Josue (Joe-sway) Caleb

(Becky: Connie arrived safely at home Saturday at 10pm, after twelve hours of travel from Honduras. I facetimed with her yesterday for close to 2 hours, just checking in and get all of the scoop. She looked rested and great. I was a teary mess though. I am so proud of her, and still just blown away by all of the beautiful ripples that Oakes has created in our lives (lots of tears).

So, Connie has several posts to share. Here is the latest that was sent over last night.)


Sunday, 10/26/13

My young interpreter, Alejandra (we called her Ale) and I spoke with Josue’s father, also called Josue, at his son’s bedside. Their family lives in a small, rural Honduran town, El Progreso, four hours by car from Tegucigalpa. Padre Josue works in a textile factory in San Pedro Sula, two hours away from Progreso.

For Geographical reference points, Tegucigalpa is located in south central Honduras, closer to the North Pacific Ocean. San Pedro Sula is north and east, close to the Caribbean coast.

Little Josue is four years old, an only child. At birth, doctors discovered a problem with his pancreatic artery, and operated when he was fifteen days old. During his hospitalization a heart defect was discovered. The doctors told Josue and his wife that their son would need heart surgery, as well. They have been waiting since that time for the needed surgery, but they didn’t know where to take him. They had taken Josue Caleb to three different cardiologists but could not find a practicing pediatric cardiac surgeon anywhere in Honduras. Josue also has Downs Syndrome.

                                             Fr. Fenton examining Josue after his surgery.

In 2011 Josue’s maternal grandmother saw a poster for Helping Hands for Honduras/ManosAyudando a Honduras in the Hospital del Torax in Tegucigalpa. (My next post will give a little background on Helping Hands for Honduras (HHH).) She asked for information and learned that HHH was partnering with the International Children’s Heart Foundation to provide a cardiology clinic. During the next mission Josue was examined and one of the cardiologists performed a catheterization and determined that Josue needed heart surgery.

When his parents brought Josue back to the next mission in 2012 he had the flu and a fever and was not a candidate for surgery. When we asked Pedro Josue what it was like when the surgeons could not fix their son’s heart and they had to wait for the next mission, he said they were hoping that when they brought Josue back he would not need the surgery anymore. And when you came a few days ago for his examination, and they told you he would get a surgery this time? Josue’s father said he felt a little nervous when they first found out, but he also felt confident (in the doctors, that all would be well.)

Unlike many heart babies, Josue has a lot of energy. He is very, very strong. He loves to eat, play soccer, swim and take baths. There are chickens and cats around his home that he likes to chase and play with. Josue has limited verbal skills, but he is very adept at getting his point across. Soon after Josue returned from the OR, he started waking up. He didn’t want the cannula in his nose and kept trying to pull it out. After repeatedly moving his strong little hand away, the nurses got a pair of Halloween socks out of the “goodie box” and slipped them over his hands so he couldn’t wrap his fingers around the tubing.. When he was upset, everybody knew it and he was all over that bed. But by the second day post op he was sweet and cooperative, kicking at the balloon one of the nurses held up for him, swatting at bubbles, and mimicking hand gestures with his father. Josue was clearly a handful, but his father was endlessly patient and gentle.

We asked Pedro Josue if there was anything he wanted to say to HHH and ICHF? “We are so grateful. In this country this surgery would not be possible without your help. The prices for the surgery are very high and there is no budget to pay for it. Thanks to all of you (HHH & ICHF) that care to the babies is possible. I hope that God gives you back all that you have given.”

Connie with Josue, and Padre Josue. Love those Halloween socks!

Nurse Amber J blowing bubbles for Josue.

Day 7: My Last Day at Hospital del Torax & Dinner at Gino’s

I just got back from dinner at Gino’s with the entire Team Honduras (except for the two CICU nurses who were on the night shift). It was great to relax and eat some great Italian food with old friends! But wait...it’s less than a week since we met!

There is an interesting web of connections here. Some of the team members have worked together before: either on missions or at a hospital somewhere in North America. Others went to med school, or nursing school, or high school together and decided that a great way to spend time together is to volunteer on the same medical mission and meet up in an interesting part of the world. About a third of the team came from Canada. Most of the team members are frequent travelers and there have been many conversations about favorite trips and travel stories. Also a lot of friendly teasing about nationalities, states, and regions of the country.

