Feelin' Good!

Last night was an incredible improvement from the night before! He was still restless at first, but settled back into a good sleep for most of the night. When I woke up in the morning, I felt like a new woman! Haha ok, but really, a good night's sleep does miracles for me...

Kal was on a roller coaster of happy and grumpy this morning, but actually settled down to sleep and got a good nap in.

During one of his grumpy moments: Guess what finally calmed him down? Looking at himself in selfie mode on my phone's camera. Vain much?! This guy... Hahahaha.

When he woke up, he was feeling good and happy again. He was chattering, flirting with the nurses and nurse techs, and smiling a lot. P.S. for those who don't know, his skin is peeling so bad like that as an after affect from the chemo he received before. First, that particular type of chemo he received darkens the skin. Then, it's almost like a sunburn, except it's the chemo kind of burning your skin and after it peels off like a sunburn would. After a little while, he was grumpy again, so I tried to put him down for another nap, and guess what, he actually slept and got another good nap in! When he woke up, he seemed so much more well rested compared to yesterday. Even his night shift nurse tonight (who also had him last night) kept on commenting how rested and content he looked today, which is way better than he looked yesterday. She's right; the difference between him yesterday and today are seriously like night and day!

I wanted to document his skin like this before it peeled more, back to normal.

I actually think he's awfully cute with his skin like this! (P.S. Can you tell that most of his amazing, long eyelashes have almost all fallen out? Darn it... I hope they grow back as long as they were!)

The only issues Kal had today were slight irritability at times, throwing up once, and having a hard time getting weaned off his oxygen. Whenever we would try to lower it, his oxygen level would dip down and go back up, for a good while. The doctors are saying it's very possible Kal may go home needing a little oxygen help here and there. That's no big deal, though. That won't be terms to keeping us here. They are saying he can hopefully be discharged tomorrow if the rest of his symptoms/issues stay at bay, despite his oxygen levels dipping down. Whoop whoop!

Thank you for your prayers! I can see and feel how your prayers strengthened and blessed my son to feel so much better today. It is incredible the difference in him between yesterday and today. I can't get over it. I can hardly comprehend how big of a difference it is. All I can do is praise and thank God for these blessings today and thank you all for your love, thoughts, and prayers you sent up to God on our behalf!

Oooh! I can't get enough of this smile! I'm just soaking it all up whenever I can. (;

Back in the Hospital Again

Kal's nurse wrote this on his board. Yeah, that's seriously the best advice I've heard in a long time. I don't know if the message was meant for Kal or me, but the goal applies to both of us!

We're sitting at Day +42. From the last time I updated you all, a ton has happened, and I have honestly been too dang tired and/or busy to sit down for a moment and write a blog post. But, alas, as I have been getting much more messages asking what's going on with Kal these days, I figured I better just update everyone again in this one place. Don't get me wrong- I love your well-wishes, but sometimes repeating the same answers to the same questions from so many people is exhausting, and well, honestly, I'm plenty exhausted without all of that.

As you may have read in my last blog post, settling back into life at home was extremely hard. There was so much to learn, so much to do. I could barely sit for a moment without having to get up again to tend to one of the kids, do something for Kal's medicines, comfort/entertain Kal, let alone actually getting around to eating something.

Ever since we had gotten home, Kal has just been extremely fussy. If I ever ventured to try and put him on the floor, he would scream. Hence, he spent most of the time in the swing, which thankfully helped keep him entertained for part of the time. He was also grunting a lot- not like "I'm going to poo" kind of grunting, either. It seemed like he was just very uncomfortable all together. Plus, we spent a few nights, especially one really rough one, where he would just be so restless during the night that he couldn't stay asleep for very long. I was drained by the morning. Kal kept throwing up very often, especially during the night and his naps. There was one night where he actually threw up his feeding tube. I hadn't been trained on how to do that, so I had to call the home health nurse to come and teach me. Since there is only one home health nurse assigned during the night for that part of the valley, I had to wait up for her after he last appointment. Yeah, so that meant she didn't show up until about 1:15 a.m. Jonald and I were falling asleep on the couch, and even Kal had fallen asleep waiting in his swing. And go figure, putting the feeding tube back in probably took a whole 2 minutes. What the heck?! That's it??? I waited up that late for something I could have done in 2 minutes?! Let's just say my lack-of-sleep self at the time was pretty ticked at the fact I wasn't taught that beforehand so I could have avoided that situation all-together.

On top of that, one of Kal's syringe pumps for his anti-fungal was malfunctioning, resulting in him missing a couple doses. Also, Kal's breathing was really rapid ever since we left the hospital. A couple of home health nurses had checked it during a couple of his visits, along with his oxygen saturation, which was sitting between 90-91. Both the rapid breathing and lower oxygen level concerned me, but since they did not seem concerned, then I chalked it up to me just being paranoid.

