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Mothers that Wear Many Hats

I hope you all had a wonderful Mother’s Day, but Mother’s Day should be celebrated everyday! Truly, we as mothers of child(ren) with TSD wear lots of hats too and most of it came overnight: Wife -keeping the family together ; Doctor -making medical decisions for our child(ren); Nurse -giving our child(ren) meds, making him or her comfortable and administering all medical equipment; Lawyer -constantly advocating for our child’s best interest; Teacher - reading books, reciting ABC’s and singing songs to our child(ren) to make him or her smile; Researcher- staying up all night (at least in the beginning) researching online and through other specialists and resources about our child(ren)’s disease and unconventional ways to help him or her; Driver -driving our child to all doctor appointments, holistic appointments and therapy appointments and pretty much everywhere that will help keep him or her comfortable and relaxed; Author/Writer - writing and blogging about our child(ren) and our journey either through a book or online; Diaper changer -changing our child(ren)’s diapers and still smiling; Physical and Occupational therapists - practicing therapies that our PT and OT taught us so that we can do them at home; Psychologist/Marriage and Family Counselor -listening and giving others who are in our bubble or within our family- comfort and advice during stressful, emotional, and tragic times; Professional - we still have to work our own careers because those bills still keep coming; Fundraiser/Awareness Spreader -organizing fundraisers and events to help raise money for our child(ren)’s disease and to help spread awareness; Friend- being there for our girlfriends even if it is to listen to nonsense or petty stuff compared to what we are going through; Inspiration/Preacher and Child of God - inspiring others to live in the moment and to love their child(ren) unconditionally and reminding everyone to please pray and to continue to have faith regardless of the trials. The list can go on and on, but truly we are women made of steel, women who are forced to use strength because there is no other choice, and women who continue to spread hope and inspiration. The next time you are contemplating a day off, read this list and go for it, even for a short moment. Happy Mother’s Day!
-Jan Marquez (Gavin and Audrey’s Mom)

Category : Blog

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 turns “7″

It has indeed been a long time since I have updated Gavin’s blog. Roughly 2 months ago, we had a wonderful birthday celebration week for Gavin. The weekend prior to his birthday started off with a magical experience at Disneyland with the whole family including my parents, my sister and precious niece, “Mila” and my cousin Alexandra who recently moved to SD from Guam. Despite the typical chaos in Disneyland, Gavin and our family had a great time. On Gavin’s actual birthday on 11/13/12, we all headed to his classroom for a cupcake celebration filled with songs and good cheer. All of Gavin’s nurses along with his Godmother Len and family friend-”Auntie Michelle” with her daughter, Baby Ari also joined in on the fun. The principal was also kind enough to drop by. His teacher, Ms.  Meredith, who is a wonderful gifted singer, really made Gavin’s birthday special. Gavin’s birthday was truly a beautiful and memorable moment!

