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!

Day +24: CT Scan

Last night was eventful. Around 2:30, Kal woke up with a fever of about 39.4. I was up from then until past 5 trying to help him cool down. His breathing was rapid as well, and with those two things combined, the nurse asked another nurse as well as the tech to come in with her and observe him. When explaining why she had them come in, she said, "When a patient gets this sick, well, we worry." Oh, my heart sunk. I kept thinking, "What do you mean, 'this sick'??" My stomach was turning in knots. Luckily, after a while, he settled back down again and his temperature went down a little enough for him to settle back to sleep. I forced myself to sleep because I knew I may have a busy day ahead of me.

Too hot with a fever, so we put an ice pack on his chest and a wet washcloth on his head  to cool him down.

Kal slept well after that, for the most part. Later in the morning, he was awake and alert, and his fever even broke. The doctors ordered a CT scan to be done, due to him still having fevers and they did not know the cause of them. Kal did so wonderful during the CT scan, the best a patient could do! Thankfully, I was allowed to be in the room right next to him during the whole process. When I saw his little body on that huge table, strapped down, and going through that huge machine, I almost lost it. My sweet little baby has already been through so much, and now this? What will they find? Do I even hope for them to find anything, or not? If they find something, that means they know a direction to help treat it. But, that also means the cause is serious enough to blatantly show the problem on a CT scan. If they don't find anything, then that means maybe whatever is going on isn't as bad as we thought, yet we're still sitting in the dark not knowing what to do next.

Sort of awake for this picture- a little tipsy from his medicine, haha

He's just so... little, compared to this huge machine.

Later in the day, his fever spiked again. The results of the CT scan came back as well. They said they didn't learn much more that they already knew. Kal has some inflammation here and there, but nothing significant and in one area. They expected some inflammation anyway due to what his body has already been through. There was a little bit of inflammation around his bladder, though, and they ordered a urine test for a certain type of virus that may be causing that. But, on the other hand, they said that virus alone can cause fevers, but not fevers as high as Kal has been experiencing. Also, a lab result came back positive that kind of tells markers for a possible fungal infection. I don't know exactly how it works, but apparently it doesn't mean he actually has a fungal infection- it's just possible. They will be doing that blood test over again on Monday to see if those numbers have changed-whether being higher and indicating we caught a fungal infection early before it was detected on the CT scan, or whether it is the same or lower, possibly meaning he didn't have an infection? Something like that. They may also do another CT scan on Monday if his fevers persist to re-check and make sure there is no fungal infection somewhere.

Kal had a fever most of the day until about 7 p.m., when it broke again. His temperature is still down as of now. Perhaps he is done with his fevers? We can only hope and pray that is so!

Loving every cuddle moment I can get with this guy

Day +23: Still Here

Kal got yet another fever last night. It lasted through until the morning, around 8 a.m. before it broke. Around 9:30, though,, his fever was back again. The good thing was the fever was very mild, just on the borderline of being a fever, around 38.0-38.2. Around 1 p.m., his fever subsided again and his temperature was the lowest it has been in a while: 36.4! Around 8 p.m., Kal was stuck with a fever again. It was only 38.2, though, and with some Tylenol, his fever broke yet again, and his temperature was back down.

Today Kal was still kind of sleepy, but definitely more awake than he was yesterday. He still doesn't have the energy to be awake for very long. Sometimes it will only be a few minutes, and at other times he reaches his max after an hour and a half of being awake. The physical therapist tried working with him today, but Kal was exhausted after trying to roll over once- he seriously fell straight asleep after he was turned to be on his back again. It was so sad but adorable at the same time.

Exhausted after physical therapy and then a nice bath!

In other news, so, since Kal has been continuing to have fevers, the doctors wanted to change things up a bit. They changed his antibiotics to different ones to try and cover different possible bacteria. Also, they changed the type of antifungal Kal will be getting. They also took several blood tests and a nose swab to check for possible reasons for his fevers. While most of his test results are still pending, we do know his viral respiratory panel came back negative- just meaning the certain common viruses they tested for with the nose swab came back negative.

