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!

Day +18: Withdrawal

 
Well, last night was rally amazing. I seriously didn't even wake up until about 6:30, but then was able to go right back to sleep because Kal was still sleeping. I hardly heard a peep out of him of his nurse the whole night. It was kind of crazy- I woke up and was confused and surprised at how light it was outside already. Man, I needed that, especially for the day that was ahead of me.

The doctors wanted to take him off of the morphine pump and increase his IV meds to oral meds all together. Since he was cute off from his prescription, he has had withdrawal symptoms- nausea, diarrhea, shaking, and excessive yawning. Poor guy! He seriously threw up like 9 times today, and many other times gagging. Seriously?! 9 TIMES. I feel so bad for how his throat must ache right now. We'll see what the doctors will have to say about all that tomorrow morning during rounds. The good thing is that I was able to speak to Kal's NP regarding all of these changes. She is now on my side, so I think she will be our advocate from now on. (:

So content after his sponge bath today

He even cracked a smile every now and then.

After receiving a platelet transfusion, Kal has perked up much more today. It took longer to get some platelets up here for him, sinc ethey had run out of the platelets that were of his blood type.


Jonald, my mom, and Kayelee came to visit and come to church with me today. After church, Kal started to have moments where his 'old self' would shine through. He was certainly smiling a lot. Sometimes he would even shake his head from side to side when he's overly happy, and I'm pretty sure I got a half gurgly laugh just for a second today! He's on his was to getting a  tiny bit better every day. Woohoo! (:

I was playing pee-a-boo with Kal and he was really enjoying it!

Oh, happy boy! That sweet smile is back!

Day +17: Hanging In There

So, I have to admit: as much as I think he's a wonderful doctor, I got pretty ticked at Kal's doctor today. Allow me to give you a little background information:

Last night was... uugh. I mean, it could have been totally worse, but it was definitely nothing close to ideal. Kal actually fell asleep early for what is normal for him, around 8:30. I figured I would take advantage of the opportunity and rent a movie to watch after finishing my blog update for the day.

Around midnight, Kal woke up puking. It was like about 4 successive puking moments, where he would recover from it, then start puking again and then start the process over. This made a a big mess everywhere, causing the nurse and I to change his blanket, clothes, bed pad, spit up rags, and his diaper. By then, Kal was very awake, despite me rocking him for about 2 hours. So, therefore, around 2 a.m., I could barely keep my eyes open, and I gave up and put him in his bed, hoping he would fall asleep on his own. He did, thank goodness!

Then, about 6:30 a.m., the same process happened, except I had no energy to possibly rock him for 2 hours or more again, so after rocking him a short while, I gave up. I just put him back in bed, hoping he would kick out enough to tire himself out, and went back to bed. I was blessed again that he did end up eventually going to sleep after that!

By the time 8:30 a.m. rolled around, I was toast. When the doctors came in for their daily rounds, they wanted to continue to make changes to prepare Kal for going home soon. They informed me they were going to change more IV medications to give him through his feeding tube. Then, they said they wanted to lower Kal's pain pump dose yet again- despite him throwing up more yesterday and today. The doctor must have noticed my grimace when he mentioned this plan, because he remarked something like, "You don't seem too excited about that." I replied, "Well, no. I just think his throat hurts so much right now," to which he remarked proudly and assuredly, "Oh, no, his throat is all healed by now."

Morning snuggles after a few puking sessions.

Mmmm-kay. Because Kal has been throwing up blood and you ordered the nurse to put in the feeding tube for the reason that it was too painful for him to swallow those medicines.. of course his throat is already healed! (Note the sarcasm here). Nah, bloody throw up totally shows he's all healed up in his throat... not. Whatever, dude. I wanted to tell him to not lower Kal's morphine again today, as they wanted to cut his prescription in half for today and end it completely, cold turkey tomorrow. I feel like his throat still needs a break. Growing up, I was raised to not talk back or question authority figures, but to respect them- especially doctors- perhaps because I have been taught how long their school process is and I thought they deserved some respect for their hark work and learned knowledge over the years. At least the nurse commented she was on my side and of the same opinion as me, but she only mentioned this after the doctor was long gone.

