Joeys Open heart surgery

Joey was home and we considered our family complete. We had our 2 girls and 2 boys. 2 biological, 2 adopted and it was a happy feeling.

Our first days with little Joey were trying too.

Joey cried day and night when he got home but through our last experience with Kayla, we were stronger and wiser and we were going to manage until he settled in.  2 weeks into the adoption, Danielle, Gabriel and Kayla came home with red eyes from school. I arrange to take them to their favorite pediatrician Dr. Michael at Nakasero Hospital. It was always a treat to go to Dr. Michael. Even for me as a mum, for once I found a doctor who explained into detail the condition of my babies every time we had a sickness. We keep joking that our kids will still go to him even when they are 30 years.

The plan was to go see Dr. Michael get eyes spray and then go swimming.

We packed our swimming bags and with 3 little excited kids (Danielle was 7, Gabe 5 and Kayla 3 years) and a crying baby we headed to Nakasero Hospital.

We lined up to see Dr. Michael while the 3 older kids run the hospital down with noise and their usual crazy approach to life.

I will never forget Dr. Michael’s response when he set eyes on Joey. He literally yanked him out of my hands and said “your baby is dying”! In seconds, he had been put on oxygen and I remember my legs just could not stand. I literally sat down and could not move.

I could not even control Joeys older siblings as they run the hospital down with noise and excitement oblivious of their little brothers condition. My mind went blank as I sat down on the floor asking myself what in the heck???? I watched the doctor pull Joeys clothes off so quickly. For about 5 minutes I didn’t know where my other kids were and little Joey was lying with an oxygen mask on his mouth.

The only word that i could say was: JESUS! Thats all i said as fear filled my heart.

Every time I say that name in its right context, it powers me up with strength and courage.

The name of Jesus powers me, strengthens me, enables me and just makes me better. Name above all names: Jesus.

At the mention of his name, I snapped out of my blank mind, called George and he came from work in the shortest time possible! He was there as fast as he could and for me to say shortest time possible for George is a big deal.

It takes him double the time to do the same thing as i. George is never in a hurry. But over the years, we have learnt to not terrorize each other because of that major difference.

At hospital, George found the older kids in the hospital corridors and brought them to me as I sat still in the same corner.

After hearing from the doctor, He looked at me and said, we will sell the car which we had recently acquired on a loan….and we will use insurance. He will be fine, don’t worry about it.

He always says that: we will be fine and sometimes, that drives me nuts because, I am wired to find solutions and talk through nerve wrenching situations. But for right now, that’s all I wanted to hear from him.

I could not even think, this is too much and we knew to not take the baby back, we had already walked that journey and I knew we were to walk this journey with our precious little boy.

So I got up and became strong for whatever came as we walked this journey with our little adopted boy.

George started making calls to some of our closest friends and family members.

Rodney Barugahare, Georges big brother told George: God placed that little boy under your care because He knew he would be well taken care of under you. He already has a plan and Joey will be fine. We have never forgotten those words. Suddenly we knew God was in charge and our job was to trust him. Suddenly we felt honored that we got a chance to sit in the front seat of Gods extreme miracle.

We feel very special and honoured to this day that our God had chosen us for this task and however it turned out, God knew were strong enough for the journey.

He became our strength then

and He has never stopped being our strength.

Some of our close friends went out and helped get some money through their friends and families.

Ricky Mugabi called all His friends and family members and raised 80% of what would be our air travel. He treated the scenerio as if it was his little boy.

I will never forget how worried he was and how he run around collecting money and bringing it to us.

Jacob Zikusooka got his dollars out to help with whatever bill was building up. He amused us so much at how he had dollars while the rest had shillings: we all need crazy friends in our lives.

Marjorie and Mulungi Sseruwo gave so much with their time and money; Julie and James Kasujja were such an emotional support to us.

                                       Joey, the day after his open heart surgery

God places people in our lives to help us through different seasons and you hold them close to your heart even when years later, you are not very close. You never stop being thankful for them. You never close the door because one day when they need you, you must be there for them.

Also, as you go along with life, you avail yourself to help others because that’s true humanity. We are because other people are. We are meant to help each other to make the world a better place.

After the doctors did all their checks, they found out that little Joey had acute pulmonary stenosis which means that his pulmonary artery was blocked and so, his body was not getting oxygen. His body was blue but because he is black, there is no way we would have known. With this condition, Joey should have died a few days after birth but he had beaten the odd and he was about 4 weeks old then. The pediatrician had obviously seen how blue his body was and that’s why he yanked him out of my hands to give much needed oxygen.

Our insurance told us that they could not cover that sort of procedure and quickly backed out of the situation.

In the meantime, the doctors at Nakasero Hospital told us Joey needed open heart surgery otherwise he was going to die.

We were confused, scared and in panic. Open heart surgery cannot be done in Uganda or even Kenya. The more affordable option was India and it was going to cost us way more than the car we had on loan and all our little belongings.