We’ve had breakfast, lunch, and dinner together for the past week. We’ve sat waiting on the bus for someone who was running late in the morning, or who couldn’t drag themselves out of the hospital at night, and held our breath together ridding through this crazy traffic. We’ve spent a lot of time in the ICU together, sometimes scrambling to take care of sick babies and other times sharing stories while we wait for new patients to return from the OR. Great memories from spending a week with so many stellar professionals who have given up their vacations and time off, and paid their way to Honduras.

Joining a mission to South America was something I had considered years ago, but never did it. I wouldn’t have joined this trip, either, if it hadn’t been for Oakes and his journey, or for Becky asking me to go and represent the Mighty Oakes Heart Foundation. So if you’ve been reading this blog, and you’re  thinking “...I could do that!” or  “I’ve always wanted to do that” maybe now’s the time. Maybe now’s the time to do it. No matter what your skill set, there is role that you could fill. And especially, if you speak Spanish, there is a great need for people who can help translate.

I have more interviews to type up and stories to share, but for tonight I’m just going to end it with a few photos of the staff. I’ll get a chance to say goodbye to them when they file onto the bus, and then I’ll be heading to the airport about 10 am, but won’t arrive home until 10 pm.

Thanks to all who have followed the blog for the past week. It has been a true honor to represent my strong and brave little grandson, Oakes, on this mission trip. Please check back in tomorrow for another interview.

(Becky: Connie did not label these so I don't know who is who, but I love them all in a MIGHTY way!

Thank you, International Children's Heart Foundation for letting MOHF tag along on this mission. You have opened our eyes CHD families around the globe, and needs that are much bigger than what we have experiences in our wonderful, developed and privileged country. 

I am excited about where this partnership will go, and how it will allow us to support more families.

As Connie, mentioned she has more posts to share. We are also going to post an interview that between she and I, and I have lots to share on my own.....stay posted!)

Day 6: Wendy's Story

I sat down for a chat with Wendy in the ICU.  Alejandra, a patient young woman who volunteers with Helping Hands of Honduras served as translator. Wendy is the mother of 15-month-old Sebastian. (I took photos of Sebastian in the clinic on Day 2). Dr. Fenton repaired Sebastian’s ASD on Wednesday morning, 10/23/2013.

                                         Wendy, on Wednesday after Sebastian's surgery.

At Sebastian’s 7-day-old visit to the pediatrician Wendy learned that he had a heart condition. Medication was the only intervention recommended. There is no family history of heart defects. Wendy is an educated woman, an attorney. She was unconvinced by the pediatrician’s recommendation so she began researching Sebastian’s diagnosis on the internet. Sebastian was examined by five pediatrician’s and cardiologists before they found Helping Hands for Honduras.

Wendy’s cousin, who works in a hospital in a city 2 hours away told her that a brigata (mission) was coming to Tegucigalpa to perform by-pass surgery on adults. Wendy brought Sebastian and all of his records to the clinic for evaluation. The cardiologist sent her to the Teaching Hospital in Tegucigalpa for an echocardiogram and and electrocardiogram. With these test results available, the doctor told Wendy that Sebastian did not need heart surgery. She didn’t like that opinion so she kept searching. They told her to come to Hospital del Torax (the hospital where ICHF stages it's clinic and OR), to the clinic run by Helping Hands of Honduras. (see an upcoming blog on Helping Hands)

At two months of age Sebastian was evaluated by Drs. Fenton (cardiothoracic surgeon) and De Sessa, (cardiologist) who are members of the International Children’s Heart Foundation (ICHF) working in the Helping Hands for Honduras clinic at Hospital del Torax, in Tegucigalpa, Honduras. These doctors diagnosed Sebastian with two conditions: one was improving on it’s own, the other, an ASD, would eventually need to be repaired. Wendy finally felt relief, sensing that these doctors had finally performed a thorough cardiac assessment and correctly diagnosed Sebastian’s problem. They told Wendy to bring Sebastian back to the Helping Hands clinic approximately every 3 months, each time an ICHF mission returned to Tegucigalpa.

