Day +292: Say It Isn't So!

Out in the boonies, playing it safe!

Dying to get into the game!

Big Bro Devin in action

Gia was loving being out in the fresh air

The weekend went by so fast. Saturday was consumed by Devin's baseball game. Jaden wanted to go, so I made sure we took every precaution possible. He had on plenty of sunscreen, wore his hat and long-sleeved shirt (luckily he wanted to suit up in baseball gear as well, so it wasn't a tough sell). Guri took him out in the middle of the sports field with no one around and had him on a lawn chair under an umbrella. I was pretty happy about the protection, but Jaden was so bummed about being so far from the action. Like I said earlier, he's used to being right by his brother's side, just outside the dugout.

He was sitting out on the lawn, in the sun, when I walked up. I tried to get him back under the umbrella, but he said he was cold. Considering he had on a baseball cap, I hoped it would be okay. Jaden would also use the excuse of checking the score board and wander back by the dug out to get a closer look. After waiting a few minutes, I would have to gently coerce him back to his spot. He was not happy with me. Complaints of "What's the point?" and "I thought this was going to be fun, but it's NOT!" filled the air. I felt so bad for him, but Guri was wonderful about coming back and playing some catch with Jaden out in the field.

Sunday was dedicated to getting things organized. I'm happy to say that the house is starting to get back in shape. We are working slowly on putting things back in place, which in turn leads to peach and tranquility for both Guri and me. Jaden worked very hard helping me clean and organize his closet. He is so meticulous and orderly--it was a task he jumped right into and enjoyed quite a bit. You can't say that of many 6 yr olds!

Jaden also went outside with Guri and Devin to shoot some hoops in the backyard and also found his collection of baseball cards to organize. By the end of the day, I could see the fatigue in his face and he complained that his body hurt. I went into panic mode and had him rest and hydrate himself. I gave him some Tylenol before bedtime for his body aches and massaged his legs, but I was afraid to take a temperature. He felt a little warm, but I prayed that it was fatigue-related again. I knew if I took his temperature and it hit that 100.4 mark, I'd have to notify the MD on call and deal with an almost certain admission to the hospital. I'm just not ready. It feels almost childish, but I guess I thought that If I don't know what his temperature is, I won't have to deal with the reality of admission, something I'm not ready to face again just yet.

Guri and I tag-teamed as usual for the evening routine as we got the kids bathed, fed and in bed. We watched a little TV together and finally dozed off. I'm such a light sleeper these days that every little thing jars me from sleep. This morning, I had the pleasure of Mr. Jaden waltzing into our room at 1:45am. Of course the first thing I thought was that he was running a fever or not feeling well. As he climbed into bed with us, I felt his forehead and it was cool. Okay, buster, what's the big idea? Then I thought, just let him be for a while. Well, Jaden decided to take the liberty of stretching out across my side of the bed, which left me sandwiched between him and Guri. I couldn't move to either side but figured I was so tired that it wouldn't make a difference. That worked for about 15 minutes until I finally got Jaden up and back to his own bed.

At 5:15am I heard Gia crying. Mom had the monitor tonight and I knew we had talked about why Gia kept waking up so early. Mom had suggested we let her cry it out for a bit. I didn't hear her any longer so I assumed she went back to bed. Mom told me later that she did go give Gia a bottle but that she fell asleep right away after she drank her milk, which is exactly what she did with me the other night. Can she really be that hungry? I feel like we stuff the little munchkin until she nearly explodes every night in hopes of getting her to sleep in a little bit!

Guri woke me up about 6:30am so I could get going. Today was Monday so it meant clinic day. I was warned that it would be a longer day because Jaden needed IVIG (immunoglobulin) since his IGG level was below the 500 threshold last week. Guri got Jaden going while I got ready to go.

It seemed harder to get myself out of bed and out the door today. I decided to swing by Starbucks for a caffeine rush as we headed to CHO. As soon as we arrived, I let the nurse know that I was holding Jaden's meds until his lab draw, in hopes of moving things along. It was still half an hour later before things got moving and the nurse came in with all the supplies.

Jaden of course went into meltdown mode. He starts to cry and grabs my arm as he screams "Mommy, NO!". It kills me to hold his arms in a big hug as the nurse jabs the needle into his port. Surprisingly, when it was all said and done, Jaden said he didn't feel it this time! See, Jaden, the nurses at Duke told us that it would get easier as the site healed. I was relieved since he already was so upset that the clinic TV did not have Nickelodeon or Disney Channel AND the PS2 wasn't working or if it did work, there were really not many games to choose from (did I mention that we were spoiled at Duke?). But I came prepared and he was able to play games on my laptop.

Nurse Sherrie came in and briefed me on the days events. Jaden would get IVIG after his lab draw and then she would come in to show me results as they came in. She also showed me a draft of a medication checklist that I had requested. I was surprised at the effort involved as it looked like it was created from scratch and the nurses wanted my feedback on layout and content. I pointed to what I was using currently. Again, it was an application Duke used called MyMedChecklist. It was very straightforward. The nurse had given me access to it so I was able to see Jaden's schedule and print it myself. The CHO copy paled in comparison. I told Sherrie that it might save them some man hours if they just used what was already set up. Sherrie looked intrigued and said she'd look it up right away. She later returned to tell me that their group would have to sign up for the application and that she would bring it up at their next meeting. oookay...

