  So... there you have your fun fact of the day... it takes muscles under your arm to write!

Full recovery is still several weeks away.  We are thankful for the blessing of Spring Break off next week, so Jacob is not further behind in school.  He will do his best to start back to school on April 2.

Around 10am today I took Jocelyn back to daycare.  It's her first day back since late February.  Yesterday she mentioned her friends from class and said her new teacher's name.  Today she ran into day care smiling, hugged everybody, showed off her new haircut, and I slipped out.  That was a good treat from God to us! 

Our smiling "puc-cake"  (we'll be sad when she finally learns to say 'cupcake'!)

Thanks for the many ways you have encouraged us.  We are SO BLESSED to know we are not alone on this journey of life!  Your prayers and encouragements make a DIFFERENCE!!!

Riley hangover part 2

Ugh.....

Yippee!!!!!

We just had the last doctor come in and cleared Jacob to go home!!!  Orders aren't written yet for discharge, but we are close!

Jacob is in the shower.  Tom just walked down to connect with PawPaw & NaNa & Jocie. 

I wouldn't begin to guess the time, but we are hopeful that by Jocie's nap, we will be on I-70 heading toward Evansville!

Jacob still has a ways to go as far as recovery.  He has still had a little fever.  He is still less than two weeks out from a major heart surgery.  He still has lots of school to consider as soon as he feels a little bit better.

HOWEVER, we have once again seen God's hand of faithfulness to sustain us for the journey.  Thanks for your continued prayers.  Last Wednesday Tom posted a picture titled the Riley Hangover.... guessing we might have to post another one of those tomorrow. 

Thankful for the weekend just ahead.  Thankful for March Madness to help pass the time.  Thankful for Ryan who covered for Tom this week on a big ONB project and missed an important family event to do it.  Thankful for PawPaw & NaNa who love little Jocie so much and helped her have a fun week, which helped us relax.  Thankful for God who provides all that we need for the challenges of this life and has also provided a way for us to be with Him for eternity.  Jesus, our Healer, our Champion, our Savior, our Friend!

New and Revolutionary Ideas

Dr. Rodefeld stopped by this morning.  We chatted with him while he stayed outside the door since we are on isolation precautions. 

It was good to see him.  He was not here yesterday.  He had the opportunity to speak at a hospital in Philadelphia about his research.  He describes this hospital as "ground zero" in America for treatment of kids with single ventricles.

Many of you probably don't know about how Jacob's heart is designed.  The fancy terms are these:  Double Inlet Single Ventricle, Pulmonary Atresia with Dextrocardia.  That's a complicated way to say that he only has half of a heart compared to most of the rest of us.  The left side of his heart pumps to his body just like our hearts.  However, we are so thankful that God gave Dr. Fontan the courage and determination and creativity to believe that kids born with single ventricles can live great lives!  In the 1960s, Dr. Fontan engineered a way for surgical redesign to allow blood to flow to the lungs to receive oxygen- even without having the right side of the heart. For Jacob this was accomplished through his first three surgeries.  The first two allowed him to grow a bit first.  His third surgery was the open heart that created the pathway for blood to the lungs.  His blood now flows to his lungs but without pumping action of a right ventricle.

In April 2011, we learned about Dr. Rodefeld's research through a project Jacob was doing for an engineering class.  Dr. Rodefeld's current research offers revolutionary ideas about how to surgically approach kids with single ventricles.  He and his team of engineers are designing a permanent pump that will in effect simulate the half of the heart that single ventricle kids (and adults) are missing.  In addition to being a new surgical approach, these ideas would allow less invasive surgeries AND the pumping action would diminish other complications that can occur later in life.

In September 2011 Dr. Rodefeld visited Dr. Fontan in France for a series of scholarly interviews.  Dr. Fontan is excited about Dr. Rodefeld's current ideas.  Dr. Rodefeld also hand delivered a note from our family to Dr. Fontan.  We included a photo of the other two boys in Jacob's high school who have Fontan circulations and notes from their moms. 