As Sebastian grew Wendy noticed some signs of heart problems that weren’t present with her two older children. Typically he could not finish an entire baby bottle at feedings, he tired quickly when he moved around, and when she introduced solid foods they had to be blended because he would start to choke when trying to chew solids. His weight has consistently been about 3 pounds under normal weight for his size.

As Wendy continued to bring Sebastian back for his follow up evaluations she hoped that she would be told that he no longer needed surgery. She was anticipating that the surgery would be done in August of 2013. But an outbreak of Dengue Fever caused the mission to be cancelled, and pushed back to October. (We were told that 5 children on the ICHF surgery roster for the rescheduled trip died in the interim due to Dengue.) When the mission was cancelled Wendy felt a sense of desperation. She said that she “kept him in a bubble, did everything....how do you say?....to a ‘T’” to keep him healthy so he would be a candidate for surgery when the mission returned.

I asked Wendy how she felt when the time came to hand Sebastian over to the OR team for his surgery. She said that she felt a normal amount of nervousness, but she also felt relief. She had complete trust in Sebastian’s cardiovascular surgeon, Dr. Kathleen Fenton (more in an upcoming blog), who told her there was only a 2% risk factor. Wendy is also a deeply faith-filled Catholic and was placing Sebastian’s care in God’s hands.

Would most Honduran mothers have persisted as you have in obtaining the best care for their children? Wendy says probably not because most Honduran women are more conforming, and don’t have the education, or the curiosity. She explained that the poor people do not question the doctors, and many of the doctors don’t know enough about cardiac issue to make accurate diagnoses. (She really said, “They suck.”)

You have acquired a great deal of information about pediatric cardiac defects in your efforts to obtain the treatment that Sebastian has needed? How will you use all of that information now? Wendy said that she will definitely continue to tell others about Helping Hands of Honduras and ICHF...and send them to upcoming missions. In her opinion the local physicians only care about money and the cost of evaluations and procedures is more than what the average Honduran can afford. A routine cardiac evaluation in Honduras costs about $500, while the per capital income of a Honduran family is about $350/mo ($7000 Limpera)

What advice would you give to other mothers, even in the United States? “Give wisdom to others. Always look for a second opinion. If you don’t like what the doctor told you, be curious, do your research, ask questions without being ashamed.” (The first cardiologist told Wendy that Sebastian would be dead in 60 days.)

“It doesn’t matter if we are rich or poor. The greatest gift is the love of a mother.”

Connie (Super Mighty!), Alejandra (interviewer) Sebastain & Wendy

Connie & Wendy talking

One strong Heart Grandma & her new Heart Mom friend!

                                              Connie blowing bubbles form Sabastian.

Day 5: Recovery

Our bus leaves the hotel at 8:00 am each morning. We stay at the hospital all day until the bus comes back bringing the night shift about 7pm. Then we wait for the shift transition. Tonight we stopped at an Asian restaurant and ate “family style.” Doing my vegan thing, it was the first meal that really filled me up since I got here. But dinner meant we didn’t get back to our hotel until about 8:30. And then it’s time to upload pictures, label them for the ICHF DropBox, and write the blog.

When I arrived this morning I followed Dr. Nita up to the ward where Erich had spent the night. He was composed and talking on a cell phone when we entered. His mother said that he was upset when he first learned about the open heart surgery, but he was okay now. His mom looked very concerned and I just felt such a connection with her.

Erich getting ready to head to the OR

Good recovery for our first three patients. Grecia is out of the ICU and smiling again. She took a shine to Shaun of the ICHF team. I think she’ll be headed home on Thursday. Little Even was perking up a bit today, coloring and generally looking comfortable. By day’s end he was running a bit of a fever, and sleeping, but he has also moved out of the ICU. Alan, whose surgery was only a little more than 24 hours ago was awake and looking pretty good. He has asked to stay in the ICU because it has better air conditioning. Smart man. I wish all of our patients could stay under the care of the ICHF nurses and docs.

