#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.

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.

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.

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.

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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#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.

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. 

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.

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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#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!

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.

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

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.

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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PRAY FOR JONAH

Many of you are asking about how Jonah is doing.  I decided it is easiest to post in one place so each of his updates will be put here in chronological order. 

UPDATE #4 – 2 PM – Dr. Si just talked to us. They got Jonah off the vent and his BP and heart rate are normal. He has the pacing wires, but has not had to use them yet because his body seems to be adjusting. He said it would be about 30-45 minutes before we can go back and see him. #PrayForJonah

UPDATE #3 – 12:20 PM – PRAISE GOD – Surgery is done. He is in NORMAL SINUS RHYTHM, Blood pressure is fine and they are getting ready to close him up. He will have a chest tube and pacing wires, but she said it went better than they expected. Thank you Jesus!!!! It will be about 1 1/2 hours before we get to see him as they have to start weaning him off the anesthesia. #PrayForJonah

UPDATE #2 – 11 a.m. – He got completely hooked up to bypass at 10:36 a.m. and stopped his heart and now getting ready to start repairing the coronary sinus.  The nurse said everything is going as planned so far. #PrayForJonah

UPDATE #1 – 10:30 a.m. Incision was made at 9:41 a.m. and he is about 10 minutes away from being completely hooked up to the heart and lung machine. 

We left the house about 5:30 a.m. and got to the hospital. We do feel blessed by the great staff that is/will be taking care of Jonah. Jonah got taken back to the preop room and I could tell he was starting to get very anxious. After nurses, doctors, and anesthesiologists coming in, he finally asked if our pastors could come back. So thankful to Pastor Matt and Pastor Jay for being here for our family. They prayed for Jonah and then he got pretty emotional. About that time, the anesthesiologist came in to take him back to surgery. Jonah started crying very hard and asked if he could go home. It broke my heart. So emotional to see him hurting so bad.

 

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Thank you Leo’s Coney Island and Michigan Wolves-Hawks Soccer Club

I am trying to put into words exactly how grateful we are, but just feel like I cannot even formulate enough to show our sincere appreciation.

As most of you know our son, Jonah, was just diagnosed with a very rare congenital heart defect. So rare, he is only the 6th case in the world.  He will be undergoing open heart surgery tomorrow at C.S. Mott Children’s Hospital in Michigan.  Last night Leo’s Coney Island with the help of Jonah’s team put on this fundraiser.  

What a HUGE turnout there was.  The owner, Bachar Ayoub, the wait staff, cooks, and Jonah’s teammates and parents were AWESOME! It was completely overwhelming to see the kindness and generosity of so many!

This whole journey has seemed to surreal to us.  To see your healthy child get diagnosed with such a rare heart condition and within less than two weeks to be told he needs open heart surgery, but God has blessed us abundantly.  To be a part of the Michigan Wolves-Hawks Soccer Club has been one of the biggest blessings to our family. 

To watch the boys bus tables and sell raffle tickets all to support Jonah – PRICELESS.  Truly we have been brought to tears so many times and at other times we just have no words.  Our emotions are just all over the place.  

The owner agreed to 15% of all sales to be donated to our family and the wait staff agreed to give up their tips to give back to support Jonah.  How amazing is that?!  They have blessed us more than they will ever know.  

Thank you to EVERYONE who has prayed for and supported our family. Thank you to Leo’s and all the servers for donating their tips. This is a business I hope many of you will support.  

Truly thank you all from the bottom of our hearts. This means more than you all will ever know. To know we are not facing this difficult time alone. Love you all ❤️❤️

. . and if you have been following our story long, you know Jamie’s way of coping with all of this is by cleaning (and he had fun last night) and mine is eating potato chips LOL 🙂   

 

If you want to follow along with Jonah’s Journey, I will be posting updates tomorrow – CLICK HERE

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When God’s plans are different than ours #PrayForJonah 

This post is very difficult to type . . . Dr. Lloyd called about 8:30 this morning and informed us they had their meeting last night about Jonah. Dr. Suarez was also on conference call – so many great minds were involved in the decision. He said the consensus was Jonah needs open heart surgery.

