Day +155

Monthly Pentamadine treatment in clinic

First off, let me start by saying HAPPY 10 MONTH BIRTHDAY, GIA!!!! I can't believe my baby is getting so big! She'll be ONE and running around before we know it...wish I had the time to take some more pictures today.

Jaden did surprisingly well last night. He only desatted briefly once or twice and then stabilized fairly quickly. Of course now that I'm accustomed to being up until 3am or later, I had a hard time falling asleep until 4am.

Jaden was up by 9am and Gia was up playing as well. I knew I had labs to do and I wanted to see if I could expedite our usually long clinic Friday. I drew and dropped off labs, took a shower, cleaned up, and packed for clinic. I told Jaden that I wanted to be able to leave for clinic as soon as we got the call, so I had everything ready to go.

I called in to see what the lab results were about 11:30am and Dr. Tewari told me that Jaden just needed G-CSF. What? No platelets? Are you sure? She said his platelets were at 96, so he must have gotten a good batch on Tuesday. She also mentioned that his hemoglobin count had dropped 2 points since Tuesday, which seemed unusual, so they wanted to repeat the labs when we got into clinic. I asked about Dr. Prasad's availability and she said that 12:30pm should be good.

Okay, at least we have a timeframe and it's before 2pm for a change! We had about an hour to get there, so I went to go brush and change Jaden. He kept talking about XBOX and playing with him and before I had finished dressing him, he rushed out into the family room and picked up the remote. Are you kidding me? Jaden! We're not done yet! That's it! I'm done with this darn video game. You play it all day, from the time you get up to the time you go to bed! I turned off the XBOX. You need to find something else to do today--read, color, do your crafts, but NO VIDEO GAMES!!!! Jaden was not happy with me.

I finished packing our things, ate my lunch and called for Jaden. He wasn't in the family room, so I went to find him in his bathroom. Are you going pee? He shook his head and pointed into the toilet. Uh oh, he was throwing up. Jaden, are you okay? He vomited a bit more. It looked mainly like mucus and some orange powder--probably his meds. He hadn't eaten a single bite all morning and only had some water and a few sips of Gatorade. He looked at me with those big brown eyes "I can't do school today." Okay, let's go see Dr. Prasad and we'll see how you feel when we get there. He seemed okay. I asked if he felt sick to his stomach, but he said that he had something "stuck in his throat" and drank water and it made him throw up. Okay, sounds like just the sinus drainage irritating his tummy. I really hope we can get the sinus CT today so Dr. Prasad can make some decisions. I helped Jaden on with his coat and warm hat (it was FREEZING cold outside today) and we were off to clinic.

I knew how to work the system now. As soon as we checked in, I asked if a room was available in the Day Hospital. Nurse Nadia said she would find out, but I know if it's not your assigned nurse, it's not really a priority because they have other tasks and patients to deal with. We walked back to the Fish Tank room and I told Jaden I was going to see if a room was ready in the Day Hospital.

I marched right over and asked one of the nurses if there was a room available. Sure enough, one was just cleaned. Can I bring Jaden over? She nodded. Excellent! I knew rooms were usually in short supply and you had to grab one as soon as it became available or wait forever. I went back to get Jaden and Marshall followed us into Room B. Jaden did school with Marshall and I quickly did his breathing treatment before I forgot. Luckily, the treatments are so much quicker with the oxygen pressure than with the home nebulizer, so he doesn't mind it as much.

The nurse came in to redraw his labs and then he was hooked up to the G-CSF. This wouldn't take more than 30 minutes, especially since he didn't need premeds for it. Now it was just a matter of waiting for Dr. Prasad and Dr. Tewari to come by. Boy, if all the planets were aligned and the doctors came in soon, we could actually be out of here in the next hour or two. Oh, please let this be the case. I wanted to drop Jaden at home and take Gia out shopping. I desperately needed to get out of the apartment and away from everyone today. I know this sounds horrible to say, but there are just some days that I feel like I can't do it anymore. I don't want to be responsible....for anything.

Jaden was done with school and his G-CSF just over an hour later. Dr. Tewari came in and did a first round of discussions with me. I told her I was anxious to get resolution on the sinus issue. I think that would resolve a lot of the other things going on like loss of appetite and desatting. She said she would be back shortly with Dr. Prasad.

Surprisingly Dr. Prasad and Dr. Tewari came in not to long after. Dr. Prasad had Jaden strip down to this undies and did a thorough exam. He then reviewed the issues as they stand right now. The most pressing one was the loss of appetite. This could be caused by several things. Jaden has been on 2 heavy dose antibiotics (Moxifloxacin for 4 weeks and Augmentin for 3 week). So, first step was to stop BOTH of these meds. Woo Hoo! If the lack of appetite was due to these meds, we should see an improvement by Monday.

The second possibility was GVHD of the upper gut (stomach and esophagus). If this was the case, we would have to treat with steroids again and this was a slippery slope for Jaden. The third cause may just be thrush in the esophagus. If we didn't check for thrush and started steroids, it could actually make the thrush worse. So, if Jaden was not eating better by Monday or Tuesday, he would need an upper gut endoscopy by the end of next week to check for GVHD or Thrush. They would also get biopsies at this point to help treat whatever the issue may be. The great news was that after examining Jaden head to toe, Dr. Prasad said he saw NO SIGNS OF GVHD. So, this was a less likely possibility. Thank GOD for small miracles!!!!

As far as his sinus infection was concerned, Jaden would get a CT of his sinuses done on Monday or Tuesday next week to check for progress. If there was little change, Jaden would be seen by a specialist who would scope the sinuses and extract samples which would undergo various testing. Based on the test results, a more effective treatment plan could be created.

Moving on to Gancyclovir, which was affecting Jaden's counts. Jaden's CMV results had been consistently negative for a while now. Dr. Prasad wanted to wean him off as quickly as possible, but would do so after seeing the results of the CD4 (immune function) tests that I would draw for with my Tuesday labs. These had to be done first thing in the morning (around 6 or 7am) to get accurate cortisol levels. As long as the immune function testing was good, there should be no problems moving forward with the wean. We should have results of the CD4 by next Friday.

Dr. Prasad also mentioned that Bactrim, the antibiotic Jaden has been on for a while now, also causes bone marrow suppression. Jaden was getting Pentamadine (inhaled treatment) once a month when he was inpatient as a prophylaxis for PCP pneumonia. This was a specific pneumonia that wasn't an issue for most people, but for those that are immune compromised, it could be very dangerous and potentially fatal. The PCP bacteria settles in and spreads fairly quickly. Jaden was switched to Bactrim for the prophylaxis once we left 5200. Dr. Prasad now wanted to go back to Pentamadine to help Jaden's counts. We received a treatment before we left clinic and this would take us through next month.

The second set of labs came back and were consistent with the first ones I drew this morning. The issue actually was the HGB level from 12/8 which was 12.6. This was probably an anomaly because Jaden was dehydrated. Once he got the IV fluids on Tuesday, they came back into normal range. Just to be safe and ensure there was no hemolysis going on, another lab draw was done for the Coombs test. Here are his counts for today:

HGB: 10.3

PLT: 97

WBC: 6.9

I was surprised by the wbc since it was 3.9 when I drew this morning. Does that mean he didn't need G-CSF today? Dr. Tiwari said she noticed that as well, but Jaden had already received his boost by the time the new results came back. Also, since he had his hydrocortisone at 11am, it could also be causing the bump in wbc. Regardless, the small boost from the G-CSF shouldn't be an issue.

Dr. Tiwari also said that although Dr. Prasad didn't think Jaden was dehydrated when he examined him, they were going to do a urinalysis just to make sure. Jaden was put in a big tent with his Pentamadine treatment and then he "gave his sample" before we were cleared to leave for the day. Dr. Tiwari also told me that Jaden's sinus CT was scheduled for 3:30pm on Tuesday. Great--there goes that whole day!