Furthermore, Kal has still had issues today with "squeaking" while he's sleeping. It's called stridor, meaning it sounds like the airway is a little smaller and makes a higher pitched noise as he breathes. When my mom, Kayelee, and Jonald came to visit, Kal's oxygen levels dropped to 82 as I was leaving the room. It stayed pretty steady around 85 after that, so the nurse decided to put the blow-by (oxygen blowing on his face) next to him. Also, after talking to the nurse practitioner, they ordered an X-ray to be done. They found he has a little bit of fluid in his lungs and some of the small air sacs have collapsed. They didn't seem too entirely concerned, though, as they said this is common among patients that stay on the bed a lot and do not have much movement. It's because the lungs are not getting worked enough to stay as strong. Anyway, they said as long as he didn't get more fevers or have more issues with his oxygen levels, that is ok. We just need to try and get him up out of bed more often to get his lungs working more. On the other hand, if he continues to have those issues, they may possibly take a CT scan of his chest to make sure there is no fungal infection going on the there, just for good measure. The only other thing they saw in the X-ray was that his heart looked a little enlarged, but upon comparing it to the X-ray done in May, it looked about the same. Therefore, they're not too concerned with that unless other issues persist or arise that would make them want to do an echocardiogram.

So, now we continue to watch, wait, and pray.

Still gave me smiles for a short moment tonight- I'll take all I can get! :)

Day +22: Sleepy Day

 
Last night wasn't too bad. He was a little restless, and woke up around 3:45 a.m., but fell back asleep quickly after a nice rocking. Also, Kal spiked a fever again around 1 a.m. up to 39.1. He kinda held on to that fever until around 4 p.m. today, going up and down in his temperature.

For the majority of the day, Kal was sleeping. He would have moments where he would open his eyes for a minute or two, but then fall right back asleep again. Seriously, he slept alllll day, from last night until around 5 p.m. today. It was so sad to see him just lay there most of the day and just look so terribly exhausted. I guess maybe he was trying to sleep off his fevers. Whenever he would wake up during this long snoozing time, he would be really gumpy and start crying. This just broke my heart, as Kal has been a champ most of the time when it comes to pain, until these past couple of days. He just looks and sounds so pitiful.

Sleepy, sleepy boy...

Another reason why Kal may have slept off the majority of the day was he dropped significantly in his hemoglobin and platelet counts. This can make the heart rate increase (due to needed to pump the lower amount of blood cells around to get enough oxygen) as well as cause fatigue. After he got both platelet and blood transfusions, we expected Kal to perk up quite a bit, as is normal for him to do after a transfusion, but he didn't really do so. This was kind of disappointing.

Around 5 p.m., despite the nurses wanting Kal to sleep a lot to hopefully fight off whatever is causing his fevers, they decided to wake him up and make sure he was doing okay. This is a precaution to make sure he really was capable of staying awake and not just being lethargic. To help him wake up, they decided to give him a bath. He really enjoyed that and just laid there and let them do their sponge bath magic. Haha! After that, they let Kal play in the water of the little pink tub and he was enjoying splashing a lot! He got the nurse pretty wet, but we were all happy he was awake and acting like he was enjoying something. It was super cute!

After that, one of the nurse techs wanted to snuggle with him in her lap. She also tried feeding him some Pedialyte in a bottle, and Kal was chugging that stuff! Too bad once he finished the bottle, he puked it out on her lap. What a stinker boy! Hehe.

Getting some Mama snuggles after he finally woke up!

After that, he was kind of half-awake, half not. I stepped out to grab some dinner, and when I came back, the nurse informed me that it sounded like Kal was having a harder time and working harder to breathe, so she had called the nurse practitioner to come and see Kal. The NP agreed with the nurse, and ordered a nebulizer for Kal to try and open up his airway more and loosen up whatever is in the way of his airway. As of now, it can be given to him every 2 hours, as needed, and will be using just saline water in it.

Sleeping again...

Kal threw up 2 more times after that. There was about an hour that Kal was awake, playing, and very happy. It was like he was back to his old self again for a brief moment! Then, he was tired again and he was off to bed already. Hopefully tonight will be fever-free and he will breathe all right, without the help of the nebulizer.

Day+ 21: Fevers Down and Smiles Up!

Last night Kal was very restless. For the whole night, he had a fever that would go up and down. Finally, around 6:30 a.m., I think he was just tired of trying to sleep and was up for the day. While getting his vitals this morning, his fever even creeped up to be 39.2. All we could do is to continue his antibiotics and Tylenol and wait.