Kal had his first clinic check-up appointment last Thursday. Kal was so fussy and restless as we were waiting for the doctors to come in, so I gave him some of his anti-anxiety medication to help him settle down. Well, that was a mistake. After that, he fell asleep and his breathing slowed down to a more normal rate. Therefore, when the doctors came in and I explained what had been going on at home, they saw Kal and said, "Well, he looks great now. Just keep an eye on him..." They didn't even get to see him how he was normally acting at home to see what I was talking about. Of course. I swear I'm not crazy, guys! My hubby can attest to the fact that Kal has been a little cray-cray at home. Again, I chalked it up to be just being paranoid and told my inner self to chill out.

Well, by the time Monday rolled around, I was beyond exhausted mentally, spiritually, physically, and patience-wise. I was seriously spent. I was starting to get a hang of the medicine routine, but Kal's grumpiness, fast breathing, and lower oxygen level were leaving me feeling unsettled. I set out to Kal's clinic appointment that morning with the determination to not give Kal his anti-anxiety medicine that morning before he was seen by the doctors so they could see him for how he's really been acting. When they came in and saw him, all they really could say was, "Yeahhhh. I see what you mean now." Yeah, finally. You think?! They sent him down to have an X-ray to make sure he didn't have any infection in there. Thankfully, it came back about the same as his last X-ray. On the other hand, though, they were concerned about the way he had been acting and decided to have him admitted right away back into the ICS (Immunocompromised/Cancer and Transplant) Unit.

Chilling in his comfy hospital bed again.

Honestly, I didn't know that those symptoms would make him to be admitted again. I just wanted the doctors to see Kal's odd behavior with their own eyes to know if I should really be concerned or whether I was truly being paranoid. Being admitted again was a whirlwind of emotions. There was the disappointment of having to be back here again. Then there was the stress of trying to figure out things and contact people to let them know (thank you, Facebook, for making that easier!). There was the worry of wondering what could be causing Kal to feel and act that way- always thinking of the worst that could happen. There was the voice in my head telling me to calm the heck down because I was previously warned (on several occasions) BMT kids are re-admitted multiple times after going home, and that I should have expected this to happen. (Well, I did expect it to happen, like waiting for a bomb to go off, but at the same time, it's one thing to mentally try to prepare yourself for an upcoming situation, and it's another thing when that situation actually happens.) Then, there was the feeling of my heart being ripped in two again, as our daughter started screaming when I had to say goodbye to her- again. There was the feeling of chaos for gathering information to be admitted. But, amongst all these other feelings, there was the feeling of relief: relief that I could catch my breath for a short moment and have help from the nurses again, relief that my concerns were valid that something was going on with Kal, even though I couldn't explain it well, and relief that Kal can hopefully start to feeling better and being back to his old, happy self again soon.

These past few days in the hospital have been interesting. None of his cultures or viral panels have come back with any answers, although they believe he probably caught whatever our daughter had from her runny nose over the weekend. For the majority of the day, Kal has still been throwing up a lot and been very restless. His respiratory rate has gone down a little, though, so that's good news. During the evening, there's usually an hour or two where he will perk up, be happy, babble, and basically act like his old self again. It makes me hopeful that he's getting better- that is, until night time rolls around and he's so restless on through the next day before he perks up again the next evening.

During one of his happier moments. I love seeing that smile when I can get one!

In other news, I noticed yesterday that Kal has his first tooth cutting through his gums! It's an exciting milestone, yet sad it had to happen while he was in the hospital, especially while he's already so uncomfortable. I'm wondering if that has been contributing to his discomfort. Funny thing, though: in a children's hospital, the pharmacy does not carry Orajel. Weird, right? At least I thought so... At least we have Tylenol available, which has seemed to help.

Kal has needed to be on oxygen for most of his stay here. They said for Kal to be allowed to go home, they would like for him to be breathing slower (which he's been doing better at) and getting enough oxygen on his own without needed extra oxygen. We tried today to take him off the oxygen and see how he did, but his oxygen levels kept going up and down from 92 percent to 85 or so, back and forth. They decided to keep him another day to see if he does better tomorrow. He had an extremely hard time settling down for a nap today. I tried for 5 hours before I gave up. Occasionally, he would fall asleep for a few minutes, but only to wake up soon after, being extremely grumpy. Kal "sort of" had a fever earlier, as well. In one armpit, it said his temp was 38.2, but his other armpit read at 37.8. Since one temperature reading was considered a fever, they took some blood cultures and started him on an antibiotic, just in case. I'm wondering, though, if his temperature was elevated due to his tooth coming in. We'll have to see tomorrow what the doctors think of that and if that means he might have to stay longer here or not.

Day +34 and +35: Ringing the Bell & Going Home!