Amazingly we were out of clinic by 3:45pm, only 3 hours after we arrived! This was record timing for a Friday. I had expected to be there all day. At least at this point I knew the plan moving forward. It seemed a lot would be determined next week after all the testing was done. If everything went our way, it could be a tremendous week. Otherwise, it could mean more tests and more antibiotics for Jaden. Either way, we would be taking a step closer towards resolution to all of these pending issues.

We got back to the apartment and Jaden got settled in. Mom was a little upset with me because she had read the blog in my absence and couldn't believe that I didn't tell her I needed a break (why do I have to read about this in your blog?). She said she could totally take care of the kids so I could take off when I needed. I guess that's one of my issues. I'm sometimes hesitant to ask when it comes to doing things for myself...one of my resolutions for the new year will be to put myself first once in a while!

I went downstairs to get some coffee, pick up my packages (my online xmas shopping for the kids was starting to roll in), and print out the xmas list for the boys. I had one item left for Jaden and I wanted to see if I could finish things off tonight. I did need to get away, so I figured I'd kill 2 birds with one stone and actually accomplish something vs. just wandering around.

I headed out to the staples: Toys R Us and Target. Got most everything I needed, with frequent calls from Jaden asking me where I was and when I was coming home. I finished up and called it a night. It was absolutely FREEZING outside today. I usually have a long sleeve shirt and a jacket and it's fine. Today, I should have put a sweater on underneath my jacket. I did pull out my gloves, which came in very handy.

I walked in to the apartment to find Jaden changed into his jammies with a big grin on his face. He saw my bag of toys for Gia and quickly picked the one that he wanted to give her. Cool, Jaden! Devin can give her the other one and Dad and I will give her the "educational" toy. Jaden asked me to close my eyes as he led me to our room. Once again, he had set everything up for the evening. He even had pulled out his breathing treatment and laid out all the oral medications on the coffee table. THANK YOU, Jaden! You are such a big helper.

Since I didn't start his IV Gancyclovir until late (and Jaden had already taken care of setting up for the evening routine for me), we had some time before Jaden could be unhooked. He asked if I could play XBOX with him and of course I couldn't refuse. I told him one game and then it was bedtime. It was actually a great game--I think I'm getting the hang of playing now (don't tell Jaden). Once the game ended, I got him ready for bed and we snuggled for a little bit.

I was watching his oxygen and it was at 95%--a great start. However, he quickly desatted to 87% within the first 15 minutes after falling asleep. I had to reposition him several times, with not much improvement in his sats. He seemed to be doing well for a while, but then started to desat periodically. Even at 1:30am, he was fluctuating between 88% and 93%. At this point, I figured he was over the hump for the most part and even if he did desat, it would be for a few seconds. So, I turned in for the night.

Day +154: Planning My Escape

Another boring day in Durham. I was completely exhausted after being up most of the night tracking Jaden's oxygen. He desatted so often, I was constantly up moving him around. He would go to the mid-nineties but desat right back to 87%, sometimes even as low as 85%. But, for the most part, it didn't last very long. This happened for nearly an hour and a half before his oxygen level settled down. He also got up a few times to use the bathroom, but once he got there nothing happened. He just pulled his pants up and stumbled back into bed. Thanks for the wake-up call, buddy!

Given the restlessness of last night, I was surprised when Jaden was up at 8am. I could not function, so I just lay in bed and pretended to sleep. Maybe if I lay very still and hold my breath, I can squeeze in an extra half hour of quiet time (well, as quiet as it can be with Ms. Gia babbling at the top of her lungs in the other room). I couldn't believe I was actually hiding out from my kids!

Jaden kept coming in to check on me and see if I was awake and I could hear Gia saying "Mum? Mum?"...okay, guys, I'm up. Let's get started with the day. Usual routine of morning breathing treatment, meds, etc.

The day was pretty void of any excitement. I was just having a major downer day. I think it was exhaustion coupled with my extreme homesickness. I was just making myself miserable. I wanted to run away and not be responsible for anyone or anything (I know, it's becoming an all too familiar feeling!). It was also the constant noise level in the apartment. Being such a small space, there was not really a corner I could hide out in that was quiet. Jaden had his ESPN or video games blaring all day, mom had her kirtan going on the laptop, Gia was running around getting into everything.....CALGON, take me away! (okay, I'm really dating myself with that one!).

I wanted to just be in a quiet place with a hot cup of coffee (or better yet a good glass of wine) and a magazine (because I don't have the patience or attention span to get through a book right now). I wanted to be able to hear myself think, to have a moment of peace...

I just threw myself into my morning tasks and tried to get it out of my mind. Before I knew it, mom had retreated to her space to catch up on some sleep and I had both kids. Jaden kept saying "play with me, mom", which meant another torturous round of XBOX basketball and Gia was crawling under the table, chewing on shoes, grabbing at the video game cables. She has also recently discovered that she can stick her finger pretty far up her nose. So, whenever I look over and she's not into any real trouble, she's sitting there with her index finger completely inserted in her nostril. GIA! She just smiles that adorable smile and moves on to the next thing, like chewing on the remote control. I'll have to get a picture of it and post it. It will be one more thing for her to be furious with me about when she's a teenager!

Anyway, craziness. Somewhere in there I squeezed in some lunch and tried to get Jaden to eat, but of course he wasn't hungry. So, I made him drink a bottle of Gatorade to at least keep hydrated. Soon Lynn came for Jaden's physical therapy session. It was also just about time to feed Gia again and put her down for her afternoon nap. I snuck into mom's room to feed Gia, trying not to wake her. She did lift her head up and look at me, but I told her to go back to bed since Gia was going to nap for a while anyway.

With Gia settled, I told Lynn I was going downstairs to get a quick cup of coffee. Maybe I can make a break for it? Do you think anyone will notice if I don't come back for a few hours? There are 2 semi-responsible adults there with the kids, so technically they're not alone. So what if one is out cold and the other is on the clock? The thought did cross my mind....but, I did what a responsible mother of three should and promptly went back upstairs with my caffeine fix. Lynn was wrapping up the session and I signed her little sheet of paper showing that she had indeed come to work with Jaden.

Of course as soon as she left Jaden began the "play with me" chant. Jaden, mom needs some time for myself while I drink my coffee. I asked him what he wanted for snack and he said chips. Fine, at this point I just want you to eat. I got Jaden his bowl of Tostitos with a little more Gatorade and headed to my room. Jaden wanted me to sit with him, but I told him I wanted to enjoy my coffee in peace, without all the noise. Well, let's just say in peace...of mind, that is...since the room has no door and the walls don't go up to the ceiling, I'm only technically in the "other" room. Like I said, there is no peace and quiet in this space to speak of.

I decided I was going to get online and finish my Christmas shopping. I hadn't bought anything for Gia and I had to get one more thing for each of the boys (from "Santa"). Then I had a brilliant idea. Why don't I wait until Gia gets up and then take her to Toys R Us with me? She'll get some stimulation and I can pick out her toys. She's too little to know what she's getting (or probably to care) at this point anyway, so even if I have all her presents right there in the cart, she'll still be surprised on Christmas morning! I was excited. Oooh..here's an opportunity for some "me" time!

Not long after, mom walked out with Gia in her arms. She's up already? I asked. She just slept for a little over an hour, about half her normal nap time. Mom said Gia was sitting up in her crib babbling, so she figured she was done with her nap. No worries, I'll just put her down earlier tonight. Famous last words...

I was getting ready to head out and then decided to leave Gia at home. It looked like it was going to rain outside and I really just wanted to be by myself. I looked at the clock and it was already 5:30pm. Then I thought about the evening routine which was fast approaching. IV meds, oral meds, breathing, baths, dinner...could I even get away right now?

