Day +8: Pump Up the Jam

Sorry about the corny title. I couldn't help myself, and now I have to pay for it with the awesome song getting stuck in my head...Gotta have a little, silly moment in my day, at least. (;

Last night was another rocky one. He would wake up screaming every 2.5 to 3.5 hours, where the nurse would have to give him some more morphine and every now and then I would have to rock him back to sleep. By the time it was time to get up in the morning, I was drained.

Upon hearing about Kal's pain during the night, his doctors agreed he would benefit greatly from a PCA (patient controlled analgesia) pump. It administers a much lower dose of morphine but at a continuous rate, rather than giving a higher dose every 2 hours. Essentially, it helps prevent the "high" of sudden relief of pain, and then the "crash" of immense pain once the dose wears off. Instead, it requires a lesser dose because it's keeping the pain continually at bay, thus needing less of a dose to help him feel better. There's a button I can push to release a little bit more morphine if I sense that Kal is still having pain beyond what's being covered by the continuous dose. It's kind of weird thinking I'm the one dosing my child with more morphine, if necessary. But, it's also good in a way because I can sense when he's starting to feel it more and I don't have to wait for the nurse to come in, set it up, get it signed off by another nurse, etc. like when he was just getting 2-hour doses, meanwhile screaming at me in pain.

Finally tuckered out after an eventful night and morning.

After a couple of hours to let the new dosing of his pump start to work in Kal, I found out what a wonderful blessing the PCA pump is. It has helped Kal not be so restless while sleeping, which helped me actually get a good nap in as well. After that, I was feeling so much better and energized!

Although he was very glassy-eyed today, it was such a relief to know Kal was finally much more comfortable. It was so sad to see him like that, just devoid of any emotion, unless it was pure rage and pain if he could cough, throw up, etc. There would be times where he would half-way wake up and then just make little whining sounds like "Ehhhh eeehhh ehhh." Oh, it just broke my heart. It was like everything going on in his body was almost too much for him to handle. He just looked sad and exhausted. But, like the nurse told me yesterday, "It's hard work for your body when you have no white blood cells."

It's like he wants to smile, but he forgot how to. (;

Helloooo... Anybody in there?

The doctors didn't have anything new to say, other than allowing the PCA pump to be set up. They reassured me again he was "right on schedule." It's kind of weird to hear that, in a way. I don't know exactly how to react to that, because what are you supposed to say? "Yay! My son is in the worst pain of his life, but he's supposed to be!" or "Oh, I'm so glad he's supposed to be feeling this way and experiencing this." Uhm, no. But really, when so much that could be going wrong isn't going wrong, that really is something to be happy about, even if the situation you are in is kinda crummy.

Kal continues to have issues with water retention. Now his hands, legs, ankles, and feet are swollen. He's my little Asian marshmallow. As sad as it looks, he's still so cute- I love him! (; Some good news: the diuretic they gave him again today seemed to help get a lot of fluid out. They'll have to continue to monitor his swelling, though, as precautionary measures.

Getting his fill of mommy snuggles (:

In addition, Kal has been having issues with itchy eyes and face. Whenever his hand are free, they're almost always rubbing his eyes. The nurses and doctors reassure me this is a common side affect to the morphine- that it releases histamines and causes itchiness. He's been prescribed some anti-itch medicine (via IV) to help with that.

He fell asleep while he was trying to rub his eyes.

There were a couple of moments where he sort of perked up today. Once was after sleeping for a long time (pretty much most of the morning and up until about 3 p.m.). I was able to sit him up (still holding onto his sides) for a little while and he watched a little toy that played music and flashes lights. I was also trying to play peek-a-boo with him, and sometimes he would sort of twitch a half smile at me. That was good enough for me! The other time he perked up a little was when Jonald came to visit and Jonald was able to hold him and rock him for a little bit. He was just watching me and looking at things around the room.
All in all, that PCA pump was heaven sent! It has made him feel a lot more comfortable. We will be watching for changes in his other symptoms, but expect things to still get worse for a little while longer. I just have to keep reminding myself that there WILL be an end to his pain one day, someday soon.

Day +7: The Blob

Kal was really restless last night. He would just wake up crying/screaming for a few minutes, then doze off again. This was happening throughout the whole night. Finally, around 5 a.m., the nurse decided he was so uncomfortable that he could use some morphine to help take the edge off and let him sleep a little more restfully.

