Let me start with our incredible trip home. The wonderful people at Heinz corporation treated Jaden like royalty (and I got to tag along for the ride). It all started when we arrived at Landmark Aviation in Durham and were met by the pilots of the small jet that took us to Pittsburg. They were so warm and welcoming and spent time talking to Jaden. It was part of the Corporate Angels flight, so we were the only 2 passengers on board. The pilots joked how Jaden would REALLY enjoy the bigger jet that took us home.
Once we arrived at the hangar in Pittsburg, we were met on the tarmack by a shuttle van that took us immediately to the Heinz hangar. There, once again, we were met by one of the pilots who escorted us into the lounge area. Once in the lounge, we were greeted by the flight attendant Marsha Lee. She was incredible gracious and welcomed Jaden with a gift bag full of Heinz logo wear, including a red baseball cap which incidentally matched perfectly with his outfit! The gift bag also included 2 movies she had hand-selected especially for Jaden: Alvin and the Chipmunks, the Squeakquel (which Jaden had wanted to see for some time) and Mr. Majorium's Wonder Emporium.
Jaden and I were escorted on to the Gulfstream 4 jet while our bags were taken to the rear of the plane. Captain Jerry Pearson and Captain Greg Gillooly showed Jaden around the cockpit and took lots of pictures as he "flew" the plane from the pilot's seat. I have several of my own, which I will come back and post once things settle down at home. Captain Jerry even asked for my email so he could send me the pictures he took, which were waiting for me in my inbox the next day!
As for the interior, let me just say WOW! is an understatement. We're talking cushy leather sofa and lounge chairs, which Marsha told us all convert to full beds for trans-Atlantic flights, along with paneled wood interior detailing. Marsha got Jaden cozy on the couch (diwan) with a pillow (think down, not synthetic) and blanket and turned on the chipmunks movie for him while we waited for the corporate executives to arrive. We would be traveling with the CFO and the officer in charge of investor relations. Both were incredibly friendly and greeted us with genuine warmth. Of course I thanked everyone profusely considering we would not have been able to make our trip home had it not been for the kindness of this group.
As we took off and reached a cruising altitude, breakfast was presented in the finest china. I'm not talking about reheated airline food, I'm talking about made-to-order egg white & veggie omelets with yogurt parfaits served in a wine glass. I was in HEAVEN! Even Jaden enjoyed his Cheerios in a magnificent china bowl. I could definitely get used to traveling in this manner. As a matter of fact, I don't think I'll fight Dr. Prasad for our corporate flight back to Durham for Jaden's one year studies! You should all experience this mode of travel at some point in your lives--it's well worth the expense. The Corporate Angels representative was spot on when she said once Jaden travels in a jet, he will never want to go back to the commercial airlines.
We arrived at a hangar near SFO in record time, although it was later than scheduled due to strong headwinds and the flight path into SFO (we circled over Nevada for a little while!). Guri was waiting for us and Jaden ran and jumped into his arms. I wish I had my camera out! Even though Guri did not bring a Hummer limo as Jaden requested, he did decorate the entire house with Devin's help in balloons, streamers and lots of "Welcome Home Jaden" signs. It was a sight to see!
Jaden was thrilled beyond words to be home. After being in an apartment for 10 months, the house looked so BIG and roomy! We took our time reacquainting ourselves with the once-familiar surroundings. I saw Gia, who greeted me with the loudest "MAMA!" and the biggest hug I have ever received. It was good to be home at last!
I was equally thrilled by the hug Devin gave me when I picked him up from school. I met several good friends on the way to school and it felt so good to be among familiar surroundings.
I wish I could say the day went smoothly, but Jaden insisted on playing baseball with his dad and big brother later that evening and ultimately ended up with a low-grade fever. I was nervous as heck. I knew I was exhausted after the sleepless night and long travel day, so I couldn't image how Jaden must be feeling. Add to that fatigue the physical exertion of playing ball and no wonder his little body responded as it did.
I was in a panic. I hadn't even met the team at Children's Hospital Oakland yet, but thankfully I had introduced myself and Jaden via a phone conversation with the nurse practitioner. So, when I called Sherrie to let her know about Jaden's fever, it wasn't completely a "cold call". I had a feeling it was fatigue and since his fever did not reach the threshold of 100.4 (although it did have this reading at one point, but Guri and I decided to continue giving Jaden fluids and the fever came down on its own), we did not have to go in to the hospital. Sherrie did send out an email to the on-call team to let them know about Jaden and pass along his discharge docs from Duke.