In early April 2012, Dr. Rodefeld will share his research at Great Ormond Street Hospital in London.  It is another premier hospital that is well known for treatment of kids with single ventricles.  He went to Great Ormond Street Hospital last spring and has been invited back to share how his research has developed through this year.

Through learning about Dr. Rodefeld's research, Jacob became very interested in pursuing biomedical engineering in college.  Because of this interest and also because we have high hopes that this research could revolutionize treatment of people with single ventricles, if you hang around with us very long, you will hear more about Dr. Rodefeld!

Jacob & Brett in 2011, Learning about Dr. Rodefeld's research

Good (sorta) News!

This morning we found out that Jacob has a tummy bug that causes fevers.  That's good news because it's the easiest to treat of the options the team had been considering. It's sorta good news because tummy bugs are never fun.  It meant that yesterday when they started considering that as a possibility, we got put into an isolation situation.  Staff that entered the room had to wear yellow gowns and gloves.  It also meant that we had a private room last night.  Tom got a free bed to sleep in!

This tummy bug is a complication of the antibiotics from the first visit.  The antibiotics wiped out the good bugs from his system which allowed the bad bugs to grow. :( 

Jacob will not go home with isolation issues.  Now that they determined what is wrong, they started a new antibiotic to tackle the exact problem.  Good hand washing is the main thing in order to protect the rest of us.  For those of you who know about these things, C Diff is the culprit.

Jacob spiked a temp yesterday early evening.  Ibuprofen helped.  Around 8:30pm, I ended up getting a great nap while Tom and Jacob watched a movie.  Then we all slept hard from about 11:30pm to 3:30am.  Four consecutive hours... quite a treat!  After changing Jacob's sweaty bed, we all went back to sleep (off and on) until about 6:30am.  Then Jacob woke up with strong back pain.  We are guessing it is from sleeping so soundly on a hospital bed.  It seems slightly better now... at least now he is not crying from the pain.  He woke up from sound sleep with it.  That's never fun!

Last night we had Chelsea as our nurse for the first four hours and then Tonya took over for the rest of the night.  Both were great.  Now today we have Tracy who was our pre-op nurse on Feb 29 and the one who got us set up in the Heart Center on March 2.  At this point (well, I guess at any point!), familiar smiling faces are good!

I think we have now met all of the Cardio Vascular Nurse Practitioners; they are a GREAT team.  Dr. Yancy comes around each day; we like him a lot. In addition to the high value he adds to Jacob's medical treatment, we remember how he connected with Jocie on pre-op day and that he gave Zach (a medical student) a ride in a Riley wagon.  See Tom's pics for Jocie in the wagon with Tracy (our RN today) off to the side and a photo of Dr. Yancy & Zach, but no photo of Zach in the wagon. :)  It was a larger than normal wagon so it didn't bust and brought lots of smiles to everyone in pre-op that day!

Yesterday Dr. Turrentine came by.  Dr. Brown is on vacation/traveling to a meeting.  Dr. Turrentine is the surgeon who did Jacob's second surgery in May 1995.  Tom says that he looks the same as he remembers from all those years ago.  I was downstairs getting dinner when he came by.

That's about all we know for now.  Waiting for the rest of the docs to make rounds.  Haven't heard from NaNa & PawPaw yet... hope they are sleeping in.  After next to no nap yesterday, she probably slept hard last night.

Thanks for your continued prayers and encouragements.  We appreciate you!

Tuesday evening update

Jacob was admitted to the Heart Center at 11pm on Monday night.  We were excited to see Dave as Jacob's nurse.  Dave was a favorite from when Jacob had his first pacemaker surgery in October 2010.  He wonderfully taught Jacob how to get in and out of bed in a way that is easy for patients who just had surgery.  Jacob quickly remembered that after this most recent surgery. 