Later in the morning, he was still super sleepy. He would have moments where he would wake up again and scream, cough, and/or puke mucous. Then, the next moment, he would drift off again into sleep. Getting some benadryl helped lull him back to sleep after that. Basically, the majority of our day was spent with this sort of cycle.

Around 11 a.m. or so, we decided he would benefit from some more morphine. P.S. Can I just say how weird it feels to request morphine for your child, especially your baby? I mean, that's really what all the other BMT patients end up being on for a little while, but I guess hearing of how strong it is and how people must be in excruciating pain to get it, it's just hard to know how much pain Kal must be in right now. Seriously, not only does he have mouth sores that are getting worse (and will continue to get worse for a little while), but he most likely has those sores all down his throat and in his GI tract. On top of that, he's not eating, yet still throwing up mucous and bile, which would definitely burn his throat coming back up as well. :( I've lost track of how many times he threw up today. I'm just too tired to count that now.

Today, he slept a lot...

... and slept some more. His favorite sleeping buddy is that elephant. I pushed it beside his pacifier to it would help keep it in while he slept...

...and we're still sleeping, here. This is his little room getup: connected to pulse oximeter, blood pressure machine, IV maintenance bag, and whatever syringe pumps that need to be running at the same time (anywhere from 0-3 medicines running in those, during certain times of the day.

He was just sort of a cute, but sad little blob today- either sleeping or laying there with a glazed over look. But, it was actually sort of a relief to see him like that because I knew we were doing our best to keep him comfortable in this painful process and situation. It was exhausting the day before to hear him cry so much and be in pain. All in all, I'm glad we have chosen to give him the morphine because I know the pain was much worse that it was even yesterday, and it will continue to worsen. He's going to need all the help he can get.

"Oooh, what's that? Your camera phone? Let's try and grab that to play with... Nevermind, it's not that cool.

Not feeling good here. Please get your phone out of my face.

He was so upset he fell asleep in my lap soon after his fit.

In addition, due to perhaps his medications, or pain, or other reasons, his blood pressure is a little elevated. They will be monitoring it to watch for any bad changes. Another thing that popped up today was his face had gotten puffy, especially around his eyes. Poor lil' bubby. This is probably just because he's on so many medicines that he has some water retention. They gave him a diuretic (medicine that makes you pee) to help flush out some of the extra fluid sitting around in him, and will keep a close eye on that. On the bright side, as pitiful as he looks, I think he looks even more cute because his puffy eyes make him look more like he has Asian eyes now. (;

Kal hasn't eaten anything- all day. When he wasn't sleeping or screaming, we tried a couple of times to feed him formula, but he wasn't interested. The doctors and dietician switched him to full strength TPN and lipids to make sure he's still getting adequate nutrition and amount of calories.

Jonald, Kayelee, and my mom came over to visit this afternoon/evening. When Kal saw Jonald, he perked up really quick and was kinda with it for a little bit, at least. Jonald even got him to smile, which was such a relief to see. It was just a sign to me that my sweet little boy is still in there, and I will see that side of him regularly again someday soon, but he's just not feeling so hot right now.

Tonight, the nurse gave him some more morphine. She also turned the oxygen funnel on low, just laying near his face on the bed, to help keep his oxygen levels from dipping down and up during the night and setting off the alarm. Hopefully this will help him have a more restful night's sleep tonight.

Day +6: Mouth Sores are the Devil

 
Oh goodness me. I hate mouth sores! Kal's mouth is starting to have a bunch or sores and it's causing him a lot of pain. It's so painful to the point that most of the time today, he didn't even want his pacifier- which, by the way, he's usually addicted to like crack, in case you didn't know.

Kal was extremely grumpy throughout the night last night. He kept waking up and crying and then falling back asleep. This morning was worse. And the thing is, his mouth sores aren't even in their worst stage yet. It's when the white outsides rub off and get straight up raw is when the real fun starts... Yeeesh. His counts pretty much jumped off a cliff last night. For example, his white blood cell count went from 1,700 to about 600 in a span of 24 hours. That's nothing to worry about. They were expecting his levels to bottom out soon, but bottoming out this fast (instead of having a more gradual decline in counts, which happens in some patients and others not) results in one day you're feeling pretty okay, and the next you're rolling in pain.

