Update on Jonah’s Journey and ER Visit Last Night – #PrayForJonah!

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Jonah’s Journey 

Thank you all so much for your prayers last night as we had to call 911 for Jonah. As the paramedics arrived and they did the EKG, you could tell they were somewhat dumbfounded by what they saw. Jonah’s case is very rare and his EKG looks like an “old person’s EKG”. Not something you would see in a 13 y/o athletic boy.

He came downstairs a little after 10 p.m. and was as white as a ghost.  He said he was short of breath and having severe chest pains – a 10/10.  We called 911 and text Dr. Suarez.  This is something we don’t want to mess around with.  There is little research on Jonah’s condition, so we don’t want to take any chances.  He is only the 6th in the world with this condition.  

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Jonah is in junctional rhythm ,which means the upper chamber of his heart is not “firing” properly – the electrical part.  This is one thing they were concerned about when they patched his right atrium. Dr. Si, the surgeon, had told us, that it was possible that Jonah would need a dual chamber pacemaker if this happened.  

As I was sitting beside him in the back of the ambulance, I just realized that this is our NEW “normal”. That what life once was, is no more. Jonah will have many hiccups in this road and we just need to be able to go with the flow.  We just need to be able to face whatever comes and that is sobering to realize.

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I can tell you this has taken a toll on me. Some days I feel emotionally drained. I worry about him and pray that God will make him “healthy” again. I can’t wait for the day when I can just sit at one of his soccer games and just watch him be “Jonah” again. Playing soccer, doing what he loves to do.  

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Some days I think it is easier for Jamie because he has little medical knowledge. I know he worries about him, but I don’t think he completely understands the complexity of exactly what is going on. I can tell you, he is glad he doesn’t either hahaha and sometimes I wish I didn’t know as much as I do :-) 

We are blessed by all the wonderful physicians God has placed in our path. We were able to text Dr. Suarez a copy of his EKG and he was able to talk to the paramedics and call ahead and speak to the ER physician and give them Jonah’s history.  That was a huge blessing.  

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We knew Jonah was one a kind early on, but oh my goodness, this is ridiculous LOL :-) I guess we just need to know that God is in complete control and He has Jonah’s life already planned out and we need to Trust THAT Plan. As much as we know this, we still try to take back control and I think God is reminding us, HIS Plans are better.

All of Jonah’s blood work came back normal – Praise God. We got home about 2:30 a.m.  It is strange to watch Jonah know how to read his own EKG now.  They asked him last night if he thought he was going to go into the medical field and he said “no way”.  They then asked him what he was going to do and he said “Play soccer”.  This kid loves soccer about as much as he Loves Jesus! 

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My prayer is that he will be able to play soccer for many years, that God will heal his rhythm back to normal sinus rhythm, and that he will live a long life full of Joy.  Jonah has an amazing testimony and I know he will use that for God’s glory.  

As always, your continued prayers are appreciated.  Prayers for Jonah’s healing and pray for our family as some days we are just exhausted.  We appreciate each and everyone of you.  Today, we will embrace our new normal and Thank God for all the blessings he has already given our family .

GOD IS GOOD. . . ALL THE TIME!!




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A Setback to Jonah’s Journey – #PrayForJonah

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Jonah’s Journey – #PrayForJonah

Today Jonah had his first official cardiology followup app’t since his surgery. It always makes us laugh when the room is full of doctors because everyone is so intrigued by Jonah’s heart condition. If you have been following Jonah’s Journey, you know he is only the 6th person with this condition in the world. 

Dr. Suarez told Jonah today that everyone will be monitoring him closely as he will be setting the standard.  He said normally they know what to expect, but since they have little to no information on his condition, his journey and aftercare will be so important.  

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Jonah has been doing so well so we went into the app’t thinking the doctor would say he is “Perfect” and give us the instructions to him going back to soccer, etc. Unfortunately, that is not what happened. Jonah had an EKG done and the cardiologist came in and let us know that it has changed.

