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.

A minor setback for Jose

Jose's sclero has been delayed until Monday by Dr. Berenstein. His coagulation factor is not where they want it so they are giving him medication to help with that and will do the procedure on Monday. His surgery is now scheduled for Wednesday. Margaret is doing great and the new schedule will put them home over the weekend which works out great for their family. Jose will remain in PICU throughout the days in between procedures and after surgery until discharge. This is routine for all of Dr. Waner's AVM patients. No need to worry...this is a more relaxed side of PICU and very comfortable with private rooms painted in jungle themes. They are right next to the nurse's station so Margaret can slip out to shower and such. Scott leaves to come home Sunday.
This creates a much longer hospitalization for Jose...a week more than expected. The hospital has been wonderful about absorbing the increased cost that this involves for them financially.

Surgery delayed for Jose until Monday

Thank you to all who have written and asked about Jose and his foster family. I have passed on your thoughts and notes to them on your behalf. Unfortunately, Jose is going to need more injections of sclerotherapy medications into his malformation tomorrow morning, which means that the surgery will be delayed until Monday. He isn't very happy about being in the hospital, and I know Margaret and Scott are tired, but Jose is safe and in expert hands, for which we are grateful. His story is being watched in Central America on the TV station, Telemundo. The reporter who interviewed him yesterday was to come back tomorrow after surgery, but I imagine they will wait until early next week. We hope Jose's parents were able to see their son on TV in their village, I can only imagine what a thrill that would have been for them.
Jose's father is a rural farmer in Guatemala, and he has to keep his cell phone dry so he doesn't take it to the fields with him. His wife Maria has been keeping watch over the phone this week and has been updated daily by our translator.

Jose is resting in Intensive Care tonight

Jose had a long day but is doing very well. Today's treatment involved five hours of sclerotherapy into the facial malformation. This was done under general anesthesia, which has historically been difficult for Jose to recover from without stomach issues. His did very well today with this, and tonight at 6 was drinking apple juice. The doctors placed Jose in pediatric intensive care due to the large amount of facial swelling following the injections. I know it is hard to imagine the malformation being any bigger than it already was!
Dr. Waner and Dr. Berenstein will make a decision early in the morning on doing another set of injections, and if they decide to do this, the surgery will be delayed at least until Friday. This is a very big AV malformation, and the foster mother was told by the doctors today that Jose's life expectancy without surgery would have only been into his early 20's.
Margaret and Scott are holding up well, and one of them will be with Jose each night. They are very appreciative of all of the kind wishes being expressed on Jose's behalf. Our translator called Jose's parents in his Guatemalan village tonight to update them on the progress.

Two boys in Guatemala say "thank you" to their brother's donors

When Jose's parents heard (via our wonderful translator Stanley) that Jose was going to be able to have his surgery, they were overjoyed. Maria, Jose's mother, dressed Jose's two little brother's up in their best clothing (recently donated from the U.S.) and had a neighbor who owns a camera take this photo for Jose to take to the hospital. Jose has not seen his siblings or his parents since he arrived in the states on August 27th of last year.
Jose is in New York City as I write this. His injection procedure into his facial AV malformation is at 7 AM Wednesday morning, and surgery is scheduled for Thursday morning. We are very grateful to Midwest Airlines for the donation of tickets for Jose and his foster parents, Margaret and Scott.
Thanks to our amazing donors, the $18,700 was wired to Roosevelt Hospital today at 1:00. Jose is fortunate to have such generous donors. Thank you ALL and I will keep the blog updated at the week progresses.

Surgery scheduled in New York City for a special boy from Guatemala

Forty-seven generous donors have sent the required $18,700 to allow Jose to have his surgeries in NYC on August 25th and 27th! Two surgical/interventional radiology procedures will be necessary to resolve the AV malformation that Jose suffers from.
The funds required to obtain the surgery for Jose have to be collected and deposited, then wired to NYC by next Tuesday. Thanks to a phenomenal response from those who responded to Jose's need, he is now scheduled to arrive in New York on a donated Midwest flight, and the flurry of activity will start soon after. He is expected to be hospitalized for 4-5 days.
Margaret and Scott, the foster family, are paying for the hotel expenses in NYC. If any funds come in that are over the amount we needed to raise, we will be able to help them with travel needs.
There really are no words that are adequate to express the appreciation of those who have helped this special little boy from rural Guatemala. Most of the donors have never met Jose, which makes the trust they placed in COTA all the more special. From a group of nurses in New Jersey to a donor in California, the concern for Jose reached coast-to-coast.
I asked Carlos, Jose's father, to write a letter to his son's benefactors. I will send a copy in each thank you note. He and his wife are very grateful.