Grecia heading leaving the ICU

Grecia with her friend Shaun

Sitting up with a sticker on her forehead, coloring & enjoying a sucker!

                                               Alan recovering about 12 hours post Op

This morning little Sebastian had his surgery and he did well. By this evening he was still sleeping off his meds, and looking sweet and cute as ever.

                                            Little Sebastian 6 hours post Op - looking good!

I spent the rest of the morning in the clinic. I observed a very interesting consultation between Dr. Boston and a 19-year-old patient, Heidi. Dr. Nita translated back and forth between them. Rheumatic Fever, at 12, damaged Heidi’s heart and she needs a valve replacement. Dr. Boston was talking to her about the pros and cons of a valve replacement. The mechanical valve would last a lifetime, but would require her to take the drug Coumadin for the rest of her life, at significant cost. And the drug created concerns if she wanted to get pregnant. The second option was to receive a biological valve, not have to take the drug, knowing it would only last for 2 years. Heidi told the doctors that after having Dengue Fever during her recent pregnancy, she had a tubal ligation immediately following delivery. That made it easier for her to choose the mechanical heart. Now the challenge is for the local organizers to find the right sized valve while the team in in Honduras. Fortunately a few more physicians will be joining the team in upcoming days and may be able to procure the needed valve so that Heidi can go on the schedule before the mission winds down.

                                          Heidi's consultation with Dr. Boston and Dr. Nita.

While I was in the clinic, a nurse wheeled and incubator into the echo room. The baby, Leah Maria, was full term, but only 5 days old. She had been born at another hospital in Honduras, called Social Security, which is available to Hondurans with benefits. The doctors had detected a heart defect during the time since birth. And despite her deep skin tone, the cardiologist described her as purple. He spent a good while doing an echo on her. He asked the nurse from Social Security Hospital if they could do genetic testing on Leah, before the ICHF team talked about surgery. But later found out that the testing couldn’t be done for two weeks. Leah’s heart issues are very serious. This makes the ICHF team have to do some serious decision making. Realistically, Leah’s repairs cannot be done in one surgery. Once the ICHF team leaves in about two weeks,  Leah would not have access to the types of care that she would need. If they do surgery in the next few days, it would mean that she would need one of the beds in our ICU for the rest of the mission. And so what I gathered from the team is that Leah is not a good candidate for surgery. And that means that her life expectancy will not be very long. When the cardiologist was delivering the findings of his echo, he was having a young woman do the translation. When he explained the part about ...”and the baby will probably die” the young translator and the Social Security nurse who brought the baby fell silent and looked at her, and they proceed to explain in Spanish. The cardiologist followed up with, “Did you tell them (the parents were both in the room) what I said?” Yes. There wasn’t much time or space in the room for the parents to digest that news. Or to react to it. Perhaps they had already heard it. Perhaps when their doctors determined that Leah had such a serious heart problem they encouraged the parents to come to the experts from around the world who had set up their clinic at our hospital. It would seem like a blessing that these two events would occur simultaneously.

                                                  Five day old Leah Maria with Mom.

There aren’t any pediatric heart surgeries being done in Honduras, except what ICHF does when their teams fly in for several mission each year. In addition to saving lives, ICHF’s goal is to bring in experts to teach the local doctors how to master these complicated procedures, one by one, as the local resources eliminate the need for the missions to continue in that location. But it takes a lot of infrastructure and dedicated local physicians to make that happen.

So if a baby like Oaksie was born in Honduras, and ICHF was coming in to do surgeries, he would probably not be selected as a good use of their time and resources. They want to teach the straight-forward heart repairs with the highest prognosis for success. They want to maximize their time in country, and repair as many hearts as possible. Even if a family had good insurance, and/or money, they could not buy the surgery because there are no trained cardiothoracic surgeons available. They would either have to go to another Central American City with a better pediatric cardiac center, or take their child to a develop country, like the United States. But in Leah’s case, there might not be enough time. This is why organizations like the International Children’s Heart Foundation and Helping Hands for Honduras and MOHF are teaming together, to help fund these heart repairs that change babies lives. I am hoping that my blogging tells a story that results in some donations  to these three

worthy organizations.

