Just Breathe...

Here is where I will try and explain (to the best of my memory) the happenings since the beginning of the year until now. The thought of doing so makes me exhausted, to be honest. I'm exhausted. But, for the past few months, my memory has been very foggy, so I better record these things before I can barely remember anything at all. Some say it's all the stress making me forget things, others say it's the lack of sleep. I think it's my body and mind trying to cope with it all. If I remembered everything, I would most likely have a nervous breakdown and not be able to function. Therefore, my lack of memory lately had forced me to face much of what is in the day-to-day of things. I can, and am, just trying to survive one day at a time. I can't look too far in the past, and apparently neight can I muster much insight into the future. Every day, every hour, can change things dramatically, so I have been trying to take things as they come.

Since I already previously wrote about Kal's hospital stay in January, I'll skip that part. After his discharge, Kal was not fully better, and was still fussy and acting sick. Every weekly appointment, he was on the fence of being admitted again. It was as though we are constantly hanging in sick limbo. Then, momentarily, we had a break! At 15 and 1/2 months old, Kal finally learned how to crawl! It was a beacon of light amidst all the darkness. We were so proud of him, and he was very proud of himself and his new skill. We thought only brighter days lay ahead for Kal, and that he was finally getting the strength and health to live a more "normal" baby life.

Clinic appointments are always exhausting- especially when you're almost always on the verge of being admitted.

Then, the beginning of February came along, and Kal had a fever one night. It was actually his first fever since being in the hospital for his original BMT stay. We took him in the next morning, and his white blood cell count was extremely high, indicating he was fighting some sort of infection. Luckily, he was negative already for RSV and paraflu since his last admit in January. But, they never ended up finding a specific cause for his infection. His lungs were inflamed but not extra concerning, despite him needing some extra oxygen. He was put on antibiotics to be safe, even though his blood cultures came back negative. He ended up staying a total of 6 days. What kept him a little longer was the fact that he was so irritable and for some reason, he needed extra oxygen when he was sleeping. He was not my smiley, happy Kal, and my "Mama instincts" told me something was up. Eventually, though, they couldn't keep him inpatient for being irritable, and they sent us home once his bloodwork looked normal again, with him being on oxygen during naps and nighttime.

Near the end of his stay, though, the doctors finally agreed with me and Kal's speech therapist that his vomiting and lack of improvement in his oral aversion had gone on for far too long. They ordered a swallow study to be done on our way out from being discharged from the hospital, and, like I had predicted, he failed miserably. The results of the study showed he aspirates, which means instead of food or water going in his esophagus and down to his tummy, it would go into his trachea (airway) and into his lungs. Well, no wonder he doesn't want to eat! He feels like he's choking and drowning every time he tries to swallow any kind of food! Poor baby...

Just laying around, waiting to get better... (February inpatient stay)

Upon his next clinic visit, they reviewed the results of his swallow study, and then ordered an upper GI study. The results of that study showed Kal also has bad reflux issues. This could be the cause of inflammation in his esophagus, thus also contributing as to why Kal would not want to eat and swallow food/liquids. The next week, he was set up to change his NG to an NJ tube (meaning the tube would go farther down, past his stomach, into the beginning of his intestine.) But, in the long run, they wanted him to be placed with a G tube (goes straight into the stomach). The NJ was just a temporary fix for the reflux until he could get scheduled with surgery for his G tube placement. So, then we were off to meet with the surgeon that next week and he agreed that a G tube was necessary as well as a Nissen procedure (surgically wrapping the top of the stomach around the esophagus to prevent him from having reflux and throwing up). Actually, although the G tube would not be permanent, the Nissen would be, meaning he would never have reflux again, nor would he be able to throw up ever again. The surgeon had an opening for the following week, so we made the appointment and were set to go.

On the in-between time, we tried to enjoy life as much as we could, for we actually knew for sure when he would be going into surgery and be admitted into the hospital next. What an idea! Actually planning to be admitted, and not some weird, random, lingering infection from out of the blue?! Hahaha it was a weird feeling to plan him being admitted, according to our schedule, to say the least... (;

Kayelee certainly enjoyed us all being home together and fairly happy, for once. She even started playing well with Kal. It was so sweet. She thought it was pretty funny when Kal would wear her princess accessories. Also, Jonald and I tried to make it a point to take turns taking Kayelee on a date once a week. With everything going on with Kal, I have a hard time sometimes remembering that I have another child that needs attention and love, too. On occasion, she seems resentful that Kal gets so much time with us and attention, while we ask for so much patience from her. I forget she's only 3. My poor, sweet girl. It's so hard balancing my sanity with Kal and all the needs he has, let alone stretching my time, energy, and love over to her. These "dates" that I have gone on with her have been so fun and such a great idea. My favorite "date" with her would definitely have to be when we went to see "Disney On Ice" together. I thought it would be super corny at first, but it was so cool! It was so cute and sweet to see Kayelee get excited over all the characters and princesses she knew. She's growing up so fast right before my eyes, and most days I fail to see how much she's growing until I have almost a whole new, little girl in front of me. She really is so patient with me, and I love her so much for that.