In the meantime, I asked how long the IVIG would run and was shocked to hear FIVE HOURS! WHAT???? Why that long? I knew it took a while but never remembered it taking most of the day. I'm horrible in that I just pick up my phone and call Duke clinic to verify. I found out the rate of infusion, how it's ramped up, what dosage is given, etc. I'm sure the nurses at CHO must love me for it! But, I have to cover my bases. They are still getting to know Jaden and his routine. I need to ensure there are no mistakes.

I found out from Duke that Jaden receives 10g of IVIG and it's ramped up based on some formula the nurse gave me (I wasn't going to go that far). When I asked what the dosage was for Jaden, I learned it was DOUBLE the dose. No wonder it took so much longer. Why the difference? No one seemed to know, but the dosage was based on 1g per kg of Jaden's weight, so it was "protocol" at CHO. As much as I wanted to email Dr. Prasad, I knew I had strict guidelines about Dr. Walters and his team being fully in charge of Jaden's care. I'm still planning on getting to the bottom of this...maybe I'll unofficially ping of of Jaden's nurses and pose the question. I would think the guidelines for this med are standard across organizations.

Alicia, our nurse, also asked about premedicating Jaden with Tylenol and Benadryl. What? Premeds for IVIG? I don't remember that...I'm pretty certain the premeds were for blood products (red blood cells and platelets) only. The nurses didn't seem too sure, so I told them to err on the side of caution and Jaden received both medications. Of course as soon as he got the Benadryl, he started getting sleepy. This med knocks him out and Jaden slept for several hours, which was a blessing in this case because he had already started the "I'm bored! This place really stinks!" chant soon after we arrived. I did end up calling the Duke clinic once again and was told they had no records of Jaden receiving premeds for IVIG--oh well, better safe than sorry.

It was just past noon and Jaden's lunch sack was delivered to the room. I must say this is a wonderful perk at CHO. Unfortunately, Jaden was out cold, so I just had them set it on the table. Soon Dr. Walters came in and introduced himself. He started asking about Jaden's fevers and I told him he only had it once and I was certain it was fatigue related. I also asked if this was normal. Dr. Walters said fatigue is common, but not the fevers. Once I told him that Jaden was about 88-89 degrees, Dr. Walters didn't seem too concerned. He said it would even if it was low 100, he wouldn't be bothered, especially if there were no other symptoms.

I went on to ask about Jaden's ability to attend a family wedding this summer. Dr. Prasad had initially given us the green light, but more recently was hedging, so I wanted to ensure it was safe to take Jaden. Dr. Walters confirmed what Nurse Sherrie had told me: normally patients are NOT allowed to leave the local area while they are on immunosuppressants. However, since it was close family, he felt that we may not be able to keep Jaden from "normal" events.

Having said that, Dr. Walters stressed how it was critical to keep Jaden away from crowds right now. Great...this is an Indian wedding. We're talking a "small" one hundred person ceremony followed by a more traditional 300 or so guest reception. I tried to get a buy-off by mentioning that the ceremony itself was OUTSIDE on the rooftop garden of the hotel. Dr. Walters cautioned that with 100 people, Jaden would have to wear his N-95 mask (not just the little Mickey Mouse one) at all times. With the reception indoors and the crowd swelling to 300 or more, Jaden would have to be even more careful. The mask would need to stay on and under no conditions was ANYONE allowed to touch or hug Jaden. Er...did I mention we're Indian? Hugging is a cultural thing, how do you NOT hug someone when you greet them? It's in our blood...we're just huggers by nature!

Dr. Walters reminded me that while Jaden is on immunosuppressants (mainly Cellcept and FK-506), he is incredibly immune-compromised and very susceptible to infections. How could I be sure no one in a crowd that large was ill or hadn't been around someone that was ill? Someone may have a virus that they are immune to but one that could be very serious for Jaden. I started to panic. I never thought of NOT taking Jaden down to LA for this event. I just assumed we'd have to be extra careful. Now, I was stressed. Dr. Walters continued. Was it worth Jaden getting sick and hospitalized for several days? I mentioned that Guri's parents lived close to Children's Hospital Los Angeles. Dr. Walters clarified that Jaden was just barely transitioned to CHO. The doctors and staff were just getting to know him and he had been to clinic several times now. Although Dr. Walters would arm us with a letter detailing Jaden's condition (and I already had one from Dr. Prasad), he felt we were relying on a piece of paper to fully convey what Jaden's conditions, medical treatment, precautions, premeds, etc. were SHOULD there be an emergency. Were we comfortable that the staff at the new facility would be able to comprehend and absorb all of this information while they attempted to treat Jaden's urgent needs? Good point. Now I was really distressed. I could feel the beads of sweat forming on my brow. I had to ask myself "After everything Jaden's been through, was I prepared to subject him to more? Was I willing to risk his health over this one event, as important as it was?" I knew the answer in my mind. I was just in denial. I so wanted Jaden to go to LA and have fun with all his cousins. He had been talking about it for such a long time. I didn't know how I was going to break the news to him.

