As Q's COTA account gets closed out, so will his page on their website. Therefore, this blog will serve as a follow-on for those who would like to stay in touch with us. The love and support we have gotten from all of you is deserving of not only our eternal appreciation, but also 'membership' into Team Q, which will forever be representative of the connection between our family and friends (both old & new) created through the valiant fight of our beautiful boy named "Q"
Sincerely, Sarah & Koji (4-ever Q's Mom & Dad)
First Entry: Catching up with Q (from birth to transplant)
6/11/2006: Q is born at 5:49pm at Sharp Mary Birch Hospital in San Diego, CA and is immediately admitted to the NICU at Rady Children’s Hospital because of a distended stomach due to suspected intestinal blockage.
6/12/2006: Surgery #1 to remove intestinal blockage (made accessible by the removal of his appendix)
6/21/2006: Surgery #2 to determine amount of functioning ganglion nerve cells in Q’s digestive tract (only ends up having 23 cm of functioning small intestine, so will be treated as Short Bowel Syndrome patient due to ultra-long segment Hirschsprung’s Disease). Illeostomy and G-tube are inserted.
7/9/2006: Q moves from the NICU to the Medical Surgical Unit
7/19/2006: Surgery #3 to insert a central Broviac line for IV feeds of TPN (which will provide over 80% of his needed nutrition). Mic-Key G-tube button also inserted for feeds of breastmilk (and later formula) directly to his stomach. 
7/27/2006: Q is finally discharged from the hospital for the first time after his birth! (total of 47 in-patient days)
9/14/2006: Surgery #4 as an out-patient to correct the prolapsing of his stoma via a ‘button-fixation’ procedure
9/18/2006: Q admitted to the hospital for central line and urinary tract infections
9/26/2006: Discharged after 9 in-patient days
10/4/2006: Admitted for resurfacing of infections
10/10/2006: Discharged after 7 in-patient days
11/6/2006: Admitted for fever indicating possible infection
11/9/2006: Discharged after 4 in-patient days (no line infection found)
11/24/2006: VCUG performed that showed signs of urinary reflux. Admitted for fever indicating possible infection 
11/29/2006: Surgery #5 to correct urinary reflux
12/5/2006: Discharged after 12 in-patient days
12/19/2006: Admitted for high white blood count and low electrolytes & potassium
12/23/2006: Discharged after 5 in-patient days (no line infection found)…Just in time to celebrate his first Christmas at home!
12/28/2006: Admitted for high white blood count and low electrolytes & potassium (so had to celebrate News Years in the hospital with Mommy)
Total of 91 in-patient days in 2006 since his birth on 6/11/2006
1/3/2007: Discharged after 7 in-patient days (no line infection found) GI doctor suggests getting Q on the national organ transplant waiting list due to the increasing criticality of his bilirubin numbers (indicating progressive liver failure, which is an expected side effect of prolonged dependency on TPN)
1/5/2007: Q and Daddy fly to Jackson Memorial Hospital at the University of Miami so that Q can be evaluated by Dr. Tomoaki Kato and his transplant team and hopefully be placed on the national organ transplant waiting list
1/10/2007: Decision had been made that Q will stay in Miami and await listing then transplantation, so Daddy flies back to San Diego to arrange leave time and Mommy flies to Miami to be with Q
1/12/2007: Discharged after 8 in-patient days and moves into the Ronald McDonald House
1/15/2007: Admitted for central line infection
1/18/2007: Discharged after 4 in-patient days
1/22/2007: Q is listed on the national organ transplant waiting list
1/23/2007: Admitted for a blood transfusion (which he’s been requiring every 2-4 weeks since birt
h)
1/24/2007: Discharged after 2 in-patient days
1/25/2007: Daddy flies back to Miami to stay with Q
1/26/2007: Mommy flies back to California
2/6/2007: Admitted for fever and possible line infection
2/7/2007: Mommy visits Miami after a business trip to New Orleans
2/9/2007: Discharged after 4 in-patient days (no infection found)
2/11/2007: Mommy flies back to California
2/12/2007: At 5:43am PT / 8:43am ET, transplant desk calls to say a possible donor has been found, after confirmation Q is admitted to hospital and prepped for 
surgery
2/13/2007: Around 12:00am ET, Surgery #6 begins and lasts for approximately 7 hours 45 minutes Q is moved to the ICU for recovery
2/16/2007: Q is well enough to be moved out of the ICU to the Transplant Floor
2/17/2007: Q starts having respiratory distress and has to go back to the ICU
2/21/2007: Q is well enough again to be moved out of the ICU to the Transplant Floor