We got to go home today! Woohoo! *Happy dance!*Happy dance!*

Whew! What a doozie of a day. It has been constant craziness since this morning, and I, for one, am exhausted- physically, mentally, and spiritually.

All this morning/early afternoon was filled with meetings with different specialists to set everything up and ready for Kal's discharge. We met with his BMT docs and NP, physical therapy, music therapy, home health coordinator, pharmacy coordinator, pharmacists, and dietician, just to name a few. In between those meetings were moments of pulling everything together and packing up, all while also receiving teaching for discharge.

Almost ready to go! "Look everyone, I'm finally wearing "real" clothes again! Don't I look cute?!"

After we tied up all the loose strings and Kal had been administered a platelet transfusion, we were ready for discharge! The sweet nurses decided to make a last minute sign for Kal. Bless their hearts, though, somewhere in-between our unit and downstairs where they were making the sign, they thought his name was spelled Kael. Hahaha. After learning their mistake, they apologized and made an attempt to wipe out the "e" from the wet paint. It just makes it for a better story down the road! (;

Very lovely painting by the nurses and staff... hehehe.

Then, it was the moment we have been yearning for. The nurses and staff sang Kal well wishes and then- Kal got to ring the bell- signifying the end of this leg of the journey!

The famous going home bell!

I love the poem on the plaque of the bell, especially while thinking of Kal: "Now I am on my way!"

We also let Kayelee ring the bell afterward, because she has also been through a lot of change during this process and deserves to celebrate with us.

We made it- as a family team!

After that, we headed home! It was such a surreal feeling. I knew the route going home very well, but I had to keep reminding myself, "We're all going home. This is it. This is really happening. We're actually going home!" At the same time, though, I actually started feeling carsick because I hadn't ridden in a car in about 6 weeks. Kal was exhausted from the day, so he fell asleep en route. Kayelee was so excited, she was jabbering (and occasionally singing) all the way home.

Wearing a mask for safety (:

This chubby kid can barely fit in his infant carrier anymore!

As we pulled up to our house, we were greeted warmly with cute "Welcome Home" signs stuck on the sides of our house, ribbons tied on the garage door and our bushes, and a balloon tied on by the door. It was the sweetest gift ever, given from the wonderful people in our ward from church. After such a long day so far, that kind, thoughtful surprise put a big smile on all our weary faces.

What a fun surprise to come home to!

 

Later that night, we got our delivery for the medical supplies and the home health nurse came to give us teaching on how to set everything up. Yeah- oh. my. - mind blown! There is so much to learn, it's ridiculous! I don't know how so many parents do this, or even have more and more complicated medical equipment than we have now. He has 2 IV nutrition bags (TPN and lipids) that we must prepare (for the TPN, think taking vitamin injections out of two vials and injecting them into the base liquid). Then we set both of them up to their individual pumps, then set them up and attach them with a Y tubing which then attaches to Kal's broviac (central) line. Also, we need to prepare the formula, fill up his feed bag, set up the pump, and attach the tubing to Kal's feeding tube. On top of that, Kal has 2 IV anti-fungal medicines that need to be attached to him from one more pump and a medicine bag.

Holding hands- Ate and baby brother reunited once again!

Needless to say, Jonald and I were mentally drained after that... more like mentally run over by a truck and then pushed into a river and drowning. You know, people keep joking how we could go into nursing after this and would know most of the stuff already. Yeahhhhh, I don't think so. We haven't even touched the tip of the iceberg there. If we are flabbergasted by these things we've been taught and put in charge of, we have no chance at nursing school. Nurses have even more of all my respect!

Since his IV anti-fungal dose doesn't finish until around 12 a.m., I decided it best to stay up until then rather than going to sleep at 11 p.m. and risk not waking up on time to cap off his tubing and his central line. Right before I got up, though, I heard Kal getting upset. He had thrown up all over himself. Poor guy! :( It was so much, I had to change his clothes, diaper, and blanket. Then he was wide awake until about past 1 a.m.

Jonald was sweet enough to administer Kal's medicine at 6 a.m. when he was up so I could sleep in a little.

At 8 a.m., that's when the party started. Kal woke himself up by throwing up all over himself, again. He was very upset most of the morning. He didn't want to be put down on the ground at all. Otherwise, he'd scream bloody murder. I needed to set up his 2 IV anti-virals, change out his formula NG feeds, give him 6 medicines, then unhook his IV nutrition, then again give him more medicine in his NG tube. I didn't even sit down to eat until past noon. I was so frustrated I wanted to cry... Okay, okay. I did cry. I thought, "How will I ever be able to handle this all? It's just so much. I am completely overwhelmed. I just want to go back [to the hospital]. " What used to be 4 people's jobs at the hospital was all my responsibilty now, at least during the day while Jonald was gone. Luckily, my mom was still here today, so she helped take care of Kayelee, made breakfast, and went out grocery shopping with Kayelee so I could take a nap. That was the biggest help of all!