Luckily, Kal kept down about 4 oz. of formula. That's a wonderful thing that he still ate today, with his sores getting so much worse. Success! Finally, he was so worn out from being grumpy that he conked out in about 5 seconds once I swaddled him and started to rock him in the rocking chair.

After a little while, Kal woke up from his nap by choking on his own mucous. Yeah, let's just say that rude awakening didn't make him the happiest bird on the perch. Because Kal was feeling so yucky, we decided we should give him some oxycodone to help him out a little bit. He was too cranky laying in bed, so I spent a good while just sitting in the rocking chair with him. I gave him snuggles, played with him with some toys, and rocked him to help console him.  He didn't want to take any formula from me. He just kept fussing at me and making scary gagging faces.

Ooh, this toy is distracting... Me likey.

"I don't feel good. I just need a hug, Mommy."

My friend swung by for a visit and brought me some yummy lunch and dessert (P.S. It was cheesecake, in case you were wondering... I won't blame you if you are jealous while reading this, haha). She brought her ADORABLE baby who is a little less than 2 months younger than Kal. They're little buddies from the nursing lounge at church, and so when Kal realized his friend was there, Kal perked right up and was playing with him and they were trying to touch each others' faces and hold hand. It was so cute, and such a nice relief to see Kal being his happy self again for a small moment. And then, the oxycodone started to kick in. With that, his anti-nausea medicine, and some Benny (benadryl), it helped him to get a nice nap in afterward.

After that awesome nap, Kal seemed to be much happier. He was smiling at me again and playing well in his crib. Oh, it was such a relief!  He eventually even drank 4 oz. of formula again and kept most of it down. He then played in his crib, kicked out freely, and talked nonsense to me while I was trying to watch America's Got Talent. Silly boy. (: It was such a break from what we were going through this morning. Probably a tender mercy from God that I wouldn't go completely cray cray today.

Nom nom nom.

There's that smile I've been missing!

Thankfully, Kal fell asleep very quickly for bedtime. I think his little body was just worn out. I held him a little while longer before putting him in his crib, just to take in the moment, just to breathe in the smell of his soft, baby skin. I love this little guy.

Because Kal had woken up earlier from gagging on mucous, the nurse decided to put on the pulse oximeter (tracks pulse and oxygen levels) just to be safe, so we would know if he was having a hard time breathing during the night. Just a little bit ago, his oxygen levels kept dipping just slightly below what's normal and then going back up again, which kept setting off the pulse oximeter alarm. To help this, the nurse came in and turned on the oxygen on low and placed the funnel close to his face, just to ensure he was getting enough oxygen through the night. It's mostly just a precautionary measure, and so that darn alarm won't keep going off during the night.

All in all, today was pretty darn hard. Kal threw up 5 times today, but it wasn't as big in volume as it has been before. It was mostly yucky mucous coming up. I think the thick mucous kind of stops most of the liquidy formula to come up sometimes. The bad thing is we know it's still going to get much worse, and probably will do so very soon. The good thing is that it won't last forever and someday soon his cells will start to grow back, he will be engrafted, and then we'll be close to being on our way home. In times like these, it's all about keeping the right perspective in mind. It gets you through days like this.

Day +5: Keep Calm and (Please?!) Don't Puke

Today was all about taking things nice and slow. After blowing through so many outfits over the weekend, due to Kal's puking spree, the nurse and I just took our time to do everything today. Seriously, we would do his mouth care, then rest. We'd give him one medicine, then let him rest. Then we gave another medicine and rest again. Over and over. It seriously took us like 2 and a 1/2 hours to give him his morning medicines. It felt like the day was just dragging on. BUT, he didn't puke his medicines! It was so worth it in the end.

When the doctors did their rounds today, they didn't even bat an eye at how much he had thrown up over the weekend. As the doctors said, "Unfortunately, that's just what is to be expected for BMT patients..." Except they say that pretty much every morning when they come in Kal's room to chat... I guess if it's something unexpected for them, it's most likely something absolutely awful. I'll stick to Kal following the course "as to be expected," thank you very much.