10 Mar: Mommy Visits Q (& Daddy) in Miami! 
From 2-5 March, Sarah was able to travel from San Diego to Miami and visit Q for the first time since his transplant. She reported that he appeared in very good spirits and seemed like a happier version of his old self! She spent the weekend getting him restarted on his oral feeds (for which he is exceeding expectations) and giving him frequent hair washing (as seen here). We think that one of the eleven post-operative medications he is now on, is causing Q to produce more sweat. Other than that, he is doing well and is now recovering from a more permanent central line placement, for which he underwent surgery last night (9 March).
24 Mar: Q Faces New Challenges
This past week, Koji and Sarah switched places so that Sarah will now remain in Miami with Q until he can come home to San Diego (which might not be for 3 or even 6 more months). As seen from these pictures (one on Mar 3rd & one on Mar 23rd), Q is not doing as well as he was during Sarah's last visit just a couple of weeks ago. Q's little body is having to make a lot of 
adjustments -- both to its new organs and to the myriad of medications to continuously fight the threats of rejection and infection.
Q is now struggling with an unexplained rash and labored respiration, which the doctors fear might be indications of Graft Versus Host Disease (GVHD) in which the cells of the donor's organs are attacking Q's body. Based on their experience with other patients, they feel it would be best to let Q's body's natural defenses fight the fight for now, since intervening with strong drugs immediately could cause the condition to come back much stronger later on. As awful as the rash looks, it is really his respiration that the doctors are concerned about, so Q is currently in the hospital (where he is also being treated for a central line infection).
To add to all of these challenges, Q now has a feeding tube through his nose. While the tube does help ensure consistent and constant nutrition and helps with the administration of his medications, it has greatly diminished his oral intake. Also, it is a 24-hour struggle to make sure that he doesn't pull the tube out, so his hands are usually covered (with fun animal slippers so that he thinks he has toys on his hands!). Hopefully, there will be better news to report soon, but for now this is a tough patch in what will be a long and unpredictable rollercoaster ride to recovery.
27 Mar: Q Gets Chest Tube 
This morning Q got a tube inserted into his chest to continuously suction fluid from the tissue surrounding his right lung. As seen here, he is now recovering in the ICU and breathing much more easily. Unfortunately, he is still not out of the woods, since the main concern remains overcoming the central line infection he has, for which he is currently receiving three different antibiotics. Either today or tomorrow, the doctors will decide whether the line will need to be replaced all together, thus requiring another surgery. On a positive note, it seems like Q's rash is running its course and now at least his face is looking a little clearer.
28 Mar: One BUSY Day for Q!
Sometime between 2am and 5am, Q managed to pull out his new chest tube. He then had to be put on a ventilator, but not as a result of not having the chest tube but instead because his blood gas levels were not good. During morning rounds, he was evaluated by the Transplant and ICU teams (around 15 doctors in all gathered around his bed). Sarah mentioned that one of the nurses had noticed a lump on Q's chest near his armpit when they were bathing him the day before. Upon examination, this caused his primary transplant doctor (Dr. Kato) to suspect Post Transplantion Lymphoproliferation Disorder (PTLD), which stems from the Epstein Barr Virus and is common for transplant recipients. A CT scan was then scheduled, and it was also decided that Q would have to have a urinary catheter inserted as well as peripheral and arterial lines to better facilitate the administration of his medications and the checking of his vitals. In addition, the chest tube had to be reinserted, since more fluid had accumulated throughout the day. All of these procedures were completed just before midnight, and Q remained sedated the whole day.