After having a nap, some of my sanity returned, despite being woken up by Kal screaming and throwing up again. Kal threw up 2 more times today. Luckily, he still has no fevers, but his temp did get up to 99.9 once, so we'll keep an eye on it.

Jonald was so sweet and watched the kids this evening so I could treat my mom to a "thank you" dinner for helping us so much during this process so far. It was great for me to get out of the house, especially after the kind of day we had today. I sure will miss my mom not being around to help. She's going home tomorrow and my father-in-law will be taking her spot here instead. Also, it's Kal's first in-clinic visit tomorrow. Here's on to taking the next leap on our BMT journey!

Day +33: Going Home Tomorrow!

I can't even believe the day is tomorrow! Everything looks good enough and in order to be discharged tomorrow afternoon. It still seems so exciting, scary, and unreal to me. We're so happy he will get to go home, but there's also a new normal ahead of us. This fight is no where near over. We'll still have a good 9 months to a year (or possible more) until life can be lived without so many precautions and fear of the risk of infection. His immune system is still very fragile, and it takes a long time to grow his cells back and continue to produce them to a level of an average child his age. At any time if he develops another fever, rash, or other issue, even if it seems somewhat minor, he could easily be readmitted again. In fact, they said pretty much count on it, at least a few times... Hopefully we're the exception to the average? Hehehe. We can always hope. It seems unreal to go home, though, because we've gotten so used to life here in the hospital, and have seen many of our (well deserving) friends go home. Yet, it feels strange that it is actually and finally Kal's turn to be cheered for, sung to, and ring the bell marking the end of this stage in his BMT journey. The battle is not won, but we are marching onward!

The strongest fighter I know!

Last night, he was quite restless, which ended us both not having the best sleep in the world, although he didn't need to be rocked back to sleep, at least. I could just hear him tossing and turning a lot, making me toss and turn a lot, haha! Silly boy. (;

Kal's doctors said he'll be good to be discharged sometime in the early afternoon tomorrow. Everything is looking better, and Kal is feeling much better for the most part. He did throw up 3 times today, but again, that's totally normal behavior. It will take quite some time for his stomach and intestines to learn how to work again. Kal was so happy and smiling and babbling to all the nurses today. Every nurse that comes in just falls in love with him. The nurses here are just so sweet and really take the time to talk to him, even if they're not his scheduled nurse for the day. Nurses that have had him before will even come and visit him during their shift to check in on him. It's so sweet. He'll just smile, kick his legs, and babble to them in response to what they say- except when one nurse comes in with his beard. Kal's mesmerized by that guy's beard, hahaha! It takes Kal a moment to snap out of it and smile at him too, but he really does love that nurse as well.

Oh, you know, we like to flash ourselves, just to keep things interesting and fun! Hehehe.

In the morning, Kal got to go around again and visit his nurse friends all around the unit today. Everyone gets so excited to see him. It seriously warms my heart so much. Then, later tonight, I was allowed to take him out of the unit and go OUTSIDE on the patio! Yes, like, outside OUTSIDE! Although he had to wear a special HEPA mask, I could tell he was excited. He started breathing fast as though he forgot what fresh air smelled and felt like. His eyes kept looking around everywhere, as well. From the patio, we can get a good view of the road in front of the hospital. When Kal saw the cars passing by, he just stared at every one of them, watching them them go all the way down the road and out of sight. Watching the cars used to be one of his favorite things to do from our window or patio back home. This reminded me of the "old" Kal I used to know, and made me excited to see bits and pieces of his old personality come back.

The only way he doesn't rip that mask straight off is because he gets to suck on his binky behind it. (;

So excited to finally take him out to enjoy some fresh air together!

Looking out to the world he forgot even existed.

Well, folks. This is it! I will try and keep updating this blog with Kal's progress as much as possible, but it probably won't be every day anymore (unless we get admitted again for some random thing, haha). As you know, life will be very crazy trying to pull our lives back together and learning our "new normal" at home. As new updates come along, I'll surely let you all know how our sweet little man is doing, though! Until then... (:

Day +32: A Little Scare & Exploring!

At 4:15 or so a.m., Kal decided he wanted to be awake. He wasn't cranky at all, I just woke up from the noise of him blowing bubbles with his lips like crazy. Hahaha! I gave up nearly an hour later, as he was still wide awake, and I went to bed. He eventually fell asleep on his own again, after that. Jonald and Kayelee were here from last night (they slept in the Ronald McDonald sleeping room overnight), so they came in early this morning to hang out. My mom joined us for church and hung out with me a little while afterward.