At the height of our fear and confusion, one of my close family members called me and said to me “serves you right for picking children off the street, let’s see how you will manage this one, don’t ask me to help you with money”. This is someone whose opinion I respected, someone who I love but you can imagine how damaging his comment was and how heightened my fear was.

Trusting God was crucial but it was not easy with this entire unfolding situation.

The law in Uganda requires that parents fostering for adoption like George and I are supposed to report back to the orphanage if the child has a life threatening sickness in the first 36 months of taking him home.

We called Malaika Babies Home and their response was super amazing. We instantly got an extended family that came willing on board to help walk this journey with us and our little boy.

Jo Hardcastle another Australian volunteer from Malaika Babies came in and spent time in hospital, brought in different equipment to help monitor Joeys heart

At the same time Lucy Buck got her team to find a solution. She arranged for a go fund page and sent out a call out to anyone that could help.

You can imagine how many people are out there looking for help with go fund me accounts for similar or worse conditions.

In the meantime, it was determined that Joey would not make it to India because there was direct flight and it was a long way off and so Lucy was looking into the UK and South Africa (Walter Sisulu hospital) but because little Joey needed a short journey. The UK had a direct flight from Entebbe but was 8 hours and South Africa was 4 hours. Lucy arranged for Joey to go the South Africa.

The cry for help from Lucy (She was literally crying in her video begging for help for our little boy) got several people who until then were strangers responded and gave generously to save Joeys life. We needed over 10,000 British Pounds to have Joeys little hearted opened up and repaired.

From the plans to go swimming to when we were ready to fly to South Africa took only two days. The events in those two days were as though we were facing a month of crazy because of the over whelming nature of all that was involved.

Within 38 hours, Lucy had raised all 10,000 pounds required for the operation. She called the Hospital in South Africa and arranged all the details. The hospital miraculously agreed to cover the balance to help this precious boy’s life. The total cost of the operation was 14,000 pounds and the hospital covered 4000 British pounds.

It felt like we were going through an out of body experience. My thoughts we scattered, my mind was a little blank.

After being bullied by the passport control officer for not being the biological father of this dying child and asked why he was bothered so much by this child, George managed to get Joey his passport in one hour.

2 days after a huge ordeal, my sister Patience Kazoora and I held my 10 weeks old baby and flew to South Africa.

In Walter Sisulu Hospital in Sunning hill, South Africa, Joey little chest was opened up and corrective procedure was done.

I remember even when we go to South Africa and the Hospital admitted us, I was still on the edge worried that little Joey wouldn’t make it through the operation.

We had all our friends and family members that cared praying.

It felt like my heart was literally pumping outside my body. I could not imagine going back home without him alive and all that was involved in losing him.

What had we got ourselves into; supposed God willed for little Joey to die so He can be exalted that way- how strong we still would stand!

I kept praying for little Joey but I still said to God: may your will be done! As painful and hard the journey was going to be, I wanted His will to be done.

There is nothing better than His will. It is harder and less fulfilling when we live outside his will. As easy and fun it maybe as we go along when we try to control our worlds, when we don’t do what He has created us to do, we will find ourselves in messy situations, tired, frustrated, angry and unable to celebrate other peoples achievements.

After 7 hours or so, Joey was done with the operation.

TRUSTING GOD WAS NOT AN OPTION…..

I have always dared to live for God.

George and I plus our kids have to remind ourselves that thats the only way to live a full life.

We also know that we will do things that make us scared but even when scared...we will still step out and bless our God with our actions.

Fear is something that everyone faces but it should not hinder anyone’s potential.

After the operation, Joey was to stay for a minimum of 6 weeks – 3months to heal and go back to Uganda but Joey was read to go back home after only 2 weeks. God did a miracle after miracle after miracle. He healed, provided and strengthened us through the whole journey. He showed us that He is a faithful God, dependable and He always has our back.

I get very emotional when I remember all that we had to go through and how our God was totally awesome as He always is.

Joey became our miracle baby….we shielded him more than we did the first 3. Ultimately his protection comes straight from God.

We were told that he needed another surgery after about 6 months because the flaps that are supposed to hold blood so it is not leak back into the heart chambers and are located on the pulmonary artery were not there. So even after the operation, there was a significant amount of blood going back in the heart chambers which was not good for the heart. So they advised us to get ready and the signs were going to be obvious: he was going to be slow, his feet swollen and with low energy levels.

Joey never went back for corrective surgery. The heart scan after six months showed the flaps had grown on their own. Another miracle.

Now, I have seen many miracles in my personal life but this one blew my socks off. I was so emotional wanting to jump and high five God, hug him and thank him for being true to His word.

Joey has always been the superstar in our family. He always tells us, he wants to be a rich business man and he wants to be super footballer.

We are cheering him on his dream.