This morning, one of the Shevet vans was completely full with people, two of which were Mohammed and his lovely mother. Mohammed has been here now for four months and his time to be delivered back to Kurdistan has come.
On the weekend, we had a farewell party for Mohammed, during which we had a moment to share our memories. I remembered the very first days when Mohammed’s mother was in the hospital and Mohammed had his first surgery; he became a bit weak and was put on the ECMO machine. At that point, we didn’t know if Mohammed would survive or not. But God knew.
I told Mohammed’s mother how amazed I am by her strength, especially when Mohammed was in and out of the surgery room several times. But she kept trusting. I love Mohammed’s mother, she is always happy, with a beautiful bright smile on her face and was always welcoming to me whenever I visited her in the hospital.
Thankful for healing in Mohammed’s life. I hope and pray that he will continue in this. Co-workers Colin and Nate are traveling as medical escorts together with Mohammed and his mom. When they arrive in Kurdistan, they will go immediately from the airport to the hospital.
Mohammed has been in Sheba hospital for three months, and today was the day that everything lined up for him to be released home to us in Jaffa.
The whole of the department had provided excellent and thorough care for him, helping his mother to grow in confidence. There has been so much work and thought going into this task of helping Mohammed get back to health, and preparing for his discharge home.
The doctors and nurses have of course helped immensely in Mohammed’s case. Also, Mohammed’s mother is such an intelligent and competent lady. Sometimes we lose sight of the fact that she is just 24 years old when we remember everything she has endured, especially in these recent months. As co-worker Alena and I greeted her this evening, we both felt so proud of her. One of the first things we wanted to say to her was, “well done.”
Of course this evening she was beaming at the prospect of Mohammed returning to Jaffa, and her roommate at the hospital, another Kurdish mom, was also in good spirits as she helped her to pack and saw her off.
Another Kurdish baby was also discharged from Sheba hospital this evening, so both mothers were in a wonderful mood, laughing a lot as we all together tried to squeeze their bags, pushchairs and Mohammed’s feeding pump equipment into the Shevet van.
Thank God for this happy, joyful evening, what a wonderful blessing to see Mohammed’s smile and to be able to bring him and his mother back to Jaffa to a houseful of welcoming mothers.
Last night was very tough for Mohammed. He had fever-like symptoms, which today brought some morning examinations.
Doctors carried out a scan of his abdomen and the PEG, all were ok. He was also examined by the surgeon for the PEG surgery. The hypothesis is that the speed of the feeding yesterday, resulted in some milk flowing out into the abdomen.
Mohammed’s symptoms are resolving today and he is slowly feeling better with some antibiotics. He is still very tired and sleeps a lot. Despite this incident, Mohammed’s mother is very calm and optimistic. She seems very grateful to us.
The doctors are saying the feeding pump will still be necessary for Mohammed. So please pray for an end to any complications.
Mohammed was moved down from the ICU back to “the Kurdish room” on the fifth floor of Sheba hospital’s pediatric wing. His mother has made it very home-like there with a good supply of food, tea and utensils, apparently from a range of sources. We ate together today with some other mothers in the hospital. Thankfully by this afternoon, Mohammed was also able to “eat,” i.e., he received for the first time milk through his PEG.
He looks wonderful without the NG tube stuck to his face, and his mother is very happy it’s gone. It’s clear to see Mohammed is improving, as he is crying a lot less, can make some eye contact, is responsive to sounds, and as reported by his mother, has smiled once!
We put his mother in touch with another mother in Kurdistan who’s child also had a PEG during her stay in Israel, so they could talk about the transition home. Mohammed’s mum is looking to the future and is hopeful that soon her little boy might be discharged!
Mohammed B is doing well after his PEG surgery yesterday! A kind nurse who specializes in PEG tube care, explained to Mohammed’s mother how to care for the PEG tube to prepare for her return to home.
The medical staff hope Mohammed is able to return to the Jaffa house in a couple of days. He will have another appointment with the nurse in a couple of weeks for further education on caring for this tube. His mother is eager to learn.