He is in junction rhythm, which means the upper chamber of his heart is not working. The doctor said this could be because of him just having open heart surgery but more likely than not it is because his right atrium is patched over. Part of the surgery was making all of Jonah’s blood combine, meaning both the red and blue blood now go to the left atrium and no blood enters the right atrium, because of the narrowing of the coronary sinus.  To let you know how rare Jonah’s condition is, there is not even a name for it. 

We were told that this was a possibility when he had the surgery, but because this procedure is not a standard procedure, they were not sure. The doctor ordered a 48-hour Holter monitor so they can watch his rhythm and see if maybe he goes in and out of normal rhythm with the junction rhythm. If he stays in junction rhythm, he will need a pacemaker implanted.

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This was quite a blow to me and Jamie as we truly just want Jonah to get back to normal life. I cannot say enough how much adversity he has already overcome that it would be nice to go to the doctor’s just once and them say “Everything is good.” We keep reminding ourselves that it could be worse and we need to be so thankful.  Many will say the pacemaker is an easy fix, but remember, they don’t really know if that will actually “fix it either” because of his condition being so rare.  

Of course, Jonah’s first question was “Can I still play soccer” LOL :-) He was told he can go back to full contact practice April 6th and then about two to three weeks later, can play in games as long as he is feeling up to it. He told Jonah even if he does need a pacemaker, he will still be able to play soccer, this will just be a reassurance that his heart rhythm stays normal.  

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They put the Holter Monitor on Jonah and said by Friday or next Monday, we should have the results and know what the game plan is. On the way home, Jonah said I thought my heart was “fixed”. Then he said, what do you think God’s plan is? He did not say this questioning if God had good plans for him, but wondered what I though God’s plan was for him – His testimony, etc.  Unfortunately, I had no answer for him, but I did tell him that God’s plans are ALWAYS better than ours.

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The cardiologist did tell us that this could just be a temporary response and his heart could go back into normal sinus rhythm, so I told Jonah we just need to pray and ask all of you to join us in prayer that his rhythm is fixed. We know we serve a BIG God and all things are possible with him.

 

Thanks everyone for your continued prayers, love, and support. We appreciate you all.

GOD IS GOOD. . . ALL THE TIME!!




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Jonah’s Journey – Three weeks Postop Open Heart Surgery!

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Jonah’s Journey

It is hard to believe that tomorrow will be three weeks since Jonah’s open heart surgery. Last night he went to soccer practice. He is not allowed to practice, but he wanted to be in the dome with his teammates and coach. This is what makes Jonah so happy. He has such a love for the game.

Jamie said all his teammates were so excited to see him and his coach gave him a BIG hug. They were all excited to have him back, even if it was just to watch the drills.

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He was not allowed to go back to school until today so Sunday and Monday night he had his one soccer teammate, Cole, stay with him. Cole was on springbreak and it was good company for Jonah. To be able to feel like a 13-year-old kid again without mom and dad hovering over him.

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We went to Schmucker’s for lunch and pie yesterday since we knew he would be back in school today. We had a nice time and enjoyed our lunch.

We are seeing him gain his strength and appetite back every day. It is amazing to see how he has snapped back so quickly. It truly is a miracle in my eyes.

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Jonah may be young, but he knows that God is using him to be a light to so many.  He knows he has an amazing testimony to share with so many others. A testimony of God’s faithfulness and hope.

A testimony that shows that even in the darkest and scariest of times, you can still come out on top with God on your side. It might not always look the way we want it to, but we need to know that it is part of God’s plans.

The hardest part for Jonah has been not playing soccer. He has a passion for this game like none I have ever seen. He is happiest on the pitch with his teammates. He loves everything about the game. He told us last night, he cannot wait until the first game he can play in. . . it is only 34 more days. . . Wednesday, April 19th.

