Lifeblood

B has been a faithful blood donor since 2006.  He is the blood drive coordinator for his company and is very passionate about giving.  He was recently asked to speak at Lifeblood's annual meeting which is tomorrow.  I thought you might all enjoy reading his speech.  Most of it you already know, but read it and consider donating blood if you are able.

They gave him quite a long time to speak, so it is a little lengthy.

I want to thank you for giving me the opportunity to share about my family and how we have been personally impacted by Lifeblood.  I donated blood for the first time in 2006.  A lot has happened in the last 6 years.  But I never would have imagined having the opportunity I have today. 

I think the goal of me being here is to encourage you and help you put a face behind all the work you do.  Well, here is a face for you to remember.  This is my son, Jonah.  In June he was the recipient of blood products that probably passed through many of your hands.  So if you want to put a face behind all those pints you are collecting, here you go.  He’s 5 years old, he weighs 38 pounds, he can beat me at Mario Cart, and I think you will agree with me – he’s a real trooper.

I want to briefly share how I started out donating blood.  I started donating blood in 2006 at work.  It was during the Elvis t-shirt promotion.  One of my friends was in charge of the blood drive on our floor so I asked her what the donation process was like.  I was a little nervous but decided to go ahead and do it.  After that first time I thought to myself, “I will probably never do this again.”  It was pretty uncomfortable.  But then I heard a statistic that 60% of first time donors never donate a second time – and I didn’t want to be part of that statistic.  So I convinced myself to donate a second time.  It wasn’t that bad.  So then I started setting personal goals.  I wanted to donate up to a gallon.  Then 2 gallons.  Currently I have donated almost 4 gallons and now I just try to donate as soon as I am eligible.  Along the way I ended up being the representative for International Paper’s blood drive at the Towers. 

Because of my involvement with the blood drives at work I have talked to a lot of life-long donors.  It didn’t take long to discover a lot of people have a reason for donating.  They had either a family member or close friend who needed blood and that now drives them to donate year round.  So I had a funny feeling that I didn’t just randomly get into blood donation.  I knew I would eventually have a story like most of the donors I’ve met.  I just didn’t know it would happen so soon.

In 2007 Katie and I felt that the Lord was telling us we should adopt a child.  Specifically, a child from China.  Before we officially declared with the China program our agency called and said they had a boy in Hong Kong they wanted us to look at.  He was 3 years old.  From day one our agency shared with us that he had a complex heart condition.  On the same day they emailed us a mug-shot picture.  His chubby cheeks and almond shaped eyes took root in our hearts and we loved him immediately.  We knew his heart condition was pretty serious, but our logic was if God wanted us to have this child, He would give us what we need to take care of him.  And He has been completely faithful to do that.

We eventually started getting medical documents from Hong Kong as we prepared to bring him home.  We met with a cardiologist at Le Bonheur to discuss his condition.  As our cardiologist was looking through all the paperwork her eyes kept getting bigger and bigger.  We were like, “Is everything OK?”  She couldn’t believe he was still alive.  His heart was very special.  In his first year of life he had multiple open heart surgeries.  She prepared us for the fact that when we brought Jonah home he would need another major surgery pretty soon after he arrived.

After a lot of waiting and an unbelievable amount of paperwork, in February of this year we went to Hong Kong and got our son.  We spent a week there meeting the wonderful people who had taken care of him since he left the hospital.  It was amazing to see how dearly loved he was.  The orphanage was not at all what you typically think of when you hear of orphanages in China and other places overseas.  It was very personal.  There were a ton of volunteers.  And they genuinely loved the children under their care.  But, considering all this, how great the facility was, and how well taken care of Jonah was – it would not compare to having his own family, his own mommy and daddy.  So we brought Jonah home and started our new family. 

When we landed in Los Angeles and went through customs, it was such a huge moment.  We missed our son’s very first steps.  But we had a front row seat for his first steps in the United States.  He was so excited to be in America.  Every minute was a new experience for him. 

The first few weeks were filled with joys and challenges.  The process of getting to know Jonah and introducing him to new things was so much fun.  I think we went to get ice cream every day for a solid three months.  It was such a unique time for the 3 of us and we will have those memories forever.

As things settled down we started making plans to have surgery in the summer.  The surgery Jonah needed is called a Fontan.  A major symptom of his condition is that he was not getting enough oxygen in his blood.  The normal oxygen level for you and me is around 99% and his was 80%.  So his little fingers and toes would often turn blue and he would get out of breath faster than the average kid his age.  So the goal of the surgery was to redirect blood flow to his lungs and get more oxygen in his blood.

On June 18 we checked into Le Bonheur.  For this surgery the surgeon likes for the child to be in the hospital 24 hours before the surgery for monitoring and blood work.  Jonah had a blast in the hospital that first night.  I guess for him it was like going on a trip and staying in a hotel.  He played with the bed for most of the night.  There were so many buttons to push.

 

We tried our best to prepare him for what was about to happen.  We also tried to prepare each other. 