The next few days I was extra careful not to let Jaden over-exert himself. He was so bored and frustrated. He probably thought coming home to San Ramon was his ticket to freedom, but little did he know it was just a larger cage. He is still very much restricted in what he can do and since I am the gatekeeper of his activity levels and therefore say the word "NO" quite frequently, I am not in Jaden's good graces (not that I have been the past few months anyway!).
Soon, Jaden was running around the house and back to himself. Once he realized that he was limited to the house, our backyard, and the "grass park" or greenbelt next to our house (provided not too many kids were there), he became quickly bored and belligerent. "I can't DO anything!" He cried often and rebelled quite a bit. I had to hold firm until of course dadaji came to town.
Today, Jaden convinced his dadaji (Guri's dad) to take him to Target and came home with a bag full of Legos and other treats. He then told Guri his baseball glove didn't fit and ended up with a new one from Big 5 Sporting Goods. What I didn't know was that Jaden and his dad played baseball in the back yard for a bit. This was followed by a play date at the "grass park" with Jaden's best friend Josh.
By the time we got to the park, I could tell Jaden wasn't feeling like himself. Considering he hadn't seen Josh in nearly a year, Jaden was very quiet. They played soccer for a few minutes, but Jaden just wanted to sit down. He then said he was cold and went into the sunny part of the sitting area. FLASHING RED LIGHT!!!!
About 45 minutes later, Jaden asked to go home. I was already concerned, but now I was downright paranoid. Jaden went home and said he was cold and very tired. I had him sit down on the couch and gave him a blanket. Guri and I began giving him fluids and took his temperature. It was over 100. I really panicked at this point. Guri suggested we continue giving him fluids and recheck it in a little while. Well, after about an hour, the temperature actually went up to 101! Concern turned to panic as I prayed frantically that this was just overexertion and that Jaden would rebound quickly as he did a few days ago. I promised God that I would watch more carefully over him and keep him safe, if he just made Jaden better this one time. I knew I could not go through another admission this soon after returning home.
At a minimum I knew I had to notify the Hematology/Oncology doctor on call. She was wonderful and was very comforting on the phone. I asked about their protocol and she said she had received the update from Sherrie via email. At CHO, they generally admit a child into the hospital with a fever over 100. The child is kept inpatient over 24-48 hrs while IV antibiotics and fluids are administered and until the blood cultures results are known. Hearing this made my heart stop. I DID NOT and COULD NOT go through another hospitalization. I just didn't have it in me. I prayed again and again for Jaden's fever to come down. I told the MD on call that he did not have any other symptoms and I felt he was just fatigued. She agreed to let me continue with his fluids and call her back when I retake his temperature, which I planned to do at 9pm when I gave him his evening dose of medication.
I was a nervous wreck the entire time. Guri stayed by Jaden's side as he slept in our bed. He blamed himself for overexerting Jaden during baseball. He worried about how our son would make it through the daily grind of second grade when he seemed so weak. We checked Jaden's temperature multiple times, finding a huge disparity between the ear and axillary (under arm) readings. I was pleased that ultimately his fever was coming down, although not by much. By the time I woke him up for his 9pm meds, his ear reading was 100.9 and his axillary temp was 100 even. I notified the doc of this update and she said that she felt okay with Jaden at home since his axillary never reached 101. As long as we kept a close eye on him and called back with any changes, she would just note our discussion and release us to the clinic visit tomorrow. She knew Jaden would have labs drawn at that time and a very thorough examination, given it was his initial visit at CHO.
I thanked God and continued to pray for Jaden's fever to go down. I wanted to see my little guy back on his feet and running around the house. I think, at a minimum, this little scare opened our eyes once again to just how fragile Jaden's health is right now. It also woke Jaden up to the reality of pushing himself too much. I could literally see the fear in Jaden's eyes of being taken to the Emergency Room at CHO tonight. He kept saying that he was "fine" when asked how he was feeling, even though it was painfully obvious that he was not feeling this way at all.
As good as Jaden looks physically, his little body is far from "normal". I have to remind myself that he is still on immunosuppressants and highly susceptible to infections. It's time to play "bad cop" again and I plan to take my job very seriously. I know Jaden doesn't know or understand all the limitations which are placed on him right now, but I plan to keep him safe and infection free, even if means hearing things like "You're the worst!" or "It's all YOUR fault I'm stuck here!". I'm okay with it, as long as Jaden is safe and healthy.
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