Mohammed is scheduled for the PEG surgery next week, as he will need the tube for feeding and gaining weight. Since he was extubated, it has been a long journey, but after seeing him today, we saw that he is improving. He is a lot better than he was initially. There is much to be thankful for in his little life, even though it has been very difficult.
His mum has close friends around her to make these hard days better, to support her when she is tired, and to set up a picnic in the room in lieu of going outside.
Please pray for Mohammed and for his mother as well.
When Mohammed’s lovely mother saw me in Sheba hospital today, she immediately wanted me to come to her room and see Mohammed and to ask a doctor how he is doing.
I went with her and when I was there, a speech therapist came to examine cute Mohammed in his ability to swallow. They wanted to try to give Mohammed milk orally, but as he is not yet able to swallow properly, they couldn’t do it. The doctor said there is a possibility that Mohammed needs a PEG for feeding because he needs to increase in his weight.
Nevertheless, he seems to be a tiny bit better, step by step, as he is able to keep his pacifier in his mouth now. When the mother heard today that there is a possibility her beloved son needs a surgery for a PEG, she was very worried and upset about it. The time for her hasn’t been easy so far.
Mohammed had a long echo this morning. We heard from his Cardiologist that she sees his heart is functioning well and that the surgery looks very good. He has been “discharged” from his post-operative Cardiology perspective. This is really wonderful news and of course the mother was happy to know that Mohammed’s heart looks good.
He is not however yet discharged from the hospital as he continues to present with neurological problems. He is responding well to a medication which helps him to calm, so he is not crying in distress all the time. His feeding is affected, and this is presenting the biggest barrier to him being discharged from the hospital.
He is fed exclusively by NG tube, and will have an assessment on Sunday to see how safe his swallowing is. The doctor wanted to inform the mother that sometimes children who do not have a safe swallow need to have a gastrostomy. We can’t know yet if this will be necessary for Mohammed. Everybody hopes that Mohammed would be able to eat and drink safely again, as normal. He is a child dearly loved.
Mohammed has been very restless since being disconnected from the ECMO, crying all the time, unfocused on people and objects, and unable to drink milk orally. As it has been going on for a while now, he had a brain MRI at the end of last week. Today we heard the result which showed that there is an injury to a part of his brain. It can be a complication of being on the ECMO; the machine which helped to save his life.
Thankfully, the doctor described that his condition presents as more “mild” impairments, and is hopeful that in time, and with complementary therapies, his brain can heal and recover.
At the moment, it is both calming for his mother to have an answer, but also upsetting to see Mohammed upset, and to hear that there is no quick fix medicine able to cause an improvement in his condition. Still, optimistically, she says she is hopeful for his recovery.
The new week began with meeting Mohammed in the secondary pediatric ICU at Sheba hospital. Last Sunday, the surgeon closed his chest, and one week later, he has improved enough to be in the intermediate ward.
For co-workers Georgia, Sabrina, and I, this is shocking in the best way, given the recent death of a baby who was similar to Mohammed in age and diagnosis.
Mohammed’s mum is struggling with the period of restlessness common to, at least the few we know, infants who come off of the ECMO. At one point, she asked if there was medicine to make him sleep and I said that sleeping is the opposite of what we want. Slowly they are decreasing the medicine, and certainly after the past month where Mohammed was mostly sedated and going through multiple major heart surgeries, he will need a lot of rehabilitation. It will be like learning things for the first time again, like how to drink from a bottle.
Please keep this lovely boy in your prayers. Praise God for his life and his recovery.
The word in Kurdish for happy is ‘Dilkhosh,’ or ‘good heart,’ literally. I think it’s the perfect word to describe this picture. Mohammed has been extubated and is being weaned from a long bout with sedation.
There is a lot more going on in the background than this picture can capture. A few rooms over another Kurdish baby who in every way was dealing with all of the same struggles in recovery as Mohammed has been, and that child died this week. Mohammed’s mother was best friends with the mother whose baby died. The roads of their two boys diverged drastically in a matter of twenty four hours.