The surgery was over in about 5 hours.  The surgeon was very happy with how it turned out.  Jonah did well and should have a normal recovery.  We were relieved. 

It took an hour for them to get his room ready in the ICU.  We were relieved that everything was successful, but still anticipating what we would see going into the room after surgery.  It was a lot to take in.  There were so many tubes and monitors - so many IVs in his little body. 

After a few days some of the tubes were able to come out.  We got Jonah out of the bed and rode around the floor in a wagon.  He could say a few words but his voice was so faint.  It was painful to see him like this.  He was heavily drugged.  If he wasn’t sleeping or crying he had a blank stare and there was no spark in his eyes.  It seemed like progress was either non-existent or very slow.

We expected to be in the hospital for about 10 days.  After day 7 our cardiologist ordered an echocardiogram.  It was a test that would need to be done before we left the hospital but based on how lethargic Jonah had been she wanted to go ahead and get it done.

After talking with the doctor we knew we would be there for at least another week.  So right after the echo I left the hospital for the first time since we checked in just to go get a few things from home.  On my way home Katie called me and said to hurry up because there was a problem.  The echo showed a blood clot in Jonah’s heart near the Fontan and the doctors were going to discuss what to do about it later that night.  It was around 2 in the afternoon.  So I rushed home.  When I got home Katie called again and said they were taking Jonah into the cath lab right then and I needed to get there now.  So I rushed back to LeBonheur and made it there just in time to kiss his forehead and hear the doctor tell us all the risks involved.

The risks were high.  There were no great options.  But they all agreed they should go in and attempt to break up the clot.  I had a horrible feeling in my stomach.  We had prepared for the surgery, but not for any complications.  It was very scary. 

The goal was to break up the clot through a catheter using an angiojet, and then drip a drug named TPA through the catheter overnight to dissolve whatever was left. 

After the procedure the doctor explained they had busted up 40% of the clot and they were hoping the TPA would take care of the rest of it that night.

Around midnight things had settled down so Katie and I went to the cafeteria and ate a couple of cheeseburgers.  The last few hours had been really intense and we were hungry.  After that we went back to the room and the nurse was explaining all the new tubes and IVs and told us they would take really good care of Jonah that night.  So we went to bed.

Every night we slept to the sound of Jonah’s heartbeat.  Actually there were a lot of sounds – and we just got used to it.  Alarms would go off – we would sit up and ask the nurse if everything was alright – then lay back down and try to sleep. 

It was the middle of the night.  The monitor was beating faster than normal.  We knew what normal was at this point and this was not normal.  Throughout the night Jonah’s heartbeat got faster and faster.  Something was not right. 

Over the next few hours Jonah would develop a huge hematoma in his thigh.  60% of his blood went to his thigh.  His leg got so big I could only look at it a few seconds at a time.  We didn’t know how serious it was.  Was he going to lose his leg?  Some of the nurses were crying.  Katie was crying.  Our cath doctor was called in early and immediately started putting pressure on his leg.  It was frantic.  People were moving quickly.  Our cardiologist got there and tried to calm us down.  For a few hours the scene was very intense.

Eventually the bleeding stopped.  He spent the next 2 days on the ventilator just to let everything calm down.  After the breathing tube came out progress was slow but steady.  Eventually life started coming back into my son’s eyes and we were able to leave the hospital.  We were there for 3 weeks.

Let me take this opportunity to say how thankful we are for the facilities and staff at Le Bonheur.  They went out of their way to keep us informed and comfortable during our stay there.  And the way they cared for Jonah was heart-warming. 

Looking back on it now – it’s hard to believe.  He has made a full recovery.  He recently celebrated his 5^th birthday.  He started home school about a month ago.  He loves math.  He loves Mario and Louigi.  He loves cheeseburgers.  And thanks to one of our friends he now loves Chuck E Cheese. 

We are so thankful for his progress over the last few months.  He’s an amazing child and his future looks positive.  But I think we all know the story had potential to be very different.

I never heard how many units or how many blood products Jonah needed while we were there, but I know I saw a lot of red bags and FFPs during those 3 weeks.  It was amazing to see Jonah’s body respond as the doctors would give him blood.  He obviously needed blood after the clot in his leg.  And then at other times they would use blood to regulate certain vital signs.  They used blood products the same way they used other medications.  If they didn’t like something the monitor was showing they would order more blood. 

So I really started to understand that there is life in those bags.  People really depend on the blood supply.  We didn’t have to postpone the surgery because the blood supply was low.  We didn’t have to deal with a tragic situation when Jonah lost 60% of his blood.  The blood was available.  It was right down the hall.  There was no waiting.

Actually, I can’t imagine what it would have been like if the blood were not available.  Children with Jonah’s condition are only eligible for this surgery for a short time period.  In other words, the older you get, the more resistant your body is to this procedure.  The window of time is very narrow.  In fact, if Jonah were born in the United States our cardiologist would have done this surgery a few years ago.  So how awful would it have been if he made it this far, survived multiple open heart surgeries in Hong Kong, came to America and then had to wait for the blood supply to be replenished before he could have the surgery. 