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This is a day that will be full of many emotions, but mostly of God’s grace. How Jonah has overcome yet another obstacle in his life like a true warrior. He didn’t ask to be a warrior, but he fights like one, because he knows he has a BIG God.

Thank you all for your cards, prayers, well wishes, love, and support. We cannot even begin to thank you all enough.

GOD IS GOOD. . . ALL THE TIME!!




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Jonah’s Journey – Two Weeks Postop Open Heart Surgery!!

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Jonah’s Journey #PrayForJonah

This was the shirt that we got for Jonah before his surgery with his soccer number. Jonah is a strong kid that has overcome so much, and we knew that his “broken heart” wasn’t going to keep him down.

We still cannot believe it has only been two weeks since his surgery. It has been such a roller coaster and we have had a few ups and downs, but overall he is recovering well.  It has helped having others encouraging us and walking right beside us.  

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He had an echo yesterday just to make sure everything looked good. The cardiologist called us last night to let us know everything looks great. The unroofing of the coronary sinus looks AWESOME!!!

Jonah is getting stronger every day. We are starting to walk 1-2 miles a day. He is actually able to walk faster than Jamie and me at a normal pace. He never ceases to amaze us with his ability to overcome ALL odds. He told us again, that he knows God is giving him a BIG testimony to share.

I cannot thank everyone enough for all the love, support, and cards that were sent to him. I truly believe this has helped his recovery.

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Sunshine Communities Greenhouse made him this huge card. To see the smile on his face when he opened it and the love that was put into the card was so cool.

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I think we often take for granted how small acts of kindness can lift a person’s spirit. The unending LOVE Jonah has received has been instrumental in his recovery. To know you are loved and cared about so intensely means the world to people and it only takes a few minutes to let someone know you care or are thinking about them.

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Jonah will be returning to school on Wednesday the 15th with many limitations, but he is so ready. He misses all his friends from school. He has a follow-up app’t with the cardiologist on the 20th and they will determine from there when he can return to soccer. That is the hardest thing right now, he wants to be on the field with his teammates again.

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I told Jamie, I know I will be so emotional at his first soccer game because, once again, he has overcome insurmountable odds to be the Miracle GOD made him to be.  We are so thankful that Jonah is a part of the Michigan Wolves-Hawks Club.  This is a club like no other.  We have played with other clubs, but I can tell you, this club cares about it’s players, not just on the field, but off the field too.  They have all been instrumental in Jonah’s recovery from the coaches to his teammates, to all the other teams at the club – THANK YOU!!

All the while knowing he will use all of this for God’s glory :-)

GOD IS GOOD. . . ALL THE TIME!!




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Jonah’s Journey – Day #5 Postop and Home Sweet Home

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There is Jonah’s scar from his open heart surgery.  I cannot believe how clean it is.  Dr. Si is an amazing surgeon.  Thank you C.S. Mott Children’s Hospital for the amazing care Jonah received.  

I cannot believe that 5 days postop Jonah is home from the hospital. I cannot even begin to tell you how happy we all are. It has been such a roller coaster and I am sure we still have many more road bumps along the way, but one thing has remained constant, our faith in God.

During this whole journey, we have been blessed by so many of you supporting us through this dark time. It has been scary, but as Jonah said, he knows God has a story for him to tell.

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I have sat back many nights and just cried tears of joy as I have watched so many surround us. Jonah has had daily visits from his soccer coach, teammates, and parents. I think that has helped Jonah the most knowing he is so loved.

Each day they came to visit, they would encourage him to walk and they would walk right beside him.  He was never by himself.  They are not just teammates on the field, they are his teammates and friends off the field also.  