I was able to observe Erich’s (13-year-old) surgery under the experienced hands of Dr. Umar Boston, St. Louis Children’s own!  When they wheeled Erich into the OR, his eyes were big with curiosity and something that looked like fear. But he had decided to be brave, so I’ll go with that. I smiled and waved and gave him a thumbs-up from my spot against the wall. He returned the slightest non, and then returned to monitoring everything that was going on around him.

                                               Brave Erich in the Operating room.

While Erich was on by-pass, the perfusionist waved me over and explained in detail how blood is diverted away from the heart though all of the tubing, and back into the system without pulsing through the heart. That gives the surgeon time to make the amazing repairs. No complications during surgery, but he was still sedated in ICU when the team left this evening.

That reminds me of a funny story that a deacon at our church told. He is a plastic surgeon. The story went something like this, an auto mechanic told a cardio-surgeon that what he did, fixing motors was basically the same as what the doctor did fixing hearts. But the doctor quipped back, “Yeah, but try fixing the motor with the engine running!

Day 4: Two new heart repairs...these kiddos are tough!

 The first thing I did when I got to the hospital this morning was to check on Grecia in the CICU. She was alert, a little sad, and trying oh-so-hard not to cry, even though tears were rolling down her cheeks. It hurt MY heart to see her uncomfortable, and yet so strong. Many of us on the team packed our luggage with candy and little toys and games. The nurses have it stashed in a box in a room adjacent to the CICU. Twice I saw Grecia slide out of bed and walk with her nurses to the treasure chest. She wasn’t really happy about the trips, but the bribe of a treat was motivation enough.

Grecia giving Dr. nita a shot. Grecia wants to be a Doctor when she grows up! 

                                                             Grecia up and walking!

The first surgery of the day was 4 year old Even. He had an AV canal repair. When Even was assessed his mother mention he had a speech delay. She was hoping that when his heart was repaired his speech would catch up. Alas, not so. After surgery, Even was asleep most of the day. The intensivist explained that the children get a good dose of medication before extubation, and then they usually don’t receive pain meds, other than extra strength Tylenol. I couldn’t believe that these little ones were recovering from open heart surgery with no pain meds. One of the Canadian nurses said they make North American kids look like wimps.

                                                                  Little Even

Next, I went to the clinic to observe Pediatrician Nita doing assessments on the children waiting for heart surgeries. The actual clinic was being used to treat adults this morning, so we were able to create and “open-air clinic” outside under the covered porch, with a nice breeze. That was a relief since today we were given masks to wear in the clinic, due to all of the sick (contagious) adults and children.

Most of the parents learn about their child’s heart defects soon after birth, but have no money or insurance to obtain the surgery. So they come to the clinic when they know that the ICHF team is in country. And they come back day after day, driving long distances, and waiting for long hours, sometimes outside, with no amenities. (We have been asked to bring the roll of toilet paper in our hotel rooms to the hospital each morning. Many of the bathrooms at the hospital don’t even have any! And no paper towel dispensers, just a communal hand towel hanging on a nail.)

Dr. Nita asks each set of parents a list of questions that gives some insight to their child’s heart problem. Then she does an oral exam, and listens to their heart on both chest and back. She asked me if I had ever heard a heart murmur. No. So she had me listen to 13-year-old Erich’s heart, in three different places. In each I could hear a woosh, woosh, woosh, but I couldn’t really make out the heartbeat. Then she placed the stethoscope on her own heart and asked if I could tell the difference. I felt a little embarrassed  because I really couldn’t pick up her heartbeat. She explained that you really don’t hear much with a healthy heart, and that the wooshing I heard from Erich’s heart was the murmur. Nita said that murmurs are rated 1 -6...and a 6 is hardly ever heard. Most murmurs for surgery are a 4, including Erich.

                                                                         Erich

Soon after Erich came four-year-old Yair. He had an unusual barrel-shaped chest and what Nita called a “thrill”...a spot on his chest wall where you could actually feel the murmur, and see it. Nita said that Yair was a 5 on the murmur scale...very unusual. Unfortunately, Yair had a cold that made him ineligible for surgery during this 3 week mission. More waiting. Yair was delighted with the little bottle of bubbles that we gave him and didn’t want to quit blowing.