What if that morning when life was bleeding out of my son, the doctors said I’m sorry, there is nothing we can do.  We’re out of blood. 

Thanks to the efforts of everyone in this room, we don’t have to ask those questions today.  Thanks to you, when I get home from work, as long as Little Einstein’s or Diego is not on, I am greeted with hugs and smiles from my little boy. 

I know many of you start your day very early in the morning – especially you who work the mobile drives.  But when you have a hard time waking up, and it’s just too early in the morning – remember because of what you are doing I am able to kiss my boy before I leave for work.  Do you realize that?

You are impacting real lives in our community.  The work you do collecting and recruiting may seem like it’s just another job – but you are saving lives every day.

At my job at International Paper things get stressful.  But every once in a while I have to remind myself it’s just paper.  No one is going to die if they don’t get their paper!

But when you go to work you must remember people’s lives are depending on you.  You may not get the same publicity and recognition – but Lifeblood has the same “hero status” as police officers and firemen.  Phlebotomy may not sound as glamorous as pulling a child from a burning building.  And going to North Eastern Arkansas for a mobile drive may not sound as exciting as chasing down armed bank robbers.  But believe me when I say you are all heroes. 

Without Lifeblood our community would suffer. 

So I want to thank you again for letting me share my family’s story.  But mainly I want to thank you for what you are doing to sustain the blood supply in our community. 

You know, I think for most people the blood supply is like electricity.  You don’t even think about it until it’s gone and you need it.  Think about how dysfunctional we are when the power goes out!  We go around the house looking for candles and sometimes will try to turn the lights on so we can find the candles but then we forget that’s why we need the candles because the power’s out.  The air is out.  It starts getting hot.  There’s no TV.  We feel like life is on pause until everything comes back on.

But in all seriousness, when the blood supply goes out, life IS on pause.  Life does stop.  When faced with an accident or emergency surgery, you can’t wait it out.  You can’t just wait for the power to come back on. 

The Mid-South is very fortunate to have Lifeblood keeping the power on for our blood supply.  Your efforts are making life better for so many people.  Thank you for what you are doing, and thank you for your commitment to our community.

Jonah is 5!!!

I'm so sorry for the absence on the blog.  We have been trying to keep up with a VERY active little boy.

Health wise he has been better than ever.  The surgery was definitely a success despite all of our setbacks.  Thankfully, from what they can tell, he does not have a blood disorder.  He is still on blood thinner and getting that all worked out has been somewhat of a headache.  We are constantly changing the dose.  He has done so well when they have to take his blood.  Such a brave boy.  We are still keeping a close eye on him due to the fact that he is on blood thinner.  That has been harder than before because he has so much more energy!!!  We are thankful for that, but tired:)!

 

Thank you all for all the prayers across the world.  I wish I could hug each one of you.  We definitely felt it and you played a huge role in our son's story.  We are amazed at how many people were praying for us during that time and continue to pray for his full recovery.

On Labor Day our boy turned 5!!!  We decided to take him to St. Louis for the weekend and it was great!  We went up in the arch.  He LOVES elevators so this was a real treat.  He is definitely not scared of heights!  See how happy he is?!

We did some shopping and a lot of eating!  We also went to the City Museum.  B and I have been before and it is an awesome place.  J really enjoyed it, but I think in another few years he will enjoy it more.  I can't even explain this museum.  Just look at the roof!!!!

It is unlike anything I have ever seen or experienced.  You really need to check it out for yourself.
J wanted to ride the ferris wheel SO badly.  It took us three tries (due to rain), but we finally made it on and he was in heaven.  He kept saying "this is the best ride ever!"

We really LOVE St. Louis and can't wait to go again.

My parents decorated the kitchen while we were gone.  J opened most of his presents when we got home Monday night.

He kept asking us where our presents were.  I think he was just shocked that all of this was for him.  This is the first birthday he hasn't had to share with at least two other boys.  The orphanage celebrated all the September birthdays on one day.  While I can understand that is easier on them and I definitely don't fault them for doing that, it is was awesome to see him so happy on HIS day!  This morning he woke up and said "I'm still 5?"  Sweet boy. 

We are having a small party Friday afternoon and then our families will come over Saturday night for a cookout.  We are loving celebrating our boy.

Stay tuned...more to come on the blog.  I will try not to go so long between posts!!

Best Small Group Ever!

We're on the 10th floor of the hospital.  One of our friends came up just for a visit this afternoon.  All of a sudden she looks out the window and says, "Hey, what's this?"  So we go to the window and see what you see in these pictures.  It was all set up by our small group.  They are so thoughtful and fun. 

Thank you guys!!  We will never forget this!!

Long Update

***WARNING***

This is a long post and it is very descriptive.  If you do not want to know all the details of what has been going on, please don’t read.  No pictures.