30 Mar: Still No Answers
Unfortunately, there is not much new to report on Q's condition. As you can see from the picture below, he is hooked up to A LOT of machines -- the ventilator, chest pump, monitors, and over 10 pumps for medications! Although the CT scan Q had showed enlarged lymph nodes typical of Post Transplantation Lymphoprolifera
tion Disorder (PTLD), his lab work was negative for the Epstein Barr Virus, so the doctors now do not think that is what he has. Therefore, they are still not sure what is causing Q to have such a bad rash, enlarged lymph nodes, and respiratory problems. Also, in the middle of the night he had to have a blood transfusion and for the first time he had a reaction and started to turn red. The doctors are now revisiting their initial theories of allergies and viruses, so they are limiting his exposure to such things as latex and performed another biopsy of his skin. Today Q also had an echocardiogram (which showed his heart is healthy), a procedure to push one of the tubes in his chest in farther, and his regular colonoscopy to check for signs of rejection (for which there were none). Q remains sedated and was given a paralysis drug, so that he will stop trying to 'out-breathe' the ventilator...No matter how bad he feels, Q just never stops fighting!
2 Apr: Q Seems to Be Doing a Little Better
To quote Q's doctor, "Q seems to be doing a little better, which is a lot better than doing a little worse." They still have not conclusively decided what caused all of Q's problems, and it might not be just one thing anyway. Their treatment of all of his symptoms as they have arisen, however, seems to be helping. His lungs are doing better, so he might soon be moved off the oscillator back to the ventilator and then off of that. His urine output has improved, so his kidneys are not as much of an immediate concern and he is much less puffy. He is no longer growing anything infectious in his central line blood cultures, and his rash seems to be subsiding. They also started him back up on a very small amount of feeds directly into his small intestine via an ND-tube in through his other nostril (the other has an NG sunction tube into his stomach), so at least his nose is being stretched evenly now! Q still remains under sedation and paralysis medication, so he is resting peacefully and will hopefully just be all better when they finally wake him up.
5 Apr: Q Appears to be Doing Much Better
The doctors are very happy with Q's progress on all fronts -- his lung & kidney functions have improved and his rash & central line infection have cleared up. Sarah is still a little reluctant to get too excited yet, as Q remains sedated and on the ventilator. Today he did begin to open his eyes a little and move around; in fact a couple of times during the day, he got a little too agitated and had to be given extra sedation. Hopefully he will be taken off the ventilator in the next day or so. Even though the doctors still do not know for sure what caused all of Q's problems, they continue to consider possibilities (including the most recent, per the immunologist today, a Type 3 Immunocomplex disorder). Sarah's theory is that Q has discovered something totally new that from here on out will be known as "Q Syndrome".
8 Apr: Q's Off Ventilator and Recovering Well
Two nights ago, Q was taken off of the ventilator and has been monitored closely to make sure he can sustain his own respiration, which he is doing very well now. At first he had to be assisted with an oxygen mask, but as of last night, he no longer requires it. As of yesterday, he is fully awake (in fact, despite the me
thadone he is receiving to ward off any withdrawal symptoms from his prolonged sedation, he has been quite agitated and stayed up most of the night). Yesterday he was groggy and had trouble focusing his eyes, but today he is much more alert and is returning to his usual 'Mr. Grabby Hands' ways! Luckily, his extra lines are now being removed one by one. His chest tube and urinary catheter were removed yesterday and today his arterial line will be taken out. They also just restarted his feeds. Another terrific milestone yesterday was that his Mommy and Grammy (Tamako, Sarah's mom from Virginia) were able to hold him for the first time again!
11 Apr: Q Finally Out of ICU
Yesterday Q was finally transferred out of the ICU and back into his own room in the Pediatric Transplant Surgical Unit (PTSU), where Sarah is able to stay in the room with him. She had promised him that they would be in their new room in time to watch Curious George on PBS Kids (their favorite show) and they were; however, 
soon after their arrival, Q started to have a fever. It carried over throughout the day and night, making a sleepless night for both of them (at some points Q's heart rate got as high as 214). Luckily, Q has been able to remain in the PTSU (vice being sent back to the ICU), and the doctors are now trying to find the cause of his frequent fevers. They are performing blood and urine cultures, and have taken a chest x-ray and a sample of his nasal secretions. Another new theory that the doctors are checking is whether Q might be having an allergic reaction to the formula he has been on, so they have switched him to something else that he appears to be tolerating well. This is a picture of Q in his new room surrounded by toys (instead of machines)...just in time to celebrate his 10-month birthday!