Jaden asked me why I had my sweatshirt on. Jaden, remember I told you I have to do Gia's Christmas shopping. "But I thought we were going to see lights tonight?" he whined. Good point. I had mentioned that tonight would be a good night to go check out the Celebration of Lights in Raleigh. I wanted to avoid the weekend rush. Too bad my kid has a great memory!

Jaden, we can do it tonight, but I was hoping to get some shopping out of the way. Also, what would you like for dinner? Spaghetti...Okay, I need to run to the grocery store for a few things, so Monday might be a better day for lights. "FINE!" Jaden huffed as he turned away with a scowl. Oh, I'm so NOT in the mood for this right now!!! Jaden, we can go tonight if you really want to. Let me just get dinner going so you can eat before we go. It's a 30-45 minute drive, so I want to make sure you kids are fed before we get in the car. "Thirty to forty-five minutes?" Nani chimed in from the sofa "Monday would probably be better--no traffic". MOM! There will be traffic during the evening hours regardless, so it's a mute point. Let's see what Jaden wants to do...Jaden once again looked angrily away and said "Let's go Monday!".

Okay, I started to leave, but then thought I better make dinner for Jaden before I go. It will probably take a few hours to do my thing and I don't want to come home to chaos again. I was lucky that I had everything I needed at home, so I started on his meal. It was nearly 6pm and I think the realization that I wasn't going to be able to get away finally sunk in. I was not a happy camper! But, at least I'll be running on time for the evening routine.

I got Jaden's dinner ready and took it over to him. I thought this would be a good time to take a shower before getting Gia ready for bed. Just as I was walking into the bedroom, I got a few calls from Guri, my cousin Ravi and Sabrina. By the time I finished talking to everyone, it was getting late. Mom motioned that Jaden hadn't eaten anything and I was LIVID.

I went outside to find Jaden still playing video games. THAT'S IT!!! Turn it off and eat dinner NOW! "I'm not that...." before he could finish his sentence I interjected "Oh no, mister, you need to get something in your tummy!". I picked up the bowl of spaghetti, reheated it for him, and spoon fed him myself. He ate about half, which is more than he's done for a while now, so I let it be. I asked if he wanted any dessert and he said later.

I finally took my shower, then bathed Gia. In between, I started Jaden's IV meds and breathing treatments. Once Gia was put down, I took a deep breath and headed out to get Jaden going. To my surprise, my little munchkin was already in his night suit doing his homework on the coffee table. WOW, Jaden! You got yourself ready for bed AND you're doing homework? Thank you! Jaden smiled and pointed over towards the oxygen concentrator. It was all set up for the evening. He then led me over to his room, where he had everything neatly laid out on his bed (pulse ox probe, coflex, etc). He had also taken out all his brushing supplies and laid out everything I needed to get ready for bed as well, including my glasses, contact stuff, toothpaste, floss (yes, I actually floss-remember, I'm married to a dentist!).

Jaden! What a big boy you are! Thank you for helping mommy out with our night time routine! Jaden was all smiles. "I did it all while you were putting Gia to sleep!" he roared proudly. I knew we were getting late for bed. That's awesome, Jaden! Thank you for thinking about me and getting things ready ahead of time. I'm so proud of you! I gave him a big hug and kiss. As I brushed his teeth, Jaden announced "My goal for tomorrow is to be a better listener!" That's a fabulous goal, Jaden!

I snuggled with him for a while as I kept one eye on the pulse oximeter. I then told him I needed to get online and try to get some shopping done so I could get to bed at a reasonable time (Reasonable being a relative term at this point). I gave him a good night kiss and he settled into his bed. I then went over to mine to begin blogging while I recorded his oxygen readings, as I do every night.

Ahh, finally some quiet time. Wait...what's that noise? Is that..?? Oh my GOD! Mom is chanting to her kirtan. She must have her headphones on because she is singing at the top of her lungs! Oh boy, I think you should keep your day job, sister! I guess that afternoon siesta worked wonders for her!

Back to the oxygen watch. Although Jaden started at 95%, he desatted fairly quickly within the first half hour. I thought I was in for another long night, but after repositioning him twice, his oxygen leveled off at 89% and then started increasing from there. Phew! I don't think I have the energy to have another night like last night. Thank God we only have one more week until Guri and the troops arrive in town. I'm looking forward to seeing everyone and getting a little more help with the kids. With Guri's mom and Sonia both here, maybe Guri and I can even squeeze in date night!

Day +153: Secret Mission

Blown away by the wind!

Taking over Gia's stroller!

Mr. Bear as Darth Vader

Hanging his Christmas Ornament

First off, let me start by thanking you for all your emails and words of support. I didn't realize how far reaching this blog is. It's being followed not only by family and friends, but CGD families across the country, co-workers, friends-of-friends, our nurses at Duke and even some of our patients. I'm glad to hear that reading about our days here in Durham is part of so many of your morning routines! I feel so uplifted by your kind words and it really does feel like I have extended family that is cheering me and Jaden on. We will make it through this. We will get home to San Ramon soon with Jaden as healthy as can be. Keep your prayers going, they are working!

So, on to our day. Pretty tired right now so can't recall all the details of what transpired. Most of it was uneventful, with school, meds, and the usual drill. I know many of you are curious as to the outcome of the Solumedrol dosing yesterday. Well, I didn't really see a big difference in Jaden's appetite. He ate half a banana for breakfast, one fish stick for lunch, and maybe a few Tostitos in the afternoon. He did do a bit better for dinner since he had his favorite noodles from P.F. Changs. He even topped it off with a few bites of Hagen Daz Chocolate Ice Cream. Of course he said that his tummy hurt afterwards.

I had emailed Dr. Prasad with this information and asked whether he wanted to increase the hydrocortisone per Dr. Page's comments yesterday. Maybe his adrenal system just needed a bigger boost. I'm sure it's slow to function after all the years on steroids. Dr. Tewari called this evening to check in on Jaden. I gave her the download as well. She said she had spoken with Dr. Prasad and since Jaden did not have any other symptoms and Augmentin was still clouding the picture, we would basically keep a watch on things until Friday. Dr. Prasad could then examine him and determine next steps. They may even stop Augmentin on Friday and see how things go. Dr. Tewari did say to ensure Jaden is drinking and peeing sufficiently so he doesn't get dehydrated. I'm supposed to keep a close eye on his liquid intake (and output). I think today was a better day for Jaden as far as fluids go. He did pretty well with his water.

The highlight today was our top secret sneak to the Shops at Southpoint, with Jaden and the whole clan in tow. Yes, I did break the rules and take Jaden to the mall. Sshhhh! Those of you that are Duke staff, you know nothing about this and if you bring this up with our primary doctor, I will deny it vehemently!

All of our morale had been so low lately. Jaden was just itching to go somewhere. Mom was exhausted and burned out. Gia is always ready to hit the streets--she has her "Miss America wave" perfected and all you need to say is "Gia, bye-bye?" for her to start waving bye to everybody!

It rained this morning but was clear by mid-morning. It was a great day to get out since Jaden didn't have clinic or physical therapy. So, I bundled up the troops and piled them into the van. This in itself was a daunting task. I'm talking diaper bags, bottles, baby food, stroller, Jaden's snacks (since I will not let him eat at the mall), water, jackets....you get the gist. I had a few errands to run but mostly I wanted Jaden to see the mall all decorated for Christmas and feel the warm fuzzies I always do when I see the lights and hear the Christmas music in the stores.

We headed to Old Navy first in search of a winter jacket for Gia. Since Jaden LOVES to shop, he started drifting towards his own clothes. I had to keep reminding him not to touch anything. I don't know who's coughed, sneezed, or otherwise slobbered on any of the items here. Luckily, I had Jaden wear his heavy-duty GREEN surgical mask. He hates it because he says it's so tight he can't breathe. That's the point--keep all the germs out!

Jaden found a t-shirt he liked and some pajamas and would have kept going had I not distracted him and hurried him out of the store. He also was getting tired and kept asking to sit in Gia's stroller. I really wanted him to walk, so I kept telling him "just a few more minutes". We finished fairly quickly and I took the kids to the car while mom made the purchases.