Maybe asking why one lived and the other died isn’t the right question. I don’t think there is an answer. We can trust God in all things. We can take the gift of life for Mohammed and continue to pray for his recovery.
This afternoon, Mohammed’s mother was once again waiting for her son to come out of surgery at Sheba hospital. She recited the prayer in Arabic that says, “There is no God but God.”
She prays this many times throughout the waiting times during surgery. This surgery was very quick, only taking about an hour to achieve what his mum had been praying for since his second surgery, closing Mohammed’s chest.
Please continue to pray for Mohammed. Today certainly was something his mum has been eagerly anticipating, and a good thing for his recovery as he was deemed stable enough to close his chest.
Since Mohammed was taken off ECMO yesterday, he has remained “stable,” and a tiny bit better. The doctor reminded us that Mohammed is still not in a good condition, with a lot of support from medicines, ventilation, the external pacemaker and with his chest open. These issues need to resolve, and will take some time.
Mohammed’s mother said, as always “Al Hamdulilah,” Arabic for ‘Praise God,’ and expressed that as long as he was either stable or improving, even a little bit, she was pleased. She is content to visit him occasionally, and not feeling the need to enter his room too often due to the risk of infection.
We ate a nice lunch together at Sheba hospital, so these difficult days truly are brightened by simple things, such as good friendship.
It was a big step today for Mohammed, as he had surgery in which they disconnected him from the ECMO machine. The surgery required around two hours. The waiting time was really quick compared to the long surgeries Mohammed has had before. We went outside for some time which was lovely, and even though circumstances with these children are often difficult, I enjoy spending the waiting time with the lovely mothers a lot; it helps us to get to know each other better. Mohammed was taken out of the surgery after around two hours, and his mother was very happy.
Mohammed has a pacemaker now. His doctor said he needs to have it probably for a few days because his heart is not working well yet on its own. His chest is still open, but he is stable. Please continue to pray for Mohammed’s precious little life and for his lovely mother.
We heard today that it could be possible for Mohammed to be taken off ECMO tomorrow. He has remained stable since yesterday and today, so this is considered to be relatively “good,” considering the circumstances.
Please continue to pray for him and his sweet mother. He still has a very long way to go for his heart to gain strength and begin working on its own.
Little Mohammed has had a difficult time during the weekend. We heard today that his blood pressure has been dropping very low; a sign that the heart is extremely weak. In order to help his struggling heart, the doctors were discussing whether to add additional support from the ECMO.
Mohammed’s mother was provided an alternative focus at the hospital today while encouraging and supporting another mother whose baby was in surgery and then put on ECMO.
Shortly after, we received a phone call to bring Mohammed’s mother into his hospital room to sign a consent form: they had decided they needed to take Mohammed into the OR this evening to add more support from the ECMO.
It was a long process again for Mohammed, and by the end of the evening, he was back in his room, but still in a poor condition. Please pray for his life.
Mohammed had his arterial switch surgery today. His mother was pleased, and surrounded by her group of Kurdish moms in the hospital all day. They are an encouraging group of ladies, and helped Mohammed’s mum to feel good throughout the day.
The surgery lasted just over six hours. Mohammed was eventually brought out in the big hospital bed, and his mother sped upstairs to greet her baby who was being transferred back to the ICU.
The doctor told us that it had been a difficult surgery, and that whilst it had been successful to complete the switch of the arteries, the contraction of the heart was quite weak. It means that they made the decision to keep his chest open, in case the heart becomes even weaker, and they need to put him onto the ECMO machine.
His mother received and understood the news with emotion and strength. She was encouraged by another Kurdish mother, whose baby is also with his chest open, but she was of course upset that Mohammed is not in the best condition as she had hoped before the surgery.
We hope and pray that the heart will become stronger and that they will be able to close the chest in the next week.
The surgery today went ahead as planned. It took about three hours, and this surgery will prepare the heart for the big surgery, likely to be next week, where his great arteries will be switched.