18 Apr: Things are Looking Up for Q
Things appear to be finally looking up for little Q. Despite the fact that the liver biopsy he had on Saturday showed some signs of rejection, the doctors are hopeful that he is responding well to the treatment they started. They are trying to take a minimal approach at first to see how well Q's body adjusts naturally. His respiration continues to improve as more measures are taken to balance his fluid input and output. His frequent fevers have su
bsided, and any low-grade ones he is still getting (mainly due to teething now) are being combatted by a cool, damp (and stylish!) cloth tied to his head (as seen here). This is being done since Tylenol has to be broken down in the liver, which is of course where Q is encountering his most recent complications. Q (and Sarah) will remain in the hospital until at least next week, but the good news is that the doctors are using this opportunity to aggressively reduce Q's reliance on TPN feeds. Once this is fully accomplished then Q's liver will be less susceptible to damage and his central line can be removed (thus greatly reducing his chances for a life-threatening central line infection).
19 Apr: No More TPN for Q! 
As of 1:45pm ET today, Q's nurse Jasmine unhooked him from his TPN hopefully for the last time! This marks a huge milestone for Q, since it's this life-saving TPN that has both provided over 80% of his nutrition since his birth and at the same time damaged his liver to the point of needing a transplant. Q was able to come off of the TPN earlier than expected since he appears to be tolerating his N-G tube feeds (of Peptamen Junior) as well as oral feeds of rice cereal and pedialyte. Q will more than likely remain in the hospital until next week (making it his 5th week this in-patient stay), but he seems to be returning to his old self and is all smiles again!
2 May: Q Waiting to be Discharged 
Since the last update on 19 April, Q has remained in the hospital (with the exception of being discharged for one night just to be readmitted the next day for a blood transfusion). It is actually Q's blood now that is causing concern for the doctors, since they cannot seem to find a reason for his continuous need for blood transfusions, which are becoming increasingly difficult since the antibodies in Q's blood are making it hard to find matches for him. It was decided today that Q would be discharged this afternoon and would follow-up with Hematology as an out-patient. Q (and Mommy especially) are anxiously awaiting this long overdue discharge from the hospital!
5 May: Q Tests Positive for Cold Agglutinin Hemolysis
Just before being discharged on 2 May, Hematology ran some tests on Q's blood, one of which came back positive for Cold Agglutinin Hemolysis, where red blood cells are destroyed when the body/blood becomes cold. As a result, special measures will now have to be taken when testing Q's blood to help ensure that the blood samples remain warm enough. This also means that Q (along with his blood) will need to avoid the cold, so it is a good thing he is in Miami for treatment and lives in San Diego! Following Q's outpatient lab work yesterday morning, he was called back into the hospital so that the Pathologist could redraw Q's blood and run new tests using a special centrifuge machine. Q's hematocrit (level of red blood cells) was still low, so it was initially decided that he would stay in the hospital for another blood transfusion. As Mommy and Q were settling in for another hospital stay, Q's doctor decided to forego another blood transfusion for now and instead have Q come back in for blood work on Monday, and hopefully then there will be more information and a new plan of action for treatment going forward.
7 May: Q Fights His Final Fight
First, to those of you who are learning about Q's passing by reading this message, I apologize for you learning about it this way and I am sure it comes to you as just as much of a shock as it did to me when it happened yesterday afternoon. Although the exact cause of his sudden death has not yet been determined, we assume it is related to his recent struggle with severe anemia. After being released from the hospital Friday evening, he seemed to be doing fine but then slept most of the day Saturday (the doctors had warned he might be fatigued). He did wake up in the late evening and ate some rice cereal and then was given a bath. He slept soundly through the night, but then yesterday morning he awoke in great pain and discomfort. The doctors had also warned this might happen as a result of the Procrit injections he had started getting a week prior to expand his bone marrow so he could create his own red blood cells vice getting constant transfusions.
