Dr. Blaise Baxter and Jose

Post-op update on Jose

Jose's benefactors have been patiently waiting for post-operative photos of the surgery they donated. I have been reluctant to post any before now, as they were a little graphic. He had many stitches and was still fairly swollen for the first 5 days after surgery.
The photos below show Jose from 2 days ago. As you can see, he is still quite swollen and has a drain in his incision. Scrolling down to the post on August 12th will give you a comparison of how he looked before surgery.
The physician in scrubs with Jose is Dr. Blaise Baxter, who is one of the "angels" in Jose's journey to health. He donated seven interventional radiology treatments for Jose since September of '08, which were instrumental in the success of his surgery in NY.
What a brave little boy.

A letter from Sharon at Mayan Families in Guatemala

Thank you from Angel's mother.
Last year, Mayan Families helped C.O.T.A (Children of the America’s) organize a 17yr old boy to go to the U.S. for medical care. It took us a long time; almost two years to find the medical help that COTA so willingly and kindly offered for him. Angel had received a bullet to the jaw during an attempted car robbery. He suffered a broken jaw and had it wired together for over two years, his skin had started to grow over the wires. He had many rotten teeth and abscesses it was discovered when he got to the U.S.
COTA also found out that Angel's jaw was still broken after all this time. They repaired his jaw, his teeth and he was once again able to smile. He is now back in school and is a normal teen-ager again.
Thanks to the care he received, he is able to have his life back again.

Today his mother came with four beautiful hand embroidered wall hangings that she had made.
One was for Mayan Families, one is for Aida who works with COTA in Guatemala City, one is for Jody from COTA and the other is for the family that fostered Angel in the U.S. The mother made these beautiful embroideries herself.

This is a beautiful gift and I was totally surprised to receive it. These are Angel's little sisters and brother holding the wall hangings.

Jose is a brave little boy

Here is an update written by Margaret, Jose's foster mother who is at his side in NYC:

Lots of tears today from a weary and anxious boy who is tired of seeing herds of doctors around him and syringes and needles and blood. He's getting used to the tube coming out of his neck that goes to a bulb at its end and is full of blood. He sometimes tilts back his head and asks if there is any blood; he's still afraid of bleeding -- I think he's always known that's a danger. (Dr Waner told us at the office visit last Tuesday that the life-expectancy for this type of case left untreated would probably be 20 years old because of serious bleeding). They took out the arterial line and catheter this morning, so there are just the 2 regular IV's, and they use those to draw blood from for his lab tests. He is so afraid something else is going to hurt him, like an IV restart or needle stick, though we're pretty sure that's all in the past. Had some good pain med early this morning, but just plain old Tylenol since, and he says his neck and face do not hurt. He had a little oatmeal for breakfast, then a good serving of chicken and mashed potatoes from Boston Market across the street for supper. Otherwise just drank a lot of strawberry-kiwi juice from the corner market. I got out to the holiday inn after lunch time for a quick shower and to make sure they had extended my reservation til Monday. Then I picked up our "groceries", and got back up to his room. There is a very nice Child Life Specialist who sits with him and plays or watches a movie while I'm gone that hour each day. I'm sleeping here in the hospital, surprisingly well!

We walked a lot around the floor, around and around the circle. Sometimes Jose almost looked like he was sleep-walking. He denies any pain, just says he's tired. But we walked enough to get the extra fluids moving out of him and he started to pee a lot more and his hematacrit went from 19 last night (low) to 21.6 this evening. So no second bag of blood. No more lovenox - last dose of that was this morning at 10:00.

His anesthesiologist from the first procedure with Dr. Berenstein, Dr. Patti Brous, came up to see him and brought him a brand new Red Power Ranger outfit. Another special visit was Wed evening from an older Guatemalan lady and her husband. The woman had read about Jose in El Diario, a NYC paper, and she wanted to meet him. She came in carrying a copy of the paper with Jose's picture. She gave him a card and check for $20 for a new toy. I think her timing was very special: as she left she said a prayer over Jose and make the sign of the cross over him, giving him a little blessing. Jose has told me in the past that his mama prays for him sometimes and makes that sign, so it will be so nice for his mom to know that somebody was there to take her place at that the very night before his big surgery when she couldn't be there.

