Doing Better: IVIG Induced Meningitis Recovery

I’m still sick, but I’m doing much better. Jake, my parents, and my sister are taking great care of me. I feel so grateful to my family. I feel so grateful Jake saw how sick I was and called all of the right people in terms of nurses, doctors, and family, then made the decision we were going to the ER, all without even needing to ask me what he should say or do. I think that’s something really special. He did double check I didn’t mind him calling people because he didn’t want Healthier Jackie’s wrath upon him once I bounced back.

Between Jake and my Mom both being there, I felt very safe letting go of monitoring what the people in the ER were doing. My sister ran errands for us all night long so he could be home with me and right now, Jake is picking up food for me from my parent’s house so I don’t need to worry about cooking. My Dad even ran and got me a sleep mask while I was still in the ER to block out light and my aunt offered to come too. I am thinking the ER may have started to wonder if they had a celebrity patient with all the visitors!

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I slept 13-14 hours last night. Yesterday, my babysitters even deemed me well enough to be left alone for 6 hours! I have been keeping down drinks and a bit of food. The food is requiring Reglan to exit my stomach in a timely manner which is a POTS thing. The good news is, I barely even remember the past few days because my pain medicine (Dilaudid) is as strong as morphine and Phenergan (nausea med) makes me a zombie lady. Today I had some Emma time which was very nice, but exhausting. I felt the headache start to creep back and went back to resting (okay, and Jake may have suggested this should be my last thing I do sitting up with Emma so I don’t crash)

Even Emma (5) helps out. Jake sets such a good example to Emma of how to treat someone who is sick, although she does add a bit of her own attitude to it. Imagine this said in the tone parents use to tell their kid something they’ve said a million times, complete with eyebrows raised and a hand on her hip:

“Ya know Jackie, you could have called for me and I would have had Daddy get you more water and brought it to you. You really didn’t need to stand up.

There’s not much to say to that aside from, “I’ll do better next time!”

To try and prevent this from happening again, we will be doing 30 gram infusions every 2 weeks instead of a 60 gram one every 4 weeks, running the IVIG half as fast, and pre-medicating with Tylenol and Benadryl then taking additional doses every 4 hours whether I’m symptomatic or not. This makes sense to me because I was fine the day of the infusion; it was the day after that the symptoms came.

Jake says all of this struggle could be a good sign because most superheroes go through a period of discomfort before gaining their superpowers. Peter Parker didn’t feel great after getting bit by that spider but then he became Spider-Man.

17 thoughts on “Doing Better: IVIG Induced Meningitis Recovery

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  1. I am so happy that you are feeling better JACKIE. You just listen to E and you will be fine. Sure hope the next time isn’t so awful for you, but sounds like your doctors have figured out how to do it. As far as super heroes go, I think you have been one for a long time. Love you

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  2. Hi Jackie,
    So sorry your IVIG experience ended up like this. It was always going to be tricky balancing things I guess with your POTS but you have enough to deal with. Jake, E and your family sound so beautiful but sound like they’ve also been so worried about you and are going through their own bit of hell.
    It might be a good idea for Jake to tell E about things she can do to help such as calling 911 but also reminding her that she is not responsible for you either because sometimes kids can take too much on board. We also remind the kids of all the people that take care of them so they feel secure as well.
    You and your family are in my prayers.
    Love & God Bless,
    Ro

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    1. Thank you for your tips about E. She definitely enjoys the opportunity days like today present to boss me around/tell me to rest. I am never alone with her when I am sick, so always ask Jake if I need something I can’t get myself. Sometimes she runs ahead of Jake to the kitchen, shouting she would like to do it, other times she doesn’t and continues doing what she is doing. She is never expected to do anything with my health, even get me more water, unless she offers. We call issues like what you describe “grown up problems” when we talk to her about them.

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      1. Hey Jackie,
        I love that term”grown up problems”. I will share that with Geoff and start using that with the kids. It applies to so many things. Thanks very much xx Rowena

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    2. I thought I’d add: You couldn’t possibly know this, but what you described is my biggest fear. When I read it, my heart raced! I am as honest as is necessary with her about my limitations, however I take so many steps to make sure she doesn’t feel how you described! She knows my symptoms are my responsibility to manage, not hers. I don’t even ask her to make less noise. I put in earplugs so she can just be a kid. Now if I have in ear plugs, white noise, a shut door and she STILL sounds loud, that’s another story!