Nothing too new with the doctor's rounds today. His ANC is at 900, so they said it's basically hovering around the same place. They added an anti-pneumonia med that's given to pretty much all BMT patients after day +30. The game plan is still to be discharged on Tuesday- like, two days from now, Tuesday! It's so crazy to think about and try to comprehend, yet it couldn't get here sooner.

We love playtime!

So, we had a little scare earlier. My mom and I took down mostly everything in the room, in preparation for him hopefully to being discharged on Tuesday. After that, the nurse tech came in the room to take his vitals. His temp read 38.0 (which is the requirement to say he has a "true fever"). Just to be safe, she re-took it. It then read 38.3. My heart sank, but all I could really to is laugh. It was a strange coping strategy, but for some reason I found it terribly funny that Kal would pop up a fever moments after we took down his room decorations and packed some of his things up. As I was taking those decorations down, I had even had the thought of "Just you watch: Kal will get a fever after we take everything down, so if we have to stay longer, we'll be stuck in a plain, boring room." I thought I had totally jinxed it! The nurse then said his temperature might have to do with him being swaddled at the moment, so she said, "Ok, unwrap him, air out his pits, think cool thoughts, and I'll be back to check his temperature again to make sure it's a legit fever. After she check again, though, he was all good with a temp of 37.4. Even the nurse practitioner on-call said she wouldn't consider that he actually had a fever then, therefore, it won't hold us back from going home on Tuesday. (:

Guess what else happened today?! Kal got permission to leave his room for a little while tonight! He had to wear a cute little mask over his pacifier, but he really enjoyed looking around the hallways of the unit. It was as though he was just soaking it all in because he didn't know a world existed outside of his room anymore. The only reason why I had to cut our little walk short was because my arms are not used to carrying this chunker of a baby so I felt as though my arms were going to give out at any near moment... hahaha! Maybe we'll try for another walk tomorrow! It's all proof that we'll be able to go home soon! (:

Is he not just the cutest in this little mask (that's still huge on him!)? I'm in love... (:

Day +31: Priceless Moments

Today was pretty chill. Last night, Kal temporarily woke up a few times due to getting his vitals, but what else is new? I was talking to another parent, who agreed that we have no idea how we are surviving on so little sleep. In fact, we almost have more energy on some days here than we did at home when we got more sleep? Go figure. I say it's "survival mode."

Snoozing during his first nap of the day. Mama's soaking up the snuggles!

Kal's ANC went back down to 800 again and his markers for whatever fungal test came back in higher. The doctors didn't seem too concerned, though. They said since Kal is not having any signs of fevers or other symptoms, they'll just take those numbers not so seriously. (Remember, that's because these fungal markers are only an indication of fungus present, but may or may not actually reflect an actual fungal infection present.)

Getting a little "tummy time" in- he's doing so much better with it lately!

Also, Kal threw up maybe 2-3 times today? My memory tends to blend the daily events together lately, despite writing these blog entries. (Good thing I am writing these, or I might have gone way off the deep end of crazy by now! Hahaha.) Throwing up and being gaggy is totally normal, though. Kal just wasn't the happiest during those times, though. On the other hand, most of the day, Kal was pretty happy and alert. He is playing more, which makes me happy, too.

Kal's face when I handed him a rubber ducky to play with, and made it quack/squeak for him. Priceless!

Jonald and Kayelee came to visit tonight. Kal perked up when he saw Jonald. I love it! Jonald took his turn holding Kal and giving him snuggles while I played with Kayelee. Kal was so happy and comfy in his daddy's arms; he just relaxed and snuggled up to Jonald's arm. It melted my heart! This was one of those sweet moments as a parent you hope you'll never forget.

Loving these Daddy snuggles right now!

Day +30: (Day 40 total) Our "Noah and the Flood"

Today went pretty well. Sure, Kal decided to start the day at 5 this morning, but I got him back to sleep, eventually. Haha.

The doctors are happy with his progress. No new changes to his medicine or feedings today. Basically, the only new thing today is that they have changed the prospective day of discharge to being Tuesday instead of Monday, due to the holiday, and apparently it would be more difficult to set up home care, etc. on that day. Eh, okay. I guess that just gives us one more day to ensure Kal is doing well with his fungal numbers, platelet levels, and ANC amount. By the way, his ANC went from being 800 yesterday to 1000 today. Hooray!

Taking a snooze: A little swollen-looking this morning, but nothing a little diuretic can't fix (;

Other than that, today has been pretty chill. Kal was pretty happy most of the day, except when he ripped off his dressing for his central line (double lumen broviac line), so I halfway freaked out and grabbed his nurse to replace it. He was also not too keen on his sponge bath today, but he liked getting all lotioned up and snuggled with afterwards.