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Last night some of the boys and their parents came up. They even brought me a bag of chips (yes, I can NEVER have enough) and blizzards from the DQ for everyone. Jonah was smiling from ear to ear. Several of the boys were sitting in the bed with Jonah and it was just so precious to see how they all were there for him (and us)

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This is just a small glimpse of the visit last night. I could tell that Jonah was so full of JOY. To know that that many people care about him and even though he is still in pain, he felt “normal” again to be surrounded by so many of his friends. This is what has kept me going every day. We have shed many tears, prayed many prayers, knowing God’s timing is perfect and His plans for Jonah are better than ours. It hasn’t been easy, but we have stood on our faith. I have also been reading him the messages from so many of you and he wanted to make sure that you all know he said “Thank you”. It has truly touched his heart to know so many care and love him.

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Our daughter, Lara, arrived home from France and was able to spend some special time with Jonah.  Her boyfriend got him this autographed jersey. He was excited about the jersey, his sister coming home, and about going home.  

We got home about 2 p.m. and he has been resting comfortably. He said it just feels good to be home. We couldn’t agree more. Jamie and I would personally like to think each and everyone of you for your prayers, your love, and your support during this time. Thank you for praying us through this entire time.

He still has a long road to recovery, but he is a warrior. His first question to the doctor today was “When can I go back to soccer”. Doctor told him he can start practicing in 4-6 weeks and playing in games April 20 . He was so excited, because they have a soccer game April 21, 22, and 23. He is ready to get back out on the field!!

I told Jamie, I know I will be so emotional at his first soccer game. To know, once again, he has overcome all odds and is a Miracle and he can use all of this for God’s glory :-)




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Jonah’s Journey – Postop Day #3 and Urgent Prayers Please!!

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#PrayForJonah

The image above is perfect and says exactly how I feel about Jonah. He is such a warrior and has been since birth. He has overcome all odds already and now to have to undergo this open heart surgery and fight. He has chosen to be a warrior even after being knocked down numerous times, because if not, he is allowing adversity to defeat him. Jonah is tougher than that.  He is a person that I look up to.

He may be young, but he has more strength than most people I know. He also has more faith in God than many adults will ever have.  He is an example by the way he lives his life and by the faith he has in God.  We are proud God hand-picked us to be his parents.  

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The doctor and nurse came in today and said his chest x-ray has not really changed a whole lot. He still has fluid 0n his right lung and diminished breath sounds. They have continued the Lasix again today to see if that helps and recheck chest x-ray in the morning.  They said it can take a couple days before you see significant improvement. 

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They also told him to get up and walk some more as this would help with expanding the lungs.

They took Jonah off the heart monitor because everything was looking good, but the doctor listened today and heard what sounds like an abnormality and arrhythmia or murmur.  They are hooking him back up to the monitor to see what is going on. They are somewhat concerned, so I am asking all of you to please join us in prayer that it was nothing major.

This has been such a roller coaster and every time they tell Jonah one more setback, I see in his face disappointment, but he keeps on keeping on. He is such a warrior and knows God is in control.

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It has been such a blessing to have so many of his teammates stop up to see him. His friend, CJ, came today and went on the walk with him. Jonah walked around the unit. It is amazing to see him gain his strength every day.

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I think what has touched me the most is this may be a soccer team, but I have seen that they are Jonah’s “team” off the field too.  They are here at the hospital to cheer him on and support him as he gets out of bed and walks.  As he is struggling and in pain, they are right beside him pushing his oxygen tank and his IV pole.  Because the Michigan Wolves-Hawks Club is more than a soccer club, it is a family. When his teammates left today, Jonah said “I am so happy”. 

He also had a special visitor last night. His soccer coach came and saw him and it was so cool to see the smile on Jonah’s face. The only people Jonah has requested to see besides his siblings was coach.  We are truly blessed to be a part of the Michigan Wolves-Hawks Soccer Club, they not only make better soccer players, but they truly care about the kids. It honestly feels like one big family, one big team on and off the field, and we are so grateful that Jonah has that (and we do too). 

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Jonah gets his chest tube removed today at 1:30 and we are asking for prayers for that also.

Thanks in advance everyone for joining us on this journey and praying us through. It means more than you all can ever imagine. We love you and Jonah said he wants you all to know he said “thank you”

GOD IS GOOD. . . ALL THE TIME!!