At midnight Jacob went downstairs for a chest Xray.  At 2am Dave drew the blood cultures and started him on the IV antibiotics.  These blood cultures take a few days to grow.  If some bacteria grows from them, then they will know if they need to change his antibiotic regimen.

It really has been a rather quiet day.  Lots of Riley staff in and out.  But mainly low key.  Our nurse was Libby.  She was the one who discharged Jacob last Tuesday, so it was a bit surreal to see her again.  Jacob went down for an ultrasound of the area where his pacemaker is.  With that they are checking to make sure that there is no infection around the pacemaker.  We are still waiting for those results.  No significant fever today but lots of chills and sweats and hot and cold.

At 6:30pm, his temperature suddenly spiked to 102.7F.  The good thing is that he doesn't feel any more miserable than he has.  Now we are waiting for a call back from the docs to determine next steps.  Another good thing is that it is now down to 100.8F at 7:45pm without any medicine.  They are going to get him some tylenol soon.

Jocie spent the night with Tom at a near by hotel last night.  She was fun today and her usual busy self.  I found a perfect place for the two of us to nap, but she wasn't interested in napping.  In fact, she kept waking me up to ask if I was napping.  NaNa picked her up and took her back to their house around 6pm.  Pray that they have a good evening and night.  She loves going there, but it's also hard to not be together.

Tom has posted several pics on the Pics page.  Check them out. 

We are still waiting and hoping for a room at the Ronald McDonald House.  The last call usually comes around 8:30pm so it might not be tonight.  But we can still keep waiting and hoping!

Thanks for your continued prayers.  We are really tired.  Each day I don't think we could possibly be any more tired but each day brings new challenges.  Please keep praying that God will grant rest amidst the craziness and that we will continue to ask Him to renew our minds and keep our hearts clean before Him.  Thanks once again for being along for the ride with us!

back to Riley

We need your continued prayers.  Our pediatrician talked to the folks at Riley and they want us to go back up to start some IV antibiotics since they don't currently know the source of the fever.  We are almost packed and ready for the drive. Will keep you posted.  Thanks for your prayers and your encouragements.  We need you. 

Please pray that a room opens up at Ronald McDonald House.  We are on the waiting list. 

Jacob will be directly admitted to the Heart Center tonight when we arrive.

Hhmmmmm....

Thanks for continuing to check in.  My lack of writing shows how tired we are.  We are ready to get back to normal life.  We have tried in some ways.  It was WONDERFUL to be back at church yesterday!!  Thanks to all who prayed for us after the service.

Tom is back at work today.  We are SOOO thankful that he is in Evansville today and tomorrow and not on the project out of town. He will be gone Wed morning through Friday afternoon.  We will miss him, but I am working on the line up to be extra hands on deck.

Jacob still has a low grade fever.  Last night is jumped high enough that I needed to call his pediatrician.  He has an appointment this afternoon.  Please pray for wisdom for the doctor and a clear plan of action.

Jocie still seems to be not quite herself.  It's not time to take her to daycare yet.  It's nice to have her around but she commands lots of energy.  The smiles are a great pay off.  It's hard when she's ill-tempered.  Jacob asked yesterday if she was just acting "spoiled."  We don't think that's it.  We think she's just "off" a little like the rest of us.

We VERY MUCH appreciate your prayers and encouragements!  We are BLESSED to not be going through this alone.

Dr. Bee... one of our health care heros!

Yesterday one of my highest priorities for the first morning home was to call Dr. Bee.  His chiropractic treatment has been the answer to Jacob's severe migraine-like headaches over the last year... a significant breakthrough for Jacob's life after having these headaches since he was three. 

Even though we had only been home just over 12 hours, Jacob didn't balk at all!  Out the door we went. After having a headache for days on end and being incredibly tight in his shoulders, Jacob felt better when we walked out the door of Active Chiropractic.

