Archive for December 2013
Fall mission 2013 day #8 (Friday)
Sadly..our last day has arrived. It has been raining and cooler in Amman the last 24 hours…but still think it’s several degrees warmer than the Midwest right now!
Started day in ICU with Meron. He had a relatively stable night. Bleeding stopped and pressures have been good . Will likely spend today getting some
Fluid off as his urine output has dropped off.
The other 5 children were all in the step-down unit and doing well.
I met Alyaa’ and her parents walking around in the hall-she looks really good and will probably be discharged today or tomorrow.
Mah’d was also walking the hallways with his mother-he also will
Likely go home today.
Osama was in his room with his mother this morning, smiling and also will get discharged today.
Daivid was also walling in the hallway this morning with his mother. He likely
Will be discharged today or tomorrow. Because they live in Iraq-they will stay in Amman the rest of the week at the Ben Khaldoun residence next door to the hospital (similar to a Ronald mcDonald house for the families) until he has his first post-op check this week with Dr. Kal.
Ahmad also is doing very well. He will need to continue on a low-fat diet for awhile because of his Fontan operation, but he also will be discharged within the next day or so.
We were scheduled to operate on Rafeef this morning , 2 yr old with a VSD, but when she was beig brought back to the OR…she had a runny nose and cough. We mother stated that this was new for her, no fever, but due to her possibly having an infection (even if viral) and that this was an elective operation, we decided not to take any chances and cancelled her surgery for today. Sadly, this is our last day here on the mission trip, so we will have to postpone her surgery until the next mission. She is safe to wait-and no reason to take any additional risks if she is sick.
Spent the morning then packing up instruments, but then Meron developed more issues with kidney and his liver. His potassium level was high and his urine output still decreased, so decided to place a dialysis catheter so able to remove potassium and things that the kidneys filter. The placement went well–and last report from Dr. Kal after we had left , was that his potassium level was decreasing. His blood pressure and heart rate were stable throughout, so we ask everyone to continue to pray that his organs will continue to recover from his long day and night of surgeries yesterday
Placing dialysis catheter at bedside:
We want to thank everyone involved in our 12th mission trip to Amman for their time, support, fundraising and
-GIft of Life Amman (GOLA) and president Sirene Khurma
-Rotary Amman Cosmopolitan Club, and its board members for its fundraising efforts and visits to the children
-Rotary Club of Greenfield, Indiana and president Stephanie
Kinnaman for fundraising efforts
-The Tom Deierlein Foundation for
Financial /fundraising support
-Dr. Khalid Salaymeh for his tireless efforts screening and caring for the children in partnering with us
The OR staff, ICU staff and hospital staff of Al-Khalidi Hospital for hosting the operations for the children
-Dr. Hamdi Abu-Ali for helping to assist Mark in the OR this week and donating his time
Special thanks to Fares Shadad, Manal Karadsheh, Lamia Yassine, Dr. Samir Johna, Dr. Aso, Marikay Satryano and the many others who helped make these missions possible.
Lastly..Becky and Jill–we missed you terribly on this trip..know you were both there in spirit and we carried on our work in both of your names…
Fall mission 2013 day #7 (Thursday)
Started our morning with a little bit of Christmas in the air in Amman. The lobby had transformed overnight into a Christmas theme-very beautiful decorations.
We headed to Al-Khalidi hospital and started with ICU rounds. Our two kids from yesterday, Osama and Aalyia both looked great. Both can likely go out to the floor later today.
Osama:
Daivid continues to look fantastic and amazing us in how stable he has been after surgery, in’shallah (which means thank Allah, or thank God.. whichever you choose). He will have his chest tube removed today and may actually be able to go out to the floor later. He was one of the patient’s we actually were very worried about because of his pulmonary hypertension-but he proved not to be the case, which makes it all the more rewarding that he had surgery.
Daivid:
Ahmad, our Fontan patient ,also looks great today and will also go to the floor.