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Jonah’s Journey – Postop Day #2 – A Setback – #PrayForJonah

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#PrayForJonah

Last evening about 6:30 they moved Jonah to the regular floor. His care up to that point was beyond amazing. Thank you Todd, Mike, and Sarah (his ICU nurses).  The care, compassion, and love he received from everyone was beyond our expectations. They made sure Jonah had everything he needed and then some.  When we got to the floor and settled and our night nurse came in, it was not what we had expected.

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Pain management became a problem and it was a long night. There are NPs and docs in the hospital 24 hours/365 days a year, but for whatever reason, his nurse didn’t see the need to follow up with his pain. Jonah asked me to sit next to him in the chair and about every 3-5 minutes, he would say “Mom” just to make sure I was there. He then asked me to hold his hand.

Because his pain was so bad and he did not have a spirometer to expand his lungs, Jonah has struggled with his oxygen saturations. Finally about 4:30 a.m. he fell asleep until about 7:20 a.m. Praise God.

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Now of course, I didn’t sleep, because I sat there watching his vitals and him to make sure he was doing okay. When he woke up, his morning nurse, who is AWESOME, got him a spirometer. He did that a few times and decided he wanted to sit in the chair this morning. He said he doesn’t like the bed lol :-) 

He had a bowl of cereal and 2 sausage links, which was great considering he is not even 48 hours out of surgery. Dr. Si came in to see him and informed us if we had any more problems to have them page him and he would take care of any issues that Jonah’s pain control is first and foremost for his recovery.

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About 10:30 Jonah started having significant pain in his right side and was leaning over, favoring that side. They took him down for a chest x-ray and it showed he has fluid in his right lungs, but his lungs look like they are expanded well.

While he was down there, I text Dr. Suarez, our physician in Toledo just to ask his opinion and he called me back immediately. I cannot tell you how blessed we feel with him. He is AMAZING. The compassion and love that he has for his patients is beyond what any patient could expect. He shared to have Jonah give 3 good coughs an hour and to do 10 breaths in the spirometer per hour. He suggested Jonah use the pain pump a few minutes before doing this so it is not as painful.

When we got back to the room, the doctors came in and said if he can walk a little bit today and eat, possible have a bowel movement, they can remove his chest tube tomorrow. In addition, he will get two doses of Lasix today to try to help get rid of the fluid. Your continued prayers are so appreciated.

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Jamie and I are both exhausted. Neither of us want to leave because if one of us walks out of the room he gets very anxious. So please pray for our strength also as we truly are mentally, physically, and emotionally overwhelmed. We know God is in control and is right in the midst of any setback we may come up against.

Thank you all from the bottom of our hearts.

GOD IS GOOD. . . ALL THE TIME!!




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Jonah’s Journey – Preop Day #1 PM report -#PrayForJonah

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#PrayForJonah 

Jonah has made so much progress today. About 11 a.m. they decided to have him sit in a chair. He sat in the chair and then told us he just wanted to stand up for a minute.


I love this picture because it reminds me of our Heavenly Father’s Love for us. Jamie had his arms around him holding him up and kissed him on the forehead and said “Love you Buddy” and Jonah said “Love you too, dad”. It was truly priceless.

I think we all can relate to the love we have for our children, but when they are sick, we are reminded even more just how fragile life is.

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Jonah started having some problems with his oxygen sat dropping pretty significantly and diminished breath sounds on the left side. They weaned him off his morphine as they were thinking that was putting him in to deep of a sleep and was not allowing him to take deep enough breaths. He then told us he was ready to take a walk.  He first sat on the end of the bed and is showing off his gift he received from Aunt Jen and Uncle Greggie. He loves it. He has been using the stuffed animal to push on his chest and hug when he has to cough, which is helping him significantly. Then the most exciting part, he said he wanted to go for a short walk. 