I then got another shocker when I asked Dr. Walters whether Jaden could swim in family pools. I was looking for confirmation to the approval I had already received from Dr. Prasad, but Dr. Walters again said NO. Regardless of the pool and the amount of chlorine used, there is always some bacteria there. Jaden cannot risk it. HOLY SHNIKEES! Jaden is going to be crushed. I do not want to be the one to pass this piece of information on to him. We were making all sorts of plans around Gunu bhua's pool and all the time Jaden would be spending lounging with his cousins. Now what?

Dr. Walters asked how long I was planning to go down to LA for--a few days he assumed. I told him I was planning on being down there with family for a few weeks. Well, I got the KABOSH on this as well. IF we were going to go at all, we could not keep Jaden out of the local area for more than ONE WEEK-tops! Beyond that, Dr. Walters felt we were just tempting fate. It was too big of a risk. Okay, there go my summer plans....I should know better to make long-term plans at this point!

I kept going with my questions. Could I assume Jaden would return to school for second grade in the Fall? My jaw dropped as Dr. Walters shook his head once more. WHAT? WHY NOT? This would be the nail in the coffin...I can't tell Jaden this. I WON'T burst his bubble! He's so excited to be back in school with his friends and teachers. Dr. Walters just said he will still be on immunosuppressants. Okay, the next obvious question is "how long will he be on these meds?". Dr. Walters told me the plan was 6 months at least. Jaden started in April, so he'd go until September. If everything looked stable (no more lymphocyte decline), he'd start to slowly taper one of his medications. If this went well, he would slowly taper the other. Dr. Walters said that at this point, we should assume Jaden would be home-schooled through second grade. I'm not going to share this piece of information with him just yet...it would devastate him!

Dr. Walters must have seen the color fade from my face because he gave me a ray of hope. He told me it would just depend on how Jaden responded to the immunosuppressants. He had one patient that had some rare small virus and once the immunosuppressants were administered, the patient showed immediate turn around-to the point he was completely back to donor cells within 3 months. I prayed this was the case. Hopefully Jaden's cells would also respond well. It would be wonderful to start tapering by June or July, so that he's ready for school in August. Please pray that this is the case.

It's already going to be a long few months for my little guy, I'd hate for all this to drag until the end of the year, or worse, into the new year. Jaden's morale is already low. I don't know how he will respond to all of this. I have to find things for him to do. I have to give him some sense of normalcy. I ran a few ideas by Dr. Walters. Could I take Jaden to the movies? Dr. Walters confirmed this was okay, again, as long as it was a weekday afternoon matinee when all the kids were in school. Should I take my Lysol wipes for the seat? Should I put a sheet over the seat? Dr. Walters told me this was not necessary. Most of the germs were transferred by people. I asked if I could take Jaden to a museum or other venue under the same guidelines. Dr. Walters muttered "Those are great ideas!". Okay, at least I had something to go on...

Dr. Walters examined Jaden, who opened a groggy eye and then went right back to sleep. When he awoke, he was cranky and wondered how much longer still. Luckily, we were in the last hour of the medication. I got him to eat a few bites of the orange, but then he said he wasn't hungry. He didn't want the lunch. I asked the nurse if I could go get him something from McDonald's and she said that would be fine. WOW! This was so different from Duke, where I wasn't allowed to leave the premises without Jaden. I could only go as far as the cafeteria and I couldn't even do this if he was in the middle of an infusion. Drastic change!

Before I left, I offered Jaden a banana, which he gladly accepted. I fed him a few bites and then ran to ask Nurse Sherrie if he was allowed to hold the fruit himself. She gave me a strange look as she gave her approval. I told her that post-transplant, I was told Jaden could not touch the banana peel and that I would have to peel and cut the fruit for him. Sherrie must have thought I was some deranged lunatic as she reiterated "It's fine for him to have his banana". Once again, I asked "So, it's OKAY for JADEN to HOLD the banana HIMSELF?" She nodded a firm YES. Okay, just checking. So, shoot me for being ultra-cautious!

It was just past 4pm when we left the hospital. I knew Devin would be livid because Tae Kwon Do class started at 4:40pm and I knew I was going to make him late, which he detested (mainly because Ms. Claudia would give him a hard time). I called home to let Devin know I was on my way and we rushed out the door.

Just as I suspected, Devin was not happy with me (I'm seeing a common theme here). He raced to the car to tell me he's not going because it was already time for class to begin and we hadn't left home. I told him to hop in the car (as I hurried Jaden into the house) and promised to take the blame with Ms. Claudia.

Finished class and came home to start the night time routine. Another day done. Guri and I need to strategize about today's events and come up with a plan. Who will go to the wedding? How will we break it to Jaden? How will we make it up to him? We got a lot of 'splainin to do!