Lastly, Mah’d’s fever is better today, none since yesterday, and will also transfer to the floor. All 5 of the children should be on the step-down unit by tomorrow.
Mah’d:
Sondos looks great this morning on the floor–she was already dressed and ready to go-anticipating her discharge today.
Sondos, her mother and Dr. Kal:
Abdullah was also ready to go-I changed his dressing and he proudly showed everyone his incision!
Abdullah and his mother also got to be celebrities today. A local TV station stopped by today and interviewed the team about the mission and the collaboration between GOLA,Rotary and the Indy team. Abdullah and his mother were interviewed, as well as Dr. Kal and myself. Abdullah was a star–and answered all the reporters questions. After his lunch-he was discharged from the hospital—smiling then entire time.
The first operation this Morning was on Meron Mazin Shamoon Elyas Yaqob, a 5 month old boy from Iraq. They are originally from Bagdad, but they moved to Irbil. He has tetralogy of Fallot, large VSD (hole in bottom chambers), a very small pulmonary valve. His saturation were 78-79% before the operation.
Manal, Meron and his mother
The surgery involved closing the VSD , and creating a one leaflet pulmonary valve called a monocusp valve, and enlarging his small pulmonary valve. The repair went very well–he had some difficulty with clotting quickly enough so was bleeding from some small areas around the suture areas-so his case took longer than expected.
Because of that , we decided to postpone Rafeef, the 2 yr old VSD , until tomorrow morning for surgery so se could watch Meron closely this afternoon.
Rafeef and her mother waiting:
Meron’s parents obviously were very relieved to see him come out of the operation, especially since it had been a long day.
The team after Meron arrives to ICU:
After several hours watching Meron, his chest tube continued to show that he was bleeding, and despite our best efforts to give him blood, clotting factors and platelets, we decided to take him back to the operating room to try and see if there was something bleeding that needed to be addressed. When Mark opened him up, there was one very small bleeding area from where needle hole of where a stitch would have been that was the only source of bleeding. So that was addressed and he was closed up and went back to the ICU.
The “all male A -team”ICU nurses, Mark and Mike
Meron returned from OR much more stable and less bleeding-so hopefully the rest of the night (what’s left) will go more smoothly…till tomorrow
Fall mission 2013 day #6 (Wednesday)
Well..we are past the half way point of the mission with just 3 days left! It has been flying by so quickly this week!
Rounds started in the ICU this morning with Daivid. He had a good night, so was extubated first thing this morning and doing well and resting comfortably. Ahmad, his roommate also has a good night..his saturations are stable , high 80’s this morning off oxygen and he finally got his water last night, so he is not as animated this morning!
Daivid:
Ahmad:
Abdullah still has some chest tube drainage so he may stay the majority of today in ICU or if slows down, go out to step-down floor later today. Mah’d had a fever overnight, probably some atelectasis of his lungs , but his art line and central line and chest tube will come out today.With the fever, we will likely watch him in the ICU one more day.
On the floor, Waleed and Taha and looking good and are ready to go
home today! Our first patients to be discharged from the mission-always a great feeling.
Taha is dressed and ready to go!:
Sondos who is also on the floor unit looks great today as well and isn’t crying when we see her this
Morning -she is either feeling better or getting use to seeing us now.
Sondos sleeping:
We had early morning visitors–the Rotary club of Amman cosmopolitan board members visit the children. Dr. Nawar Fariz, Marwan Hayek, Rami Sha’anan, Lamia Yassine, and GOLA president Sirene Khurma. We also had a special visitor –Simona Bishouti, vice-president of ABC bank, which is the largest benefactor of GOLA. We visited each of the children, and Sirene presented the families on the step down floor with specially hand-made quilts for each of the children, with a hand-stitched square on each one with the GOLA logo. Each one is different and such an amazing gift for the families to remember their benefactors that helped make their heart surgery possible.