Next stop--the mall itself. I got everyone unloaded and we walked in. The lights were glistening and the music was blaring. I showed Jaden the store that had the Duke ornament in it and he decided on the snowman's head with the Duke basketball which read "Duke Blue Devils". I was hoping he'd pick that one!

Jaden kept complaining that he couldn't walk anymore and needed as stroller. I kept putting him off teling him that there were some strollers we could rent somewhere in the mall, but I couldn't remember where. This was partially true, until I realized that I had seen them at Crabtree Mall. I kept this under wraps to prevent a huge meltdown.

It was amazing because Jaden complained and seemed completely worn out until he saw something of interest to him. Then he would perk up and even walk faster over to it, forgetting all about the fact that he "couldn't walk" and really needed the stroller. For example, Jaden saw a poster with some stuffed bears dressed as Clone troopers and Darth Vader outside of the Build A Bear store. We took a closer look and he just HAD TO HAVE the Darth Vader outfit for his bear. It was reasonable, so of course we got it.

We walked maybe half of the mall, which was pretty good for Jaden. We even went upstairs and walked half of it up there. We had split up from Mom and Gia because Jaden needed to stop and sit down so often. I wanted to give mom some time to wander, so she took Gia in the stroller and we met up later.

Before long, Jaden was begging to use Gia's stroller. I found mom coming out of a store and waved her our way. Mom picked up Gia and Jaden jumped into his new ride. I don't think this stroller is designed for BIG kids like Jaden! It was so hard to turn and I was afraid Jaden's weight would break it. I just bought this stroller Jaden, let's be very careful.

I showed the clan the lights outside in the fountain, we took some pictures, and then headed home. Of course since there was a P.F. Chang's right around the corner, I had to pick some lo mein up for Jaden. Gia fell asleep in the car and Jaden dozed for a little bit as well. At least there was some quiet time.

Came back to the apartment and started the night time routine. It was also Wednesday, which meant the Spin class was starting downstairs in a few minutes. I debated about it in my mind since I really wanted to try it out, but ultimately there was too much going on right now I couldn't break away.

I got Jaden's noodles and then fed Gia. I then hooked up Jaden for his IV Gancyclovir and started his breathing while I gave Gia a bath. She was tired and fussy and I had a hard time putting her to bed. She cried and cried. I finally went back in to the room to comfort her and found out she had a dirty diaper. How many times can a little girl poop during the course of a day? Gia finally fell asleep.

Jaden was outside waiting for me to play XBOX with him again. By the time I got Gia settled it was well past 9pm and I just didn't have the energy. Jaden took the controllers and stormed over to the cabinet. NOW YOU OWE ME 18 GAMES!!! Oh boy, one game was long enough on the XBOX. I was in real trouble now.

I gave Jaden his bath and got him in bed. However, he was very congested and "snotty", the real snot--not just Jaden being obnoxious! He kept sitting up saying his throat felt funny. I actually thought he was going to throw up. Instead, he kept moving around and tossing and turning. Meanwhile, his oxygen level was going crazy. It would go as high as 97%, only to desat seconds later. This went on for quite some time. I don't know how many times I jumped out of bed to reposition him tonight. He would temporarily go up to 95% or higher, but then just desat again. We did this dance until well past 1am. Just when I thought his numbers were stabilizing, he would desat (although for only a second or two) again.

It was nearly 1am and he was still only at 89%. It wouldn't take much from here to have him drop below the norm. I was on edge the whole time. I also knew I HAD to get some sleep. There was another day starting not to far from now and I had to be in good shape to deal with it all. So, I decided to call it a night. The monitor would beep if Jaden really needed to be on oxygen and I was confident that this would not be the case. We'll see what surprises tonight holds...

Day +152: I'm Worried Again

Awoke to my phone ringing this morning. I let it roll to voicemail and looked over at the clock. It was 9:30am. I glanced over to Jaden's bed and he was still sleeping. The bath must have done the trick last night!

I slowly dragged my aching muscles out of bed and got ready to draw labs. I could hear Gia babbling in the other room and went to check on her. Mom said she did well last night, waking up once briefly but then sleeping until 6:45am. Either the mall jaunts are working or she was truly teething during the past few weeks. Regardless, hopefully this is the new norm for her.

Pretty soon Jaden walked over and crawled into mom's bed. He still looked tired. Again, my mind drifted to him not eating enough to sustain himself. I drew his labs and started his breathing, both of which we were late for this morning. I didn't drop off labs until 10:30am, so I had to go to the 4th floor clinic instead of the easier drop at Duke North Pavilion.

I got Jaden to eat about half an apple, but he complained about his throat the whole time. I was hoping he wouldn't throw it up again. Luckily, he seemed okay. He got through the few slices of apple but hardly touched his milk.

Dr. Tewari called from clinic and said Jaden needed both platelets and G-CSF. I called back to find out a good time to come to clinic and was told 2pm or after. Okay, that gives me a good hour to get ready. I tried to get Jaden to eat lunch before we left, but he wasn't interested. I packed his turkey sandwich anyway, hoping he'd eat while he played his video games in clinic.

As we were leaving, Jaden kept telling me he couldn't walk and needed a wheelchair. I told him to get the wheelchair out of his head. He's totally capable of walking and we can take breaks as needed. Guri had reintroduced the wheelchair to Jaden when they had to walk home from clinic last time and now Jaden asks for it constantly. I'm going to return it to the hospital--out of sight, out of mind.

We made it to clinic by 2:15 or so as Jaden took his time walking from the car to CHC. Marshall was waiting for us and as she greeted us, Jaden turned his head into my arm. She asked if he was acting shy but he was just tired from the walk. He was closing his eyes and breathing deeply. Marshall was very sweet and told Jaden she would walk with him to the Fish Tank room as we waited.

It was an hour or so before we were in a room at the Day Hospital. Marshall continued the lesson she had started in the Fish Tank room with Jaden. I was looking around waiting for a nurse so we could get started. Since both infusions were short, I was hoping to do things in parallel and get out of here quickly. I don't know why I'm in such a hurry, it's not like we have anything going on back at the apartment. I think it's just the thought of being confined to a room for several hours at a time. Maybe it brings back memories of 5200. I don't know. I just want to get in and out.

Dr. Tewari found us in Room A and we started to talk about Jaden and how he was doing. I mentioned that he was still not hungry much of the time and ate very little over the course of the day. She asked if had other symptoms like nausea and vomiting. I did tell her about Jaden's upchuck incident yesterday but also let her know I felt it was attributed to the sinus drainage. It didn't reoccur. She asked if he was drinking well. Not as much as before, but he is drinking.

Dr. Tewari showed me his labs from today:

HGB: 12.6

PLT: 22 (well below his 50 threshold, although most kids are at 20)

WBC: 3.1 (5 is his threshold for receiving a boost via G-CSF)

She also pointed out that his potassium was still low, probably because he wasn't eating. Last time she had encouraged Jaden to eat a banana or potato chips or even french fries. Jaden wasn't interested in any of it. Today, she wanted to give him a few days of oral potassium tablets just to get him back within normal range. Once we spoke further about his fluid intake, Dr. Tewari felt it might not be a bad idea to give him some IV fluids and put the potassium in there. She suggested a few hours while we were in clinic or overnight at home. That was a no brainer--we'll do it here while he's awake. I'm not much of a fan of liquid infusions at night. We make enough trips to the bathroom as it is. Dr. Tewari said she would run it by Dr. Prasad to get his view on it all.