Earlier, my mom and Kayelee came to visit me, and we watched "Tangled" together in the room. Kal woke up from his nap then, but wasn't too interested in the movie, haha. When they were leaving, Kayelee told me, "And you stay here." Awhh. Then, she wanted to stall the fact that they were leaving and sing a song to me. But, they were already running late to pick up Jonald from work, so I said she could sing to me next time, and she got very upset and started crying. It broke my heart. One day soon, sweetie, we'll be home together and you can sing songs to me all day! Also, my sweet friend dropped off an amazing lunch for me. I swear, delicious food makes a huge difference in my mood. It's seriously medicine for my soul. (;

Well, at least we have a day in mind when we can hopefully leave. Prayers that everything will go smoothly until (and after!) then so we don't have to stay longer here than is needful.

In happy spirits (before bath time, haha)

By the way, Kal has been in the hospital 40 days (10 prep days/transplant day + 30 recovery days after that). Something dawned on me today. That's about as long as it rained when Noah was on the Ark (either an expression meaning a long time, or literal amount of days). Either way, I can't imagine how Noah didn't go crazy during those rainy days. How difficult it must have been to know the world as he knew it was being forever changed. Then, although the storm was over, he still needed to wait until the water dried up. Afterward, Noah was promised blessings from God, and shown a rainbow as a token of that covenant. Similarly, this journey we are on has sometimes been similar to a hectic rainstorm. We were flooded with emotions and trials, yet also flooded with the cleansing love, prayers, and support of our dear family and friends. This is forever changing our "world" as we know it, but for the better. This journey with Kal will not be over once we go home, but the sun, bit by bit, will sure seem to shine a little brighter. The "waters" of health trials will subside over time, as Kal gets stronger, and then we shall see the blessings of this trial- a healthy boy- our "rainbow!" I know this is all in our Heavenly Father's plan and the blessings are coming closer in sight!

Day +29: Bright Future (;

Except the "finish line" to go home soon is near! Hehehe!

No fevers still, so far! He's past the 48-hour mark to watch for fevers now! Whoop whoop!

Now we get to think about and try and get ready to go home sometime soon! I was thinking that Kal would be able to be discharged tomorrow (Friday), since that was the big thing keeping him from going home. After speaking with the BMT doctors, they noted that they'd like to try watch some things before they will discharge him. That pushes back the tentative date of discharge a little further, BUT, on the bright side, they said they now can say they are trying for a specific day, which would be hopefully Monday or Tuesday! It may not be what I had guessed, but having an actual day laid out by the doctors makes it feel all the more real. It's coming right around the corner! At the same time, it's hard to wrap my head around the thought that we'll be home- like home, HOME- very soon.

Smiles from Mr. Chunks, anyone?

Together with the Infectious Disease team, the BMT team has laid out a few things they are wanting to watch over the weekend. First, he needs to have no more fevers (duh!). Second, they reduced his current 2 antibiotics and 2 antifungals to 1 antibiotic and 2 antifungals. They are also considering dropping one type of antifungnal as well. They need to watch him and make sure he does ok and shows no new signs of infection from doing so. Third, he needs to prove he can keep his platelet counts up enough to only need platelet transfusions in-clinic. Finally, he needs to prove he can keep his ANC (neutrophil) levels high enough, and keep increasing in numbers. Over the past few days, those numbers have dropped down to 800. They were much higher before. But, the doctors said that is normal for the counts to go up and down. They just need to make sure after this, his counts will start to bounce back up again. If his numbers go down to below 500 (which is not really common), they will simply give him a medicine that will stimulate those neutrophils to start reproducing a lot more.

As a side note, the main doctor from Infectious Disease is determined Kal is going to be big and strong, and grow up to look like Khal Drogo from Game of Thrones. Call me a dork if you want, but I had never even heard of him, so when the doctor showed me a picture of him, I cracked up! It totally made my day. (But, if he tries to grow a beard like that, this Mama will shave it straight off, that's for sure! When you can make pom-poms with your beard... it's got to go. Hahaha).

What do you think, guys? Will he look like this Khal?

Or, do you think he'll look like this Kal? Bahahaha.

 Either way, he's our strong little warrior AND superman! (;

Other than that, today was pretty chill. Kal had his moments where he became very upset, of course, especially when he threw up twice today, with one of those times also throwing up the end of his NG feeding tube. Yikes-er-yuck. Good thing it happened while the nurse was there in the room so he could tell me that's normal and then he was able to put it back in place. It still gives me the shivers thinking about it, though. He also got a blood transfusion, and barely hung on to his platelet levels enough today to not need a platelet transfusion as well.

As for now, we pray with gratitude that we can go home soon, and then just sit around and wait some more, until OUR discharge day comes!

Day +28: Boom Shakalaka!

