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.
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| Spending the first part of his birthday visiting his friends in the BMT clinic |
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| Superman is about to fly away, to save the day! |
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| Birthday Boy turns 1!!! |
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| She wanted to be Belle for Halloween |
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| 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!
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| Feeling a little high after sedation for one of his EKGs |
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| Hair is getting longer, and having fun playing with his feeding tube |
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| New sock monkey hat after a clinic appointment- not feeling too well |
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| 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. (:
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| Having fun riding his elephant from Grandma. |
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| Excited for Christmas to come! |
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| Wearing her long-awaited Elsa dress and showing off her new Cinderella toys |
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| Checking out the Christmas lights |
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| 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.
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