Not feeling so great this morning... :(

He fell asleep while I was out at the blood drive and stayed sleepy for a good chunk of the day after that. Kal was asleep off and on from about 10:30 this morning until about 5 p.m. I bet he was just exhausted from everything. Also, I think his body was just trying to sleep off that awful fever. Because of the rough night we had earlier, I decided to get a good nap in, too. During his nap, Kal also got another platelet transfusion.

Kal was playing "Mr. Sleepyhead" most of the day.

Apparently all of the napping worked though, because the last time he had a fever (at 38.1) was at noon today. Woohoo! Fingers crossed and prayers that he won't have another fever that pops up!

Finally waking up from his nap a little...

Daddy (Jonald) came to visit Kal after he got off work. Kal was really happy to see him! Jonald was teasing that Kal's fever went down because he finally got some Daddy snuggles. Hehehe. Whatever it was that made his fever go down, I'm certainly glad it worked! Kal was mostly back to his old self again chatting it up, smiling, and kicking his feet like the silly little baby he usually is. It was great to see him like that! How come he saves all his smiles for Daddy, though, huh?! Haha oh well. I guess Kal is just tired of his 'ol mama and missed his sweet, fun daddy. (;

I'm so happy Daddy came to see me!

I always save my best smiles for Daddy, hehehe.

During the evening, though, Kal threw up 3 times. Granted this is still a whole lot less times than he was vomiting over the weekend, but it is still something we need to watch. It's perfectly normal to still be gaggy and throw up a few times a day after being discharged from the hospital. But, the fact that he had been doing so well not throwing up earlier today as well as yesterday means we need to keep and eye on it.

Thank you for all of your prayers!!!

Day +20: Going good! (Maybe I Jinxed It)

 

Kal woke up this morning around 4 a.m., being very restless. He was restless through the night, but that time he became awake enough to have a hard time going back to sleep. It took about an hour, but he finally fell back asleep with me rocking him. When I woke up later, around 8, I promised myself I would give myself a nap whenever Kal would take a nap next.

Kal has been doing fairly well today. He's just been very restless, but only threw up twice, and the volume is much less than it has been. Hooray! Because he's been restless, though, it took me forever to try and get him to take a nap today. Seriously, I was trying for about 2 and a half hours to get this kid to sleep. His eyes would be closed and he would act sleepy, except that he was super squirmy and kept kicking his legs. The nurse told me this is also a sign of withdrawal. To help, we finally decided she should give him some anti-anxiety medication, which is common for BMT kids to get to counteract the affects of withdrawal. Once he got that, it seemed to settle him down so both he and I could get a good nap in for the day. Yay!

Last night and today, Kal has been going to town trying to suck on his pacifier. This is a great sign, showing his mouth sores are healed enough for him to do so. I tried giving him some Pedialyte and he actually took about 30 mL (about 1 oz)! He even wanted more, but the doctors told me to not give him more than that because his tummy is still learning to work again and we wouldn't want to overdo it. I tried to give him a little formula later on in the evening, but he only got about 5 mL down until he started gagging. Still, anything is progress!

Drinking Pedialyte, like a boss!

My dear friend visited me this afternoon and dropped off some goodies. She is so sweet and thoughtful. It was great to chat with her. Soon after, my mom and Kayelee also came to visit me. They brought me some dinner, and Kayelee and I went down to the playroom while my mom got some good snuggling time in with Kal in the room. Visitors always brighten me day! (:

So, I was thinking maybe we would actually be going home either tomorrow or Thursday, but after speaking to the nurse (who asked the nurse practitioner), she said they were estimating hopefully being discharged by the end of this week. I don't know if that means Friday (by the end of the work week) or this weekend sometime.

Kal has been much more awake and alert these past couple of days! (:

Okay, ooops! I must have jinxed it, actually. Wellllll, right now, as I was typing, Kal just became pretty restless in his bed as he's sleeping. The nurse just took his temperature, and it's 38.3 degrees Celsius (they use metric system here in the hospital), which is equivalent to 100.94 degrees Fahrenheit. Anything above 100.4 is concerning to them and is considered a "true fever." They will be taking some blood cultures and putting him back on antibiotics for good measure. When Kal engrafted, the doctor told me as long as Kal doesn't have fevers or signs of graft-vs-host, we should be sent home in roughly a week after his engraftment. If he would get something like a fever, for instance, he said, all cards are off the table. Well, if that's true, it looks like we might have to stay a little longer than planned. We'll have to wait and see what the blood cultures come back looking like. Well, poo...