Dr. Bee would want you to know that he was sporting his UK shirt.  The pic that showed that off was too blurry to use. 

We hope Jacob never has to have another major surgery, but Dr. Bee agreed to be on call... was it for the small price of a Happy Meal for each of his kids??!!  That's what I remember! :)

LOL... I posted to Tom's page

Hmm..... I am too tired to post to my own page.  Click on the Pics Tab above for my latest post!

Home Sweet Home!

We are basking in God's faithfulness right now... very tired and thankful that basking doesn't take much work!! Looking forward to a season of rejuvenation and restoration! So VERY VERY thankful for your prayers and encouragements!

Check out the photos below as part of our sweet welcome home! Thanks, Riley family & Sherri!

Special meal... YUM!

Even after a week of watching our two-and-three-quarters munchkin, Pawpaw still whipped up a gourmet meal! Yum!!!

low key...

today has been incredibly low key. wonder if i even have energy to push the caps button. :)

as of half hour ago we all had showers.  we have watched tv, stared into space, said our goodbyes to peyton manning (if you're a colts fan, you know what that means), watched care bears, taken pain meds, done some laundry and rested!!

i think jacob is ready to go home, but he has to wait for tom and me to have energy to get him there.

jacob was up a couple of times last night. he still needs meds regularly but he's getting up and down from chairs easier. overall we all slept better and we all took naps today.

it has been fabulous to be here and have pawpaw and nana fix meals, help with laundry, entertain jocie, etc.  they are tired, too, as they have had a very different-than-their-normal kind of week this past week.

we plan to get packed up in the morning and head south to evansville by jocie's nap time.  it will be good to be home.

please keep praying for us.  recovery takes a lot of work and prayer. we appreciate you VERY MUCH! :)

Going Home!!!!!!!!!!!!!!!!!!!!!!

It's true!  Jacob has had a shower, and we are packing up.  The staff are working on all of the discharge paperwork. We also need to check out of the Ronald McDonald House.  So we're not ready to walk out the door yet, but oh so very close! 

Thank you SO MUCH for all of the cheery messages and jokes yesterday.  We had MANY great laughs in the midst of being very tired.  We needed your input and so many shared smiles with us.  THANK YOU!  Over the next few days we hope to give our some awards. :)

Going home... I think being in the hospital a few extra days will make it easier for Jacob.  He is moving around quite well with very little pain medicine.  He can't lay flat yet, but that will come.  His chest is still VERY tender but he even managed to get a t-shirt on after his shower.  His nose is still very snotty and he's sneezing a lot.... it's painful, but he's a trooper.

We will go to PawPaw & NaNa's when we leave here.  It will be so good to have a home cooked meal and get to love on Jocie and sleep without any alarms!!!!

Thanks for your continued prayers.  Getting out of the hospital is a major victory, but it's only one part of surgery recovery.  Jacob can not lift more than 10 pounds for the next many weeks.  He will be out of school all of next week and then will ease back in.  It will take several more weeks to get caught up in school.  Even with all that said..........

YIPPPPPPPPPEEEEEEEEEE!!!!!  We are going home!!!!

Stay tuned.  I'm sure Tom will have more pics to upload soon!

Thanks again for your prayers!

We Need Your Input!

Yesterday I mentioned the ups and downs of a Riley experince.  Today we are a bit discouraged.  Several issues are going on.  This is the short tale...

• Surgery recovery is going well.  Jacob got up and walked quite a bit yesterday.  He's moving around easier after a very significant surgery leaving him a large new scar and two little ones.  We are so proud of him.  He's far from painfree, but he's coping well with that.
• He's got a nasty sinus thing going on.  They ruled out bacterial infection yesterday with the CT scan.  He's sporting the Rudolph look with a VERY red nose from blowing it so often.  Sneezing is also no fun post surgery.  This craziness led to being awake from 1:30-6:00am today.  We are tired. Tom didn't sleep well at the Ronald McDonald House last night either.
• Additionally Jacob is having some heart rhythm issues. I think they may increase the new medicine that he started this weekend.  We will find out when the team comes for rounds.