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I LOVE this picture. This was his day nurse, Sarah.  She was such an angel.  The care we have received from Todd, Mike, and now Sarah has been amazing.  I cannot speak highly enough of this hospital.  God has blessed us abundantly.  

He walked out of his room and a short distance and then back to the room. When he got back to the room we were going to let him lie in his bed, but he decided he wanted to sit up again.

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To make his day complete, he got a quick visit from his FAVORITE nurse practitioner, Veronica. We met her when Jonah had his third heart cath up at C. S. Mott Children’s Hospital and we all LOVE her.  

Doctor has ordered Lasix to help with the fluid around his lungs and put him on an oral narcotic. We are asking for your continued prayers for his recovery. He still has the chest tube, which is causing some pain, but overall, he is doing amazing. He is getting ready to go up to the regular floor now.  Praise God!

Thank you all for the love, support, and continued prayers. They are so appreciated. Love you all.

GOD IS GOOD. . .ALL THE TIME!!




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Jonah’s Journey – Day 1 Postop Open Heart Surgery!

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#PrayForJonah

Jonah giving a thumbs up to let you all know he is doing well :-) 

Jonah finally started waking up about 10 p.m. last night and talking to us. The chest tube was causing pain, but other than that he was feeling pretty well. He started drinking a quite a bit of water, which has helped to keep his kidneys functioning.

Lara, our daughter, from France facetimed him at about 4 a.m. and he was wide awake talking to her. He is still on 1 liter of oxygen and is doing AWESOME.

He has his pain pump but has not had to use it too much.

Dr. Crowley just came in and said Jonah is doing well. He said maybe two days ahead of time and if he continues on this road, he may be able to be discharged Monday!!! PRAISE GOD from whom all blessings flow!

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They are removing his arterial and central lines today and also his catheter. He is also allowed to increase his diet as tolerated. Then, he will have to walk a few times today. He is having a hard time taking deep breaths, but Dr. Crowley said that is very common after open heart surgery as the lungs collapse slightly.

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Your continued prayers are appreciated while he recovers. Thank you all so much. #PrayForJonah




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Jonah’s Journey – Open Heart Surgery #PrayForJonah

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#PrayForJonah 

Boy has it been an emotional day for all of us. When we arrived in the preop area, Julie, the charge nurse came in to introduce herself. Her son also plays for the Michigan Wolves. She was AWESOME and that instantly put me at ease.  

Honestly, everyone we came in contact with has been amazing. All of them very kind, compassionate, and just wonderful care.

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Jonah’s open heart surgery went well. They took him back at 8:30 a.m. and we were planning on it being done by 4:30 pm.  But by 12:15 the nurse practitioner informed us that Jonah’s case was done, they were just getting ready to close him up .

We were able to talk to Dr. Si about 2 p.m. He informed us all went as planned.  

We were not able to go back and see Jonah until about 3:30.  He was still very sedated, but they started to wean him off some of his meds.

There is nothing that can prepare you to see your child after a surgery like this. We shed many tears today and when they came out at 12:15 to tell us the surgery was over, Jamie and I both broke down in tears. . . tears of JOY. There is nothing better to hear than the surgery went well.

As he was coming out of the anesthesia, he still had the oxygen mask on and he opened his eyes and I said “I love you buddy” and he mouthed the words “I Love you too”. Seriously touched me so much.

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Jamie and I went down for dinner and when we got back up, he just had the nasal oxygen on and boy does he look so much better.  Still many lines, but now we can see his precious face.  

The next 24-48 hours are crucial in his recovery so we continue to ask for your prayers. Please pray specifically for no bleeding and no rhythm problems.  

Dr. Suarez, our cardiologist in Toledo called tonight to check in on  Jonah.  I just cannot tell you how blessed we feel.

We are also truly touched by the 1000s and 1000s of people praying for Jonah.  Thank you all from the bottom of our hearts.  We love you all  #PrayForJonah 

GOD IS GOOD. . . ALL THE TIME!!




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