The doctors suggested we try to only give 2 ounces of formula at a time, and then rest for a while, and try again, to try and keep him from throwing up so much. The first 2 ounces were a success, and so were the next 1 and a half ounces!

Couldn't help but snap a snoozing pic. Those long eyelashes, though! Ahhh!

After his nap, I tried to feed him again, and he was kind of pushing the bottle away. When I got the bottle to his mouth, he gagged, and I had a couple of seconds to react and get him to the disposable bed pad in time for him to throw up on that. Phew! It wasn't too much, only about an ounce that he threw up. Not too shabby...

After that and working with the Physical Therapist, I let his tummy rest for a couple of hours before attempting to feed him again. He was then able to take another 2 ounces and then take a nap.

After that nap, I tried feeding him, but he kept fussing and pushing the bottle away. Whenever I could get the bottle in his mouth, he would gag so hard it would make my heart skip a beat. Lemme tell ya, waiting to see if your kid will barf or not is one of the most suspenseful times as a mama. Hahaha! I gave up on trying to fight him to eat and just decided to let his tummy rest. I didn't want to upset him so much that he'd end up throwing up what he already had in his stomach.

Kayelee and my mom came to visit during dinner time today. It was great to see them. Kayelee showed off her fingernails that my mom had put fingernail polish on as well as a little baby doll my mom had bought for her today. We watched the big storm roll in the valley, and then went up to Kal's room and watched the rain outside the window. We played with bubbles in Kal's room after that, and Kayelee gave Kal a high-five. She did better with the goodbye this time, but probably because she knew Daddy would be there when she got home.

Crazy storm coming into the valley! Sweet picture, though, as it looks like a giant wall of rain was headed for us.

Kal was able to keep his nighttime medicines down, as well as 2 ounces of formula, despite giving us a few scares with gurgling and gagging in the process. Woohoo!

Don't mind the weird expression on his face. In the moment I snapped the picture, he was just mesmerized by all of his IV lines that were swinging as I rocked him in the rocking chair. LOL at his face, though! It looks like he's hypnotized. (;

So puke count for today: 1.

I'd say that's a pretty awesome SUCCESS! (:

Day +4: Swimmin' All Day

"God's answers to our prayers do not always come immediately- sometimes they do not appear to come at all- but God knows what is best for His children. Assuredly, one day we will see more clearly; and on that day we will recognize the goodness and generosity of heaven."

-President Dieter F. Uchtdorf, "God's Harvest," August 2014 Ensign

My husband and I were able to attend church today at the hospital again. Since it is the first Sunday of the month, it was a Fast & Testimony meeting. For those who don't know what this is, for the first Sunday of each month, members of The Church of Jesus Christ of Latter-day Saints fast (some do it for 24 hours, and some for 2 meals worth) for a specific reason that we are praying about. During church on that day is when members of the church are free to go up to the stand and share their testimony (basically their testament of faith and belief). Anyway, it was really good to hear from the people who got up and shared their testimonies today. I mean, we are all going through some sort of trial. The Spirit can be felt so strong at times because I feel as though angels are surrounding each person in that room to strengthen them through their trials. The room may not be full, but it feels full, if that makes sense.

There was a woman who came up to speak who I thought had an interesting point. There is the saying how God will not give you things you can not handle. She said she doesn't quite believe that is true. She feels that in some times, you're faced with a trial that is just too much and you can't handle. That's when Christ steps in to strengthen us. She said she feels that we may not be able to handle certain trials, but then God gives us the strength so we are able to handle them. Without God, we just couldn't do it, but with God, we become stronger and we are helped through the trial we are faced with. Being with what we have gone and are going through, I thought she had a pretty valid point, there.

Besides going to church today, what else did we do?  We went swimming! Haha yeahhhh, except not the kind of swimming that comes to mind at first. Bascially, Kal threw up 5 times today. Let's just say I'm sitting here in my 4th outfit of the day.

I feel so bad for his nurses, though, because they have to keep coming in and help me clean up everything. Even though Kal is already on an anti-nausea medicine, the nurse decided today that we should try to give him some Benny (Benadryl) every so often to help keep the nausea at bay. I'm still not sure whether he is throwing up so much because he is nauseous or whether he just gets that awful mucous stuck in the wrong place at the wrong time. He's still really happy most of the time when he isn't throwing up. He is still flirting with the nurses as much as ever. So, it doesn't look like he's nauseous or feeling sicky. We even tried a different kind of formula to see if that would make a difference or if it was bothering his tummy, but it didn't change anything.