Living it up, playing "Princesses" with his big Sissy

Mommy-daughter date to Disney on Ice!

The morning of the surgery, my stomach was in knots. I knew I wanted this to be done for Kal, and knew the benefits outweighed the risks, but there's something eerie and unnerving about handing your child off to a stranger, knowing they will put him to sleep, cut him open, mess with his organs, and sew him back up again. Ugh, my ears start ringing just thinking about it. Anyway, thankfully, the surgery went well, and they called us in to meet him as he woke up. When we walked up to his crib, he was crying in agony. It was one of the saddest cries I've ever heard come from him. They gave him some more pain medicine. Still, his cries persisted, and they called the anesthesiologist to come in a prescribe more pain medicine. I tried adjusting his blanket for him so he could be more comfortable, and caught a glimpse of his new scar and G tube. It was a much bigger scar than I had anticipated. I couldn't handle him being in so much pain. It just my heart. It hurt my head. It hurt my stomach. It hurt my soul. My head started spinning, and I felt as though I was going to vomit. Luckily, I found a chair nearby to sit in to taking a few breaths and pull myself back together.

Right after surgery. He was in so much pain; it hurt for me to see.

His two new warrior scars. <3

His little hands give me the strength to be strong for him.

Kal was scheduled to stay in the hospital to recover for 4 days, and they were so sad at first. He couldn't sit up, roll, or even hardly be held without whimpers. He was attached to a tube down his nose and throat that suctioned out any mucous or blood build up. Finally, after the first two days, they took that tube out and Kal felt like playing a little. Although he couldn't really sit up, he played with some toys while laying down. He must have worn himself out doing so, because the next thing I knew it, he was asleep with toys surrounding him and his head in the bucket that used to hold the toys- hahaha! It was nice seeing him start to act more like himself again. After successfully tolerating his feeds in his new G tube, he was allowed to go home.

Enjoying his "Welcome Home" balloon

Once returning home, Kal got better and better every day. We saw him taking strides in many aspects. Overall, he seemed happier to not have that tagaderm dressing on his face to hold the feeding tube in place and not have a tube down his throat. He started taking sips from a sippy cup! It was so cute how proud he was and how satisfied he seemed to be when he learned how to use the straw of the sippy cup and feel the refreshing water in his mouth. I can't even imagine how it must have felt to have no food or water in your mouth for months on end. The next stride he made was with his mobility. He started to crawl faster, climb the stairs, and pull to stand! He got to the point where I could be distracted for 30 seconds, and he'd already be at the top of the stairs, happy as a clam! I thought, for sure now, we had seen the end of his hospital stays. Perhaps I should stop thinking that, because I may be jinxing myself...

A few weeks later, the stomach bug, rotavirus, hit our house. Kayelee was the first to get sick. She was throwing up 8 times the first day and having diarrhea. We even had to go to the InstaCare to get some anti-nausea medicine for her. The next morning, I went to pick up Kal from his crib as usual. He was grey and sunken in. His clothes and two blankets were soaked in diarrhea. My heart skipped and beat and my heart sunk. I knew something was terribly, terribly wrong. I called in to the BMT clinic, and they suggested they see him. That was the fastest I've ever seen the nurse practitioner come in that room. No wait time at all, and Kal was hooked up to a bolus IV and ordered to be admitted into the hospital. He was severely dehydrated and his stool sample came back positive for rotavirus. On top of that, he had SIX teeth coming in all at the same time. That poor baby was miserable, and only wanted to be held on my lap constantly.

Terribly dehydrated little boy :(

That afternoon, I started to have chills and my stomach was in knots. My head was spinning, and I could barely stand long enough to change his diaper. My husband chose to stay home from work to take care of Kayelee, as she was still sick with that highly contagious stomach bug too. After a few days of this, Jonald told me Kayelee's doctor suggested she go to the E.R. to get some fluids because she was still having issues with vomiting and diarrhea. Then, in the E.R., her bloodwork came back showing her electrolytes were off and her blood was acidic, due to dehydration, and ordered her to stay in the hospital over night. Goodness me. So, then, I had two kids in the hospital at once with the same bug, on two different floors of the hospital. On top of that, that night, my stomach and immune system couldn't take it anymore. I turned pale and caught the bug too, vomiting and having diarrhea all night long. I wouldn't wish that experience on my worst enemy. Ughhh.