Kal slept awesome through the whole night, minus the one time he woke up when the nurse was taking vitals at 4 a.m. and had to be rocked back to sleep. But still, except for that little part, we both slept awesome! Ahh to feel somewhat rested again...! Because of that, I think it helped Kal feel better and be in a happier mood today as well. That has been a blessing to see him feeling better and getting back to his old self again, bit by bit. He even had a moment of genuine mini giggles as I was bouncing his around today. In my mind, that is the first moment I have seen my "old Kal" and his cute facial expressions in quite some time. What a strength that has given me! :)

Getting a little exercise in the Bumbo and looking like a cutie pie

Kal had another CT scan today, but this tome for his head, as well as an enchocardiogram. They wanted to be safe and make sure no infection was hiding in those places. Thankfully, everything is all clear and normal! What a wonderful blessing it is to take out the scary possibilities and have the relief that this infection might be almost gone once and for all!

AND guess what else?! Kal has not had a fever since noon yesterday! That means if he can keep the fevers away by tomorrow noon, we're on the verge of finally being discharged and going home! Woot woot! What a miracle!

"Can't you tell I'm excited to soon leave all my nurses that admire me here at the hospital? #sadface"

After that, we just need to tie up some loose ends, which includes things such as: making sure he can keep his platelet levels high enough and long enough as well as getting all of his medications switched over from IV to be given through his NG tube. I'm not sure what else needs to happen before we're given the "ok" to go home. But still, it is on the horizon!

*Happy dance for this mama!*

Day +27: Is this real life?

Last night... ooohhh last night! It was a-ma-zing! He only had one fever, around 11:30 or so. But, although he was restless during the night and would wake up crying here and there, I didn't even need to rock him back to sleep. He would just settle down after a moment, or just needed his pacifier to drift off into sleep again. I don't know if he was just exhausted from the crazy night before, feeling much better, or what, but I don't even care! I had so much sleep last night, I almost feel (dare I say it) normal! I actually probably woke up more times during the night, for a second, because my body is so used to waking up so much during the night. It almost didn't even seem real that I was actually getting that much sleep. I could hardly believe it. It's like when your newborn sleeps that first long stretch during the night, and you actually sleep worse for the first few nights until you realize you baby is still okay, they're just actually sleeping longer for once. Haha.

Taking a nice, little snooze this morning. He looks so Asian in this picture- I love it!

Kal was a little grumpy this morning, but settled into a nap well. That's a plus, too! After his nap, he needed platelets again. He's been needing them almost every day lately, because fevers burn up the platelets like they're nothing. At around the same time he started platelets, he had a fever again. It was not too high, though, and went down with Tylenol. As much of it was a bummer for him to have another fever again, it was great that it had been 12 hours since his last fever. That's a great sign!

He perked up for a little bit after his fever subsided. (:

The Infectious Disease team of doctors came in today, as per order by his BMT doctors, to make sure there isn't anything extra they're missing, since Kal has had fevers for over a week now. Even though his fevers are not as high and father apart, they just want to be safe and sure he's getting better before they send us home. So, they're ordering a CT for his head tomorrow as well as an echocardiogram. Bacteria can just hide in the sinuses as well as the heart valves sometimes so they want to take extra precautions anyway, despite his blood cultures being clear. 

Well, prayers are always needed. Hopefully no fevers tonight?! (:

Day +26: Roller Coaster Baby

Let To-morrow take care of to-morrow;

Leave things of the future to fate;

What's the use to anticipate sorrow,

Life's troubles come never too late!

IF to hope overmuch be an error,

'Tis one that the wise have preferred;

And how often have hearts been in terror

Of evils that never occurred! 

Have faith- and thy faith shall sustain thee-

Permit not suspicion and care

With invisible bounds to enchain thee,

But bear what God gives thee to bear.

By His spirit supported and gladdened;

Be ne'er by "forebodings" deterred;

But think of how oft hearts have been saddened

By fear of what never occurred! 

Let to-morrow take care of to-morrow;

Short and dark as our life may appear,

We may make it still darker by sorrow-

Still shorter by folly and fear!

Half our troubles are half our invention;

And often from blessings conferred

Have we shrunk in the wild apprehension

Of evils-that never occurred!  

-"Imaginary Evils," by Charles Swain

Last night was rough. Reaaaaalllly rough. He had a fever around 11, which took him a little bit to get back to sleep. Then another fever around 4 a.m. He was so fussy and fighting me the whole time I was trying to rock, bounce, and hum to him to get him to settle down. Around 5 a.m., I gave up because he still wasn't asleep. At that point, I put him in his crib to fend for himself and went to bed. I was so exhausted at that point that I had been falling asleep rocking him in the chair, and at times I could feel my arms relax in my half-awake state. I was scared I was going to drop him, so I thought it was best to just let him kick out and fall asleep on his own so I could catch some more sleep. Around 6:30 a.m., he was crying again. I don't even know if he fell asleep or not. After trying to rock, bounce, and hum him back to sleep, I had to give up again and put him in his crib while I went back to bed. Sometime after that, he must have fallen back asleep on his own, because when I woke up around 9, he was just waking up again.