Things have been rough here.  We experienced the worst 48 hours of our life.

I will back up to where we left off.

So Monday they moved us up to the ward – a regular hospital room.  We were glad for another step (and for the private bathroom), but we knew we would miss our nurses and the care we got in the CVICU.

He was doing a little better.  We were able to get him up and moving a little more and he enjoyed playing for a bit in the playroom they have.  Getting him to take his medicine was a challenge.  He was so scared it would make him throw up and he would get so worked up about it.  We thought he was getting so worked up about it that he was making himself throw up.  He was able to keep food down until dinner time on Monday and Tuesday.

WEDNESDAY

Wednesday he was very tired and lethargic.  In rounds that morning, the doctors decided it was time for an echocardiogram.  I’m not sure if they decided that because he still was not progressing like they wanted or if it was just routine.  So at 2:00 on Wednesday they did the echo.  I knew the technician found something, but I didn’t ask.  B decided to run home to do a few things, get a few things, and take a break.  My mom came to stay with me while he was gone (I’m very glad I asked her to come so I wouldn’t have to be by myself).  About 30 minutes after he left our cardiologist came running into our room.  She told me there was a blockage in his artery that would probably need to be taken care of that night in the cath lab.  She said she would come back and talk to us around 5:00.  She told me to make sure B was back by then.  Then our nurse came in and said they were coming up to get him in the next 20 minutes!!  Our cath lab doctor came up and told me our options and told me all were risky and he really didn’t want to do the procedure that was the best option.  But everyone agreed that taking him in to have another open heart surgery at that moment was a very bad idea.  I could tell he was very concerned.  The option that we chose was for him to try to suck it out with an angiojet through a cath in his leg.  So I called B and told him to rush back.  Our nurse came in and was crying.  My son knew something was going on and he curled up in his bed and started to whimper.  So I stopped all the commotion and sat with him for a minute.  I told him it was ok to be scared but God would take care of us.  He put his arm through mine and laid his little hand on mine.  Then I got up and he reached his arm up.  I leaned down and he pulled my head to his shoulder (yes I’m tearing up just thinking about it).  So he and I made the trek down to the cath lab while my mom packed up our room to move back down to the CVICU.  Our nurse met B at the door to the hospital crying and took him the fastest way possible.  He made it just in time, but J had passed out and would not even respond to us (he was not on any medicine at the time).  There were three doctors helping our doctor and we knew it was serious.  Multiple doctors told us this was an emergency.

So we went back up to our room and moved all of our stuff downstairs.  And we waited, and waited, and waited.  They finally completed the procedure around 8:00 and our surgeon and cath doctor were both pleased.  They were able to get 60% of the clot.  They added a line in his neck to drip a drug called TPA (a clot buster) to break up the rest of it.  It took them forever to get him ready and get him back to the room.  I don’t think we saw him until 11:00.  He had more lines and machines connected to him than after his open heart surgery.  When we got to the room his stats were great and our nurse told me that their goal was to keep him like that all night.  There were at least two nurses in our room all night and sometimes three or four.  All of our lights were on all night as well.  But God gave me a peace and I went to sleep…facing the monitors.

THURSDAY

I think it was around 2:00 that I woke up and noticed his heart rate had gone up a bit.  Then I woke up every hour or so and watched in increase…115…130…145…160…180.  Then one time I saw one of the nurses mouth “what’s that?” and the other said “blood”.  I pulled the cover over my head because I just didn’t want to know any more.  Next thing I knew it was 6:00 and our cath doctor was there (early) in a panic.  He ended up holding pressure on my baby’s leg for an hour.  He also turned off the TPA and all blood thinners.  We later found out that the TPA unclotted the incision they made to insert the cath in his leg.  I don’t know how but 40% of the blood in his body gathered in the top of his leg and his groin.  Imagine that on yourself.  There was a HUGE bulge.  I knew that it was probably cutting off circulation to the rest of his leg.  Our surgeon came in and said this was a big problem.  Then our cardiologist came running in the room.  They unintentionally left her out of the loop and she was frazzled.  I asked her if he could lose his leg and she said “yes”.  There were lots of doctors and nurses in our room by then and also a bedside echo machine and team.   I told them I did not want him to lose his leg.  That would be tragic.  Of course I wanted them to save his life but I also wanted them to do everything they could to not let him lose his leg.  He has already gone through so much grief leaving his home and the orphanage family he knew.  I didn’t want him to grieve his leg after going through so much in the last 4 months.

 

If you do not have the image in your head right now, you can picture our son in a bed with monitors all around, on the breathing machine, a huge bulge in his leg, doctors and nurses all around him, and B and me in the corner watching everything go down.  It was a nightmare.

So they took him back to the cath lab to remove the cath in his neck and check on the clot.  We were hopeful that what little TPA he got did dissolve the rest of the clot.  It did not.  But the doctors were hoping his body would take care of it on its own with a little help from some blood thinner.