Category : Blog

Update and 2nd Hope for Gavin Golf Tournament

I know it has been such a long time since I have sent any updates via email as life has been so hectic for all of us now these days, but I just wanted to let you all know that Gavin continues to fight very strong. This summer has been wonderful compared to last summer when Gavin was in the PICU for 1 month @ Children’s Hospital in Washington D.C. and Maryland. Knock on wood, but Gavin has been doing amazing these past few months. He has not been on continuous oxygen since late spring and has been seeing the doctors less frequently. We continue to do more of a holistic approach with Gavin in addition to his conventional medications as he has been responding to them very well. Gavin continues to see his faith healer every week and is also doing acupuncture, chiropractic therapy, aromatherapy, and cranial sacral therapy in addition to his weekly routine of Physical and Occupational Therapy and Doctor visits- so yes, I am a very busy mom while still working part-time. This summer, we wanted to avoid taking Gavin on a trip via plane so we took Gavin and the family on a California road trip up the coast to Monterey, Carmel, Pebble Beach, San Luis Obispo and Santa Barbara; Gavin surely enjoyed every picturesque scenery. It was beautiful. Audrey too is doing great, yet can be dramatic at times, but nonetheless she is great with her brother. Anyhow, this September 15, 2012 at the beautiful Mt. Woodson Golf Club of Ramona, CA will be Gavin’s 2nd Golf Tournament fundraiser that is being put together by our friend, Scott Hemsley. 50% of the proceeds from the golf tournament will go directly to the Cure Tay Sachs Foundation that directly funds the TSD Gene Therapy clinical trial initiative. As you know, there is no cure yet to this cruel disease, but gene therapy offers a lot of hope. As we speak, several toxicity studies and testing are being done before the FDA can approve a 1st phase human clinical trial by the end of 2012 or early 2013. It has been known that 6 kids of Juvenile Tay Sachs Disease will be selected for the trial, but whom of the 6 kids and how those kids will be selected are unknown. From speaking to one of the clinical doctors involved in the gene therapy consortium, only kids who continue to thrive and are less progressed from the disease will have a higher chance in being selected. Sadly, in the last few months, Ferd and I have had many friends from the TSD community lost their child especially our good friends, Flory and Ed Roman of Connecticut who lost Bela in June @ age 6. We do indeed live in a bubble that no one can fathom, but we continue to embrace and be grateful to the many family and friends who have and continue to reach out and have been a part of our lives in so many ways. The other half of the proceeds will go directly to Gavin for all of his holistic therapies, future experimental medication and medical equipment that are not covered by our medical insurance. At the moment, we need lots of golfers and donation of prizes for a silent auction at the tournament. It would be so helpful if you can help us spread the word via email, social networking etc… about this golf tournament.  If you are interested, please contact Scott Hemsley at or I have attached the flyer that has all the information and if a letter is needed for any business or corporate  sponsor, please let me know, as I can send that as well. Please feel free to share this event especially to your golfing buddies. What is more important to us is the ability to spread awareness of this disease and to speed up the clinical trial for gene therapy that offers hope to cure this disease. Thank you so much for taking the time to read this and please do not feel obligated if it is not possible. When there is life, there is hope, and hope is what keeps us all alive!

Jan

Category : Blog

A Year Later after Summer Madness in D.C.; Gavin continues to fight strong!

It has been a year on June 29 since Gavin was in the PICU at Children’s Hospital in Washington D.C. last summer. It was such a crazy, scary, stressful and emotional roller coaster ride, but with God’s grace and all of you who have prayed for Gavin, he had managed to come home safely without the need for a tracheostomy or anything invasive. I know it has been a while since I have posted an update on Gavin, but today, he is doing fantastic! Though there are times when things are extremely rough with Gavin, and despite the cruelty of the disease he is battling, he continues to fight strong. Gavin has not been on continuous oxygen for almost 2 months now and is breathing on room air 90% of the time. Aside from his laundry list of medications that he is taking daily, he continues to see his faith healer every week and is also getting physical and occupational therapy, chiropractic and acupuncture treatment every 2 weeks. Gavin also enjoys aromatherapy everyday while he is on the vest getting all that gunk out of his system. Gavin is also getting so much heavier weighing a whopping 60lb. Everyday we always continue to pray for continued strength. On a good note, there are also wonderful things coming ahead. In 2 weeks, we will be taking Gavin on his first family Cali coastal road trip; we will venture out to Santa Barbara, San Luis Obispo, Paso Robles, Carmel, and Monterey to name a few. The annual Tay Sachs Disease Family Medical Conference by NTSAD will also be held in San Diego for the very first time in 2013. The research for Gene Therapy is making lots and lots of good progress and clinical trials are expected to take place in the Fall of 2012 where there is a possibility of 6 Juvenile Tay Sachs kids that will be selected for the first clinical trials. How and who they will select remains to be a mystery and we can only hope and continue to pray that Gavin will be one of those 6 kids. For now, we are going to enjoy every moment of Gavin and our family and leave everything up to God. Please continue to pray for our son who continues to fight everyday!!! Indeed there is hope!!!

Category : Blog

Highlights from the TSGT Progress Update – February 2012

The Tay Sachs Gene Therapy Consortium continues to make many hopeful
and successful progress, but “TIME” is of essence for our kids. Here
are highlights of the progress update as of February 2012. The full
report is available through www.tsgtconsortium.com/reports or
, but to spare you with medical jargon, here are the
highlights. Please continue to pray for Gavin and that clinical trials
will start as planned in the year 2012.