She returned shortly after and told me she ran into Dr. Kurtzberg and Dr. Page and they all discussed Jaden's case. Given that he was not eating over an extended period of time (two weeks at this point), they thought he might have GVHD of the gut. WHAT??? Dr. Page walked by and Dr. Tewari waved her in. Both proceeded to tell me that they wanted to give Jaden a high dose (10mg) of Solumedrol today to test whether his appetite would improve. If it did, it would solidify that Jaden indeed had GVHD in his upper gut (stomach and esophagus). WHOA! Solumedrol? Why Solumedrol? We just weaned him completely off steroids last Friday! I wasn't convinced of this strategy. There were far too many variables at this point. Jaden was still on Augmentin, his sinuses were draining, and I was told he may be potentially dehydrated. All of those could affect his appetite. He was going to receive several hours of IV fluids, so if he is dehydrated, that might solve the issue and he may be hungrier tomorrow. Shouldn't we wait until he was off Augmentin? If he still wasn't eating at least we could eliminate one factor at that time.

Dr. Page felt that if this was GVHD, it was better to act sooner than later. It's easier to manage GVHD if we start treatment at the first sign than let it fester for another few days. She clarified that since Jaden was off Cyclosporine for just over a month now and he was completely off steroids, it was prime time for GVHD to surface. It can present itself as nausea, vomiting, or just loss of appetite. Since Jaden had the appetite issues for several weeks now, Dr. Page felt it could be more than the Augmentin. This drug may upset the tummy, but is generally tolerated well. There are worse drugs out there for tummy problems. Also, if Augmentin was the issue, it's really more prevalent in the first few days and then tapers off. Jaden still wasn't hungry this far into treatment with the drug. Augmentin hunger issues also are the worst in the morning and they get better by afternoon. By evening, the child is eating pretty well. Okay, this wasn't the case with Jaden either. He wasn't much of a breakfast eater even pre-transplant, but now it took everything he had to finish half an apple in the morning. I thought back to last night. He barely ate dinner either.

So, let's assume it's GVHD. How bad is it and what will we need to do? Dr. Tewari said in Jaden's scenario, it would be a mild case. Dr. Page interjected that the solution was to put him back on Solumedrol to manage the GVHD. The most obvious thing in my mind was FOR HOW LONG? Dr. Page said that the low dose would be given over several months and then they would wean again.

Several MONTHS? The news hit me like a ton of bricks. I was completely in shock and devastated. Dr. Tewari must have read my face because she quickly added that I shouldn't be worried, it was probably a mild case. That's not my concern. Jaden had been on steroids for years and was finally taken off of them, we thought successfully. You mean MONTHS...Dr. Tewari clarified. No, I mean YEARS. He was on Prednisone for YEARS pre-transplant to keep his colitis under control. We were never able to wean him completely off the steroids because he would always relapse. So, up until transplant, he was on a low maintenance dose (5mg every other day). So, this was an EMOTIONAL victory...Dr. Page added. Just hearing those words made me choke up. I thought I would burst out in tears right there in the room. I so didn't want to be an emotional basket case right now in front of the doctors. But my mind kept going back to GVHD...steroids...months....I felt like we were making such great strides in Jaden's recovery and now this roadblock again. Every time there's progress, there's setbacks. Ultimately, this made me think we'd be in Durham that much longer. Would we be here MONTHS from now trying to resolve the GVHD issue? My mind started to spin out of control with crazy thoughts. I had to pull myself together and just stared at Jaden. "Well, I guess you have to do what's right", I mumbled.

With that both doctors left the room and Dr. Tewari went to get the orders placed for the IV fluids and the Solumedrol. Well, so much for a quick visit. I had also emailed Dr. Prasad earlier this morning about Gia's second H1N1 dose. The flu clinic was finished and the nurse had told me to work through Dr. Prasad to get it administered in the 4th floor clinic. Dr. Tewari had said the dose was available in the pharmacy and the nurses could administer it here.

I called home to see if mom could bring Gia over, but Ms. G was still asleep. I asked mom to call me when she woke up and to get started after Gia was fed. I didn't hear anything for a while and Nurse Natalie came in to tell me that the pharmacy would be closing soon and they had to administer it by 4:30pm or we could do it another day. I called home and Gia was STILL sleeping. That's one long nap she's taking! I told mom not to wake her up but if she did wake up soon and they could get here by in time, it would be great. In the meantime, Dr. Tewari came in and said she would ask the pharamacy to send the dose up for one of the nurses to administer up here in clinic.

Mom called just about 4pm and said Gia had just woken up (three hours for her nap!). She was going to feed her, change her, and be on their way. I told her to bundle the baby up because it was very cold outside.

They finally arrived at CHC and I met them downstairs to show them the way up. Mom said it had started to rain on their walk over and she got a little wet. Gia was covered by the stroller canopy. I felt bad for having them walk over in the cold, near-dark, evening, but I had no choice. I couldn't leave Jaden alone and be off Duke premises. I would have had to stop his IV infusions and go pick up mom and Gia and then restart them when we got back to the room.

I showed them upstairs and Gia got her final dose of H1N1. As usual, she was all smiles and cried only for a brief second after the injection and then went back to playing. I just held her and comforted her. Okay, baby, no more shots until your 1 year check-up. We're all vaccinated now. All safe for Jaden.

Since there was about an hour left on Jaden's IV fluids, I asked Mom to just hang out and we could all go back together. It was still raining and dark outside and I didn't want them to go alone. I also wasn't comfortable having mom drive with Gia unless it was absolutely necessary.

We finished up and headed back to the apartment. Mom felt like eating out, but was sick of Chipotle. I offered to pick up Dominoes for her and Jaden. I dropped everyone off at home, got things settled and put away, fed Gia and then headed out to get the pizza. I was still really depressed about the news in clinic this evening. A part of me really wished Jaden WOULDN'T eat much tomorrow, so I could prove there was no big change with steroids. I don't know if I can take another set back at this point. I'm so looking forward to going home and having all the kids settled in their rooms. I want to sleep in my own bed and get Gia used to her room so she can sleep without interruptions. I want to cook in my kitchen with my own stuff. I just want my life back to the way it was before we started this journey.

I had spoken with Guri briefly when I heard the GVHD news and he had to once again remind me that Jaden had just undergone a transplant. This was not some minor cold we had come all the way cross country for. So, there were going to be bumps in the road. We needed to ride them out. He was right, and I knew it. However, living on this roller coaster day in and day out can really wear you down.

I got home with dinner and when I opened the pizza box, I saw there was only ONE kind of pizza. I had ordered half cheese and half veggie to suit both Jaden and mom's tastes. UGG! I called Dominoes and back I went to pick up the right pizza. Once home, I gave Jaden the first piece and of course he said the cheese wasn't melted on right (Mr. Anal Retentive strikes again!). I had to cut it into pieces which he ate with a fork!

I started Jaden's IV medications and then got Gia bathed and put her down. She woke up a few times before we all headed off to sleep. I thought it may have been gas since she didn't burp, so mom and I tried to get the bubble out but were not successful. I also checked her diaper, but that didn't seem to be the issue. I eventually just held her until she fell asleep then put her in her crib. I told mom that I had dosed her with Tylenol after the H1N1 shot and if Gia woke up constantly tonight, to continue the 4 hour dosing. Poor baby might just be hurting from the shot.

I gave Jaden his final breathing treatment for the night, gave him his oral meds, and played half a game of XBOX NBA basketball. It was 10pm and well past bedtime, even for me. Jaden had asked for the last of his brownies and I gave him his dessert while I got ready for bed. As I was finishing up, Jaden waddled in and said his tummy was too full. He didn't finish the brownie or the milk. He said he needed to walk around. He was wincing and closing his eyes as he held his tummy. I had him use the bathroom, but there was not much of a "download".

He went to lay in bed and I got him hooked up to his pulse ox monitor. I watched his O2 for a while, but then was so tired, I decided to call it a night. I know tomorrow will be a better day. Hopefully, God will hear my prayers and there will be NO CHANGE in Jaden's appetite tomorrow. But even if he's ravenous all of a sudden, it is God's will. This is the path we were led to and the journey we must be on. There will be hills and valleys, but we need to stay steady throughout. This is something that has always been difficult for me. Staying emotionally unaffected is not my strong suit. Maybe that is my learning through all of this--to be even-keeled when it comes to my emotions, to be thick-skinned, to be strong-ER!