***Update: Nurse just took gave him Tylenol, did blood culture tests and then re-checked his temperature. He is at 38.7º C now, which is 101.6º F. He is calling the on-call doctor or nurse practitioner to inform them, and said they will most likely start him on an antibiotic.

Day +19: Strummin' Along

Last night wasn't too bad. I'm a little exhausted from when Kal woke up around 5 a.m., though. The nurse was doing great to be so quiet during the night earlier, but then when she had to draw labs from Kal, his lines were not letting out much blood for the lab sample. Sometimes when this happens, it helps to sit the patient up and sort of wiggle their arms or make them angry to get the blood flowing easier through his central line. Since she was required to gather those labs, as much as she hated to do it, she had to try and sit Kal up to get his labs for the day. Unfortunately, she was unable to get enough blood for the sample, so she had to administer something called TPA, which is supposed to clear out any small clots/flaps that are covering the opening of the line into the bloodstream. Obviously, this whole ordeal upset Kal, so he was wide awake after that. I swaddled him back up again and rocked him until he fell back to sleep. This whole process took about 2 hours. Therefore, I was only able to get one more hour of sleep before the nurse tech came in for vitals at 8 a.m.

Napping after that short, early-morning wake-up. Look at those poor, cracked lips... /:

I promised myself I would take a nap later today to compensate for that interruption in my sleep, but I never did take that nap. Kal has been pretty restless today, so it's been hard for him to settle down for a nap. When he does fall asleep, he usually is still restless and wakes up from his rapid breathing, rapid heartbeat, and/or restless legs. The nurse told me today that this was also a sign of withdrawal symptoms. Therefore, Kal only got one good nap in today, and during that time I was eating dinner. Just so you know, when it comes down to food vs. nap: food wins every. single. time. (;

Finally taking a good nap!

So, instead of Kal being on the PCA pump now, the plan is to put him on oxycodone to help cover some of the bad withdrawal symptoms and then wean him off of that. Today, he was scheduled to get it every 6 hours. Tomorrow they may try giving it to him every 8 hours, and so on. I think the oxycodone has helped kind of take the edge off a little bit from the withdrawal symptoms. Kal has only thrown up 6 times today, I believe? That's way better than the 9 times he threw up yesterday! It sounds gross and weird to be still excited about puke, but in a place like this, any less puke is very appreciated. There were still some times of dry heaving too, with nothing coming out. In addition to all the things I've mentioned before, he's had an issue with diarrhea, the shakes, excessive yawning, excessive sweating, and random irritability. 

Having a happy moment and giving me little smiles.

Kal also had to have platelets again today. His counts were actually just slightly high enough by the standards of the parameters the doctors have set for required number of platelets. But, because he had thrown up so much already in the morning, his cracks on his lips and nose were actively bleeding, which is really bad when your platelets are so low. He did great with the transfusion, though.

Most of the rest of the day was just riding out the puking. The thing we are really waiting for is for his stomach to settle a little bit before they switch his immune suppressant to and oral medicine. This is because it would be much more concerning if he threw that medicine up, and having too low levels of it could cause issues of graph vs. host to possibly arise. Once he is able to take that medicine with less issues, I think we will be mostly set to be allowed to go home. The hope is sometime this week, maybe within a couple of days, that we can go home!
We need your prayers that everything will go smoothly that he can be discharged with no complications, please. (:

Apparently our mommy-son movie night wasn't that interesting to him, hehe.

I'd say the highlight of my day was when the music therapy volunteers came in to visit Kal. Oh my, his eyes got so big and were full of wonder and amazement as he heard those girls sing and play some instruments. His favorite was the guitar. The volunteer placed Kal's hand on her guitar, and Kal wouldn't let go. He just sat there with the biggest eyes ever. I think he just loved it so much, he didn't know what to do! Even after they tried to pull away the guitar from off his bed and allow him to play with other instruments, the moment she propped her guitar back on his bed, he went straight for it. It looks like we might have a future guitarist on our hands, hehe!