(Left)..Dr. Nawar, Simona, with Waleed
Right (Waleed’s mother, Sirene, Rasha)
Marwan Hayek, Simona , Waleed and Waleed’s father
Waleed receiving his quilt with the GOLA logo:
Simona and Taha:
Taha receiving his quilt:
Rami Sha’abam , Marwan Hayek and Simona Bishouti with Taha:
Taha with the thumbs up for GOLA:
Sonos receiving her quilt from Sirene:
Sonos and her mother:
The first case for today is Osama Ishaq Atieh Mughrabi, the 5 yr old we had previously operated on in a 2008 mission for sinus venosus ASD and partial anomalous pulmonary veins. He has been doing well since that surgery , but then a year or so ago was noted to have developed a subaortic membrane and some very mild regurgitation of his aortic valve -so he had the membrane removed today. All went very smoothly with the surgery and he went to ICU and was extubated shortly thereafter.
Osama shortly after returning to the ICU:
In between cases, we finally were able to meet Meron Mazin Yacob, a 5 month old baby with Tetralogy of Fallot who was referred to us from Iraq just a few weeks ago. He has a fairly small pulmonary valve and his saturations are ~79-80%. The Tom Deierlein foundation out of New York provides the funding for our Iraqi patients-on this mission-for Daivid and Meron tomorrow. He will be our first care tomorrow. We told the family, who originates from Bagdad but now lives in Irbil, that the Tom Deierlein Foundation is having their annual fundraiser tomorrow night (12/5) in NYC and that Meron will be talked about as one of the recipients of their fundraising efforts! The parents are so grateful for this opportunity to have their baby’s heart disease repaired-and truly were excited to hear that Meron would be talked about at the fundraiser.
Meron and his parents:
Mark, Meron and his parents:
The second operation today is Alyaa’ Moh’d Ali Adqes, a 17 yr old girl from Jordan with a very large ASD secundum. There was not enough tissue on either side of the defect to be able to use a device to close it in the catheterization lab. She did well during the surgery-the hole between the upper chambers measures almost 28 mm. (A little more than an inch!)
Alyaa’ before surgery:
The second case for tomorrow will be a 2 yr old girl from the northern city of Ramtha in Jordan(they are originally from Syria) named Rafeef Ahmad Saleh Al Refa’i with a moderate size VSD.
Rafeef:
During evening rounds, we had another visiting group of Rotarians with Fares Shaddad, bearing gifts for the children and visiting with the families.
They were so excited to see the children, they were like their own paparazzi!
Sonos and her siblings:
Sonos was perfect for the crowd!:
The conclusion of the day was spent at Sirene’s beautiful home with a American style Thanksgiving meal . Friends, colleagues , Rotarians and GOLA members all gathered for an incredible meal to celebrate the success of the GOLA program and the work that has been done this far (as well as a beautiful cake to celebrate Mark’s birthday last week!) It was an amazing gathering of so many people who have all joined together for one common goal-to help heal hearts of children in this region.
Mark’s birthday cake!
Group photo:
Fall mission 2013 Day #5 (Tuesday)
We had a very lovely evening last night with our GOLA president Sirene Khurma and her brother Haithan at a restaurant called Cantaloupe. Sirene has been taking very good care of not only the children and families for this mission, but our team as well! Manal and her husband Yoseuf were able to steal away a bit of time from the baby to join us. We saw some spectacular views of the city of Amman from the terrace rooftop of the restaurant.
This morning we made rounds on our two surgeries from yesterday , Abdullah and Mah’d. They both did very well overnight, will have lines pulled today and maybe to the floor tomorrow.
Sonos also did well overnight, she is going to get a blood transfusion today, but then likely go out to the floor later this afternoon.
Abdullah:
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Mah'd:
Sonos:
Waleed and Taha on the step-down floor are also feeling better. They both have many family members visiting, cousins, and clearly are feeling better and more back to themselves. Waleed’s family even asked me to find him a wife (he’s 11)…not sure I would offer up one of my girls hands in marriage yet..but he is very cute!!