Sleepy girl not feeling too well

Kayelee's turn to stay in the hospital

Finally, we called in the recruits, my mom, to come in town and help us out. After Kayelee was discharged, my mom watched her all week while Kal and I recovered in the hospital together, so Jonald could go to work. Kal had a hard time tolerating his feeds, so they decided to turn off his food and let his gut rest for a few days. Then, they started by trying Pedialyte and working up on that volume. Once that was successful, they worked up on his feeds, starting at 5 mL an hour and working up in 5 more mL an hour increments, each day, for the next couple of days. With me feeling so sick as well, I had to really learn to take the time to take care of myself. If I didn't, I would definitely end up in the hospital myself, and then what good would I be to Kal while he's in the hospital? I started forcing myself to eat little by little, and chug Gatorade all day.

Staring at the freak April snow storm from afar

Feeling good and acting as cute as ever!

Finally, after a few days, Kal and I were finally back to our old selves again, apart from being a little sluggish from being sick! Kal even surprised us by starting to try foods, such as a banana, muffin, the breading off chicken nuggets, mashed potatoes, and mac n' cheese! It was so exciting, especially because before, he had not wated anything to do with food in his mouth, and would gag uncontrollably at the feeling of something on his tongue. I guess he was feeling tons better, his G tube and Nissen procedures were totally worth it and working, and/or maybe his feeds were turned off long enough to make him starving, hahaha. Either way, we were ecstatic. After 10 days in the hospital, Kal was finally discharged. I swore this would be the last time he'd ever have to stay in the hospital. Yeah... I've gotta stop saying that...

Nomnomnom- bananas!

Kal was discharged this past Friday, and yesterday, he started gagging a lot and having diarrhea all day again. He began to look pale and sunken in again. I called the nurse practitioner on call, and she instructed me to watch him overnight and call her in the morning if there was no improvement. After that, we needed to change his dressing, and he fell asleep on the floor as I was doing so. He was out like a light. Even after putting his shirt back on and picking him up to put him in bed, he was still out of it. I started to get worried then. I called his name over and over, and started patting his chest. He wasn't waking up at all. My heart sunk. I was about to call the nurse practitioner back, when I had the idea to tickle his feet and see if he would respond. His foot twitched and moved away, and he moved his face out of the way when I kissed his cheek repeatedly. That meant he wasn't unconscious, at least, but it scared me into checking on him three times last night to make sure he was still responsive. In the morning, before I could even get a chance to call the nurse practitioner, she called me. I guess she must have been extra worried about him to check in on him right away. I told her he still looked pale and sunken in, so she instructed us to come in for fluids and see his bloodwork to know if he had to be admitted again. Well, it seems like her plan was to admit him anyway, because when we got to the room, he already had nurses waiting for him and his name on the door and the white board in his room, saying, "Welcome back, Kal!" Good thing I actually packed a bag this time, just in case, haha!

Just feeling yucky again

Kal's bloodwork showed he was very dehydrated, as well as his potassium being low. He is set up on TPN, lipids, maintenance saline, potassium, and steroids. They said they "want to get it right this time" and make sure they know the cause of his coming back in so soon. They said they'd be surprised if it was still the stomach bug like he had last week, and that it could possibly be graft-vs-host-disease. They set him up on steroids because they feel since his body is off the immune suppressants and he's been sick recently, that perhaps his body isn't keeping up with making it's own stress hormones. Therefore, they need to replace that with a hydrocortizone IV every 6 hours. All day, this poor baby has been worn out and whiny. He has been off and on either asleep, staring off into space, or whining. Finally, he fell asleep about 7, and hasn't really woken up since. I think he's just absolutely exhausted. It's so heartbreaking to see him so out of it. I hope we get some definitive answers soon.

He was staring into space most of the day... Breaks my heart );

One day at a time... one hour at a time... just breathe.

Drowning In A New Ocean

So, I haven't updated you all in quite some time- since early September, to be exact (except that random January post)- about the details of Kal's recovery after being discharged from the hospital. Other than that, the last time I wrote a post, Kal had just returned home from an additional hospital stay (aside from his main BMT course hospital stay). And now I'm here, sitting in pieces of what I used to know of myself, in April, with a long story to tell.