Day +151: Success and Challenges

I actually woke up feeling refreshed this morning, which hasn't happened in a while. I think I went to bed by 12:30 last night because I just couldn't keep my eyes open. Luckily, Jaden's O2 stayed stable after that point. I didn't hear Gia, I didn't hear anything other than Jaden calling me to use the restroom twice--and that even after several tries. All I heard was a "MOM!" so I guess he had been calling me a few times before I responded!

I heard Gia doing her sheep calls ("BAA BAA") and headed over to her room. At this point everything is BAA. I can't tell if she's saying ball, bahar (outside), or truly Baa (like in her book). Jaden was in there doing his breathing on the bed and Gia was playing on the floor.

Once he finished, I brought everyone out to the family room so I could keep an eye on things as I got started with the day. I wanted Jaden to eat, but again he refused saying he wasn't hungry. I finally convinced him to have half an apple. He ate most of it and then I gave him his meds before it got too late.

I had just finished calling Marshall, his teacher, to remind her that we now come at 11:30am except for on clinic days and she said she was on her way down with another student and would meet us in the driveway. I saw Jaden going towards his bathroom and I thought he was just spitting up some more mucus. When I got in there, he was throwing up whatever little apple he had eaten that morning. Oh boy...Jaden, are you okay? He kept vomiting...He then looked up with these tired eyes and whispered "I don't think I can do school today." Okay, Jaden, no problem. I'll call Marshall back and let her know you're not feeling well. I walked into the other room and called Marshall. She was very understanding and wished Jaden well. I told her we'd see her in clinic on Tuesday.

I had Jaden lay down in his bed and I sat next to him and got a few things done on my computer. After a minute or two he was back to himself. Jaden, if you're feeling good enough to talk about video games, you're good enough to go to school! Jaden just smiled. "Everything Trish and Marshall give me is too easy anyway." He's actually right. Marshall has a tough time keeping him interested and challenged. I let it slide today.

We went back over to the family room and I started to work on some office tasks on my computer while Jaden continued to ask "when are you going to play XBOX with me?". Jaden, I really need to get this done for work, so can you please do something for a little while. Why don't you go get your Kumon. We haven't done that in a while and there's lots to catch up on. Can you go organize your packets and then start where you left off? Jaden went to get his Kumon and got through sorting some of it but then got overwhelmed and decided to watch TV. Meanwhile, the packets were scattered all over the coffee table. I let it go thinking I'd have him pick things up in a minute...of course I got sidetracked and they were there all day.

My project today was to get Gia's 9 month photos once and for all. She had just woken up from her morning nap and mom was feeding her. I called the mall and they had an appointment available...okay, maybe the third time's the charm! Mom dressed her and I got her into the car and to the mall (actually in time for our appointment!). Of course even though there were only 2 people there, they weren't ready for us. We waited for at least 20 minutes before the photographer was available. I tried to tame Gia's fro but it was not happening today. Her crazy hair was everywhere and even with the headband on it seemed out of control. Okay, we're just going with it. I'm getting a picture today regardless of whether she smiles or her hair is working. I'll just explain to her that we tried 3 times and this was the best we got! At least there's a story behind the picture!

Gia was all smiles when she was in her stroller but as soon as I put her on the backdrop, she decided she didn't want to cooperate again. She crawled all over and did some great poses, but still no smile. I told the photographer exactly what I wanted--a single vertical shot of her either crawling or waving bye--the two milestones she's reached up to this point. I really thought we weren't going to get anything until one of the other staff members snuck around and did a peek a boo. And there it was--a SMILE, at last! We were in the studio for a while by the time the digital images were loaded and displayed. I love how they try and upsell you by putting all the pictures in frames, with collages and series, etc. Sorry, buddy, I ain't buying. I've been through this three times and only I know how many boxes of pictures I have. I'll take THAT one in an 8X10 (as part of my portrait club membership no less) and be on my way. I think I shocked the poor sales girl who had a whole pitch ready to go. She printed up the "zero sale" (I get a free 8X10 with every session) and I was outta there. I don't even try to pretend I'm interested in any other "packages" anymore. We did it! We actually got her 9-month picture! Phew, only one more shot at 1 year and her series is complete.

I decided to wander the mall a bit with Gia. It would get her stimulated and it was a really quiet day so it was actually enjoyable. This would have been a perfect day to bring Jaden because there weren't many people in the mall. Unfortunately, he had physical therapy just after we left and I knew he wouldn't be able to walk the mall and do the full hour he needed. I hope Wednesday is just as slow. I think he'll really enjoy the lights and the Christmas decorations. It's also a much-needed change for him to be out in the fresh air instead of cooped up in the apartment. Hopefully the weather will hold out and we can walk outside on the promenade as well.

By the time I got home, it was about 5:30pm. I saw the food I had left this afternoon for Jaden still on the table and he was doing his breathing. Nani was also introducing him to "crazy solitaire", a game she plays on her computer every night. They were having a good time and Jaden was commenting on how "challenging" it was.

Gia had fallen asleep on the way home and I had called mom when I was in the garage to say "keep it down" so she would get a little bit of her afternoon nap. I went downstairs to get some coffee and had a nice chat with my sister. Came up to find Jaden and mom still playing "cards" so I decided to try the Boot Camp fitness class offered by the apartment building tonight. I had been wanting to do it for some time now, but just couldn't get there partly because of my schedule and partly because I was intimidated. I remember trying it at our gym in San Ramon and walking out after the warm up. I asked Jaden and Mom if they would be okay if I went downstairs for an hour to work out. "Go to class. This is fun!" Jaden shouted. Okay, you guys have fun. Jaden, what do you want for dinner? He said spaghetti...great, I was headed out. I asked mom if she could make it for him and she said she would take care of it. Meanwhile Gia woke up and I brought her out to play. I reminded mom that she had to be fed by 7:30pm and headed downstairs.

Well, I did the class. Let's just say I'm not military material when it comes to fitness level. We started with a mini spin class (stationary bikes) and after doing sprints both sitting and standing, we moved to the floor. Emily had us doing squats, punches, lunges and every other movement to cause pain known to mankind--all while holding weights. Just as I thought she was stopping and moving on to another form of torture, she would add another set. My legs were wobbling but I pushed myself as hard as I could. Then we went to the "core" exercises. When I put my head back on the carpet, I felt flushed and nauseous. I swear I thought I was going to pass out or throw up. The girl had us then do push-ups, FULL push-ups (none of that halfway knee stuff) with both hands and then with one. ARE YOU TRYING TO KILL ME? Do you not know how long it's been since most of these muscles were used? Okay, you got me. I'm WEAK! I can't do it...everything hurts. Muscles and portions of my anatomy that I didn't even know I had were aching! Thankfully, it finally ended. I chatted with the instructor and another student for a few minutes before heading back upstairs. I was in a lot of pain, but it was a good pain. I may not be able to keep up right now with those Duke students that run marathons for fun and were half my age, but by God I was determined to get there (or at least somewhere close to there). I planned to come back and do this class as a "regular" while we were in Durham. If I can keep this up, the baby weight should just roll off, or so I thought.

I opened the door to find sheer chaos. Mom said she couldn't do it. Apparently Gia was having a screaming fit while mom was trying to make Jaden's dinner. She had to feed Gia, get dinner ready, feed Jaden, etc. She said Gia wouldn't stop crying and she even tried to give her milk and put her to bed. Mom looked totally flustered. Okay, let's figure out what's going on here.

I walked over to the couch to take my shoes off and Gia crawled over to me. One sniff and I knew she had a poopy diaper. Mom, did you check her diaper? Oh, I didn't think of that! As soon as she took Gia in the room and checked, she confirmed my suspicions. Gia came back clean and happy and went over to her books to start "reading". Problem #1 solved.