Yes, discouraged.  We had hoped to be discharged yesterday.  It's not official yet, but we are pretty confident Jacob has landed another night here.   

SOOOOOO...... this is what we are asking.....

Please join us in a CLEAN JOKE SENDING CONTEST and/or A PHOTO CAPTIONING CONTEST!!!

So.... let the fun begin.  You can comment on this post or on our FB status or if those aren't options you can email Tom at 1kwagoneer@gmail.com.

You can get to Tom's photo blog on our main page and then click on the "Pics" tab. 

Thanks for your prayers as we try to persevere and be nice to one another as we get even more tired.  We are SO READY for JACOB to FEEL BETTER!!!!

and... taking a shower would be nice, too! ;)  Hoping that might happen today, too.  Dr. Rodefeld even stopped by and suggested it... without our prompting! :)

Sunday update... at least I think it's Sunday

Yesterday had it's ups and downs. 

On the upside..

• We had a good visit with Chelsea and Stephanie.
• Jacob had a few hours where his headache was better.
• He switched from narcotics for pain to an Ibuprofen-like drug and tylenol. His pain level is not worse.
• We had great nurses yesterday and last night.  They treated Jacob with TLC...and me, too. :)
• The nurse practitioner was "on it" and very kind when we needed her. Thank you, Lori (yes, she's got a good name!)  
• I was frazzled by last night. I needed some significant TLC.  Jacob thought something new was wrong when he saw me crying and talking to Melissa at 3am this morning.  I was crying because he had just had 2.5 hrs of REALLY GOOD sleep.  I desperately needed that upward swing!  He has had more good sleep since then and is still asleep now!
• We had a good visit with Jocie, PawPaw and NaNa late last night.  She is having a great time with them.  She liked her doctor kit from Stephanie and Chelsea.
• Dr. Rotta came up last night and listened well to my concerns.  My dad was here at just the right time to help me have that conversation in a positive way.
• I mentioned Dr. Morera to Dr. Rotta.  Dr. Rotta doesn't know Dr. Morera, but he mentioned that Dr. Morera's reputation is that he is very loved.  We are so thankful that we have Dr. Morera and his staff when we are ready to go home.

On the down side...

• Jacob's headache came back with gusto.
• He is really stuffy in his nose.  The combination of that with the headache is making it much harder to get up, breathe deep, move around despite the pain.  It is discouraging but he is staying strong and courageous.  He needs some relief from this headache and stuffiness!!
• He needed to start on a new medicine... well it was sorta new.  He had been on a larger dose of it in January.  It's the medicine that led to the ambulance ride from school to the ER in late January.  That thought freaked me out even though Dr. Hubbard started him on 1/4 of the dose.  Dr. Hubbard, our Riley cardiologist who visits in Evansville, had told me on Friday that if we ever needed to go back on it, it would be better with this new pacemaker.  Jacob needed it long before I was ready to test that comment.  I am thankful that she knew that he is extremely sensitive to it.  He did very well on it through the night!!

Tom said last night that he had forgotten how much Riley visits tend to have significant ups and downs.  Today the trend feels upward. We can see what seems like ever-so-slight improvements, but Jacob can't really feel them yet.  We keep pressing on.

Since it's not our style to end on the down side, let me say that we are so very thankful for your continued encouragement.  We trust and believe that God is providing healing even though the process is slower than we like.  We see God give us little bits of laughter and encouragement at just the right times.  Check out the photos below and on the "Our Pics" tab.  Tom keeps adding photos along the way.  He is doing a good job of keeping things on the light side when it's appropriate.

Jacob, Chelsea, and Jocie and their "puccakes" (as Jocie calls them!)

Chelsea brought over the puccakes the Friday night before we came up for surgery. 

At least I think it was Friday night... days are running together right now.