I started writing this post back in January, and have just barely had a moment and enough "oomph" to come back to it and face it again today. I was talking to another mother of a boy with CGD, who was trying to make the gut-wrenching decision of whether to have her son get a BMT or just continue through with prophylactic medicines. She told me how much my blog had meant to her when I had kept up with it, and it made me feel that perhaps this blog was making more of a difference that just being a chronicle for myself and my children to read in the future.

Originally, I have been writing this blog mainly as a form of therapy for myself. Another reason is for my children to read someday and hopefully love me, as their mother, for all of me, my strengths and weaknesses. Now, in addition, I am writing this for those who have been wanting a detailed update on Kal. Furthermore, I just want people to understand what it's like to live in the reality I know now.

I have been debating on whether to write this post at all. This post will include parts of how Kal's recent adventures have been, but it will also show perspective on what it has been like for me, as his primary caretaker, since coming home with Kal from the hospital. And in the words of a wonderful friend who knows, "It ain't pretty." This post may seem like a never-ending rant or complaining. I hope you don't feel that way once you're finished reading this. I just want to show you the whole, ugly, truth of life as I've known it with Kal for the past seven months.

Shewww. Okay.

So, first off, Kal was admitted into the hospital again for about 4 days in the end of September. It was for about the same thing as the time before- fast breathing, throwing up, irritability, low oxygen levels, etc. He had still been on oxygen since his previous hospital admission, but his oxygen needs seemed to be increasing again. During that hospital stay, the doctors ran several tests and found out he had a pericardial effusion. This meant he had an abnormal amount of fluid between his heart and the sac surrounding the heart. This put a strain on him being able to breathe as normally. Also, they decided Kal was dealing with the graft-vs-host disease issues with that and his GI system, since he'd been throwing up a ton and having bowel issues. In addition, they guessed he may have been fighting off some virus. Luckily, the fluid on his heart wasn't increasing, and over the course of his hospital stay, his oxygen needs were lowering. Hence, Kal was able to be discharged after those 4 days. Woohoo!

So, we were home free! Or were we?

See, that's the catch 22. When we got home from that second hospital stay, we were just all so exhausted we wanted this roller coaster to be over already. When Kal was in the hospital, we wanted to be home. When we were home, I wished to be back in the hospital again. I thought being home, sleeping in my own bed, showering in my own shower, etc. would be a welcome relief from hospital life. But boy, was I wrong. When I am home alone with the kids, there are no nurses to help me with the long list of Kal's oral medicines, his IV medicines, and his food for his feeding tube. There is no one to ask random medical questions on the spot when a concern arises. There is no one to watch my kids if I need to walk out and take a breather for an hour because it is all so, so much to handle. The responsibility during the day was solely in my hands, and that is a scary thought. I know I'm capable of taking care of my children, but if something medically serious happened to Kal, it would be on me. To this day, I worry I will go to pick up Kal from his crib and he will be gone from this life. With bone marrow transplant kids, things can happen that fast. There could be some unknown issue or infection that could wreak havoc on his delicate body at any moment. It's honestly terrifying.

Amidst all this havoc, we felt we were getting used to this new life. My father-in-law also flew in to stay with us and help us around the house and with my daughter. Kal began to feel better, and was happier than we'd seen him in a long time. That's when we got a tad bit overconfident... and adopted a puppy. We thought the hospital stays were behind us and had been dying to have a pet to add to our family. We thought after all we'd been though, a dog would liven things up in the house and have a fun start to Kal's (and our) new life together. Welllll, let's just say we were a little in over our heads. About 2 days after getting the puppy, Kal started going downhill again. His pericardial effusion was going away, and he was constantly grumpy, clingy, coughing, and stuffed up. It was completely overwhelming. Luckily, we had some wonderful friends in our neighborhood that agreed to watch our new puppy for a few weeks until things settled down again. What a huge blessing! Although Kal was still very ill after these few weeks, we missed our puppy and brought her back home with us to live after that.

Kal's 1st Birthday rolled around with a huge feeling of celebration and relief that he'd made it that far. I bought him a Superman outfit to celebrate our Kal's life. He may have been born with the name of Superman, but little did we know how much he'd live up to that name. In the morning, he had a clinic appointment. The nurses, nurse practitioner, and doctor sang "Happy Birthday" to him and gave him a little gift. It was sweet and cute.

Spending the first part of his birthday visiting his friends in the BMT clinic

Superman is about to fly away, to save the day!

Birthday Boy turns 1!!!