I then took the bowl from Mom and helped Jaden eat. "This doesn't take like yours. It's not good!" Jaden whined. Jaden, Nani went out of her way to make this and you're going to eat it. You haven't had anything all day and that's part of the problem. How about some french bread with it. Jaden nodded and I got him some bread. He ate most of it but refused to eat the spaghetti. I was livid at this point. There were plates of different foods in front of him, so I know mom had tried all afternoon to get him to eat. I was very concerned about him and knew part of the nausea and upset tummy was due to the fact that there was no food to absorb the heavy antibiotics and other meds he was on.

That's it, it was time for MOMMY'S MELTDOWN! I started to shout, I started to bang things, I was out of control with anger. You have to eat something, Jaden! What can I make for you that you will eat? I counted off his options. Nothing! I'm not hungry! Jaden shouted. Oh no, mister, I'm not playing this game with you! You have 2 seconds to decide or I get to pick. FINE! I'll have swirly noodles! This was the vegetable cork-screw pasta that I had bought for Jaden. He liked it and it was at least somewhat healthy for him. I put the pasta on and cleaned up the kitchen. It was already 9:30pm and nothing was done. Jaden hadn't eaten dinner, he needed a bath, and had to do his breathing and take his oral meds. I also had to bathe Gia so mom could put her down (something I normally enjoy doing, but didn't have the luxury of time for tonight).

I went in to gather his IV supplies and realized that I forgot to reorder the saline flushes...again. #$@*@&@^!*!!!!!! I thought I could get by since I was only 1 flush short tonight, but remembered that I had to draw labs for clinic tomorrow morning. So, I had to call Duke Home Infusion and hope someone could drop some off for me. Luckily, they were very understanding and told me they would have the rep drop a whole box by in the next hour or so. Fair enough, I'll just start his medication since it takes one hour to infuse anyway.

Since I was waiting for the rep, I couldn't do much else because he needed to call me to be let into the building. I still needed to take a shower after my workout before I bathed Gia, who thankfully was playing happily with her toys. I got the phone call from the rep and rushed downstairs to pick up the flushes.

When I came back up, I noticed that Jaden had barely touched his pasta, which made me even more angry since this was his umpteenth made-to-order meal of the day. You're done! I don't care if you don't eat! I'm done! I took his food away and put on his breathing mask to start his last treatment for the evening. I then bathed Gia and handed her off to mom while I showered quickly.

By now Jaden's Gancyclovir was beeping complete and I went out to unhook him. I gave him his oral meds and then helped mom get the bottles and formula ready for the night. I hadn't noticed that Jaden had quietly slipped into his room. When I came in, he was standing by the bed buck naked with the press n' seal and cloth tape beside him. It was his way of apologizing and trying to make amends. I walked over and covered his line before putting him in the shower.

While I bathed him, I told him why it was important to eat. I know the Augmentin is partly to blame, but you have to do your part to try and eat, Jaden. If you ask for something and one of us makes it, you need to eat it. It wasn't easy for Nani to take care of and feed the baby while she made your dinner. You should appreciate the effort and eat what she made, even if it's not like mom's. This was a rare instance where mom's food was actually better than Nani's!

It was near 11pm when Jaden got into bed. I lay down next to him to snuggle and apologized for shouting at him. I again explained that I worry about him and want to make sure that he's eating enough to sustain himself. After our little discussion, we hugged and were back to normal, which means Mr. Chatty asked a thousand questions about what was going on.

Jaden, every muscle in my body hurts and I'm really tired. It's late and you need to go to bed so I can eventually get to bed. I went back over to my bed and began to watch his pulse oximeter. He started at 94%, which wasn't all that strong considering that he would drop several percentages just when he fell asleep.

Sure enough his reading started to decline and 20 minutes later he was desatting. I don't panic as much anymore because I see the trend of quick desats followed by Jaden's body recovering on its own. I don't even bother to silence the alarm anymore since he usually goes back up fairly quickly (within seconds). He desatted several times tonight. I repositioned him each time and his oxygen level would increase to the mid-nineties, only to come right back down to 88%. It wasn't until almost midnight that things started to stabilize. By 1am, he was still fluctuating between 89% and the low nineties.

I was fading fast at this point. My shoulders and legs were killing me and I knew tomorrow morning the soreness would only get worse. So, I decided to take a chance and get ready for bed. Hopefully he'll hold his own again tonight. I'm praying he settles down enough to not realize he has to pee. I need another good stretch of sleep tonight!

Day +150: Where the lights at?

I'm going to try and keep this post short and sweet since it's already 11pm and I'm dead tired today. Jaden desatted of and on again last night, not enough to need oxygen (I think we've been clear of O2 for well over a month--since 10/31 to be exact!). What was bizarre was that he would sit straight up periodically, like he does when he needs to use the restroom. Jaden? Do you need to go to the bathroom? Jaden would just look at me with sleepy eyes as though he was in a fog and then flop down into bed in a different position. Okaayyy.....what is going on here? There were only 2 times he actually needed to use the restroom and I helped him with those. He would then also desat randomly at certain points (quite a while after his O2 stabilized and I went to bed). Consequently, it was 4am before I got any real sleep.

I heard Gia at 8am and went into the other room to help mom. I figured it had been another long night, but mom said she got up once at 3am (I remember hearing her since I was still awake). Mom also looked very tired and she said she was going to try and sleep in the other room. I think she ultimately ended up in the closet because Gia is not the soft-spoken little one you would imagine. Mom emerged an hour or so later and said she didn't sleep. She said at her age, she can't sleep on demand. She had to sleep when she feels the need or otherwise can't seem to fall asleep.

It was a mellow day otherwise. Jaden played his video games, but I made him exercise as well. He wasn't feeling all that great and kept saying his throat "hurt". I think it's more the irritation from the sinus' draining. We were supposed to bike around the entire hallway on our floor again, but he didn't look like he had much energy. He hasn't been eating well at all. Maybe a half apple at breakfast, a fishstick or 2 at lunch (if anything) and a small dinner. I'm blaming it on the Augmentin and Dr. Prasad didn't seem too concerned at clinic last Friday. I'm hoping we will truly be off it by next Monday, when we are supposed to do the sinus check. Instead of the bike, Jaden decided to do stairs in the morning and we ended up doing 3 flights (10 steps/flight)! I was so proud of him! We also went for a walk around the entire floor with Gia in tow. Jaden loves pushing her in the stroller!

Our lights saga continues. Everything flowed well up to the point we were planning to leave. Even Gia miraculously fell asleep and was up by 5:30pm (my goal was 6pm to be out of the house). We got to Cary and even to the neighborhoods we were supposed to be in , and not ONE had a decent light display. There was the random house here and there, but nothing to gape at. Even Jaden agreed with what I was thinking : I think the lights are much better in San Ramon! Again, a big disappointment for Jaden. He was also so angry with Gia because she was getting fussy. I don't think she likes the dark and certainly doesn't like being tied up in her carseat in the dark.

Nani wasn't helping matters by continuing to tell us to turn back because it was late/dark or we could do this another time or Gia needed to sleep. Jaden felt jipped and I don't blame him. He finally broke down and said angrily "Next time, let's leave Nani and Gia at home!". I gave him my phone and he didn't cheer up until he started playing the tunes as DJ Jay-D!

All the other places I found online or Sonia sent me links for are completely out of the way (think several hours). I am determined to show Jaden some lights. I will stalk every event calendar and newspaper that comes our way until I find someplace Chrismassy to take Jaden.

That was our day in a nutshell--boring and low-key. I shouldn't say "boring". I'll take hanging out at home over being in 5200 any day!

Day +149: BAH HUMBUG!

