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It’s day 12 @ the PICU in Children’s Hospital and Gavin was finally extubated late last night- yeah!!!!!!! He’s resting very comfortably right now, but he does have to wear a bi-pap mask continuously to help with air pressure and oxygenation. He still has to be in the PICU for close monitoring as his blood pressure is still high and his left lung is still slightly collapsed, but at least he no longer has a breathing tube down his throat-yeah!!!! So far, our boy is doing ok. We’re hoping to bring him home very soon (please!!!). Thank you all again for reaching out to us and for all your positive thoughts and prayers for our Spider-Man warrior.

Category : Blog & news

It’s day 6 at the PICU and so far, Gavin is pretty stable. 3 days ago, his X-Ray looked worst, but today it looks much better. He is still fighting a lot of the infection from pneumonia and pseudomonas, but the PICU team was able to lower the pressure of his ventilator so that he can do some of the breathing on his own. His blood pressure was high a few days ago, but now it has been stable. He is also able to open his eyes from time to time. The attending physician is hoping to extubate by the end of this week (hopefully). Thank you everyone for reaching out and for all your thoughts, powerful prayers and generosity. It’s amazing what parents are able to handle when it comes to the love of their children. Praise God for strength! Our lil Spider-Man Warrior continues to fight.

— at Rady Children’s Hospital-San Diego .

Category : Blog & news

Please keep our lil Spider-Man Warrior in your thoughts and prayers. Gavin was admitted to Rady Children’s Hospital on Friday night as he gave us a big scare. He was fine even while Ferd and I were away on vacation, but on Thursday a few days after we got back, he developed pneumonia and was on antibiotics and was stable that night. On Friday afternoon, my nurse and I took him to see his pediatric ian for a follow up and he was doing great while on oxygen, but on the car ride heading home, he started to turn blue and stopped breathing. It was so insanely scary we thought we were going to lose him. Thankfully as soon as I pulled up by my driveway, the paramedics arrived and were able to get a pulse. Gavin was then rushed to the nearest hospital and then was transferred to the PICU at Children’s. Apparently, he has pneumonia in his right lung and his left lung had collapsed. They also detected pseudomonas. He is now intubated and breathing well. His stats are very stable so he is just resting and heavily sedated. Sorry for the wordy description as I know some of you would like to know what had happened. Thank you to all our family and friends who continue to be there for us and reach out through good times and bad. I wanted to send you a picture of Gavin to send positive energy. Please continue to pray and send positive thoughts to our warrior son. He’s a fighter. I know he’ll get through this. Ferd and I are hanging in there and staying strong for our boy. We’ve gone through this before so I know our warrior will fight through it! Isn’t it interesting how life just throws a curveball at you especially when you least expect it and how life can change in a matter of seconds. I’ll try to update more later, but for now, Gavin is ok. – at Rady’s Children’s Hospital San Diego.

Category : Blog & news

Tay-Sachs Family Medical Conference in San Diego 2013

Hi friends and family,

I hope you are all doing well. I know everyone has been very busy especially after the holidays with catching up with work, family, responsibilities and all. 2013 so far has been great.  Anyway I just wanted to let you all know that the Tay-Sachs Family Medical Conference will be held in San Diego for the very first time. Traditionally, these conferences are usually held in the East Coast so we are very fortunate that it will be held in our “backyard.” Bong (Ferd) and I wanted to invite you to attend the conference and see what it is like to be surrounded by families like us. The conference is designed to give support, education, research update, hope, respite and relaxation for the families with TSD. I will warn you that this may be a very emotional experience, but at the same time, it is an opportunity to show support, renew, and re-evaluate the true meaning of strength, hope and life. The conference will be held from April 4-7, 2013 (Friday and Saturday will be the major days of the conference) and will be held at the Mission Valley Marriot Hotel. If you only plan to attend sessions with no meals, the conference is free so let me know if you are interested. You do not need to attend the entire conference at all and may attend any session or hour of interest if you wish.  We also need volunteers to help out in many ways (including reliable and trustworthy high school students)  to help volunteer with activities for the healthy siblings and earn community service hours. If you are interested in volunteering one way or another, let me know or you can contact, Kim Kubilus, Director of Family Services with NTSAD at 1-800-906-8723 or email at [email protected] If you would like more information about the conference and get an idea of the itinerary schedule and program, please click on the following link: Please do not feel obligated by any means. As our family and friend, we just wanted to extend an invitation to you all to see what it is like in Gavin’s world. Gavin by the way continues to do fantastic. We are very blessed by God as HE continues to give us strength to help Gavin thrive. His pulmonologist was very astonished to see him last Monday doing so well given that the winter was very good to him compared to last winter when Gavin had frequent ER visits.  Our proactive approach to alternative medicine and holistic therapy  (Faith healing massage, acupuncture, chiropractic care, and cranial sacral therapy that are all done every week) in addition to his conventional medications, therapies and doctor visits, have all really helped Gavin so much. Anyway, take care and thanks for taking the time to read.