Amazing response to Jose's need

Seven year old Alex had a lemonade stand and brought $33 to my door. I sold an aquarium for $40 on Craig's list. My sister is sending $500, and a brother did the same. Friends of a host family contributed $1,000; a nurse who travels with the COTA teams has sent $200, another sent $25. Two friends dropped off checks today, and another family who has adopted from Guatemala sent a wonderful donation. The list goes on....many kind people who have been touched by Jose's story.
Jose's foster mother took a photo of him thanking all of his donors. If all of our pledges come in on time (deadline is next Monday), we will be within $1,694.89 of our goal. In this economy, raising nearly $18,700 in such a short time could only be accomplished through each of you. What an amazing gift you have given Jose.

Keep up the good work!

Thank you to all of Jose's new friends who have been so generous about donating toward his surgery. We are 3/4's of the way to our goal! Only $4,300 left to go. Amazing effort. I really appreciate all who have sent this blog on. The money must be in the bank account of the hospital in New York by next Tuesday.
The phone lines have been busy between NYC, where the surgery will take place, and Lexington, KY, where the COTA office is, on into Tennessee, where Jose is in foster care. Now our fundraising goal looks promising, there have been many e-mails and calls made to coordinate flights to NYC, paperwork, pre-op physicals, the power-of-attorney papers from Guatemala, and the schedules of all three specialists who will be caring for Jose at Roosevelt Hospital. Jose's parents in Guatemala are being kept informed of the big things happening for their son thanks to the generosity of people who have never even met this special little boy.
Stay tuned!

Update on Jose's fundraiser

What an incredible show of support for Jose there has been these last few days. From a former COTA foster parent in Nashville to a group of nurses in New Jersey, and on into Wyoming from a COTA friend who filmed a documentary on our program....the concern for this little boy has been reflected in financial donations. To date we have $5,676.34 in-hand and $6,200 pledged. This leaves Jose's fund with a total of $11,876.34 if all pledges are received.
Please help by passing this message onto any friends or family you might think would be interested. We are still $6,823.66 short, and if by a miracle we are able to raise anything over our goal, it would be much appreciated. The foster family is prepared to pay their own travel and hotel expenses to NYC for Jose's surgery. What a gift if they didn't have to.
Thank you to all who are helping. I have let Jose's parents know of your efforts.
Jody

Jose from Guatemala needs your help

Jose (see below) has a chance of a lifetime to have his large facial hemangioma removed in NYC. He is scheduled for surgery with Dr. Milton Waner at Roosevelt Hospital on August 26th and again on August 28th for both interventional injection therapy and for surgery. The renowned international specialists Dr. Waner and Dr. Berenstein have donated their professional skills.
Roosevelt Hospital is being kind enough to give us the hospitalization at cost. Having said this, we still need to find $18,700 and have it in their hands by August 24th, before admission.
I have done everything possible to get this bill to the lowest figure. The pediatric anesthesiologist has been asked to and has agreed to donate his services. That helped bring the bill down from $25,000.
COTA has been trying since August 27th of last year to help Jose with this AV malformation. He was born with this, and despite 7 injection treatments over the past year in Tennessee, it continues to grow. Surgical intervention is our only hope of keeping this "beast" of a malformation from growing. The medical concerns are tracheal deviation and bleeding from tumor injury. These are and have been valid concerns.
Two COTA foster families in TN have been very generous with their time, networking, and financial contributions to Jose's care. His foster family has donated their home, travel, financial resources and most importantly, their love for this special little boy. All those who have grown fond of Jose, and have communicated with his family in Guatemala, are in hopes that this miracle can happen for him.
Any financial assistance for Jose would be much appreciated. I will keep the blog updated on how much we are able to raise. To date, we are at the half-way mark, with less than two weeks to reach the goal. Any checks, no matter how small, can be sent to:
Children of the Americas
1781 Eastwood Dr
Lexington, KY 40502

Many thanks for any help,
Jody Greenlee, RN
Vice President, Children of the Americas