I tried my best to comfort him (with Tylenol, massaging & holding him) and he finally settled down, but his breathing was very rapid and strong (like a smokestack on steam engine). I then called the Transplant Coordinator who asked that I bring Q to the hospital to be checked out and possibly admitted. While I was gathering our things to go, I noticed I no longer heard his breathing, so I went into the bedroom and realized he was not breathing. I then called 911, and per their direction I tried to breathe air into his nose and mouth. The paramedics arrived within minutes and tried to revive him to no avail. He was then taken to the closest hospital where the ER staff worked on him more but again to no avail.
From his very first breath, Q fought a good fight and we think he just got too tired of fighting. In the end, he finally looked like he was at peace -- no more pain, no more struggles, no more surgeries, no more strong medications, no more invasive procedures.
We are going to forge ahead with the events we have planned, so that we can come together and celebrate Q's life. To all of you who have supported us throughout this journey, we thank you and we hope you will always remember our beautiful boy named "Q". Sincerely, Sarah (Q's mom)
19 Jun: Remembering Q & Celebrating His Life 
The Q-Ball, which was held at the San Diego Yacht Club on June 10th (the day before Q's 1st birthday) was a HUGE success and raised more than $22,000!!! The turnout and the outpouring of generosity were incredible, as was the entire event itself! A special thanks goes to the Q-Ball event coordinators -- Barbi Wood of 'Considerate Done' and Helen Lipka -- who helped ensure that the event was a first-class affair! Here they are helping to prepare for the event and modeling two of the gorgeous hats that were donated for the silent auction.
True to the Q-Ball logo, guests were greeted with a champagne welcome and of course Q’s smiling face!
The ArchTones (San Diego’s very own and well-renowned jazz trio) volunteered their musical talents to help put everyone in a celebratory mood upon their arrival.
Along with celebrating Q’s life, Q-Ball-ers were given the opportunity to remember his valiant fight through a special memorial table that included a family photo album and was decorated with lovely Hawaiian leis made by Merle Thrasher and Laurine Ota. Koji’s lei also made it easier to spot him as he mingled through the crowd!
And there certainly was a crowd both inside at the silent auction and outside on the dance floor with the live band keeping everyone’s spirits up well into the night!
The silent auction (along with special live auction and raffle items) were generously donated by both individuals and businesses throughout the San Diego area and beyond. Not only did the nearly 50 items bring in equally generous donations from bidders, but they also contributed to the excitement that a little friendly bidding competition was sure to bring! There was no question that the Q-Ball put the ‘fun’ in fundraising!
Again, a very special thank you goes to ‘Team Q’ (Mike Chi, Natalie Dailey, Doris Eiswald, Lynne Lasswell, Helen Lipka, and Tricia Ward – all pictured here at their Q-Ball closeout meeting) for their hard work from start to finish and for making the Q-Ball a reality! 
The following day, Koji and I continued the celebration of Q’s 1st birthday at Café Japengo where Koji is a sushi chef. He made me a special dinner and then the pastry chef followed it up with what else but a little birthday cake, so that we could make a special wish for Q…who we know is always with us…
17 Aug: Next Steps (Final Message from Q's Mom on COTAforQ.com)
First, I want to thank everyone again for all of your love and support throughout the journey we made with Q, and I want to share with you some of our next steps. Since Q was laid to rest in Japan and we do not have 
a memorial site for him here in the US, we are having a stone plaque placed in his memory at the Japanese Friendship Garden here in San Diego. This way his memory will always be surrounded by beauty and his unique name will be proudly displayed for generations to come. We are hoping that it will be ready and in place within the next couple of months, so if any of you ever find yourselves in San Diego, please stop by there and pay tribute to Q and always remember his valiant fight.
Lastly, Koji and I are taking steps to hopefully continue our family plans and are in consultation with genetic counselors so that we can move forward as smartly as possible. We would like to keep those of you who are interested posted so we will be maintaining a follow-on blog at http://teamq.blogspot.com/ that will also house an archive of Q's journal and pictures from this site. Once again, thank you so much and I look forward to keeping in touch! Sincerely, Sarah (forever Q's mom)
