Milad today underwent his weekly ECHO at Sheba Hospital, which I had the pleasure of accompanying him and his mother to! We started off with a nice conversation with another mother whose sweet five-year-old had Downs Syndrome like Milad. They bonded over the similarity and the special love which grows for their children, unique and beautiful as each parent’s love for each and every child is.
After that short conversation, we went into the ECHO room, and Milad was out cold for most all of the process, simply sleeping though people touched and prodded him, had loud conversations in the room, and more. Unfortunately,it made for a lack of any good stories to share in the blog, but it was very sweet.
Doctors told us at the end that Milad’s ECHO is looking about the same as previously. They want to finish up his Central Line Antibiotic treatment, which will take three more weeks, and then they will discuss future steps. We are not sure what the future will hold;doctors will consider when another surgery will take place, weeks, months, or years down the line; we are dedicating all of this to prayer though, and thankful for the extent of Milad’s healing, and hope to see it blossom fully.
We have been visiting Milad faithfully since his surgery and most days, we are greeted by a little boy who is tired and asleep, or upset and crying. Both of these are reasonable reactions to have, but today I was filled with such joy when I walked into the room to see Milad smiling and actively exploring the room from his bed, looking around curiously. Milad has been in rough condition, with turbulent oxygen saturation, and a fever that we could not get rid of, but today his mood was a blessing to me and a sign of hope.
Medically, Milad’s echo seemed to say his heart is not showing a lot of natural healing, nor is it getting worse; and while doctors may be satisfied with this result in another scenario, they did not successfully repair as much of the issue as they wanted to. This is resulting in consistent pulmonary hypertension, meaning his blood is receiving less oxygen than it should. However, we are seeing recovery in his fever, as the antibiotics seem to have worked.
I got to drop off some food for Milad’s mother, and play with Milad for a while, practicing my manual driving by switching gears with his foot, and just in general soaking up his joy; it cheered me on throughout the day and helped to encourage me greatly.
Another source of encouragement was talking about our hopes and aspirations for Milad’s future, Dyki Milad spoke about how there isn’t any accommodation for children with special needs like Milad’s Down Syndrome, and how she needs to be his teacher. She hopes to teach him English, and I hope ten or 15 years in the future Shevet employees will be calling Milad needing to translate something for us. I can’t wait to see how Milad will grow up, to hear of all the great things his mother has done in life, and to see him do things greater than that, to love and laugh and become a strong and incredible young man.
Thankfully, doctors are happy enough with Milad’s progress that at the end of the day, they even moved him out of the underground PCICU, called “The Tank” by hospital staff. Milad is now above ground, in the main pediatric building, with a nice window view and more privacy than a curtain in a crowded and noisy bomb shelter. We thank God for this progress and are going to continue to pray for his recovery.
To the heart of the matter
We came into Sheba Hospital’s ICU to discover our little man Milad wasn’t in his room; he was getting a central line installed! This is like an IV that goes directly into the heart which will allow us to deliver antibiotics straight into his heart. We aren’t sure if he has an infection in his heart, but doctors have decided to treat Milad like he has an infection, that way we can cover all of the possibilities.
Once Milad got back, I spoke with the doctors, and spent some time with Milad. The doctors said the procedure went well, and the antibiotics will begin soon. Milad was in a surprisingly good mood from coming out of this procedure, and I was able to play with him. He has been scared and upset his entire time in the hospital, but as he settles into his environment, he has found a much-welcomed peace. However, he still has been upset frequently and is always tired, constantly sleeping, and along with that, his oxygen has still dropped, especially at night.
We now will wait to see how he reacts to the antibiotics, his fevers have already gone down with external antibiotics, so hopefully going straight to the source will end this infection and bring him to recovery, but all is in God’s will.
Milad’s situation is one that seems to be confusing doctors at Sheba Medical Center, family, and Shevet staff alike. His surgery was a complicated one; in order to treat his AV Canal, a condition where the wall separating the left and right side of his heart was not there, it required surgeons to seal the gap and turn one conjoined valve into two different valves. It seems like the valve repair is making Milad’s recovery more difficult. While leakage after this surgery is expected, it still makes his recovery a long and difficult journey.
Due to leaks in his heart as blood mixes and gets out, the pulmonary veins in his lungs have gotten smaller, making it hard for his blood to get oxygen. On top of this, he has had a fever that doctors have not been able to break. Today doctors told us that they theorized that contrary to what we thought, there may not be an infection in his whole body, but just a regional infection in his heart, which could put more pressure on his recovery.
Now what can we do at this time? Doctors and nurses are working, discussing, and giving this test and that injection, as they are working hard for Milad, but sometimes it feels like the family and friends can just sit on the side and watch. After discussing all of the options, and possibilities with Milad’s mom, I told her that right now, we can only wait and pray. In the end, Milad’s life is in God’s hands, and he is a merciful God. We can only come to God as a servant, a beggar, and a friend in these times of uncertainty; We are praying that God shall be the light in this darkness, and calm the storm raging around this sweet mother and child.
Doctors have some ideas for treatment looking forward, but it is still a strange and unknown path. They will begin to treat Milad as if he has an infection, running antibiotics directly to his heart through a central tube for six weeks, and trying to extend the time till he needs another surgery, which may be years in the future.
At the end of the day, we do not know what will happen, but right now, all we can do is pray.
Pour out all my heart for you
Written by Collin and Matthew:
We were encouraged to see Milad spit out his pacifier and reach out both his arms triumphantly when we walked into his room at Sheba Hospital this morning. About 30 minutes prior to our arrival, Milad had received an ECHO that yielded encouraging results; the new medication was working as intended and the pressures within his lungs had not increased any further from the previous day.