All worn out after a crazy night... yeah baby, you think you're tired! Heh heh...

The doctors didn't have anything new so say, pretty much. It was just the same thing- "Well, his fevers are still farther apart than they were, so that's a good sign. We just need to get rid of these fevers for a little while before he can go home."

During the morning, he was very happy and growling at the nurse (in a playful manner). He's usually much happier in the mornings compared to the rest of the day. As the day went on, though, Kal has been on a roller coaster of emotions- going from being silly to screaming his head off in a manner of seconds. It is very tiring. He was fighting me as I was trying to get him to nap earlier. Eventually he did take a nap, and I grabbed that opportunity to catch a short nap myself for the sake of my sanity, haha.

Snapped a pic during one of his happier/calmer moments

In the afternoon, my aunt visited me and brought me lunch. Soon after, my Bishop from our home ward swung by to see Kal. After that, my sweet friend from the ward also dropped by, around the same time as Jonald showed up. It was great and theraputic to chat with everyone. I love visitors, especially after a rough day and night! (Hint, hint, haha... just kidding... but not really kidding)!   (;

Kal had a fever pop up around noon today, but after that one subsided, he hasn't had another one since then. Say whaaaaat?! That's a wonderful sign! Hopefully we're done with the fevers.. or maybe Heavenly Father knew I needed a break by the time the afternoon rolled around, hahaha! Either way, we'll just have to see how tonight goes, though. Here's to hoping!

Day +25: Angels Among Us

Can you believe we have been here 35 days already?! 10 days of preparation and transplant, and then 25 days since. That doesn't even seem real. Just had to put it out there...

Sacrament meeting was nice today. It's always neat to be surrounded by so many people of faith that are going through crazy medical trials as well. Jonald, Kayelee, and my mom came over to visit today as well. Kayelee is getting so grown up; it blows my mind. She's such a smart little girl and uses that to try and sass us. It makes me just have to crack up at her sometimes because I have no clue where she comes up with some of the stuff she's saying!

Also, a sweet friend of mine from college dropped by to visit today. I haven't seen her in 5 years. That is so crazy to think about! It was great to catch up and share experiences with each other. One thing that really brought insight into my mind is our discussion about people who have already passed on are helping us throughout life and our trials. She shared with me an amazing quote:

"In the gospel of Jesus Christ you have help from both sides of the veil, and you must never forget that. When disappointment and discouragement strike—and they will—you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection." -Elder Jeffery R Holland

 I believe this wholeheartedly! She was my angel of the day for sharing that wonderful thought with me. When looking up this quote again online to share it with you all, I also came across another part in that talk that brought peace to my soul:

"I close with this promise from heaven.
"Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you;And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along.[D&C 78:17–18]

"I will go before your face. I will be on your right hand and on your left, . . . and mine angels [shall be] round about you, to bear you up. [D&C 84:88]

"The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours. [D&C 78:18]"- Jeffery R. Holland, "For Times of Trouble," BYU Devotional, 3/18/1980.

 It's so wonderful to think my loved ones on the other side are here for us, even though we may not see them. In Jonald's culture (Filipino), they have the belief that if a baby is looking out at nothing but smiling or talking, the baby is seeing an angel. I really like that theory. Seriously, there was a day where the nurse and I were standing right next to Kal's crib, and he was just looking around the room at different, specific places, one at a time, and just smiling and babbling. Seriously, it made me think about how at that time, this hospital room must have been full of our loved ones on the other side who were there to see Kal. It was a wonderful feeling to think of it that way. I don't know if it was true or not, but the room certainly felt full in that moment. 

In other news, the doctors say they know what is causing Kal's fevers. It is a certain type of fungus, and could possibly be another type of fungus as well. He had already been on a new antifungal for the past couple of days, but to be extra cautious, they added a new antifungal for him to start today. Even though they said it takes longer to get rid of compared to a different type of infection, hopefully these will at least pull out his fevers so we can go home soon. 

Also, Kal's fevers have been not as high and last not as long recently. That's a great sign that perhaps the first antifungal he's been on for a couple days is starting to do its job. He did have one fever in the morning or just barely 38, but it went down quickly with Tylenol. Later in the day, he had a fever of 39.1. That's pretty darn high, but with some Tylenol and a bath, he cooled down very quickly. Other than that, he was happy this morning, but then was suuuuper grumpy most of the day until he had his bath. After that, he was pretty chipper until he wore himself out again. Hopefully tonight brings no fevers. His night nurse said he is "going to fix Kal of his fevers tonight." Haha, here's to hoping!

A little moment when he was in a good mood!