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... (: