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.