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Wednesday, October 23, 2013

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.

1 comment:

  1. These children are so inspiring, they may have weak heart but they are oh so tough. It must be really hard for the parents to know that their child has a congenital heart defect, worried about their child's immediate and long-term health, glad that there are organizations genuinely and active to help those children as well as giving hope and support to their love ones. I know one of the world's biggest challenges is improving global healthcare in most of the under-developed countries, I wish one day they would strengthen the health system and still strive to provide universal health care for people who are less fortunate.

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