As most of you know our son, Jonah, was found with a very rare congenital heart defect about three months ago. He has underwent 3 cardiac caths, a balloon angioplasty, and all sorts of other testing, but nothing has worked to date. This was found when he started having very severe chest pains while playing soccer.

Jonah is already our miracle. He was born in the parking lot of a hospital when his birth mom was shooting up drugs and life flighted to a trauma center. He had a massive stroke at birth, diagnosed with cerebral palsy, and we were told he would probably never walk or talk by the pediatric neurologist. BUT God had other plans for Jonah’s life and they were good.

Jonah has defied all odds and has been playing with the #1 soccer club in Michigan. He has a heart of gold and is so full of Love and compassion for others. As a parent, this is one of the most helpless feelings ever. My heart is so broken.

The surgery has been scheduled for February 23rd at 7 a.m. at U of M Mott’s Hospital.  They informed us putting a stent in would hinder Jonah’s life greatly as he would have to be on blood thinners and it is actually only a temporary fix, where open heart surgery is a permanent fix. There is very little research on Jonah’s condition (5 documented cases in the world – HE IS THE #6 CASE).

The plan is to redirect the coronary sinus into the left side of the heart where the red and blue blood will combine. He said Jonah’s oxygen sats will be lower, approximately 97%, but his body will adjust and he should be just fine. He said as with any open heart surgery there are risks involved, but they truly believe this to be the cure for him. After Jamie and I cried many tears this morning, we shared the news with Jonah.

His faith is so super powerful. We prayed and he said he knows God is going to take good care of him. He also asked if he could have the same anesthesiologist as Friday because the last thing she said to him when he went to sleep is “I am going to take good care of you and you are going to be okay”.

Our daughter has set up a GOFUNDME Page HERE to help during this difficult time, our loss of work, and so we can just focus on Jonah and getting him better. As most of you know we have 3 other children at home and live in Ohio so we will be staying at the Ronald McDonald House while at Mott’s. 

We just ask for continued prayers for him as he has already been through so much in his life and to think at the age of 13 to find this heart defect. . .so heartbreaking. BUT we know God has BIG, BIG, BIG plans for our Jonah.

Even though this is hard to swallow, we know God is in control and none of this surprises him. He knows Jonah’s heart better than anyone else!! The surgeon will be Dr. Ming-Sing Si and it will be done at U of M Mott’s Hospital. Please pray for him also, but we know the GREAT Physician will be in charge. Thanks in advance for your prayers everyone. Love you all <3!!

 

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Good morning everyone, this is Joni’s daughter Lara. My mom doesn’t know I’m doing this but she’ll see it soon enough hi mom. I know she wouldn’t probably like the idea of me starting this gofundme because she really doesn’t like to ask for help but I really felt that it was something I needed to do for them. (This is Joni and I do know now and I do appreciate everyone’s support. This means so much to our family – more than you will ever know) 

As many of you know Jonah my brother will be undergoing open heart surgery and this is really hard on everyone and this is something that I have been praying about for sometime. I am very worried for my brother and my parents as it’ll be a 10 day hospital stay, that’ll include a lot of missed work for my parents.

The picture below is from one of his heart caths.  You can see in the image, the narrowing of his coronary sinus causing his chest pains and elevated pressures.  He is only the 6th person in the world with this condition.  It is very rare.  

They have already missed so much work over the last three months as he has required much testing, 3 cardiac caths, etc. They will also need to be there for my brother and many trips back and forth between U of M and home (they live in Ohio) as my 3 other siblings will still be in school. I really would like them to be able to stay focused on the operation and my brother.

I’ve created a gofundme for them. I have included a lot more description in this link.. Thanks everyone for taking the time to read this. Other ways to support them are most of all by praying. Also visit the blog several times a day, print coupons from my mom’s blog, or click on a couple ads that interest you. Thanks for considering.