Sportin' his mohawk after bathtime. He wasn't up for smiling...

4 pumps running for Kal at the same time this morning- TPN, lipids, Benny, and and anti-rejection medicine

This silly boy didn't want to smile for me or the camera today. :(

The last vomiting session Kal had, right before bed, made me feel so sad and sorry for him. (Warning: This might get a little TMI). After he threw up the initial stuff, he was dry heaving a few more times after that. I mean, if throwing up didn't already make you feel yucky, dry heaving makes everything feel worse. I tried to catch it with my hands, but to no avail. My shoes were then in a little lake on the floor.

Oh well. I still love you, sweet baby boy!

I tried to catch it- FAIL.

Day +3: Playing and Many Wardrobe Changes

This morning, I tried the bottle with straight formula again. This time, I was getting even more brave by trying 6 oz. of formula AND holding him in my arms in the rocking chair. I was worried he wouldn't take it from me if I was snuggled up to him because it might remind him of when he used to nurse. I was also worried that the 6 oz. would be too much and he would not want to finish it. Well, well, well, my dear family and friends, he finished it in about 10 minutes! He sucked that stuff down as if he'd been doing it his whole life! It was really sweet to be able to cuddle him while he was eating. I could finally feel that bond again that I had felt before when he would nurse well and be really satisfied eating. It was a heartwarming moment, for sure.

After that, the nurse brought in an Exersaucerfor Kal to play in. He was so excited and cute in it!

Okay, Mama. No pictures, already. Just let me play, okay?

Well this looks cool...

Ooooh! What's this?

After his nap, the next time to feed him comes around, but first, we needed to give him some more oral medicines. I tried giving it to him in small portions, but he ended up throwing them back up. We decided to wait a little bit to give them to him again. What stinks more than throwing up your meds is having to re-take the meds again right afterward. Yucky...

After that, he was happy as a clam, so I figured he would be good to have some more formula. The nurse was really sweet and suggested I take a break and go grab some lunch. She volunteered the Tech (like the nurses' assistant) to come in the room to feed him. Once I saw that Kal was eating well with the Tech holding him, I headed off to eat lunch. When I came back, I asked the Tech how he ate. She replied, "Well he pretty much threw up river on me, so..." I asked Kal, "What did you do to her? Did you throw up on her?!" Kal just beamed this big, naughty smile. Bahahaha. I still felt bad for that poor girl, though! She even had to put on one of those weird, fabric disposable shirts because Kal threw up on her normal scrubs. I kept apologizing, but she told me, "Oh, don't even feel bad. He's so cute!" Good thing her shift was almost over, at least.

Now, as you can imagine, I was nervous for his next feed, but he actually did really well and felt great after. Phew!

Spending time with his new, favorite toy- the elephant that hums lullabies. (:

He especially loves playing with the elephant's ears.

On the other hand, during his last feed of the night, he threw up alllllllll over- on himself, down my shirt, down my pants, on the chair, and on the floor. It was so much that the nurse had to come in and grab him, wash him, and give him a dressing change for his central line (they don't want it to get wet for risk of infection.) Luckily, the nurse was so sweet to let me go take a shower and clean up while she took care of Kal.

When I returned, Kal was getting a little tired and cranky. He hadn't had a very good nap earlier. I didn't want to risk feeding him more and just making him throw up again, so I just held him and give him cuddles to help him. I just felt bad for him that he had thrown up so much today. I was actually surprised how happy he is the rest of the time, despite it all. He did get upset while getting his mouth care today (to keep his mouth clean), which he usually does really well with. I noticed some spots on the roof of his mouth and asked the nurse about them, to which she checked and said they were the beginnings of mouth sores. Ah, darn it.