The mother was surrounded throughout the afternoon by friends, and she coped very well, of course shedding a few tears.
When he was brought out of surgery, she was full of gratitude, and thankfulness for the medical team. She was very happy to see Mohammed and said how beautiful he looks. I thought this is a special perspective to be able to look past all the tubes, drains, medicines and machines, to see only the beauty of her son.
As with many of our Shevet babies, nicknames develop. For Mohammed, “Mr Spi” seems to be sticking. “Spi” means “white” in Kurdish, and we are all remarking on his colouring, as Mohammed is in stark contrast to the other babies with low oxygen levels. They all have a grey-blue tinge to their lips, fingers and skin, whereas Mohammed looks very healthy.
He was happy and interactive today in the ward before going into surgery. It wouldn’t be easy to tell just by looking at him that he had such a critical heart defect, requiring two open heart surgeries!
He is well loved by everyone and many of the staff members who came to carry out tasks for him couldn’t help but give him some big smiles and come and greet him.
The day started early for little Mohammed, as he had to fast since three o’clock in the morning because of his CT scan scheduled for later the same day. Therefore he was very hungry, and wasn’t sleeping almost the whole night. Of course by extension, this caused his mother to also suffer some sleep loss.
Happily, when we brought Mohammed in for his CT scan, he was scanned very quickly without much wait. I dropped Georgia and the wee one at the CT scan area, went to park the car, and when I came back he was already inside. That was one of the quickest CT scans ever. Normally, there’s more waiting.
The whole CT scan went well. When they finished, they brought us to a room where we could wait for Mohammed to wake up after his sedation which was needed for his CT scan. It took him around an hour to awaken.
Waking him was a bit of a challenge, but when he was properly awake, he ate a bit of his milk which was important for the doctor to see before he thought it’s appropriate to let us go. Shortly after that, he fell asleep again but with his eyes open. The doctor was a bit surprised about that but the mother assured him that little Mohammed frequently sleeps like that, so after hearing this, the doc decided it was safe to let us go. So we left and Mohammed is doing well now after his CT scan.
Please continue to pray for this little boy, that he may have his surgery soon, for patience for his mother and trust in God’s timing.
This smiley boy came to the hospital today for a corona test and sonar test, which all infants have done to check their brain and kidney funciton. He really smiled and laughed whenever we said the word ‘sonar’ with each other and even more so when we started to say it directly to him.
Tomorrow he will have a CT scan and hopefully surgery also this week. Thank you for praying for lovely Mohammed and please continue to do so, as this week holds big things for him.
Last week Mohammed had his first assessment today, which was complete with an echo, a blood test and an X-ray. We mentioned that many things in medical work and in hospital life tend to require lots of waiting and patience. Then all of a sudden, everything happened at once. We waited long for the echo, and then had to rush down to the blood test clinic which closed in the afternoon, then we went to the X-ray department. Both Mohammed and his mum were wonderful that whole day. She took the new environment and circumstances in stride.
Again today we went for another echo. The doctors will discuss the possibility of his needing a CT scan before surgery. His mum is lovely and eager to know any and everything about her baby. Mohammed is remarkably calm in echoes and even when he starts to cry, he is easily consoled.
Please pray for this lovely boy as he begins the process of treatment here.
Having landed in Amman yesterday, little Mohammed B and his mum and three other Kurdish mothers and babies, all traveled today with Jonathan to the border crossing with Israel, where co-workers Sebastian, Alena and I picked them up and brought them to our community home in Jaffa.
Mohammed’s mother seemed very happy to arrive. She and the parents who traveled with her, were all in good spirits.
Mohammad is around three months old now, and has been given a diagnosis of d-TGA, transposition of the great arteries, in Kurdistan. He had a catheterization done there using a balloon to open a small hole in his heart which helped the oxygenated blood to more easily flow around his body, keeping him as safe as possible until he had reached us here in Israel.
Please pray for a good outcome for Mohammed in surgery, and for his mother to settle in and feel at home here.