At the urging of our doctors, nurses, family, and friends we went home for a few hours.  This was a mistake for me.  It didn’t feel like home because my baby wasn’t there.  I tried to take a nap but all I could hear was his monitor going off in my head.  So I took a shower and then we came back. 

For the past few nights I have been terrified to go to sleep.  I keep wondering if I will wake up to another emergency.  Thursday night I did not sleep facing the monitor.  I did wake up every hour and would turn to our nurse and ask her if he was ok.  His leg continued to go down.  The blood was draining out and some of it was probably reabsorbed in his body as well.  They also started to feel his pulse in that leg again. 

Thursday was the worst day of my life.  I don’t think I have ever cried that much or prayed that hard in my life.

FRIDAY

We knew they were going to take him off the breathing machine.  His leg continued to get better and we were just praying the clot was going away.  Taking him off the breathing machine is a huge stress.  I knew how it would go down from his heart surgery.  First they start taking him off the medicine that had him paralyzed for the surgery.  His muscles would start waking up at different times and he would twitch.  The last thing that wakes up is always the gut (just FYI).  Then they would start taking him off the pain and sedation medications and he would start waking up.  It is painful to watch your child wake up totally confused with a tube down his throat.  He starts gagging and crying (but you can’t hear anything because of the tube).  He started mouthing “please, PLEASE!”  So he would wake up and while it looks like he is ready to come off the machine the muscles around his lungs aren’t awake yet.  So they put him back to sleep and wait for the next time.  The risk of taking the tube out too soon is that the muscles are not ready and he stops breathing.  Then they would have to reinsert it.  Ugh…why does everything have to be so stressful.  Thankfully three of my friends came up to help us through it.  It proved to be my breaking point so I just had to leave the room every time he woke up.  Natalie and Jana were in the room with B and J and I was in the hall with my friend Leticia. 

 Side note: Her daughter has been fighting cancer for 3 years.  Even though we are fighting different illnesses we are still able to relate.  Having a very ill child is very difficult.  It is hard to explain and it is hard to relate to other parents.  But Leticia and I can relate.  We have gone through some of the same emotions and rollercoasters.  I’m very thankful for her and praying daily for her princess.

So the breathing machine finally came out around 2:30 Friday afternoon and he did really well.  We had another fabulous nurse that day.  She was so sweet.  B left to go get some food for J since he was hungry that night and when they finally said he could have food the place was closed here.  It was time for our nurse to leave and she asked me if I was OK.  I broke down and told her how scared I was to go to sleep.  She was just the sweetest thing and just hugged me and listened to me. 

 

SATURDAY

He slept most of the day.  He needed his rest.  Although he had been “asleep” since Wednesday afternoon a lot had happened to his little body and it needed good rest.  When he was awake he was in pain.  He has a HUGE bruise on his leg and groin.  He also has two very large IVs in his other leg.

We got great news though.  They did another echo and the clot was gone!  That is seriously amazing.  We needed good news and we got it!  Praise the Lord!!

We continue to get excellent care here.  Our doctors have had a lot of guilt about all that has happened to us.  Our cath doctor said he wished he had stayed by J’s bed all night Wednesday night.  He felt so bad about what the TPA did, but everyone agreed that they would have done it again because they had to get that clot out.  We were told that a bunch of doctors got in a room and made a plus and minus list about whether to use TPA or not and J had one more plus than minus.  I can’t argue with that.  However we now know that we are the 1%.  99% of patients don’t have anything close to this reaction.  They have been calling us “worst case”.  Our doctors have never seen things like this happen before!  Our surgeon has been by every day and yesterday was the first day our cardiologist was not here, but she calls in the middle of the night to check on him.  Our nurses are great!  Everyone falls in love with J!  Nurses come by to see him all the time.

I have been asked multiple times if I was a nurse or in nursing school.  NO!  And I have never wanted to be.  However, my job is to be a Jonah specialist!  I like to know everything they are giving my son and what it does to his body.  He does have a lot going on and sometimes I get mixed up or forget, but overall I know what is going on with his body and what he needs.

Our friends and family have been amazing.  Thank you to everyone who has made us a meal.  The cafeteria gets old…and expensive.  Thank you for our friends who have visited.  Thank you all for praying.  That is what we need more than anything.  To our friends and family who are far away…we feel your presence.  Just like the nurse who hugged me and ministered to me that night.  I know that happened because someone was praying for me.  We are being prayed for around the clock because of all of our friends in other countries.  THANK YOU EVERYONE!!!

So where are we now?  Well we take things moment by moment.  He still has risky lines in his body, risk of infection, and we have to figure out if he has a blood disorder.  We know for sure that he will be going home on blood thinners and that will change everything we do.  I have to watch his diet and his body.  We will be working with doctors here and at St. Jude to figure out what is going on and what needs to be done.  There will be lots of check-ups once we go home.  I’m not sure when we will actually go home, but we are not in a hurry.  Going home too soon could be tragic.

Again, thank you everyone for praying. God has done miracles here and we are thankful for His provision in our life.