Category : Blog & news

Gavin’s First Yoga Session

Gavin’s first yoga session at home with yoga instructor, Ms. Janice, who was kind enough to offer yoga to Gavin out of her own heart. Gavin attempts to do a butterfly pose and then relaxes into shavasana. Gavin was so relaxed soon after. We will definitely add yoga to all of Gavin’s alternative medical and holistic therapies daily! Namaste!

Category : Blog & news

Gavin is finally home!

After a long and crazy journey from Maryland, Washington DC and finally back to San Diego, Gavin is finally finally home. He was discharged from Children’s Hospital in San Diego yesterday late afternoon. You could tell Gavin knew he was home as when he laid on his recliner chair, he was instantly sound asleep peacefully with not a sound of any stridor breathing. Maria, his home nurse and Doreen, the nurse supervisor, were over at the house getting everything situated post hospital discharge. This was the first time in a month that the four of us were all finally home. Wow, it is such a great feeling to be home again. I want to thank you very very much for always checking the blog and for following Gavin and all of us in this journey. It was truly your prayers, love, concern, positive thoughts and energy that helped us see the light at the end of the tunnel. Though the journey is not over yet, we ask that you please continue to be with us all the way. God the father, has been so gracious and kind in holding our hand. A true testimony, that if it is in his will and if one continues to have faith, God will never leave you in your journey.  I’ll definitely be posting more updates occasionally. Take care and remember, where there is life, there is always always hope.

Category : Blog & news

Gavin and I are finally boarding-SD here we come!!!

Gavin Boarding on our way back to San Diego

Category : Blog & news

After a very long and HEATED discussion with all participating medical team members at the meeting Tuesday afternoon, Ferd and I were left with no choice, but to agree with the medical recommendation to re-intubate Gavin during the medical transport flight back to San Diego. Even though we as parents feel it would be safe for Gavin to fly without the need for a breathing tube, all the doctors at the meeting felt it would put Gavin at severe risk considering his obstructive upper airway which worsened either from the infection or side effects of Botox or a combination of both. It was very stressful. We felt almost attacked as the doctors were set on their recommendation. If we did not agree with the intubation, the other alternative would be for Gavin to stay at Children’s Hospital in DC until he would be discharged (could be up to 2 additional weeks) and then be transported on our own via commercial air with no medical support so there, it did not leave us with any choice, but to agree or we would not be able to take Gavin home sooner. It was very stressful, emotional and tiring and I know that the ICU team wanted to transport Gavin through the safest possible method, but it was frustrating to see doctors (especially new ones that we have never ever met before) making their recommendations as if they know Gavin more than Ferd or I. Anyway, we didn’t have any energy to fight even if we feel that Gavin did not need intubation and though I can possibly make a case for patient rights and get an advocate, it would delay us from coming home. So Finally, Ferd will be arriving on Wednesday night in San Diego so that one of us is already there, and on Thursday morning, the San Diego medical transport team will be arriving and preparing for Gavin’s transport back home. The process will take long as the team will also confer with the ICU team. It’s still uncertain as of now whether I can fly with Gavin or not, but I hope to find out later this  afternoon. The carrier that will be transporting Gavin will be a medical jet with a critical transport team consisting of an anesthesiologist, respiratory tech, and registered nurse. Gavin will then arrive at Rady Children’s Hospital in San Diego by Thursday late afternoon. If all goes well, Gavin will be extubated that same day or early Friday morning and will stay in the PICU until he is discharged. Hopefully Gavin will not be in the PICU very long. We can’t wait to see Audrey Bella as well. Please continue to pray for Gavin and his safe journey home. More updates to come.