This was Jacob in 1996 a day or two after his open heart surgery. 

He had the same look in his eyes yesterday except he fills up an adult bed

and doesn't need to be tied down. 

He is handling the incredible stress and pain in great ways.

I'm so thankful for his "cool as a cucumber" personality. 

The little red sock in the air showed that off even at 18 months.  

His cute hospital socks are a little bigger this time. :)

Thanks again for coming along with us for the Riley ride!  We need your prayers so that we can continue to keep our eyes on our very big and majestic God who has good plans for Jacob!

Saturday morning

Last night we all got more rest.  For Jacob and me it was a bit intermittent with the busyness of meds, and moving around and all that is needed through the night.  Tom went back to the Ronald McDonald House around midnight.  But we did all rest.  Thanks for your prayers.  Yesterday Jacob had a migraine-like headache.  That is mostly better today with only the most headache yucks.  That is hard on top of the rest of what he is facing.

This morning he got up and ate breakfast and got cleaned up.  We are still waiting for the team of doctors to come around.  We are not sure when that will be, but hopefully soon.

Also Chelsea and Stephanie just got here.

Thanks to my friends who sent baklava.  We haven't dug into it yet, but it won't be long... we have just about finished off Carl's famous cookies!

Today will be lots of work for Jacob.  His right lung needs to be expanded more than it is.  They moved it around quite a bit during surgery.  It's important for him to sit up, walk around if possible, and use the dreaded incentive spirometer, and work to get his stamina back.

Tom and I are okay.  We are tired but still laughing and smiling!  We look forward to seeing Jocie this evening after her nap.  She has been having a GREAT time entertaining PawPaw & NaNa!

Thanks for your prayers!

Friday evening update

The afternoon was full of good surprises:

• Carl Clayton brought homemade cookies (see pic on pics page) and a book for a new friend.
• Denny, one of the pastors from our church, made a surprise stop while he was in Indy visiting his parents.
• Jacob sat up in the chair for an hour... without puking!  Thanks Jennifer and Natalie for believing Jacob could do it!
• At 6pm we moved up to a much quieter private room in the Heart Center, where we were greeted by Tracy, who was our nurse during pre-op on Wednesday.  It was nice to see a familiar face!  And she gave Tom a hard time for his incorrect caption on the photo of her drawing blood that day! :) Tracy played quite a bit with Jocelyn  on Wednesday while we waited for doctors to come.  It was great to see her again... even if only for an hour before we meet the night nurse.

Jacob is resting very comfortably.  Please continue to pray for pain relief and determination and perseverance to keep pressing on.  Major surgery and recovery requires so many little steps to tackle the whole process of recovery. 

Tomorrow will be a busy day as Jacob continues to move around more and more and get stiff muscles moving again.  Please pray for no more headaches on top of surgery recovery. 

We also anticipate Chelsea (Jacob's girlfriend) and Stephanie (her mom) visiting.  We also hope to see Jocelyn  tomorrow late afternoon.  It will be another busy day!

Tom and I are holding up okay.  We are both hopeful of MUCH more sleep tonight than last night!!  Additionally, so many things just come to a standstill when we have a Riley experience.  We know lots of life including baby showers and tornadoes and ezine deadlines and more are impacting our friends lives while we are in the "Riley bubble."  We look forward to catching up on life on the outside world soon!  This week, we've been a little preoccupied.

Some of you are finding Tom's current hobby of posting odd pictures of things like my slippers.  (See tab called Our Pics)  It would be most helpful if you would make a few comments to his posts... maybe that will take away some of the "maybe -if-I-post-this-pic-someone-will-comment" phenomenon.  I'm getting nervous about what else he might deem worthy of adding to our Riley story!

Thanks for your continued prayers!

Friday mid-day update

Jacob is doing relatively well right now.  He is hurting but it's fairly manageable.  He wakes up and does the things that the nurse asks him to do... and then goes back to sleep. 