Taha:
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Speaking of anesthesia..have to give a big shout out to the OR team this week.
Ahmad arrived in the OR about 8:35-8:40..and by 9:10am they had him
Intubated, arterial and central venous lines in ,scrubbed and ready to go. The team is efficient and so good at what they do ..it makes the start of our day fantastic way to start!
Hanan (Scrub nurse):
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Mike: (has been 3 people in 1 this week-doing a good job filling in for you Jill and Becky)
The operation went well and he was back in the ICU before noon, extubated shortly thereafter. To continue on how funny this kiddo is–after he woke up, of course, first thing he wanted…as every single verbal child we have operated on does ..is WATER. But in all our trips here, he by far, takes the cake of the funniest “water story” to date. He was telling both his ICU nurses that he felt like he was in a desert..that’s how bad he needed water. Then when that negotiation didn’t work for him, he told his mother that he had better ask the doctors and get him some water..or he was through with her..breaking all ties essentially with her as his mom! It had all of us laughing so hard we were near tears!!
We had some wonderful visitors today to see our patients . Sirene and fellow Rotarian Dr. Nawar Fariz stopped by to visit the kids. Dr. Nawar is a radiologist consultant also she was the First Lady doctor at King Hussein Medical City where she headed the Radiology department there, and ًalso as a Rotarian, she is one the founding members of our The Rotary Club of Amman Cosmopolitan and long time supporter of GOLA.
We also had a visit from Luceen Nsheiwat, a group fitness instructor who hosted a GOLA fundraising event of a “Zumba-thon” where almost 200 ladies came out and danced with her to raise money for the heart operations. They raised nearly $12,000-enough to support 2 of the children’s heart surgeries. It was wonderful to be able to show a benefactor exactly where the money they raised by donating their time (and energy in her case) goes to -and the very real results of their efforts.
Luceen and Abdullah:
Luceen and Mah’d:
The second case had a bit of a delay because of getting the blood ready, but by 3:30 we were operating on Daivid Khalil Ibrahim Al Patti, the 5 yr old boy from Iraq with a large VSD and pulmonary hypertension . We did testing in the OR, found his pulmonary Artery pressures to be at least slightly below his systemic pressures, so we proceeded with the repair. Remarkedly, after the VSD was closed the pulmonary artery pressures were about 1/3 of the systemic (as opposed to 90% systemic when we started) . We were optimistically cautious with his return to the iCU, and will keep him sedated and intubated overnight so he does not have any spells with his elevated lung pressures.
When we made evening rounds, we encountered many family members , so it was nice to talk with the them, give them updates, and of course, they love to take our pictures with the kids and them!
The team with Abdullah:
The two children for tomorrow’s cases were admitted and we stopped by their rooms for a quick pre-op chat.
Osama is a 7 yr old we previously operated on for PAPVR, ASD who now developed a subaortic membrane and mild aortic valve leakage (similar to Waleed’s operation) so he will go to OR first case tomorrow to have it removed.
Osama:
Second case will be a 17 yr old girl from Jordan names Aliah with a moderate size ASD secundum (hike between upper chambers).
Fall mission 2013-Day#4 (Monday)
Arrived at the hospital and started with morning rounds.
We reviewed the chest X-rays and a few kids need diuresis (medicine to help then pee!), but nothing earth shattering.
Waleed is looking great this morning, had all tubes and lines pulled this morning and will transfer to the floor.
Waleed(after tube just pulled):
Taha has a slight fever this morning, but X-ray stable and he also had his lines and tube pulled this morning. We will watch his fever, but he also will be transferred to the floor.
Taha (found him upside down in the bed!):
Sonos looks good this morning, taking a bottle and her X-Ray showed she needs some diuresis. She also has a dynamic component to her outflow tract, so we started her on a medication (beta-blocker) to allow that area to relax and help maximize blood flow to her lungs. She will keep her tube and lines one more day likely and transfer to floor tomorrow.