On another note, my grandmother fell yesterday and fractured her hip and broke her femur.  My thoughts are with her and she knows I love her.

Katie   

Forty-eight hours

It's been an interesting 48 hours. Here is where we are now:  The surgery was successful but it's taking a little while for Jonah's body to respond to the fontan.  Things are going a little slower than we (me and Katie) expected.  But the doctors are telling us the things that have been going on, mainly him not being able to keep any food down, are not abnormal. 

We are still in the CVICU tonight, Sunday night.  We've been telling ourselves we are OK with that and even though moving to the 10th floor would be good - moving there too soon would be bad.  So we can stay here as long as needed.  And actually Jonah said tonight that he loved it here.  It was random.  I think he was confused.

Yesterday was the worst day since the surgery.  Last night Katie and I were flat out drained.  I think we changed the sheets on his bed three times.  He just wasn't keeping anything down.  He's getting medicine and fluid through the IVs but we're also giving him some medicine orally.  He's used to that because he gets that at home 3 times a day.  He's actually a pro at taking medicine through a syringe and has never had a problem with that at all.  But then after he kept vomiting yesterday he started not wanting to take the oral medicine.  He would vomit right after taking the medicine.  So he thought it was the medicine making him sick.  So all day today I've had to hold his head still while Katie pushes the medicine in his mouth with him screaming the whole time. 

Also yesterday we put him in the wagon and pulled him around the floor. 

Monitors, chest tubes, and everything in the wagon.  It was good for him to get out of the bed and out of this room.  He was kind of glazed over from all the medicine but he said he was enjoying it.  After about 8 laps around the floor he was ready to go back to his room.  Since everything was unhooked from the wall we had him sit in Katie's lap.  It was such a beautiful moment.  The whole day he was unhappy.  He was tired of being in the bed.  He wanted to go home.  He was physically worn out from throwing up so much.  And then I put him in Katie's arms and 3 foot cherub came into our room and winked at me as he brandished a harp. 

OK, there was no harp.  But it was beautiful.  Right before my eyes I was seeing one of our greatest concerns about this surgery being blown out of the water.  We were really concerned that we would lose some of the attachment and bonding that had occurred in the last four months just due to the trauma of the surgery and recovery.  Honestly at one point we asked ourselves if he would even remember us after he woke up.  But it's all been proven to be worthless worry.  As soon as I put him in Katie's arms he stopped crying.  He was so peaceful.  He fell asleep pretty much immediately.  My thoughts at that point were not "he's our adopted son".  They were more like, "My son needs us right now and thank you God that we can comfort him and love him."

I guess one of the frustrating things about yesterday was that even after the wagon and the time in Katie's lap his stomach was still not well.  But after a long afternoon and night he did finally go to sleep and so did we. 

It would be very spiritual if I could tell you I prayed for hours asking God for help and begging him to just do something.  The truth is I was tired and all I said was, "God, please help us.  We need a breakthrough."  I think I am beginning to understand more about how the Holy Spirit prays for us when we do not know what to pray. And I'm also very thankful for people who are praying for us this week.

This morning Jonah slept a good bit.  He got a couple doses of morphine last night and that took some time to wear off.  Then they took another chest tube out this morning and gave him more morphine.  Yay.  So it was kind of a sleepy Sunday morning.  When the doctor's made the rounds today our doctor said the goal was to get him up and moving today.  So we took another wagon ride.  This time we went out away from the unit and into the hospital lobby.  He was OK with it but definitely didn't get that excited.  We also had him walk just a few steps.  Apparently the fontan doesn't really kick in until he gets up and starts moving around.  Thanks for telling me that 5 days after the surgery.  Actually I don't think he could have handled walking before today.

We had him walk from the bed to the wagon.  And a funny thing happened on the way to the wagon.  In transit he needed to have a BM. (ha ha, when have I ever called that a BM..)  Katie and I were both supporting him so he didn't fall.  The nurse was trying to keep all the tubes and cords where they needed to be and keep them from getting hung up.  All while we were trying to get Jonah on an adult sized handicap portable toilet.  I think all the emotion of the previous day got to me and I got the giggles.  Then we all got the giggles.  It was a needed comic relief moment.

After the wagon ride we just hung out in front of the room in the hallway.  We were trying to keep him from going to sleep.  So while he sat in the wagon Katie and I tried to entertain him.  We shot helicopters at each other with this toy that my work friends gave us.  Then we got Miss Charlie drunk by spinning her around and around in an office chair.  She's doing well.  Then I built nothing in particular with some blocks while Jonah looked at me like I would rather be laying in my bed.

Also today, he sat in my lap.  No cherubs or harps but it was a good thing for both of us.

He slept there for a half hour or so. 

We thought we were making big progress today because for dinner he wanted chicken noodle soup.  And he ate it and kept it down.  But only for an hour.  Things were going great.  He was talking and asking for more soup.  We were giving it to him slowly to keep from running into a problem.  Then we were going to get in the wagon again and come back and go to bed.  But as soon we got him up he started getting sick. 