Tay Sachs Gene Therapy Consortium Update:

Treated GM2 cats lived an average of 16.7 months, or 3.7 times longer
than untreated GM2 cats, which die at about 4.5 months of age.
Remarkably, two AAV-treated GM2 cats are still alive at 24 and 20.7
months of age, an outcome that surpasses our initial expectations.

In year 1 of the research project, two Tay-Sachs sheep were treated
with gene therapy, and they lived almost twice as long as untreated
sheep. Now, in Year 2 of the project, 10 Tay-Sachs sheep were treated
with gene therapy and 2 remain as untreated controls to see if year 1
results can be reproduced.

A new good manufacturing practice (GMP) facility has been identified
to make vectors at a lower cost than originally estimated. We
initiated a 4-month pilot program to validate the new facility’s
ability to produce AAV vectors.

We have received approvals for upcoming safety studies in monkeys and
the animals are scheduled to arrive within the week.

Natural history study: Recently we collected retrospective data on 10
juvenile patients to understand disease progression that led to the
development of a new clinical severity scoring systems for these
patients. Based on these studies we initiated a prospective study with
6 infantile and 5 juvenile patients.

A February meeting of physicians, regulatory consultants, and
scientists was held in Boston to discuss the design of the first human
clinical trial of AAV gene therapy for Tay-Sachs disease.

Numerous regulatory steps must be met before the clinical trial can
begin, such as filing an investigational new drug (IND) application
with the FDA and receiving approval from the institutional review
board (IRB) at the Massachusetts General Hospital where we are
planning to conduct the clinical trial.

The next step for our program is to conduct a pre-IND meeting with the
FDA scheduled for the beginning of March 2012. According to FDA
guidelines, the chief goal of the first clinical trial for any disease
is to demonstrate safety of the potential therapy, though efficacy may
also be evaluated for rare diseases.

Category : Blog

New Update on Gavin!-The Middle of Winter with Spring Around the Corner

It’s been a couple of months since I have last posted an update on Gavin’s blog- my apologies for not staying on top of it as I should be; something always seems to come up, and I’m thinking to myself, I should be on top of it as I managed to update Gavin’s blog almost everyday when he was in the PICU in Washington DC over the summer, but nonetheless, my to-do list keeps on growing and never seems to stop. So here I am, writing a recent update on Gavin with winter almost more than half way over. The holidays were filled with great family, friends, and of course lots of delicious and oh-so dangerous carb-loaded food; but luckily Ferd and I kept with our training for our first half marathon which really helped get us through the winter and helped us build strength as Gavin is getting so much heavier weighing 53 lbs at current. The tough part is always lifting him in and out of the car, in the shower, and pretty much anywhere where he needs to be transferred; Ferd and I do almost all of the lifting of Gavin for our nurses so that they don’t get burnt out. On January 22nd, Ferd and I completed our first half marathon in Carlsbad, CA. I was able to finish 13.1 miles of non-stop running at 2 hours and 36 minutes-not bad for first timers right? I really was dying at mile 11, but I kept thinking about how Gavin is always fighting every day to breath and that truly was my motivation to head to the finish line. Though 2012 remains to be a hopeful year, Gavin had it very rough on New Years day. The morning of January 1st, Gavin was on antibiotics as he had a mild case of Pneumonia.