Later that night, we had a very small get together to celebrate (to avoid as much germs as possible) and gave him a cupcake with a candle on it. He wasn't a fan of the cupcake or the company, but at least we tried. We also went out Trick-or-Treating, for the sake of our 3 year-old daughter, and kept Kal away at a far distance. We even multi-purposed his birthday outfit for a Halloween costume- ha!

She wanted to be Belle for Halloween

Out Trick-or-Treating

It turns out through the months of October through December, Kal was plagued with rhinovirus (the common cold) on and off constantly. Since he had no fevers, we just stuck it out at home and he did not have to be admitted during that time. Even though it was the common cold, that doesn't mean it was any easier, though. He had a continuous cough, runny nose, and vomiting here and there from all the mucous and phlegm building up in his throat. He had several x-rays and even some chest CTs to make sure he wasn't getting any pneumonia or fungal infection, but those were all negative. He continued to be on anti-fungals, though, as his fungal makers persisted to exist, even without evidence of a fungal infection anywhere. He also went through a bout of steroids to help him with his graft vs. host disease (GVHD) bowel and pericardial effusion. After several echo-cardiograms (EKGs), the finally said in December that his pericardial effusion had been resolved! Woo! 

Feeling a little high after sedation for one of his EKGs

Hair is getting longer, and having fun playing with his feeding tube

New sock monkey hat after a clinic appointment- not feeling too well

Just feeling a little yucky, as he had been for a while

Christmas rolled around, and we finally had a little break in his health issues. That was the best present ever! My mom and dad came over for one day, but we didn't have a big get together for Christmas. It was a quiet and simple Christmas this year, but I think I ended up liking it much more that way. We could watch the kids enjoy their gifts, and then just relax and spend time together as our small family. I wouldn't mind having all our Christmases like that from now on. (:

Having fun riding his elephant from Grandma.

Excited for Christmas to come!

Wearing her long-awaited Elsa dress and  showing off her new Cinderella toys

Checking out the Christmas lights

Excitement over his new toy "remote"

As you can see, I want those who have been, are, or will be going through a similar medical situation to know what is has been like, from my perspective. If you're in that category, please know you are not alone. Know the feelings you feel are real and valid. Know that even if I don't know you, I love you and wish I could give you the biggest, warmest hug ever. 

Being the primary caretaker of Kal, not having the option to just get up and go somewhere with the kids, has been terribly lonely. We are literally prisoners of our own home. No church for a year- which, if you know me personally, is a huge part of my life and my core. Also, no taking him to busy grocery stores. Groceries would have to wait until my husband got home so only one of us could go to the store alone and bathe in hand sanitizer afterward. No going out to eat in busy restaurants. *Attempt* to make him wear a special mask when he is in close contact with crowds of people- especially when visiting the hospital. Yeah, except he never allows that. We haven't really been able to hang out with friends or family, unless somehow the stars aligned and neither of our kids were sick at one moment in time.

Honestly, I have been suffering a lot mentally. I have post-traumatic stress from all we have faced so far and all my son has been though. I have depression and anxiety that has turned severe at times, due to all of this stress, lack of sleep, worry over Kal's medical issues, lack of energy, and loneliness. I became worried for my mental health going so far downhill, and therefore approached the wonderful social worker assigned to work with BMT families. She said all my feelings are very typical of patients and family members post transplant, and are very valid. I wished someone had warned me earlier that I could/would feel like this. I have felt so guilty for having these thoughts and feelings. I know being warned beforehand about these symptoms would not have prevented me from having them, but at least I would know I'm not alone... and that I'm not going totally crazy- hah!

If you are a parent of a chronically ill and/or medically complicated child, know you are not alone. Know that there are parents out there, like me, who are feeling similar things, worrying similar worries, and having similar thoughts. Find support. I'm not saying I'm healed of these ailments, but I have come to a point of me trying to accept that I feel this way, and that it's okay. I have approached my doctor about this and have been trying out some anti-anxiety/anti-depression medications. I have also started a sleep aid medicine. Getting a good night's sleep can make a huge difference. Please don't be ashamed to try and get help, whether it be talking it out with a friend, trying a new medicine, going for a walk, taking a nap, or anything that works best and helps you. I am still working on it, but at least I'm trying my best to take care of myself as well in my present situation. I have come to learn that I can't take care of my child as well if I'm not doing well myself. My child needs me- but he especially needs me more as a healthy individual than just someone who is there. <3

Seeing that this post has dragged on far too long, I will update you about the happenings of the 2015 year so far in my next post.