Laith had a good night. His X-ray this morning also has a congested pattern, which has us concerned again about the drainage from his left atrium, and whether the ASD is adequate. His blood pressure is good this morning, pulses are good distally (good sign after an arch repair), and he also will need diuresis today. We are leaving him intubation for the time being, will reecho this afternoon to reassess the atrial flow and determine whether he may need to go back to OR for atrial septectomy.
Overall, though, he looks good this morning.
Our first case this morning is Mah’d Amer Mah’d Da’Amseh, a 1 1/2 yr old from Jordan with double outlet RV, complex VSDs and a remote aorta. His operation potentially is going to involve a long patch, almost tunnel like pathway from the VSD up to the aorta which is far rightward and may become narrowed over time. After a lengthy discussion (mini-conference) in the OR with pre-op TEE, we elected not to attempt a VSD closure at this time. Our worry was the VSD tunnel would become restrictive at his current size and he has multiple muscular VSDs that might be difficult to close, which might make his post-operative course challenging. So instead, we did a PA banding to try and protect his pulmonary vessels from developing pulmonary hypertension to allow him to get bigger, and then hopefully be able to proceed with his VSD closure when he is bigger.
The case goes smoothly and he is in the ICU by noon.
While we were in between cases in clinic, we had a post-op
visit from Afnan. You might remember from our spring 2012 mission she had a Fontan completion with complex heart disease, dextrocardia, single ventricle, TAPVR. She was very sick post-operatively, had kidney failure. She is now in first grade according to her father, and doing very well. It was great to see her today-especially since the last time we saw her so was so I’ll, still on a ventilator in the ICU.
The 2nd case for today is a cute 4 yr old boy Abdullah Ismael Hamad Abu Alrobo’a from Palestine with a small to moderate size VSD and a sub aortic membrane. He lives in a Palestinian refugee camp in Jordan and is one of 10 children. His father drives a truck and can hardly make ends meet.
Abdullah:
We did a cath after the second case of Daivid Khalil Ibrahim Al Batti, the 5 yr old boy with a large VSD and pulmonary hypertension from Iraq. We needed to measure his pulmonary artery pressures and see if he is reactive to oxygen, which means that if he develops problems when we close his VSD-we are able to use oxygen to help the pressures decrease. There is no nitric oxide, an inhaled medication we use in the States in cases like this, to lower the pressures. His numbers during the cath appear to show that he is reactive to oxygen, so we are likely
to proceed with surgical closure of his VSD, possibly tomorrow.
The first case for tomorrow will be Ahmad Mahmoud Al Ma’ani a 7 yr old boy with tricuspid atresia, hRV who has had a bidirectional Glenn previously done and is scheduled for a Fontan completion first thing in morning.
Mark and Dr. Hamdi talking with Mah’d parents:
Anne and Sonos’ mother:
Fall mission 2013- Day #3 (Sunday)
The day began with our early morning ICU rounds.
Both boys from yesterday are doing great. They are both drinking and starting to eat today, and likely will move out of the ICU tomorrow.
Waleed
Taha
The first case for this morning is Sondos Saleh Mohammad Al Khateeb, a 10 month old girl from Amman. She has Tetralogy of Fallot-but is consider “pink” in that she has only a mild amount of narrowing below her pulmonary valve, but the valve itself can be spared because it is of near normal
Size. She has her VSD closed, the muscle bundles and narrowing below the pulmonary valve resected, and the TEE after the case shows no residual VSD. She is extubated shortly after returning to the ICU and looks very good. Her mother is a distant relative of Dr. Kal–he comes from a long lineage-so Sometimes we will run into a 2nd or 3rd cousin related to him!
Sondos
Dr. Kal and Sondos’ parents
After the first case, we spent much of
The lunch hour evaluating cases for this mission and potentially future missions. We did a sedated TEE on Mariam from Iraq and found that her VSD has mostly
closed and is very small, so she will not
require any surgery to close the defect. Her brother, David, who has a large VSD but has pulmonary hypertension will go to the cath lab tomorrow for evaluation of his PA pressures-to determine if he is operable or not.