That same day, Gavin was introduced to an oxygen concentrator machine at home and has been on continuous oxygen since as his sleep study indicated that there was a desaturation in his oxygen levels while asleep. Back in October, Gavin also experienced major tongue-biting episodes that were so uncontrollable and undeniably painful. We’ve tried almost every remedy including increasing his seizure medication to using a mouth guard (even if it was not recommended by our doctor), but still nothing really helped. His poor little tongue was so badly blistered and chipped, but has slowly recovered. Since Gavin has been on oxygen, the tongue-biting has not been occurring as frequent thank God! Gavin for the most part continues to stay strong and occasionally surprises us on some days not needing oxygen at all. His little sister, Audrey Bella, is so sensitive to her brother’s needs that she has become such a great help from wiping Gavin’s mouth to pouring Gavin’s breathing medications into the nebulizer. Through it all, we try to live a “normal” life with Gavin as much as we can taking him to the beaches, parks, restaurants, birthday parties, and even on road trips to Vegas to visit grandma and grandpa. I am not going to lie, it is really tough traveling especially lugging all of Gavin’s medical equipment, but we have managed to adapt. On a side note, Dr. Tifft, who is head of the natural history studies at the NIH for Tay-Sachs Disease in Maryland whom we met over the summer, came to see Gavin 3 weeks ago in San Diego while in town for a medical conference. She briefly updated me on the progress of gene therapy and from the sounds of it, she is very optimistic of a possible clinical trial being initiated in late fall to early winter of 2012.

Still, nothing is definitive and we can only pray that the possibility of gene therapy will come much sooner. I will be posting a recent detailed update on gene therapy from the Tay-Sachs Gene Therapy Consortium on my next post. In the recent months, I have been so emotional and saddened as 3 of our dear friends from the TSD community have lost their beautiful angels from the disease. It is so excruciatingly unbearable, but this is the reality that TSD families face. I can only trust God and leave Gavin’s fate in God’s hands. I know that Gavin will continue to fight hard in honor of his friends who have earned their angel wings despite the fact that the battle is getting tougher. He is very strong and continues to be a brave warrior. Please continue to lift us up in thoughts and prayers. Thank you very much for reading this very lengthy update. If you are in the San Diego area, do not hesitate to give us a call. Thank you again!

Category : Blog

Finally, an update!

Gavin turned 6 years old 2 days ago on Nov. 13, 2011 and it was a great day for him when a few close family and friends showed up at the house to help celebrate. It has been such a long journey since our last ordeal in Washington D.C. over the summer of 2011. I apologize for not posting frequent updates on Gavin’s blog as it indeed has been hectic trying to get back into the swing of things. To think, Gavin survived such a long stay in the PICU at Children’s National Medical Center in DC and the fact that he was close to needing a tracheostomy-wow, time and time again, our son has proved to be such a fighter and such a brave warrior. Gavin started 1st grade in August of this year @ Willow Grove Elementary and has a new nurse at school- Ms. Carol, who is fantastic. Gavin also has 2 new permanent nurses at home, Maria and Judith, who both work different 8 hour shifts to help Gavin, and they too have been so amazing! Truly, we have been so blessed with wonderful family, friends, and strangers that have come to our lives and have helped lift us up in so many ways. Gavin is doing well overall and has avoided frequent trips to the ER. He continues to be on bi-pap every night when he sleeps; this allows him to have more energy the following day. Gavin also continues to see his faith healer- “Auntie Apo,” every week and she has been such a blessing for him. We still cannot thank the Sheppard family of Canada enough, who donated the respiratory vest of their late son, Noah, to Gavin. Gavin uses his vest every morning and night and until recently, he has been using it on a massage table while he is on his tummy to incorporate postural drainage; the massage table allows gravity to effectively get all the gunk out that is being stimulated by the vest. His Godmother, Len, gave him the massage table and this has been so helpful for him. Lisa, mother of Nathan and Dillon, gave me the wonderful idea of doing the vest while Gavin is on his tummy- thank you Lisa! Like most kids with TSD, Gavin has good days and bad days, but for the most part, he continues to fight very hard. The ultimate goal is for Gavin to thrive so that he may have a chance for Gene Therapy, in which optimistically, phase I clinical trials will begin sometime in 2012! Please continue to pray for Gavin- HOPE is definitely around the corner. Praise God for choosing us to take care of Gavin. We continue to pray to God for continued strength in this trial and journey. Thank you so much for checking in. James 1:12

Category : Blog

The Hope for a Cure is Getting Closer

On Sept, 18, 2011, The National Tay-Sachs & Allied Diseases Organization will launch the first annual “Day of Hope” campaign. How Does the Day of Hope Benefit Research?