Then, as I was holding him, Kal sneezed, and I guess some more junk came up and got stuck in the back of his throat, because he threw up again. Not as much as the previous time, mind you, but enough to roll down my newly changed shirt and pants and onto the floor. Luckily, the nurse had called for a janitor to come mop up the mess from Kal's previous vomiting episode and she was on her way over. So, it was another wardrobe change again for both me and Kal. Oh, that little boy... Half of me feels bad for him, and the other half of me wonders if he almost likes to throw up because he gets more attention from his admiring nurses. (Hehe, just kidding about the second half! But, really, he flirts with them all the time, and he's a pretty smart little baby. I wish I could read his thoughts most of the time.)   (;

Third outfit for the day, due to puke-tasrophies. Look at his face, acting all innocent! Haha!

Unfortunately, all of these vomiting spells are part of the course Kal has to go on in this process. Although he already had his transplant, his levels (hemoglobin, white blood cells, platelets, etc.) are still going to continue to drop for a good while. That means vomiting, loss of appetite, worse mouth sores, etc. are still most likely ahead.

On a side note, I really don't think his vomiting recently is nausea related, though, because he is still super happy and feeling fine the rest of the time. Both the nurse and I think it's just more mucous building up in his throat and he chokes on it sometimes, especially while he's eating or taking his medicines. Throw up spells don't phase me so much, as I was used to him doing that a lot at home during his off-and-on ear infections. We can handle it! I'm still so grateful for how well he is doing otherwise.

 

And cue the mucic: "Don't stop... belieeeevin'. Hold on to that feeeeeeling!" Hehehe, I couldn't help it. (;

Day +2: Wowza!

Wowza, this day was interesting! (In mostly good ways!)

But first, here is a video from Wednesday that I thought you all might enjoy. It was when everyone piled into Kal's room and sang him, "Happy BMT Birthday" and then gave him gifts:

Now then, back to the update on Kal:

Morning started off pretty typical, other than Kal's doctors being concerned about the amount of calories he was getting per day. They said as much as they know how hard we've been trying to feed him a lot, he still isn't getting near the amount of calories he should be. They said they would first speak with the dietician first to see if she had any ideas to boost his calorie intake, such as making his formula more concentrated. They wondered if I had kept up with trying to offer Kal the bottle, and I informed them the moment the bottle touches his lips, he starts fighting me. In all reality, I thought that kid would never end up taking a bottle.

BUT, guess what?! He DID! Here's how it went down:
 

After returning from lunch, one of the doctors came in to speak to me. She told me that although the dietician could increase his daily calories, it still wouldn't be enough to have Kal at the point where he was receiving enough calories. She (kind of) gave me a choice between having an NG tube (feeding tube) placed back in Kal or to give him TPN instead, which is a gross concoction of carbs, proteins, and lipids (fat) that would go through his central line. I felt it would be best to just give him TPN instead of bothering him so much with a feeding tube again.

Well, apparently Kal must have taken that as a challenge. After the doctor left, I had the feeling I should just try to give him the bottle again, just to say that I keep trying. I also had a feeling I should try a certain bottle I had tried before, but brought to the hospital to try with him again later. I mixed a little pear baby food in with some formula and then some apple juice, to try and mask the flavor of the formula and sweeten it up a lot. He was hesitant at first, but eventually, he was sucking on it! I was shocked, to say the least! I didn't want to get overly excited about it and force him to chug it all at once, so I let him play with the bottle a lot so he wouldn't be scared of it. It came to the point that the baby food was clogging up the hole to drink out of in the bottle's nipple, and Kal was acting aggravated that it wasn't coming out fast enough! Say WHAT?! So, we had to snip the hole a few times to make it bigger, and then he was drinking it like a boss. All in all, it still took about 3 hours for him to finish everything, but it was a huge breakthrough! I just stood there continuously praising and thanking my Heavenly Father for blessing us that he finally was taking the bottle. I knew there was no other way this kid would have ever taken a bottle, except if it were from a miracle from God. Seriously.

Celebratory picture after finishing his bottle!

That afternoon, my friend who works at the hospital dropped by to chat. She even brought a gift for Kal's BMT birthday, an adorable soft elephant that hums lullabies. She is so sweet! While she was there, Jonald, my mom, and Kayelee came over to visit. Kayelee loved that little elephant and kept hugging it like it was her present. Haha!