The right side of Jose's little face....it is a little face now. It seems so sweet and so little sitting on top of his still swollen neck. It's a little sunken, even, on the jaw there. They took out all the muscle and fat - and part of the nerve there - to make sure they didn't leave behind anything that might regrow. Big red line of stitches and steristrips going diagonal from corner of lips, halfway down neck, then all the way across neck from left to right. His lips are just a little pooched up on right, but I think they will come down. Dr Waner wants to fix the sunken part by adding some tissue there next time when he's back in to get the rest of the malformation removed. You kind of wonder, Where is Jose? Who is this? He hasn't looked in the mirror himself, and I don't think he wants to, but I imagine there will be some image adjustment for him to deal with as well because it's a big change. But he's proven to be quick and capable and very successful at making adjustments in life. And this is a wonderful one to have to make. What amazing skill in the hands of these doctors. What a life-saving and life-changing blessing for this little boy.

New blog design

Children of the Americas has had the benefit of many visitors to our blog during the medical journey Jose has made these last few weeks. In order to keep a fresh face for those that link onto our site frequently, we are taking advantage of a discount in a blog update being offered by our blog designer.
Nikki, from Canada, has designed our COTA blog as well as many others for non-profit organizations. She does this at a very reasonable price in order to raise money for her own volunteer relief efforts in the Dominican, Haiti and Ethiopia. It is inspiring to read about her work in her own blog:
http://www.madebynikki.blogspot.com/
Meanwhile, thanks Nikki for helping COTA reach all those who are interested in our work in Guatemala.

Our Guatemalan Assistant, Aida

Many people have asked about the logistics of bringing a child to the United States from Guatemala for donated care. The process is complex, time consuming and involves legal and pediatric assistance. The paperwork, airline flights with escorts, visa, B2 and foster care paperwork can take 3-4 months. The volunteer COTA board does the work from the U.S. end, but it would not be possible to work our medical miracles if it were not for Aida who has helped us for over 22 years on a voluntary basis in Guatemala.
Aida arranges embassy visits for the children that we bring out. She takes them to the Guatemalan pediatrician who donates medical screening. She meets them at the airport to get them safely on the plane and does the same again when they arrive home after surgery. Aida arranges CAT scans, post-care doctor visits, donations of formula to our cleft babies before they can travel, and most important, she keeps in contact with COTA stateside staff about the care issues involved in our patients. Since the year 2000, she has done this for 87 children who have traveled to the states.
Thank you Aida!

Maria returns to Guatemala

Maria, who has been hosted for a year in Cherry Hill, New Jersey, was flown back to Guatemala last week and returned to her mother. It was a tearful and emotional reunion of Juana and her only child.
Juana discovered Children of the Americas in 2006 when she first brought her daughter to our doctors seeking help for Maria's many congenital deformities. For five years Maria had a colostomy which was difficult for Juana to care for and to find supplies to care for. COTA supplied colostomy bags for this family over the last few years, but we were not able to perform the required surgery in Guatemala.
Following a successful year of care, surgery, immunizations, bowel training and dental care, Maria returned to her mother as a healthy little girl. Her foster parents flew her home to Guatemala and were able to relate to her mother the details of Maria's care. Aida, our Guatemalan coordinator, will oversee the details of a successful transition.
COTA is very fortunate to have volunteers committed to the needs of our pediatric surgery patients.

Jose successfully operated on

Following a five hour surgery today, Jose is resting well. He has 2 IV's, an arterial line, a foley catheter and a very large bandage on his face. His incision reaches from the corner of his mouth to below his chin.
Jose lost 700 cc's of blood during surgery and was given a unit of blood to compensate. His B/P started to drop, so the surgeons made a decision to stop their efforts to remove all of the malformation.
Margaret and I were able to talk tonight (her cell use is limited) and she sounds amazingly upbeat considering they have been in the hospital for 9 days. She is a short walk to the hotel where she is able to get a shower and change. She wanted me to thank all of Jose's benefactors for the amazing effort that was made on Jose's behalf.
Meanwhile, Jose's parents in Guatemala have had an anxious few days. They were concerned that the delay in surgery meant that the surgeons had changed their minds about helping Jose. They have been updated about the surgery and are very relieved.
More soon!

Jose still awaiting surgery

Jose has really been a strong little boy as he awaits surgery. He has now been in the hospital for a week. Initially our plan was for Jose to have returned to his foster home by last Saturday. Jose's AV malformation has proven to be even more of a challenge than we thought, and the current plan is for surgery on Thursday.
His last set of injection therapy went well, although he is very swollen. His nose is deviated due to the swelling and his facial malformation is hard to describe--very tight and swollen. Everything he is going through is going to be worth being able to look like a normal little boy.
Margaret is holding up well, although Scott (foster father) had to go back to TN without being able to be with Jose for surgery.
We have been very grateful for the great medical care Jose has been getting at Roosevelt Hospital in New York City.