There were other interesting cases...beautiful children...worried parents, but I’ll save them for future posts, if they get on the surgery schedule.

After clinic I snuck into the back of the room where all of the doctors from our team and the Honduran doctors got together to view the echocardiograms and select the surgery roster for the next few days. I was fascinated listening to all of the dynamics that needed to be considered to put the schedule together. It looks like we won’t get to take over the ICU, due to the contagious illness (and that feels fine to me.) We have converted the recovery room into the ICU. This works while ICHF is here because the OR is reserved for us and no other surgeries will be performed. But there are only 5 beds. So we can’t accelerate the surgery schedule if there aren’t beds available. And there is only one vent, so we have to primarily select patients and repairs that will be extubated in the OR. We only have one intensivist, who can’t work 24/7. We want to give him a break. We need to get the difficult cases in so they have enough time to recover, but the difficult cases will take up beds for long periods, decreasing the total number of surgeries that can be performed. But some patients are too sick to wait until the next mission, which could be 6 months away. Some of the patients need more than one repair, but only the most critical one would be repaired. Can you imagine having to make such difficult decisions?

Dr. Boston from St. Louis Children’s Hospital arrived towards the end of this consultation with all of the docs, and they began assigning some up-coming surgeries to him. We met, and both said, “I’ve heard good things about you”...but didn’t get a chance to chat yet.

While they were reviewing the echos, the docs decided that our young Erich (13 years old and described above) was a great candidate for surgery on Wednesday. So while I was still listening to the consult, Erich and his parents came back into the clinic to get the news that Erich’s surgery would be done right away. I could see that Erich was really upset, and fighting back tears. Remember, he was a strong, serious, stoic young man, but he turned around and wrapped his arms around his mother’s neck...who was slightly shorter than he was. My heart melted. I knew that if someone told me I was going to have open heart surgery tomorrow, I’d be crying too. His mother explained to the staff that Erich was holding onto hope that he could have an orthoscopic repair through the groin. But Erich had the murmur that I heard through doc’s stethoscope, and it obviously needed a serious operation..

Today’s second surgery was a 20-year-old young man, Alan. He had recently signed up to join the Honduran Army, but a hernia was detected when he was enlisting. When he went for the hernia repair a heart defect was discovered. While the surgery may keep him from having to go to war, being a soldier brings one of the best incomes in this country. Alan was out of surgery and recovering in the ICU when we left.

                                                                             Alan

                                                                 Alan with his parents.

So tomorrow, little 14-month-old  Sebastain will have surgery in the morning, and Erich is scheduled in the afternoon. Please keep these boys in your prayers. They are both beautiful. I understand so little Spanish, but fear and love and pain are part of a universal, non-verbal language that I do understand.

My brother Gary told me, “you will stand out in Honduras. You are much taller than them, and you will look like a tourist no matter what you do”. My mere presence gives me an aura of importance, since everyone there knows the ICHF team. And since I’m walking around with doctors and nurses, everyone assumes I am one, too. Even the other doctors and nurses. But the camera gives me another veil of importance. I get the feeling that they think if I am interested in taking their child’s photograph it may mean a better chance of being selected for surgery. I wish I could tell them the truth.

As scary and ominous as open heart surgery is I can see how it becomes objective. The patient is draped and sedated. The surgeons have tunnel vision for this one specific part of the body. The perfusionist and the anesthesiologist deal with the rest of the person. The strong tug at my humanity and compassion is heightened as I watch these families wait patiently with great hope for their child’s healing. And then again watching the children move through their post-op recovery. I think we all agree that we never want to see children in pain.

PS I had a conversation with the cardiologist this morning. I told him:  “Please, if I get sick, don’t admit me to this hospital. Drag me to the airport and send me home”. Outside of the units that ICHF has control of, the rest of the hospital is abysmal. He assured me, “We take care of our own. If someone on the team gets sick, we take care of them.” Relief.

PPS I don’t mean this as a partisan political statement, but ...  I think if everyone could see what health care looks like in an under-developed country we would stop squabbling over the Affordable Health Care Act.