It was wonderful to see Kayelee again. We got to go downstairs in the Forever Young playroom and eat dinner together with my mom. Every time I see her, she has grown up a little more. It breaks my heart that I can't be with her always. On the other hand, I am afraid of leaving Kal here and something would go wrong, or he'd take a turn for the worse, and I wouldn't be here to help him and give him mommy snuggles. (That's the best medicine, right?! Haha). It especially broke my heart when it was time for everyone else to head home, and Kaylee said something to me like, "Mommy, are you coming home too?" Ooohhh, my heart. Trying not to get choked up, I replied, "No, baby. Kal is sick, and I need to stay here to help him." I didn't think she'd understand what immunocompromised would mean, so I kept it simple. She gave me a long hug, and I didn't want her to let go. They soon left, and I was here alone with Kal again. As much as it pains me to be away from everyone else, sometimes these special, quiet moments alone with Kal are so special to me.

At Kal's next feed, I tried just mixing apple juice and formula equally in his bottle because the baby food in the last bottle was causing clogging issues and just stuck to the side of the bottle. He still drank 6 oz. from that bottle. Then, Jonald suggested I try straight formula to see how he takes it. I was hesitant at first, because I was afraid we might ruin all the progress we made with the bottle in the last feed. But, I guess I would never know until we tried, so we tried and he took 2 oz. of the formula straight! I seriously have no words to express how surprised I was, and still am. Wow! Another miracle!

Later that night, at his last feed of the day, I thought I might try to get more brave with the bottle and formula. I gave him 4 oz. of formula, and he drank it up in about an hour of half-playing half eating. Amazing! Another miracle! I didn't want to push it too far with the formula, so after that, I also tried giving him straight apple juice from the bottle. I figured maybe he would continue to think the bottle is good if he sometimes gets sweet things from it. He drank another 3 oz. of the apple juice! Miracle!

...And then he threw up. Hahaha. Okay, in all honesty,  had the feeling as he was drinking the apple juice that I shouldn't push him too far, as he's not used to eating this much, but I brushed those feelings aside. I was too excited and wanted to see how much he would drink from the bottle. Yeah, well, I payed for my over-ambition. Poor little guy. Sorry, baby boy! Oh well, you win some and you lose some. Literally, sometimes you lose some- all over your bed. He was happy as a clam, though, after that. It probably got rid of some of the junk that's building up in his throat from mucousitis. After we gave him a sponge bath, and I swaddled him up for bedtime, I figured I would try to at least give him the leftover 1 oz. of apple juice he had left in his bottle to get the yucky flavor out of his mouth. He finished that and then fell soundly asleep with me rocking him in the rocking chair. Hey, that 1 oz. is still a continuing, little miracle. (;

In other news, a little boy finished up his BMT process and recovery yesterday, and got to go home. The nurses lined up in the hallway to cheer him on as his dad carried him out of his room and down the hallway. They sang him a song, rang bells, and then let him ring the bell they have here to celebrate when someone is done and gets to go home. I have to admit, I got a little choked up watching this whole ordeal. It was so exciting, and sweet. I couldn't help trying to imagine that being us in the future.

Also, the little 2 year old-girl with leukemia with such a sweet mom got to leave today as well! She's finished with her process, and hopefully that will be the end of her hospital stays. There's always the possibility a fever or anything else could bring her back in here, but I'm praying she'll do great and be able to return to her family in Idaho soon. They need to stay in nearby temporary housing, just in case, until they get the all-clear to go home. Please pray for that sweet girl, her mother, and the rest of her family!

Furthermore, a two year-old girl with brain cancer next door to us got to go home for her week break today! Woohoo! She finally started to eat a little bit, and finally had a bowel movement (after 8 days... yikes).

It's funny the things we all celebrate in a place and situations like this. If you have a bowel movement fairly regularly and eat even a nibble of something, you're probably doing better than the majority of the rest of the patients here in this unit. With Kal doing both of those things so well, in addition to not having too much nausea, mucousitsis, or any hair loss yet, he basically looks like a rockstar to the nurses and doctors! We are SO BLESSED! I don't know why God has chosen to bless us so much in this situation. I know it's not because we are any better or more righteous than the other people here. I don't know how long these blessings will last, or how long Kal will continue to do so well. The nurses and doctors remind me (almost constantly) that he will get worse, because that's what pretty much always happens. I don't know why we are seeing so many miracles in this process, and are so blessed and lucky right now, but we will take each wonderful moment and each good day we have.