After spending some time visiting with Milad’s lovely mother, she poetically said goodbye to us with the words “I pour out all of my heart for you.”
Milad’s mother messaged me early in the morning with news regarding Milad’s health, and how further investigation was needed. She shared how he has pulmonary hypertension, and that a new medication was started to help with this. Please pray for Milad as he continues to adjust and adapt after his second surgery.
His mother shared with me previously a dream that she had of Milad, as a three-year-old. I hope that dream will become true and that Milad will grow and flourish into a vibrant three-year-old boy who knows how much his mother loves him. She shared photos of Milad from every month of his life and his photos from his birthday celebration. I hope that there will be many more to come. I admire his mother’s dedication, attentiveness, and love for her son.
Please continue to pray for patience, strength, and comfort as he continues his stay in the hospital.
Milad’s mother updated me that Milad is recovering from his surgery and required a blood transfusion. Please pray for him and his mother as they recover from yesterday’s surgery.
“My soul melts away for sorrow; strengthen me according to your word!” Psalm 119:28
In my morning reading, the first parts of Psalm 119 came up and as I read it, I reflected a bit on God’s glory and greatness and the ability of His Word to strengthen us when we feel overwhelmed. How this entire community needs His strength right now! My thoughts turned to little Milad from Kurdistan, who very quickly was scheduled for a second surgery after tests revealed that the first surgery did not completely mend his heart.
Coworker Colin and I left early this morning to meet Milad’s mother as he was taken into surgery at 7:30am. A look of desperation and weariness had transformed her beautiful face, which had been a bright and happy countenance in the house in Ashdod, despite her son’s fragile health. She has been so strong in her own strength for quite awhile, but at this point, it is beyond her and she needs the strength of others to carry her. We know that strength comes from the Lord and not from us and we are thankful to be here alongside her, lifting her and little Milad up in prayer continuously. We praise God that after six hours in the operating room, Milad’s surgery has finished and the surgeons were able to fix areas in his heart that needed repair. Please pray for him as he adjusts to these new changes and for mom to have peace.
Occasionally, I read commentaries on what I’m reading in the Word to gain perspective and the commentator this morning surmised that Psalm 119, which is a lengthy acrostic, was written over a period of time and later compiled, as it doesn’t flow smoothly from beginning to end. Instead, it is like a string of pearls with each pearl having equal, but independent value. What beautiful imagery to think of each child that passes through the doors of this hospital and the ministry of Shevet Achim as a distinct pearl of great value to our Father in Heaven.
Today, let us pray for Milad and his mom, both pearls precious in His sight – that she would be strengthened and his precious life revived, that they would one day soon testify to the immeasurable goodness of God.
Milad returned to the hospital on Sunday for his follow-up echo. There the doctor expressed concern that he is experiencing pulmonary hypertension and had him hospitalized. The next day, Monday the 6th, the doctor informed his mother and I that he has had some new holes and leakage develop in his heart. The previous repair didn’t hold everywhere, so he will have surgery on Wednesday. His mother was very afraid at the news; we pray that the surgery will go well.
It was Milad’s first time back in the hospital since his surgery and it was an exhausting day for him. First, we arrived for his echo, and after waiting a bit in the surprisingly busy echo room, they gave him the echo. They saw the small holes still in his heart, but they were not of immediate concern for them, the holes are letting out about the same amount of oxygenated and deoxygenated blood, and it is not much blood anyway. He also has high pressure in his pulmonaries, meaning the veins in his longs are contracted. This was unexpected but not too concerning, and doctors believe that it is likely just his body adapting to the new physiology.
After that, we went in for an ECG and to get his vitals. The ECG went well, with minimal crying, and it all looked normal, but when we were getting his vitals, we found his bpm was high, along with his blood pressure. Doctors made a note of it and first sent us off to a blood test.
The nurse had a hard time finding blood, poking around in both arms to no avail. She brought us to another nurse who had a specialized light for finding veins, and she couldn’t get it on the first arm, but on the second arm a doctor in the room got it first try without the light; those extra years in med school must be worth something then. Milad of course did not like all the poking and prodding, but this was the last test of the day and he very quickly fell asleep.
After all this running around we returned to speak with the doctor, and she explained the situation. Milad does have the issues stated before, smaller holes in his heart, high pulmonary pressure, and odd vitals, which have raised some concerns with the doctors. She will discuss a plan of action, but he does not need hospitalization at this point. The doctor was also concerned about his constant constipation, so she wanted a gastroenterology appointment, an appointment with a general surgeon, and an ultrasound of his stomach. She is wary of his condition, with so many things that aren’t quite right, so she said that we should be ready to bring him to the ER.
Milad was wiped out after his long day and slept for the car ride home. We are praying that while he is walking the line between needing to be in the hospital and being home in Ashdod, God will give him the strength to keep him home until his next appointments in the coming week.
This morning our lovable Milad had his catheterization at Sheba Hospital. During that time his mother was scared and crying a lot but it was a good opportunity to pray together, she is a sweet woman.
The catheterization only lasted two hours and thank God everything went super well and the doctors said that he is ready for a heart surgery. They expect the surgery to be this week, but first they have to check if Milad only has down syndrome or if he has another condition.
Please keep Milad in your prayers, that everything continues to go well with him and that he can have his surgery soon.
This morning sweet little Malid arrived at the airport with his mother in Israel. We took this one-year-old boy and his mother to our home in Ashdod. They arrived also safely here. Now the two are settling in and are getting to know our community and the other families.
Malid has down-syndrome, Atrioventricular canal defect and Tetralogy of Fallot. Tomorrow he will have his first echo in Sheba Hospital.
We pray for a good treatment plan! And thank God for the safe landing!