We still took the final wagon ride but clearly with no wind in our sails. 

I still think we made progress today.  Oh, one other thing is tonight they took out another IV.  So he has his right hand completely free now.  Even though he got sick tonight, we did have him up more today and got him moving.  So that was good. 

Here is something awesome: some folks at our church got together and wrote out a lot of encouraging Bible verses on construction paper and sent them up here.  Even though we haven't put them on the wall (because we keep thinking we'll be moving to another room soon) I have read them all and I am very thankful.  Thank you guys.  We are not walking this journey alone.

Friday Update

The last 24 hours have been challenging.  Jonah's been throwing up and dry heaving for most of today.  Some of it is a response to different medicines and some of it is just his body getting used to the fontan.  We're still in the CVICU tonight.  But they are thinking we will move to the 10th floor tomorrow.  That will be a big step.  More tubes will come out and he will be more mobile.  He was talking a lot more today.  At one point he looked at me and said, "I ready to go home, Daddy."  He's definitely getting tired of being in the bed.  He's very interested in the possibility of riding a wagon around the floor when he is feeling a little better.  But today was all about drinking small sips of Sprite and waiting to see what would happen.

We continue to have great nurses.  We've had the same night nurse for 3 nights now and she was exceptional.  We have a different nurse tonight but she's doing really well right now.  Our child life specialist came by again today for about 30 minutes and just discussed how he's doing and how we are doing.  She has been telling us about a few post surgery opportunities for Jonah down the road.  There is a camp he can go to with other "fontans".  There is also a Reunion Day event where families who have stayed in the hospital in the last year can come back and visit with the doctors and staff.  It sounds like a fun event.  They are really trying to make this as pleasant as possible.  The only thing that has thrown us off is this morning I went down to the cafeteria and there were no cinnamon rolls.  Apparently they do not have cinnamon rolls on Friday, Saturday, or Sunday.  All I'm saying is a little heads up would have been nice :)

Katie's Momma Bear sense is in full effect.  You can easily see how the Lord has prepared her for this week.  She is pretty much laying in the bed with Jonah as much as she can.  The surgeon commented about that and said it helps the healing process.  And she's right there whenever he needs anything. 

The Lord is providing here.  I don't know that Katie and I are mentally out of the fog of being in this situation right now.  Jonah needs so much attention right now and it is keeping us busy and in the moment.  But we are being comforted.  We are being fed.  And we are being prayed for.  Many of you are praying for us and providing food and other things.  Thank you.   It is coming through. 

View of the hospital.

The only restaurant in walking distance

Making Progress

Things are going well.  Jonah has been opening his eyes a lot this morning and he's eating jello.  Also when the surgeon came around today he pulled one of the chest tubes out.  So that was good.  He's also been coughing a lot and that is good but you can tell he is in a lot of pain.  Everyone is saying he is doing great.

He asked for ice cream last night but then fell asleep before it was OK for him to have it.  He loves ice cream and it was good seeing his personality come out in that.

When he's been awake and hurting he has raised his hands toward Katie and I while we are leaning next to him near the bed.  He has IVs in both arms so he can't really move a lot.  But I really think he is raising his hands because he wants us to hold him.  We are trying to comfort him by talking to him and rubbing his head and his legs.  It would be awesome to be able to hug and squeeze him.  I can tell Katie is really having to restrain herself.  She's been getting in the bed with him a lot.  Anyway, it was good to see him reach out to us.

Since I've been typing they just took out the neck IV.  He definitely didn't enjoy that.  I was holding his legs down.  I feel like I need to go out in the hall and breathe into a brown bag or something.  I don't know how these nurses do it all day.  He's back to sleep again now.

So we're making progress.  Tubes are coming out.  He's coughing and crying more.  These are all good things.

Here is our room from the hallway.  Note the ice cream cone.

Here is another view of the room.

Breathing tube is out

They were able to remove the breathing tube at 10:30 last night.  He did well with that.  He slept pretty much most of the night.  I think one of the goals today is to get him to eat a little bit.  He woke up a few minutes ago and was really unhappy.  Katie is lying in the bed with him. 

Update on Jonah's bear "Miss Charlie".  She is also breathing on her own now and is ready for some solid food.

Day One update

Surgery-wise things have gone really well today.  One minor issue came up after he was out and that was an air pocket in his lung.  So they put in another tube to drain that.  Right now he is still hooked up to everything that he basically came out of surgery with.  So there are a ton of wires and tubes going all over the place.  They have tried to remove the breathing tube a few times but he’s just not up to the level they want him to be when they do that.  In my mind we can exhale a little bit more when they remove that.

The doctors and nurses at this hospital are exceptional.  They have gone out of their way to make sure we are informed.  And they are taking great care of Jonah.  It is really beyond words how nice and comforting the staff are here.  So thank God for that.

