Making himself at home at Oakland Airport
Thank goodness for DS...kept him busy throughout the flight
Chicken nuggets again? REALLY, Jaden?
Molten Chocolate Cake at Chili's--a family favorite!
Kickin' back in the hotel room
PFTs once again...Jaden is such the PRO now
Dr. Prasad and Dr. Preeti were so impressed with how well Jaden was doing!
Winding down at Kanki's: is there life beyond chicken nuggets?
Jaden looks so much like himself again!
Outside Kanki's: Jaden was fascinated by the "lava fountain"
Since Jaden was still not allowed to travel on commercial carriers (he remains on immune suppressants), I had contacted Corporate Angels several weeks ago to arrange for a trip back to North Carolina on one of their corporate jets. They were the ones that coordinated our flight back from Duke in April on a Heinz jet.
It was a week before we were to leave and I still didn't have a confirmed flight. It appeared no one was traveling from the San Francisco Bay Area to Durham. When the company opened up their routing to over 100 miles, one flight did show up. It would leave Oakland on July 10 but fly into Charlotte, NC (about 145 miles, or nearly 3 hours from Durham). I thought about flying cross country and then putting Jaden in a car for a long road trip right after and it just didn't seem right. I waited and waited for other options to become available, but none did. I would have taken this flight as a last resort, but Corporate Angles had no known return flight for us. Being the week before our appointment in Durham, I had to make a decision and ultimately contacted Dr. Prasad and explained our situation. Jaden was finally given the green light to travel by commercial airlines, given the circumstances, but he had to wear his "duck mask" the entire time--from airport check in at OAK to rental car pick up at RDU. Guri's parents even offered us their mileage reward tickets, but there were no seats available this late in the game. With no other option, I booked a last minute fare on Southwest and packed our bags for our quick trip back east.
Jaden was elated to be at an airport after more than a year. He was thrilled to see the planes up close, see the people in the gate area, and peruse the gift shops. I, on the other hand, was a nervous wreck. I had my box of Lysol wipes with me and proceeded to wipe down everything on the plane before Jaden sat down. Imagine that I have 4 carry ons (one small suitcase, my laptop, my camera, and a backpack with Jaden's meds and "in-flight entertainment"!) plus Jaden to manage. I'm pushing my way through the people at the gate, explaining my situation, getting Jaden on the plane, telling him not to touch anything until I wipe it, meanwhile I'm blocking the people behind me. In short, if you're a frequent flyer, we were your worst nightmare!
We arrived in Durham on Wednesday evening to a blazing hot and muggy climate. I forgot how horrible the weather can be since Jaden was inpatient on 5200 through the summer (and into the Fall!) last year. To make matters worse, the air conditioning in our rental car kept going in and out. Jaden and I were literally dripping in sweat by the time we made it to the hotel! I wanted to get Jaden some dinner and get him to bed since we started testing the next morning. Of course things never go the way I plan and he was up late Wednesday night. I think with the damp and steamy weather, not to mention the time zone change, we both had a tough time falling asleep.
With my cell phone alarm blaring, followed by a wake-up call from the hotel as back-up, I tumbled out of bed and got ready for the day. I then got Jaden going. We started with a 9am visit to the bone marrow clinic of Children's Health Center (CHC). To me it felt as though we'd never left. I remembered the streets, the way to the clinic, the nearest grocery store, the important restaurants (Chili's, in our case). I saw many familiar faces smiling at us and welcoming us back. While we waited in the Fish Tank room, Melissa and Rocco (our dear friends from The Lofts) poked their heads in. I was so happy to see Rocco looking so well and congratulated Melissa on their go-home date of Saturday. Rocco, a fellow CGD patient, had done incredibly well through transplant and they were headed back home at just 4.5 months post transplant. Of course everyone had their little issues, but for the most part, he was faring wonderfully.
After the brief visit with Melissa, one of the nurses came to get Jaden for vitals. We then went into an exam room where Nurse Amanda greeted us. We caught up on the past few months and then reviewed the myriad labs that needed to be drawn. I wanted to ensure that chimerism, NBT (CGD test), and a few others were scheduled and she confirmed that they were. Jaden was in a panic about his port being accessed again. I had to calm him down and remind him that the nurses at Duke are highly skilled and it shouldn't hurt much, if at all. As usual, Jaden gets himself so worked up about the needle insertion into his port (even though it actually saves him from getting an IV), that he starts crying immediately upon seeing the needle. Once things are done, he always mentions that it wasn't as bad as he anticipated. He even said that Amanda and the Duke nurses were best!