Right now the big challenge is that he has what feels like a migraine.  Nauseous, severe headache, and tight neck muscles.  Because of that, his recovery is going a little slower.  However, by the afternoon we are hoping that he can get up to a chair next to his bed, can have all of his medicines by mouth instead of through the IV, and be eating a little bit.

Please keep praying.  We are tired.  We miss Jocie.  Dr. Brown came by and said that they felt really good about the pacemaker placement.  Dr. Hubbard came by to get the pacemaker set on the right settings.  Dr. Rodefeld came by to say hi. Grandma & Grandpa South went home this morning.  They didn't get to see Jacob much during their stay here, but we were glad they came.  Carl Clayton also stopped by again today.  Check out the photos Tom uploaded.

Pain, nausea, headache, needing to get out of bed and eat... big challenges to tackle yet today. Thanks for your prayers! 

Vivid Memories

One of our most vivid memories from Riley after Jacob was born , is the smell of the hand soap. 17 years later it still smells the same. I remember that we had to wash or hands and arms each time we entered the ICU and the strong odor stays on you and apparently with you.

Friday morning update

For all of you who care so much about us... we are very thankful for you!  It was a rough night.  None of the three of us slept much last night.  We can't imagine how difficult it would be if you weren't helping us with your prayers!

I think this morning Jacob's pain is better controlled, and he is waking up more.  Today will be an important day for continued improvement.  Maybe later I can go back and read what I wrote yesterday and fill in some missing pieces of the story. 

For now, I just wanted to get you a morning update for all you early birds!  And ask you to please continue praying us toward Jacob feeling better!

Post Op in Intensive Care

Surgery went well but Jacob's pain has been difficult to control.  Please keep praying for us.  Right now it feels like it is going to be a long night.  I think this last thing that they tried is helping.  We'll see. Please pray that Jacob can get some rest tonight.  We appreciate you!

Dr. Brown is done with his part!

Okay... so I'm writing this before he's actually out so I can just press send when they call us to go talk to the
 doctor... but if I don't do it now, it might be a few hours before I get another chance.

We don't know much more right now, so I'll write more later.  We anticipate one night in the ICU and then we will go to the Heart Center where we were before.

IT may still be an hour before we see Jacob.

more soon!

Priorities are Important

My blog title last night was oh so wrong... Dr. Brown had an emergency with another patient this morning.  We have been around Riley enough to know that emergencies take priority, and plans change.  It's hard when we have waited so long already and when Jacob is our top priority, but we know we are part of a system.  We know that if Jacob were in an emergency, we would want others to wait patiently.

Hopefully Jacob will go back to surgery soon.  We anticipate a 3-4 hour surgery, but don't hold us to that!

We all did okay waiting for a while.  Then we were all hungry.  Tom and I got to step out to get some breakfast.  Jacob was just hungry and thirsty but didn't complain.  That's not his style.

We had a little craziness about what procedure Dr. Brown thinks is the best as far as how to get to Jacob's heart.  It is going to be different than we thought. From looking at the X-rays, Dr. Brown plans to get the pacemaker leads where they need to be without doing a full cut in his chest like in an open heart surgery.  Instead he is going to go in from Jacob's back.  So please pray for that procedure.  It takes about an hour to get everything ready for Dr. Brown to come in and do his part.  

Also please join us in praying that no chest tube is needed.  That was very painful for Jacob the last time.   We want what is best for healing, but for pain levels over the next few days, no chest tube would be wonderful!

The change in plan on procedure was a bit unnerving.  Just the unknown after we had all sorta gotten used to the idea of his chest being cracked open.  The back requires more work done to the muscles but doesn't require bone to heal.  We were psyched up and then had to regroup. We have done that before.  Flexibility is important!  Our priority for Jacob is healing... not for things to go exactly as we thought they were gonna go.

Thanks for your prayers!  Soon a new kind of waiting begins...