Katie and I have been pretty tense the whole day.  Actually I don’t remember many times in my life that were more tense than today.  I don’t know what else to say about that.  We are still kind of tense just waiting on the breathing tube to come out.  All the doctors are assuring us that everything is normal and I believe them.  But seeing our boy in this condition is overwhelming.

The nurse that took care of Jonah for most of today told us HE was adopted.   And one of the doctors who assisted the surgery was also adopted.  At one point there were more people in the room who were adopted than not.  That is cool any way you look at it.

At a few different times today the nurse would put in for an order of blood product from the blood bank.  That was awesome to be on the receiving end of a local volunteer blood donor.

We are thankful to our parents and Jana who were here the entire day.

This is only day one and it is probably good to remind myself of that right now.  This was the right decision for him and should improve his quality of life.  And thank the Lord this time around he has parents and family who will be here with him and help him along the way. 

He was funny all day yesterday.  He pushed every button on the bed and had it going all over the place.  He did really well even leading up to going back this morning.  He’s a brave little boy.

Update from the hospital - 1

The day is finally here. Yesterday went as expected. They took a lot of blood, put in an IV, did a few chest X-rays, and did an EKG. He did really well. He has been nervous at points. This morning they came and got us around 6:20. We went down with him until they gave him the anesthesia at 7:00. They started the procedure at 8:30. We are doing well. Didn't sleep great but ok. I'm just so glad he doesn't have to go through this without parents. I have planned for this and I will be strong for my baby and get him through this. I kissed him a bazillion times in the past 24 hours and I keep telling him that we love him and God is taking care of all of us. Please pray for his recovery. That he remains calm and understands what is going on. Leaning on Him, Katie

One Week

It is finally here.  We check into the children's hospital Monday.  When we first scheduled the surgery it seemed so far away and all of a sudden it is right here!!

People have asked if he is ready.  Well the answer is "no".  He knows nothing about it.  If he did he would be worrying every day.  Our Child Life Specialist (basically an awesome social worker at the hospital) recommended we tell him 4 days before.  So we will talk to him about it on Thursday.  Then he and I will go to the hospital on Friday and she will explain in more detail and answer any questions he might have.  She will also take us on a tour of the hospital.

Am I ready?  I don't know.  There are definitely times during the day that I just sit and stare at him and wonder what he is going to be like after the surgery.  What I fear the most is that this surgery will change him.  Of course I want it to change him for the better.  I want him to have more energy, more stamina, and hopefully go off the darn water pills.  But I don't want it to change his nature.  I pray he is still as loving and affectionate after this and this does not interrupt our attachment process.  I know that probably sounds like a weird thing to be scared about, but I'm a mom now and I have to worry about something...right?  I'm not worried about the surgery itself.  I'm a little worried about the recovery and how I'm going to comfort him when he is in so much pain.  I'm just praying for God, the ultimate healer, to speak to him in ways I don't understand.

I spoke with our doctor today and here is the basic schedule which could change at any moment while we are there.  We will check in on Monday to the ward (normal hospital rooms).  Then Tuesday we will say good-bye to him at 7:00 for the surgery.  He should be brought to the CVICU (Cardio Vascular Intensive Care Unit) between 11:00 and 12:00.  He will stay in the CVICU for a few days and then hopefully move back to the ward for a week before we go home.  So we are planning on being at the hospital for 10 days.  While we are there we will be updating the blog frequently.  We will NOT be posting anything on Facebook. 

We might post some pictures here.  At first I didn't want to post pictures, but reading blogs and seeing pictures of other adoptive moms who have gone through the same thing has really helped me.  I want to return the favor and help other people who might come accross my blog. 

So since my son will miss out on a lot of summer activities, I decided to try to give him the summer he is going to miss.  We have done a lot, but at the advice of some loving friends (you know who you are) I scheduled in some down time at home.  After all...he really does love that the best! :)

Here is what we have done so far!

First up was a trolly ride downtown (which he LOVED) and his first baseball game.  He was very concerned about the mascot at the baseball game!  He did not want anything to do with him.  He was able to enjoy some of the game though.

Then we met some friends at the zoo on a beautiful day.  As you can see it was a little cold!

Then, on a whim, one day I took him to see the trains on the square.  He really enjoyed going in them.





We also went to the nature center!  It was beautiful.

B took him on the monarail downtown on Saturday and he had a blast!!

Today we went to the Fire Museum and he hung out with his best buddy, Noah!  The thing they are in moved up and down so they could "put out" the fire!  They LOVED it!!







There have also been plenty of trips to the park. 

And the Wii is a big hit!!

Still on the schedul:

The Pink Palace

His first IMAX movie (I hope he isn't scared)

Another trip to The Children's Museum

A trip to see the ducks at The Peabody

And a day at home playing games and eating pizza!!

Please pray that we have a great week and that J stays well so that the surgery can be performed on schedule.  Also pray for his understanding of everything that is going on. 

We have already seen miracles in his life and ours and I know God has big plans for our little boy.

Katie