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      1. Hi Jackie,
        I’m not surprised that’s your greatest fear because I’ve been severely ill ever since my daughter was born 9 years ago and so I’ve been living with this for awhile. Fortunately, I go through extended periods of remission where it’s not so intense and I can be more myself. When I was finally diagnosed with dermatomyositis, I was hospitalised for 7 weeks and our son was quite traumatised by that. His development froze for probably 6 months and he was very angry with me. I found it very difficult to find any useful information so I rang the Cancer Council. They put me onto Westmead Children’s Hospital’s social worker and they advised me to explain what my health problems were. Tell them who is also there to look after them. The cancer council booklet also mentions that you’re having treatment.
        I think it is good for kids to develop compassion and empathy for others.
        Also, while I’ve been blogging, I’ve come across a lot people who are battling something and that reminds me that our family is not exceptional in dealing with my disease. Another blogger was talking about her “lot” and that made sense to me too.
        I don’t know if you have explained POTS to E but if not, probably a good idea. Kids can overhear things and their imaginations can paint a worse picture of what is happening. The cancer council told me that and it was when I spoke to them, that I( realised that we hadn’t said anything to the kids. They were 3.5 and 18 months at the time so that was difficult but we have ongoing conversations as they get older. My son is now ten and when people ask him what I’ve got, he replies: “You don’t want to know” because he knows how it’s difficult to pronounce and no one has ever heard of it.

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        1. I am sorry what you went through with your son and such a long hospital stay. I am happy things are running more smoothly now!

          I think maybe my psych/child studies background helped me know how to handle the situation. E doesn’t know me any other way than sick since I have been around since before she was 2. She asks me all sorts of questions and the way she asks them tells me she is comfortable because the tone is just like any other conversation we have. Our approach is explaining everything to E matter of factly but not in more detail than she needs.

          She knows my stomach gets sick, my heart beats too fast, I need to lay in bed a lot, and sometimes others parts of my body do not work right. She learns other tidbits, like my fevers, along the way. She knows nothing wrong with me will kill me but that it might not get better. She knows I will never stop trying to get better. She knows this new treatment may help me after awhile, but it might not.

          I will tell her we are going to have a fun day and I will be worn out afterwards (learned early on to tell her this so she isn’t disappointed when I am back to bedrest) but I will not be sad. I will be happy because we got to have fun. She knows her and Dad going and doing fun things makes me happy, not sad. I always ask for pictures if they feel like it so she can tell me about it once she is home. She knows I am always open for a cuddle or a lying down activity like reading and why I can do certain activities but not others. She knows I want to be better so we can play more. We’ve had chats about if she will gets POTS. We even had a chat comparing notes on getting shots. On and on and very open. To me, the conversations are a big deal, but to her, it is just a question she asked in passing before she turns her attention back to whatever it is she is coloring.

          Before we knew how sick I was, she was 2 and we had an action packed day. I was in the bathroom throwing up and heard a little E voice say, “My Jackie spit up? Here!” and offered me a tissue. It is just her nature to help others which I can definitely relate to. She is always wanting to help everyone out and is conscientious.

          I am happy about the fact we are a stepfamily for many reasons, but one is that E has a healthy mom and therefore isn’t constantly experiencing life with a sick parent.

          I have an unfinished blog post on this that has been sitting in my drafts for over a year! I hope to get to it soon.

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    1. They so were! I feel fortunate to have so many people I can count on not only being there, but wanting to be there.

      The vomiting and extreme sound sensitivty came back today. From today on, I am just going to deal with being a medicated zombie for an extra 24-48 hours from whenever I am side effect free rather than stopping meds as soon as I think I am able.

      I had a weird 5 minutes this morning where nothing in my body felt like it was working wrong and my head was completely clear. It easily could have just felt that way due to waking up normally after being heavily medicated for several days, but I will choose to see it as a sign IVIG will help!

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