Category : Blog & news

Thank you for all your thoughts and prayers. Gavin’s visit to the OR has been postponed till Friday. Please continue to think of him…he can hear all your prayers!! ;)

Category : news

Dear Friends and Family,

As some of you might know, Gavin, Jan and Bong are still in Maryland for the National Institute of Health (NIH) study.  The study was supposed to be thorough physical on Gavin.  Basically, they wanted to have a parameter to compare his health conditions now, and when he eventually undergoes gene therapy, hopefully next year. Totally expected, Gavin’s oxygen levels dropped severely and he caught a sinus infection, which caused a swelling of tissue around his airways.  Because he had difficulty breathing, a breathing tube had to be inserted through his throat in order to assist him to breathe.  Gavin has been heavily sedated and is in pediatric ICU where he has been closely monitored for the past few days.  On Sunday, doctors thought he would be able to have the tube removed.  Unfortunately, when they removed the tube, he started to frantically gasp for air and could not breathe; therefore the tube had to be reinserted.  Today, Gavin will be in the OR and doctors will determine if he is finally ok to breathe on his own.  If his muscles continue to tighten and he still has trouble breathing,  he might have to undergo an extensive and excruciating surgery called   Tracheostomy, where they will have to cut Gavin’s front neck and permanently insert a tube that will provide an airway to his lungs and remove any secretions from the lungs.  If he does undergo this surgery, it will be his 3 rd major one since his diagnosis.

Our poor boy is suffering and has been through so much already, but yet he continues to be brave and fight like a warrior.  My sister and Bong are very brave as well to undergo this, as I am sure this has been very heart-wrenching for them.  I cannot imagine how they must feel.  We must continue to be strong for them and especially for Gavin.   I cry as I write this email, and ask if you can take a few minutes out of your day and just say a prayer for Gavin as he enters the OR today.  He needs all the prayers and positive energy right now.  Bella misses her big brother very much and so do we.  I know that God will never give us crosses we cannot carry, so I continue to have hope for his safe recovery.

Please visit Gavin’s website at www.hopeforgavin.com and click on BLOG, for up-to-date information on Gavin’s condition.  Feel free to share this update with your friends or family- the more people praying for Gavin, the better.  God will eventually hear us.  Thank you again for keeping Gavin and our family in your thoughts.


Joyce Ibarra

Category : news

Gavin was sent to the OR this morning to be extubated (to remove the breathing tube) and he did well, but when he returned to the PICU, Gavin started to have the stridor breathing. He was breathing ok, but beginning to show signs of difficulty so the ENT and ICU doctors decided (for pre-cautionary measures) to re-intubate him again and wait until Tuesday to be re-examined by an ENT specialist surgeon. Gavin’s lungs are great and healthy and there are no inflammation around the tissue surrounding his airways so everything looks good; however, when doctors removed the tube and as Gavin was weaning off from his sedation meds, his muscles around the airway began to tighten causing dynamic upper airway obstruction. This is the mystery part because all of these are not symptoms of Tay-Sachs Disease.  Gavin is doing fine at the moment back at the PICU so we will know more once he is seen on Tuesday as to where we go from here. We miss Audrey Bella so much already, but she is with my parents and sister who all have been so supportive and helpful so she is in good hands. Audrey will be heading to Vegas to stay with my parents for a while until we return to San Diego.
Gavin desperately needs your prayers so please continue to do so. Thank you all for checking.
-Jan

Category : Blog & news

Gavin is now at Children’s Hospital in DC. He is in the PICU under critical care. He is heavily sedated to make sure that his breathing tube is still. The doctors have given him steroids to help decrease the swelling of tissue that is blocking his airway. Once the swelling has decreased, they will watch out for airway leakage which is a good sign. He is breathing on his own and with the ventilator just in case. So far he is doing well.

Category : Blog & news

Gavin had caught a sinus infection that was elevated on Tuesday, June 28, 2011 which eventually led to swelling of tissue by his airways thus causing him to have difficulty breathing. He was rushed to OR and ICU @ NIH and doctors placed a temporary breathing tube to help him. This was such a scary experience as this happened all so fast. We did not see this coming as Gavin was doing fine during the study until Wednesday. He is going to be transported to Children’s Hospital in Washington DC. This is very hard right now so we need everyone’s prayers.

Category : Blog & news

Although the free publication on Guam called “the High Life” has issued a “final issue” in June, Gavin’s story still made it in its pages to spread awareness of this rare disease. You could also view the entire magazine online : http://issuu.com/thehighroad/docs/highroad_june2011

Category : news

Gavin had a lot of visitors these past few days from friends, family, neighbors, and even from people we did not know, but heard about Gavin’s surgery. The positive energy and love in his recovery room were astonishing. Even the nurses were amazed at how many people came to see Gavin. We appreciate you all for taking the time out.

Category : news

The surgery went very well

Dr. Vasquez did a great job. Gavin is currently resting. He is often times uneasy which is our que to give him more pain meds. Right now, he is resting and doing fine.

Category : Blog & news

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Thanks for visiting our blog. Please check back often for updates about Gavin’s health and how we are coping with life with Tay Sachs.

Category : news