Mariam
But the best part of the afternoon we return visits from previous patients. First , Adian Firas Ali, 3 yr old from Bagdad we first operated on 1 1/2 yrs ago with a central shunt for discontinuous pulmonary arteries . Then Mark did a RVOT patch across her pulmonary valve spring 2013 mission trip. Her family has been living in Jordan since the surgeries–awaiting determination of when her next surgery will be. Her pulmonary arteries have been growing well-so she will
Likely be ready for VSD closure on our next mission trip.
Aidan didn’t want anything to do with us for pictures:
But her twin sister was very outgoing and receptive: (may be because she hasn’t had a heart operation before!)
She started warming up with her twin sister:
One more attempt with the team:
Next , one of our team favorite patients from Syria, who we have also
Operated on twice before, Nour Olabi came back to clinic for reevaluation. She is now 9rs old, a third grader, and she and her family have left Syria and are also living in Jordan. She looks so grown up now (also has new glasses!)
She also has a shunt, and then RVoT patch, very similar to Aidan. She had a cath on one of our last mission trips, has had multiple of her collaterals (vessels that have rerouted blood flow to her lungs) coiled in the past, and her right pulmonary artery still remains small. We may do another cath at some point in the future, and then contemplate closing her VSD as well-possibly on next mission. Her saturations are 87-88% and clinically she looks fantastic! It feels like we have been able to watch her grow up-since we first operated on her in 2009.
Nour and the team:
Nour and her brother and sister:
The afternoon, second case for the day is on a brand new baby, born 4 days ago named Laith Maher Mithqal Zaidan, from Jordan. Laith was diagnosed prenatally by echo with complex heart disease. He has interrupted aortic arch, mitral atresia, transposed great arteries, and single ventricle. The baby was transferred from the hospital it was born at to Al-Khalidi Hospital yesterday and we did a CT/angio scan to evaluate the arch. The baby has a type A interruption , which means all the branches of the aorta come off the aorta before the interruption, and then the rest of aorta is supplied and connected by the PDA. The baby is dependent right now on prostaglandins , a medication to keep the PDA open. This will likely require multiple operations down the road, but the most pressing issue is to connect the aorta and try and augment (enlarge) it as best as possible. We decided to approach the aorta through the side of the baby’s chest (called a thoracotomy) and reconnect the ends together.
Mark was successful in doing so with no significant BP gradient from above and below where the arch was reconnected. He also was able to do a PA banding to limit blood flow to the lungs. Next the baby will have to had the atrial septum opened up so the blood flow from the pulmonary veins can mix return better to the pumping chamber size the mitral valve is not
Allowing blood flow to return to left ventricle. Eventually the baby will need a HemiFontan and Fontan operations when older.
Baby Laith:
The children from today are all stable in the ICU when we make our evening rounds.
Tomorrow’s first case is Mahmoud Amer Al Daabseh, a 1 1/2 yr old with complex DORV (double outlet right entirely, VSD), remote side by side grey arteries, who will need a long tunnel patch to close the VSD to the aorta, which comes off the right ventricle.
Mahmoud:
Depending on how the day progresses tomorrow , we will either do a 10 yr old boy from the Palastinian refugee camp with a VSD or a 8 yr old patient we had previously operated on with PAPVR and a sinus venous ASD, who has now developed a subaortic membrane.
We also had a visit from our good friend Mustafa Nesaridden, a Rotarian and one of the first GOLA members we were privileged to work with. He and his wife Ghada, have been huge advocates of our missions, as well as GOLA and the Rotary club of Jordan. Mustafa informed us tonight that next year he has been elected as the district governor of the Middle East region-what an amazing honor.
Moustafa and our team:
Moustafa and Dr. Kal:
After leaving hospital somewhat late this evening, we stopped off at one of favorite restaurants for a quick bite-best hummus and pita in town, followed by outstanding falafel.
Riley International Heart Missions 