With the labs drawn, we went on to get Jaden's echocardiogram, chest x-ray, pulmonary function testing, and his follow-up vision testing. Most of the results would be discussed with Dr. Prasad at the end of the afternoon, but Duke Eye Center was a separate entity. Dr. Young reviewed Jaden's eye test with me. Overall everything looked great. She did mention that the vision in one eye was minimally less than the other and suggested that Jaden would need glasses at some point. Of course my first question was "Is this due to the transplant?" and of course I was told it was not. It's just the normal growth pattern for him. She asked if anyone in the family wore glasses. Well, um...yes. I got glasses in seventh grade. I shuddered at the memory of being told after an in-school eye exam that I would need glasses. Geekish kid with long pigtails that I was at that point, the glasses would just add to my misery....I quickly wiped the vision away and reassured Jaden that whenever he needed glasses I would let him pick them out. Jaden was visibly upset and the first thing he said was "Devin's going to make fun of me!". No, Jaden, he won't. We'll get you some cool ones like Joe Jonas. What? Those are UGLY! Okay, well you can pick whatever you'd like, but it's not even an issue yet!
With a quick thank-you to Dr. Young, we hurried back to CHC for our meeting with Dr. Prasad. We hadn't been in the Fish Tank room very long when Ashley came to get us. She said that Dr. Prasad and Dr. Preeti were anxiously waiting to see Jaden. As we turned the corner into the hallway, we saw both of them standing with big grins on their faces. "Where's my hug?" Dr. Prasad asked Jaden. Jaden sheepishly complied. Dr. Prasad then opened his arms to me and I gave him a great big hug. I also hugged Preeti and we headed over to an exam room. "He looks great!" was the first comment Dr. Prasad uttered. "Doesn't he?", I beamed.
"Okay, before you go crazy, let me tell you Jaden DOES NOT have GVH of the lungs!" Dr. Prasad blurted out. I felt a huge wave of relief roll over me. This had been the biggest issue over the past few weeks at Children's Oakland. Nurse Lizzie was convinced that Jaden was showing "classic signs" of Graft vs. Host Disease in his lungs (apparently in listening to his lungs and in the chest CT that was recently ordered). She even told me that Dr. Walters concurred after reviewing the CT and that changes to his regimen would be made immediately. The team had put him back on his breathing treatments and added Azithromycin to his med list. I was in total shock at the time. I couldn't believe that Jaden could get GVHD this late in the game. I was sick with worry and really needed to hear it straight from Dr. Prasad, who I felt had know Jaden the longest and understood his medical condition the best.
What made things even more interesting was that Dr. Hardy, Jaden's pulmonologist back home, had called me last Saturday asking why the breathing treatments were restarted. While I understood Lizzie to say that she had consulted with Dr. Hardy prior to the change, Dr. Hardy clarified that she had merely received an email letting her know of the change. She was in clinic in Reno and did not access her email until that day. At this point, I was livid. Just as I was letting my guard down and entrusting Jaden's care to CHO, I was shown that I still have to closely manage every aspect of his care.
Dr. Hardy told me to stop everything Jaden was taking as far as pulmonary issues were concerned and immediately scheduled him for follow-up pulmonary function testing the following Monday. After all, her plan was to have him off the medications for a month and then check to see whether things deteriorated or stayed the same. Luckily, I had only given Jaden 3 breathing treatments and one dose of the antibiotic by the time she called.
After the PFTs at CHO on Monday, Dr. Hardy explained that the breathing treatments did seem to help, although minimally, so we could continue with them. Luckily, she changed the albuterol to puffs and the pulmicort to Advair, so administering them would not take up half of our mornings. I had asked the tech to print out all copies of the results and I also had Dr. Hardy print out her chart notes so I could ensure Duke was up to speed.
I then marched over to the Day Hospital where I had told Lizzie I wanted to speak about the incident. I was livid that changes were made without Dr. Hardy's buy-in. I was even more disturbed that I was now being told CHO did not have all the films from Duke and therefore could not compare the latest CT to prior ones to measure changes. WHAT???? So how about YOU actually pick up the phone and call your colleagues at Duke and ask to have these sent over? We've been home for nearly 3 months and you're just NOW noticing that you don't have the films? How can you properly assess Jaden's situation and formulate and accurate treatment plan without critical pieces of data? My dukes went up and I was once again ready for battle. This situation was all too familiar to me and I wasn't about to let operational inefficiencies get in the way of getting the best possible care for my son. I told Lizzie my expectation was that the two centers would coordinate Jaden's care and ensure the transition was seamless. I did not want to get calls or emails from either party asking me to facilitate getting documents for them.
Getting back to Durham and Dr. Prasad. He assured me that Jaden did not have GVH. He went so far as to say that it was nearly impossible to have GVH of the lung with an identical matched sibling transplant. I was overjoyed to hear this. Dr. Prasad knew me so well--he sensed I'd be panicking and going non-linear and was very direct with me. I really value his input and wished we lived closer to Durham so Jaden's follow-up care could have continued with Dr. Prasad. As I reiterated what I had heard, Dr. Prasad spelled it out for me. Jaden had 3 things going on with his lungs: he did have interstitial pneumonitis from scarring prior to transplant, he did have a small lung infection that would be treated with the antibiotic (which incidentally he doubled the dose of for Jaden), and Jaden had asthma. He DID NOT have bronchiolitis obliterans as was repeatedly told to me by Nurse Lizzie. Dr. Prasad explained that with bronchiolitis obliterans the airway is constricted and hardened and nothing really can change that. In Jaden's case, the PFTs clearly showed that the breathing treatments helped him--as much as 40% improvement in one area! Dr. Prasad continued on to tell me that Jaden would probably need the puffs for quite a while and when I asked if Jaden would ever outgrow the asthma, Dr. Prasad felt there was a good chance he would.
