The IVIG nightmare is over, the home one begins!

    • Anonymous
      December 22, 2010 at 1:15 am

      [/LIST]Hi everyone!!! I wanted to let you all know that my 5 day infusion is now over and I am finally home! I am so glad to be back here where I can control my pain meds based on what my pain is! The side effects of the IVIG were horrible! The back pain was so severe that I unknowingly bit through my tongue overnight in my sleep in order to be able to sleep! It is amazing what the body and mind do to protect themselves from unbearable pain. IU was released on Saturday and my tongue is still numb. I told my neuro this when he visited me at the hospital and asked him why they didn’t just give me a stick to bite on like in the old days, before medicine! I was so furious and still am that I had to endure such pain that made me feel like my back was literally broken! There was no way to accomadate myself or position myself where the pain would go away or even die a little. No, it was full force back pain and migraines with pethetic pain meds to treat them. A patient with a chronic illness who has been on narcotics for years for severe pain, like myself has a high tolerance and the hospitalist refused to even hear me out! I went to my pain specialist on Monday and he told me that the next time I am admitted, that I need to request a pain specialist to see me and treat my pain during the course of the IVIG because a hospitalist just doesn’t understand the pain, or my tolorance.
      Live and learn. I am just so glad to be home. I am dealing with a crisis with my 5 year old that came out of nowhere today. She stayed home with me because of the sniffles and because I had not spent much time with her due to my hospitalization. My 2 year old went to Winter camp, so it was jsut Sabrina and I. At night, when my little one got ome, I could see a changein Sabeina’s dimeaner. She was snippy, rude and jealous of Lauren when I gave her a bath and spent time with her. My husband told me that the daycare said that she spent most of the day crying and asking for me. This is not like my little indemendant Lauren who is so self sufficient she has tried negotiating with me to let her change her own diapers. I chalked it up to the fact that I had been away at the hospital for a week and slept all of Sunday. Monday, I wasn’t much of a mommy either. I need time to recover from the IVIG! That is a luxury that I could not take this session for some reason. She is very atttached to me and wants me to hold her all the time. Today, I did my best to comply. When it was bedtime, of course, she wanted mommy to put her down, not anyone else. This is noramal for bedtime. She and I have a cute little routine worked out where she goes down without a peep. I promise her that I will come running if she calls for me. She gets a kick out of that and it makes her feel as if I am watching over her through the night. I was doing my little routine with her today and Sabrina comes in and just started talking nonsense, like “you love her more than me”. and more obsurdeties. I became upset with her and told her that those little mind games won’t work with me and how dare she demand htat I forget about Lauren when I was only giving her as much attention as Sabrina needed from me at her age!
      I told her to wait for me in the playroom because she and I were going to have a chat. When I walked in, she was laying on the sofa quietly sobbing.
      It hit me!!! My hospitalizations are emotionally effecting them more than they are effecting me. She just said “I’m sorry mommy”. I scooped her in my arms and kissed her and told her that I was trying to do everything I could for everyone. It may not be divided evenly right now, but I am reacting to peoples needs at the time and will continue to ration my energy that way until I am strong enough that I have oodelss of it and then I will gush iver everyone. Right now, I had to spend more time wit Lauren because she can’t change her own diapers, or dress herself after a bath. Then I asked her if that was why she was behaviing si badly. Could this all stem from jealousy??
      After craddeling her and talking to her some more, I figured itout. This was all coming out due to fear. I had just come back from being gone for a week. Where was I, the hospital. She hates the hospital, is terrified of it! And hre mommy was trapped in one, all by herself, for an entire week. She must have been so afraid for me. She actually asked me if I had a teddy bear, if I was allowed to keep one! That’s when it hit me, my little girl was lashing out at me for leaving her and goingoff into the unknown. It scared her more than it comforted her. See, I gave her just the need to know stuff, but that left too much too the imagination for a 5 year old. Too many gaps to fill in. I didn’t want to be too honest with her because I didn’t want to scare her, in the meantime, wshe was imagining me in dark, scarry place where if I screamed forhelp, she wouldn’t hear me and niether would anyine else. All she knows is that I come back from the hospital covered in bruises (from collapsed veins), needing weeks of bedrest due to migraines and back pain. I don’t shower for days and come home looking like a vommiting zombie. No wonder she is terrified!!! Poor thing! I can’t even imagine what she thinks is happening or what they are doing to me while I am in there!
      I just started telling her that I have been going to the hospital, instead of to her Aunts house. I just didn’t know how much information to give, so I gave her the basics. That was very wrong of me.She doesn’t understand that I am there to receive round the clock supersivion by medical professionals or that I even have a bed to sleep in. She was terrified for me. My husaband told me that she was also crying for me over the week that I was gone, but didn’t put it together until now.
      My sweet little angel. She lost so much sleep over me that the circles under her eyes are as big as mine:(
      After we talked about the behavorial issues and a few other things that she was saying to mask the truth to her mektdown I described the hospital to her. I told her that no matter what room I am in, I can see the ocean from my window (it;s on the beach). I tlked to her about having a fun rollercoaster bed that I get to control and my late night strolls to the vening machine where I could choose ant candybar I wanted. I told her I always went with the newm, thicker Kit Kat and how I enjoyed it in my room, where my remote control is on the bed so that it never gets lost and there is an endless supply of apple juice!
      She and I laughed and laughed about all the silly stories I overly exhagerated for her.
      It just left me in a very confused spot. Before I would lie to her and tell her I was visiting my sister. Then I realized that I can’t visit my sister for 5 days out of the month, every month, and even if I did, why all the bruising? I needed to be honest with her about my disease so that she could already start accepting that mommy has limitations and may not be as physically involved as some others are. I guess I didn’t want to scare her by giving her too much info when more info was what she needed. One thing I did today that I have never done before ending a conversation is I asked “do you have any questions for me”? She promised she didn’t snd I let her know that if she ever thinks of one, that I will stop what I am doing to answer her question. I also offered that the next time I go in, she should come visit me and I will treat her to any 1 item in the vending mschine she wants!
      I am happy to say that she is no longer afraid of the hospital. I showed her pictures from google Earth and how it is surrounded by water. She saw just how beautiful it is and is looking forward to out date, but right now, she is happy to be back in mommies arms. I’m so glad to be home:o

    • Anonymous
      December 22, 2010 at 8:28 am

      Your story touched my heart.
      The imagination is a horrible thing in the mind of a child when things change in everday security of home life.
      You don’t need advice, your doing the right things.
      Children are smarter than they are given credit for. They may not be able to put what is bothering them into
      words but the change in behavior speaks for them. As a mother you picked up on that change in behavior and
      you are dealing with it on a level your child understands.

      Take care