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Fundraiser for Jonah #PrayForJonah

The Soccer Club Jonah plays for, the Michigan Wolves/Hawks, surprised us Friday. They will be holding a fundraiser at Leo’s Coney Island, 28511 Schoolcraft Road in Livonia, MI this Tuesday, February 21st from 5:00 – 8:00 pm. Leo’s has agreed to give 15% of all sales and all tips collected on Tuesday. The boys on Jonah’s team will be volunteering as well as our family.

To read about Jonah’s Health Condition, you can CLICK HERE!

We cannot even begin to tell you how much this has touched us. Nobody likes to talk about the financial concerns that go along with a major surgery, let alone a major surgery of a child. It’s like taboo, because we should only be focused on the surgery. BUT as awful as it is, that has been heavy on our hearts especially since we are self employed and don’t have sick time. We will be in the hospital for 10 days, plus all the follow up appts.

 

The Michigan-Wolves Soccer Club has embraced our family from the day Jonah started playing for them last summer. What Satan meant for harm last summer, God changed for good. The truth ALWAYS prevails. Jonah is right where he is supposed to be playing with the #1 soccer club in Michigan. They are located in Livonia, MI so we travel 1 hr each way 3-4 times a week.

It has been amazing to see Jonah grow in his soccer skills with the coaching staff. His team feels like family to us, from the kids to the parents. They are good people but we NEVER expected this.

What an amazing soccer family/club we are blessed to have. Our hearts are so full of JOY! What a blessing this is. Thank you Jesus <3

Our daughter, Lara, who lives in France, also set up a gofundme page to help offset some of the expenses.

Thank you all so much for your love and support during this difficult time. It is appreciate more than you will ever know 🙂 We love each and every one of you and cannot even begin to tell you how much we appreciate all these blessings.

GOD IS GOOD. . . ALL THE TIME!!

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#PrayForJonah 

As many of you, our 13 y/o son, Jonah, was diagnosed with a very rare heart condition.  So rare that there are ONLY 20 documented cases in the whole world.  Jonah has a severe narrowing of his coronary sinus known as coronary sinus stenosis.  It was found because he started having severe chest pains during exertion.  In addition, there is only research on 5 of these cases.  

Jonah had undergone 2 heart caths, an echo, EKG, and a stress test since November.  The doctors gathered and came up with a plan so on Friday, Jonah underwent another procedure/heart cath at the University of Michigan.  We were told they were going to try a balloon angioplasty and then if necessary proceed with a stent.  

The procedure was very difficult, due to the narrowing they had to call an EP doc to come over and get into the coronary sinus.  Dr. Lloyd was able to inflate the coronary sinus, but as soon as he withdrew the balloon, he said it instantly deflated.  He came out and informed us that the procedure did not work as they had hoped.  He also said he was leaning towards open heart surgery.  

He said a stent is a temporary fix, but open heart surgery, as invasive as it is, would be a permanent fix for him.  They are presenting Jonah’s case tomorrow, Monday, at 4 PM to come up with a plan of action.  Jonah had some complications after the procedure, ended up with a pneumothorax, some EKG changes, and hypertension, but they were on top of all of it and he was able to go home late yesterday afternoon.  

When Jonah found out the news on Friday night, he was heartbroken as we were for him.  We all did a lot of praying and know that God is in control and this is not going to stop Jonah.  

This is the shirt we got for Jonah and it has his soccer number in the heart #22 #TeamJonah

 

On the way home from the hospital we started talking to Jonah about what the doctor is thinking with open heart surgery and why he thinks that is best for Jonah. We were asking him how he felt and if he wanted to talk. He said on the way to the hospital Friday for the procedure he felt like God told him it wasn’t going to work. We asked him why he thought that. He told us because that would be too short of a testimony and God is bigger than that.

He said when we prayed last night that he feels calm now – he said he is scared but he knows God is giving him a BIG testimony to share. Boy is there power in those words and great faith. To have faith like a child.  

We are asking for your continued prayers.  Dr. Lloyd informed us he would be calling us Tuesday to let us know what they are planning on doing next.  

I have to end by saying we are so impressed with U of M – from the dietary, housekeeping, unit clerks, nursing staff, and physicians – It is definitely one of a kind hospital and everyone we encountered was so full of Love and Compassion.  Thank you Jesus!!  

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