As you’ve heard, research is moving quickly toward clinical trials for Tay-Sachs and Sandhoff diseases. Over $900,000 has been pledged, but we still need to raise over $350,000 in the next few months to be able start the trials by the end of 2012. Let’s band together on September 18th and see what we can do collectively!

There is also research focused on Canavan disease gene therapy, stem cells, and anti-inflammatory therapies for Tay-Sachs and related diseases that is funded by the NTSAD Research Initiative.

In order to keep research on track, the Day of Hope is dedicated to specifically funding research. Visit for more
information.

Category : Blog

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’s God sisters visiting and sending their love last night..

Category : Blog

Gavin was transferred from the PICU to the pulmonary unit on Sunday afternoon where nurses are specifically trained for respiratory issues. It was very nice to see a lot of our close friends and family come by and visit Gavin especially now that he is in a more “less stricter” unit in the hospital compared to the PICU.  His stats look great and his blood gas results also came out very good. Gavin was supposed to be discharged yesterday, but the pulmonary doctor wanted to make sure his BiPap device was all in place and works successfully before releasing Gavin. He is really tolerating the BiPap device and he will only be using it at night which will surely help him get a good night’s sleep. We will repeat the sleep study next month to see if anything changes or if he needs to discontinue the BiPap. Gavin should be discharged later this afternoon and soon he will be finally home- yeah!!! Thank you again for checking in and for all your continued thoughts and prayers. More updates to come.

Category : Blog

Gavin is still in the PICU. Children’s Hospital in SD is indeed different from the one in DC; I feel that they are more stricter here especially with visitation, but nonetheless, the medical staff is great. Gavin was extubated yesterday night in the OR and everything went well. Shortly after extubation, the ENT doctor also scoped Gavin to look at his upper airway which he said looks great with no inflammation, but a few secretions. He is no longer on any sedation meds via IV, but continues to get methadone and Ativan via gtube to help with withdrawals. His heart rate and O2 stats are also very good considering that he is completely breathing on his own now. Gavin still needs to see the pulmonologist at Children’s to fully determine if he needs the BiPaP device before he is discharged. We are hoping to take him home by Monday. Audrey Bella finally came back home with my parents from Las Vegas this morning and it was sooooooo nice to see our girl again- we missed her soooo much and she was so excited to see us again. Boy is she really talkative and inquisitive-we really missed her so much. We feel bad because we also left her with my parents in the summer of 2009 for 2 months when we took Gavin to the Philippines and Guam on a miracle mission trip 3 months after we found out about his diagnosis, but Audrey was only 7 months old then and even today, it didn’t seem like she was mad at us for leaving :p  Ferd and I just can’t wait to go back to our regular routine and also for the 4 of us to be cuddling at home listening to Audrey sing and dance, holding Gavin in our arms with suction machine on stand-by, and watching movies as a family- a typical weekend for us (which may seem boring for some) but it sure is one of our favorite and priceless moments. Thank you for checking in. More updates to come.

Category : Blog

The flight via medical jet was an experience, but nonetheless the medical transport team did a fantastic job in ensuring our safe return home. It was nice to finally feel the cool breeze with temp. at 68 degrees. I know DC is really feeling the heat and major sweat as the forecast was going to be 103 degrees this whole weekend. Gavin is now at the PICU at Rady Children’s Hospital in San Diego and is still intubated. His o2 stats and heart rate look great and extubation may start later this afternoon. If he is able to recover very quickly from sedation, we may take him home by Monday at the very latest. Thank you very much for checking up on Gavin. More updates to come.

Category : Blog

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

Gavin Boarding on our way back to San Diego

Category : Blog & news

Gavin just got re-intubated a few minutes ago and all went well. He is heavily sedated and his stats look great.  We are just waiting for the medical transport team from San Diego to arrive any moment in our PICU room and off we go in our medical jet to SD arriving at Rady’s Children’s Hospital later this afternoon. As of now, I am 99% certain that I will join Gavin in the flight, but in case the pilot has a bad day or feels that it is best for me to fly separately, I have a back up flight later this afternoon (just in case). It’s 101 degrees right now with 100% relative humidity here in DC and it’s going to be even hotter this weekend- perfect timing to come home to SD with mid 70 degree weather. Thank you all for continuing to follow our journey with Gavin. The journey will never stop as we keep on going and I’m glad you are all with us on this journey. Thank you for always praying for Gavin. More updates to come as we arrive back in SD.