Nothing really exciting today. It was another cold rainy day in Durham. I wanted to get Gia's car seat checked before I drove her around, so I had asked the Durham EMS office for an appointment. The lady told me that there was a special car seat inspection clinic at the local Sam's Club this morning starting at 10am. Apparently 17 technicians would be there with the sole purpose of helping with car seat safety and checking the restraint systems.

Well, Gia and I arrived a few minutes before 10am, in the rain no less. I saw no signs and no technicians. I walked in and asked the customer service people about the clinic and they had no idea what I was talking about. Finally another lady came up to the counter and said she was a technician who was working at the clinic today, but didn't see anyone outside. THANK YOU! I know I'm not losing it just yet! After some digging around, the sales associate told us the clinic had been canceled due to the rain. You've got to be kidding me!

So, back home we went in the wobbly car seat. I did some research online and found a thread talking about the Morrisville Fire Dept and how helpful and knowledgeable the firefighters there were. I found out that you didn't need an appointment during certain hours, so that's where I decided to head. I also needed to get a certain item from Devin's Christmas list that was sold out online, so I figured Gia and I could head to Crabtree Mall and enjoy walking around there for a little while. I was hoping this would also give mom the break she needed from the baby to rest up.

I packed up Gia's things and we went to Morrisville. Not being from the area, I had no idea where this place was. Turns out it's by RDU. Luckily, we were headed that way for the mall anyway. As nice as the firefighter was (I love it when they call you "ma'am"), all he really did was apply some elbow grease to my already installed car seat. It was positioned correctly but just not tight enough. He just gave the straps a good yank and the seat was secure in place. A two minute job. Unfortunately Gia had been sleeping and I had to take her out of the car seat. She's such a good baby, didn't even cry. She didn't go back to sleep however, but just babbled instead all the way to the mall.

I was lucky I found parking right away, which I figured was a great sign that we were about to have a holiday blast at the mall. I envisioned strolling along listening to Christmas music while I browsed the stores casually for a few gifts. Our little excursion started off just like that. I walked around popping in and out of stores just perusing the wares. Gia was in heaven--she was facing forward and had a great view of all the shoppers, the storefronts, the kids. She was gyrating to the different music in each of the stores we walked through. We were both loving it. That was until we got to the store in which we actually had to BUY something in. After tracking down a sales clerk, maneuvering through the hoards of people, trying not to run over the kids playing in the aisles, I finally found what I needed. I wanted to pay and just get the heck out of there but of course there was the LINE to pay. I finally got up to the counter, forked over my dough, and headed out.

I remembered that I still needed to get Gia's stocking and her "Baby's First Christmas" ornament. The boys also needed their ornaments. Every year, I have them pick out an ornament for our tree that signifies something major for them that year. Well, as major as you can get in elementary school! I also pick one out for the family. It's sentimental to look back over the years and see all the places we've been and the "in-things" the boys picked for that year. We have one on our tree from 1986, the year Guri and I (pre-kids of course) went to the Carribean on vacation. We have another memorable one of Devin on a Woody and Buzz photo ornament. He LOVED Toy Story so much that year...you all get the gist.

In any case, I decided to stick it out and walk around to the card store and some specialty Christmas shops to see if I could find anything good. I was also looking for a Duke basketball or football ornament for Jaden and a Duke University Medical Center one for the family ornament on which I wanted to put Jaden's transplant date.

It should have been a quick trip through the mall to check for these items, but of course Crabtree is the most convoluted mall I've ever been to. It's almost like the aisles are all disconnected or islands onto themselves. You can't easily navigate from one end to the other. I had so many dead ends, I was ready to pull my hair out! By this time, Gia and I were both exhausted. The baby was such a trooper though, not a peep out of her.

I did eventually find a Hallmark store and picked up a really cute baby ornament with little white booties. I also found a cool "gold" saxophone for Devin--he started his instrument this year in school and really loves it! By now, our quick trip had turned into a several hour adventure. The walls were closing in and I felt suffocated. The Christmas music was getting on my nerves and the crowds seemed to well to a peak. Even Gia started to repeat the words "Mum, Mum!". I think it was her way of saying she'd had it too! I looked around and plotted our escape. Luckily we weren't too far from the exit...

Headed home and Jaden was playing video games (still)! He wanted to know if I found his Christmas presents. I told him I was just browsing and he got upset. "I know you're looking for my stuff! Don't try to trick me!" He said half jokingly. I had promised to take him to see lights and I wanted to hold up my end of the bargain.

I put Gia down for a nap, went down for a quick cup o' joe, and then began to play XBOX with Jaden (yes, not exactly my idea of quiet time, but I felt bad for Jaden). I told him as soon as the baby woke up, we would go.

Once Gia awoke, mom fed her and I got the troops into the car. I had the directions (if you can call some major freeways and a few street names "directions") in hand and was anxious to see what a North Carolina Christmas display was like. I had to first make a few pit stops for gas and , since I was told you had to go through the "hood" to get to some of these places and you don't want to run out of gas there, and Jaden's Burger King dinner.

I finally got on the road but we seemed to be going the wrong way. I was supposed to see signs for Cary and Apex, but I was headed towards Greensboro, which I think is the opposite way. We drove for a while and I couldn't find any of the freeways I was supposed to be on. Mom, of course, panicked and begged me to turn around because it was so "dark" and we didn't want to get lost by ourselves in the middle of the night. Er..it was 7pm and there were plenty of people on the freeway.

I told Jaden that I would do a better job researching exactly where we were headed and tomorrow we would leave earlier to go explore. I could tell he was really disappointed as he put his head down and looked out the window. He stayed pretty quiet all the way home.

Once we got back to the apartment, I got Gia settled and started Jaden's only IV medication. He was still upset and not talking. I sat down next to him and apologized for letting him down and promised we would go see lights tomorrow, even if it meant leaving nani and the baby at home!

I got Gia bathed and to bed and then watched a little SportsCenter with Jaden as I ate my dinner. There is nothing on in this apartment except ESPN, football games, basketball games, and video games (that represent these sports). I have gotten used to the constant banter of ESPN sportscasters, the background noise (if you can call a BLARING laptop "background") of mom's kirtan and sometimes even her singing along, Gia's babbling, the dishwasher, the washing machine and any other sound you can throw in. My quiet time begins around 11:30pm or midnight, when mom finally takes her headphones off, stops singing, and heads to bed and Jaden also drifts off to sleep. The only sound remaining is the occasional beeping of his pulse oximeter alarm as he desats for a second or two before working his way back up into the normal range.

Tonight was no different. The only exception was that I was experimenting with why Gia continued to get up at night. She was well fed now, so hunger should not be an issue. I know that room is incredibly cold and she hates sleeping with any covers on, so maybe she's just cold at night? I had already had the apartment maintenance person come look at the ventilation system. He closed off one vent in the main living space and said because Gia's room was the last on the "line", it took longest to heat. He said if it didn't work, to close the other vent in the family room as well, which would push all the air out to Gia's room. I decided to do this on my own. I have an engineering degree (although it has nothing to do with this subject matter), right? I can figure this out. I don't need no stinking maintenance guy!

I grabbed a kitchen chair and shut off the second vent and turned the heat up a little. Okay, that should do it. Bet you she'll be warm and cozy and sleep through the night! I was right to a certain extent. Gia hadn't woken up screaming yet, but in the meantime, the rest of us were STIFLING hot! Jaden was down to an undershirt and wanted his shorts to sleep in. No, Jaden, it might cool down at night. I had to put an ice pack on his head to get him to sleep. After a while, I decided I couldn't take it any more, so I turned the heat back down to the 70s and decided to leave the maintenance to the experts...it's not as easy as it looks after all!

Finally got Jaden to sleep and of course he was desatting left and right for a while. He finally settled down abut 1am, when his pulse ox was 90%-91%, although he was still desatting occasionally for a second or so. I could barely keep my eyes open too. I was debating on whether to finish my Christmas shopping...well, there's always tomorrow...