On the other hand, I am Kal's mama. I know him better than any doctor could. I hope to sort out this situation before it's too late and Kal is reeling in a roller coaster of pain again. I guess I need to just put my big girl pants on and confront them and be a little more adamant to them about things. Wish me luck and send prayers for tomorrow! Rant overrrr. (;

Infatuated with his own "selfie" view on my phone.

On a more positive note, we were able to have lots of fun visitors today, though! One by one of my best friends from college and her boyfriend, and the other by a family that has been longtime friends of both our family as well as my husband's family. It was so great to catch up and visit! All of the visitors really brightened the mood from the earlier morning. We are so blessed to have such loving friends and family to support and love us, especially during this time. By them taking a good chunk of time out of their day to visit, it had made a huge difference and gave me strength to face the challenges of the day today- especially with Kal puking about 8 times. May God bless them for their time in serving me and my family by dropping by to visit. It really meant so much to my soul to see and speak with them today.

Day +16: Back In the NG Business

"What could you do better for your children and your children's children than to record the story of your life, your triumphs over adversity, your recovery after a fall, your progress when all seemed black, your rejoicing when you had finally achieved?"
-President Spencer W. Kimball

Last night was great. Either Kal slept amazing, or I was beyond exhausted, because I don't remember hearing a peep out of him. This morning he was pretty awake and alert. He even decided to flirt with one of his lady doctors today. It was so cute- that lady is pretty straight forward with adults, but when she gets around Kal and talks to him, she just melts right away and talks in her little "baby voice" to them. Some people are just meant to work with kids, and she's one of them.

Well then, the conclusion of the doctors, since Kal wasn't wanting to swallow his medicine yesterday, and since I was concerned to try giving the bottle to Kal due to all of his vomiting yesterday, is that he needed an NG tube (a type of feeding tube) put in. Poo. We've been down that road before, and it's not the funnest, but it's not the worst, either. The only difference this time is that he will not have it anchored in his nose with what they call a bridle. This time around, he will have it taped to his face like most people have seen others with a feeding tube. It's no big difference, only that this time around if Kal gets a good hold on it, he can pull it out of position and I would be stuck shoving it back down in place. Yikers. I was there watching today when they put it in, and it didn't seem that difficult, other than Kal was shaking his head to try and escape it. Last time he had it placed, he was sedated because they did it right after he had a colonoscopy and endoscopy. Watching the nurses put it in today, I felt a little woozy at first, but I got over it. Poor Kal looked so sad after he had the feeding tube in as though he was defeated. After a while of good Mama cuddles, though, he temporarily got over it.

I'm just... sad. Not this darn thing again!

Maybe gazing off in the distance will make me feel better. At least I have Mama to cuddle and comfort me.

Ahhh, I'm still sad, but Mama's arms are just so comfy. I think I will just... close my eyes a little... zzzzzzzz

The good thing about Kal having the NG tube is that we won't have to worry so much about rushing to get Kal to swallow his oral meds all at once with a sore, raw throat. Also, we can start to give him a little bit of formula through it, to allow his stomach to start working again. Some people say getting an NG actually makes it easier and faster to be discharged, as it kind of bypasses some of the requirements to go home.

Also, the doctors decided to not lower his morphine again today, as planned. They wanted to lessen the dose amount each day to get him weaned off of it, but from all the puking yesterday and today, they kept it at the same level as it was changed to yesterday.

Furthermore, Kal has been having high blood pressure lately, especially since yesterday. The doctors said that could be caused by many things- inflammation/water retention, pain, or from one of his medicines. To be safe, they lowered the dose of one of his medicines. Also, since his high blood pressure is becoming a trend, he has been prescribed a medication to help with that.

Kal was sleeping a lot today, but then perked up in the late afternoon. Grandpa came to visit and Kal had a sponge bath. Lemme tell ya, that child sure loves to be naked and have his head rubbed with the sponge! That's when he just stays still, as if to say, "Ahhh, that's the spot!" It makes me giggle every time. Sometimes there are days that kick you down, but apparently, according to Kal, a sponge bath spa treatment makes the world feel a little brighter. (;

This is when I turned my phone's camera and screen towards him so he could see himself. Yeah, he was charming up his own reflection. Haha! "Well heyyy there, who's this good lookin' baby, and where have you been all my life?!"