Category : Blog

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

Wow, we’ve been here for almost a month and while our trip did not turn out as planned, all we could do is pray and hope for the best and make “lemonades out of lemons.” While Gavin remains in the PICU, Ferd and I take our occasional break from the hospital with friends or exploring the city of DC and parts of Maryland and Virginia which are all close by (a highly different and unique geography than what we are use to in California, but nonetheless beautiful). Eating out everyday, walking about in the city and taking the Metro and DC cabs can be quite an adventure and can add up. Anyhow, the sleep study went fine, but because Gavin was not completely asleep, the reading was not entirely accurate, but accurate enough to determine that Gavin would benefit from a BiPAP device as the readings show signs of obstructive sleep apnea.  So moving forward, we had a meeting this afternoon with the ICU team to discuss next steps for medical transport which they feel will take place sometime this week. They feel that Gavin continues to do well and is able to bounce back quickly after an oxygen disaturation, but told us their next recommendation- Ferd and I’s jaws dropped. The ICU doctors feel that for pre-cautionary measures and for the safety of Gavin, it would be best for Gavin to be re-intubated (not that he needs to at present, but as an “in case” he may have an obstructive upper airway during the flight). Ferd and I were so torn because Gavin is finally back to his normal baseline; it would also mean Gavin would need to be sedated again. It was indeed a stressful moment. After making several phone calls for different opinions, doing a little research, and listening to our gut instinct, we spoke to the ICU attending physician and told him that we are leaning more towards Gavin flying without being intubated. I feel that our son is really stronger than he appears to be and we would feel comfortable with Gavin flying with a medical transport team consisting of an ICU doctor, transport nurse and respiratory technician along with oxygen and a BiPAP device if needed. It’s understandable that everyone wants to prepare for a worst case scenario for Gavin and no one wants to be liable in case anything bad were to happen, but we know our son and instinctively know he will make this flight without the need for re-intubation. We are going to have another big meeting on Tuesday afternoon with the ICU medical team, Pulmonary and the SD medical team via phone conference to finalize Gavin’s medical transport plans. I know some will frown upon our decision (and they all know it is a very very tough decision) but we are going to be firm with our decision (unless some drastic change were to occur) because after all, we want to do everything possible for Gavin to thrive through less invasive measures. Despite it all, making medical decisions for your child is never easy for a parent. We ask all of you to please continue to pray for Gavin and that his journey home be safe and sound without any need for intubation. The journey never gets easy, but God never leaves us through the journey. Hang in there my son, we should be home very soon.

Category : Blog

Looks like we are still going to be here for another week. Gavin has been doing great as he is breathing on his own with no oxygen assistance, although he had several episodes of apnea. Despite the apnea, he is able to bounce back quickly to great o2 stats. We still have not gotten back the results from his EEG. On Thursday, we spoke to the pulmonologist of Children’s and the next option that was given to us to ensure Gavin would be safely transported would be to do a sleep study to measure his apnea episodes while he is asleep. The results would also determine if Gavin would need to be admitted to the PICU @ San Diego Children’s Hospital or SD Kaiser Medical Center that has no PICU upon arrival to San Diego. The sleep study will not happen until Saturday, which is later this evening and will take place for 8 to 10 hours.  The results will not be ready until next Wednesday or Thursday, so yes we will be here for at least another week. The sleep study will also determine if Gavin will need a BiPAP mask, which is a method/ device for distributing positive pressure in the airways to help a person breathe more easily (only as needed) It is nothing invasive really.  Ferd may possibly leave earlier to get back to work and luckily since I am on an educator’s schedule (summer vacation), I can stay with my angel as long as needed. Thank you very much again for checking up and for always praying for Gavin. More updates to come.

Category : Blog