Dr. Prasad then reviewed the PFTs with me and circled the number 80% on one test. He said he was THRILLED to see this. With a DLCO of 56% back in April, Jaden had shown drastic improvement in this area.
Dr. Prasad moved through the rest of the results, using his black marker to highlight areas of improvement as he explained that Jaden's counts were ALL within normal range now. We then went on to the chest x-ray, which also indicated that there was some sort of infection in the "right middle and right lower" lobes. Dr. Prasad already had discussed this with me, so we went on to the echocardiogram. The difference in this test result was the appearance of a thicker lining of the heart. The exact medical terms elude me ("some thickening/left ventricular hypertrophy"?), but just as my eyebrows were raised in careful concern, Dr. Prasad mentioned that it was more than likely due to the long-term use of one of the immunosuppressants, specifically Tacrolimus. He said things should revert back once Jaden is off this medication.
Once the results were reviewed, Dr. Prasad went on to remind me that Children's Oakland should give Jaden Synagis through flu season to prevent RSV (respiratory syncytial virus). He also said to ensure everyone in contact with Jaden had their flu shots this season. This is a no brainer for us since we've been doing it to protect Jaden for years. Dr. Prasad mentioned that CHO should also review whether Jaden is ready to receive his first flu vaccine this year. Since we're starting from scratch post-transplant, Jaden will have to be re-vaccinated once his body is able to withstand them.
So, it looks like Jaden's lungs are still the primary area of concern. I asked when the immunosuppressants could be weaned. Dr. Walters' team had given me a pretty evasive answer (no real number/want stability/yada yada...). Dr. Prasad made it very clear that ideally we want 100% of Jaden's cells to be Gia's (donor) on all fronts. He's looking for the CD3 (lymphocytes) to be between 80%-100% before we start the wean. Jaden's current last CD3 count was at 46%.
This led right into my next question. When could Jaden could go back to school? Should I assume that he's out for another year? Dr. Prasad said to plan on at least 6 months for now and then we could re-assess the situation. I asked if Jaden could go to LA if we drove and he said yes. I casually mentioned that there could be no swimming for Jaden, even in a family pool, because of germs (knowing full well that Dr. Prasad had okay'd Jaden to swim only in a private, family-owned pool). I also mentioned that CHO wanted Jaden to wear his "duck mask" at all times when leaving the house. I told Dr. Prasad honestly that if we were outside and not with a crowd, I didn't push the issue with Jaden. Dr. Prasad just grinned, shrugged, and mumbled "quality of life...". If you're getting the gist of my questions, I really wanted to see if there would be discrepancies between Dr. Walters' team and Dr. Prasad's team on certain issues. When I brought up the differences in a childish "Dr. Walter's/ the nurse practitioner said..." whine, Dr. Prasad quickly reminded me that I had promised to work within Dr. Walter's guidelines when we began the follow-up care at CHO. I know, I know....DAMN, I wish we lived closer to Duke.
After hearing lots of politically correct answers from Dr. Prasad (even though some of his body language told me exactly where he stood on certain issues), I decided to give it a rest and move on. Dr. Prasad ended the visit by reiterating how good Jaden looked. He said he'd see us back in 6 months, or early January 2011.
With our official visit complete, I really wanted to go to 5200 and see if any of Jaden's primary team was still around. I knew many had moved on or gone back to school. Jaden wanted nothing to do with it. He just wanted to go home. I'm hoping one day he will realize how invaluable these people have been to his healing and recovery. In essence, they helped him get a new, healthy life and I want him to have the same sense of gratitude and awe (for lack of a better term) I feel when I come back to Durham. I think right now he just associates Duke with a very long hospitalization, confinement, and pain. Hopefully this will change in the near future.
We headed back towards the hotel to rest for a little bit before heading out for dinner. Jaden wanted chicken nuggets again but I was determined to open up his world to life beyond chicken nuggets. I forced him to go to Kanki's across the street from our hotel. This is like a Benihana back home where the chef cooks right in front of you. I had taken Devin several times and he LOVED the place. Jaden was very hesitant but finally agreed. With some prodding, he ordered the chicken and rice, but was more amused by the chef's antics than the food itself. I had to force him to eat just his chicken and he told me several times he wished he'd ordered the chicken nuggets from the kids menu! So much for expanding your horizons!
We wrapped up our time in Durham and headed back out first thing the next morning, just as quickly as we had whizzed into town. It was Friday after all and Devin was going to be starting his second baseball tournament on Saturday morning. We couldn't miss that! Life as we knew it in San Ramon was waiting for us and we were needed back home.
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