The big thing that came out of this trip is that we are suspending giving Jillian shots for now. Jillian gets sick after EVERY shot she gets. It is not an immediate reaction. It always takes a couple of days. The symptoms are not the same every time but it is typically respiratory. We don't know if they just kick her immune system so bad she can't fight things off or if it is the shots themselves or if it is just a major coincidence that she gets sick after getting shots but we cant keep doing the same thing and expecting a different result. We are going to take shots out of the mix for now. Maybe we will try again when she is old. She currently is only missing 7 shots out of the many you give in the first two years. 2 of that 7 are optional. This was her doctor's idea and we support it. Her doctor said that scientifically this should not be happening but she is the one who administrators the shot and then she is the one who treats her when she is sick.
I know some people will not agree with that choice. I know some doctors will lecture me about it. We have to do something. I guess until they have lived our lives and see what we have seen over the last 15 months then they will not know what it is like to be us and make our choices. We try to make the best choices that we can for our little girl.
Her doctor said that once we get genetic testing back then we will talk about this again. Hopefully genetics calls back soon. I have called, GI made a referral and the doctors when we were in the hospital called. Everyone is on the same page right now that we need to do some genetic testing. I am starting to get anxious about them not calling me back in a week but her doctor is getting really annoyed and said that if they don't call back soon or can't get us in soon then we will need to look at going elsewhere. I don't want to go elsewhere. We LOVE Children's! We have met some amazing people there, and as strange as this sounds, it is familiar. I know how it works. I know where to go and who to talk to. We will do whatever is best for Jillian but I want to exhaust all of our options at Children's first before we look elsewhere so please genetics department, call us back, have an opening soon, and make it for a day I already have off... is that too much to ask?
I'm not a person to break down in the moment. I just do. I go through crazy days with Jillian without much emotion. I just go into go mode. I get things done, I hold intelligent conversations, I don't cry. (my allergies were bothering me Sunday so my nose and one eye kept watering and it was driving me crazy because it looked like I was crying even though I was not) Sometime after the fact it always hits me like a ton of bricks.I have always been this way. It is what I have had to do. Think about it. My grandfather had multiple heart attacks when I was little. My mom's lung collapsed twice when I was in 8th grade and had lung surgery. When I was in collage my dad's heart rate spiked to over 300bpm and they had to "restart" him. My little brother almost died while I was pregnant with Jillian. When I was in high school I was hospitalized for asthma attacks and then was sick for 4 months with a bad appendix and gallbladder. Hospitals are not a foreign thing to me.
I was reading a blog today about a little girl with a mitochondrial disorder. I have been in research mode again lately. I just want to soak up all the info I can to best help Jilli. Her ped is fighting for more tests for her so we can figure out an underlying cause to all of this. I have honestly lost count of the hospitalizations this child has had and she is only 15mo old. (I just logged onto her mychart for Children's and it shows 9 hospital admissions... each with different lengths!)
I read a post about spending time in the hospital. I have read multiple posts from people who have spent a good amount of time in the hospital. Frequent flyers. They all tend to talk about how much their child is loved by the people at the hospital, but how they never imagined it being them spending time there. I totally understand that feeling. I love that many people at Children's love my little girl. They genuinely care about her. However, I remember seeing commercials for Children's several years ago and thinking how thankful I was for all they did for me when I was in high school but it is different now.
When we arrived at Children's on Sunday the floor nurse was trying to explain stuff to me. Things I already knew about where to find things and how stuff works. I understand the drill. My mom and I left the room at dinner time to grab food from Cafe West and Brent stayed in the room with Jilli. As we were walking out of the room the nurse asked us if we knew where we were going. I said yea. (I have to admit, I was getting kind of snippy with her, it had been a long day and I already told her multiple times that I knew were stuff was because we had just been here... again) She said she was just so sorry that we were back. For some reason that comment annoyed me... a lot. It is not that I wish to be there, but it is what it is. We needed to be there. It was the best place for Jillian at that time. At that point in that very long day I was not sorry to be back... I was grateful. I was grateful Jillian was getting the help that she needed. I was grateful for all the doctors who had listened throughout the day. I was grateful for the fact that we had a children's hospital so close. I did not want anyone to feel sorry for me right then. I what exhausted, but felt safe.
Days are long in the hospital. Floor doctors should not greet you in the hallway to ask whats going on because they heard/saw we were back. Nurses should not be telling stories about times we have been there before. I should not be talking to my mom and telling her that I am excited for the nurse we have been assigned for the day because we have had her before and it went smoothly. I should not have nurses asking me how to do things (that is nothing against the nurses, there are just some things that we live with day to day that they don't so they are respectful and inquisitive enough to want to learn, but I should not have enough knowledge of anything medical as a 4 year old teacher for anyone to want to ask me medical questions). I should not carry meal tickets in my purse at all times just in case. But those are all real things. That is out life. God has blessed us with great doctors and nurses. He has granted us with knowledge and the capability to learn these things. He has granted us people who have bought us meal tickets as gifts so we don't have to worry about that.
This could all be worse. We have Jillian with us.
I was reading a different blog from a mom who does spotlights of families with special needs. What most of those families say is that they are so grateful just to have their child, despite everything else. That God teaches them things though their child everyday and that to God their "stuff" is no surprise. God was not shocked about Jillian's needs. He gave her to us. She is His child and we are lucky enough to get to tend to her. She is our gift despite all of this. While I don't wish this on anyone else, I am not running screaming from it either. This is our journey. God knew our journey before we did. He knows the end of the story.
So while we love support and kind words mean so much to us. Please don't feel sorry for us. Pray for answers so we can best help Jillian. Support causes that we love that support Jillian and kids like her. Be a listening ear. Ask us how she is doing and really listen. It drives me crazy when people say "well she looks just fine to me." Understand that we are making big choices for our little girl and in some things there is no "good choice" just a mix of what what is the least bad. Don't judge us for our choices of what we do and don't choose to do. We try to give Jillian as "normal" of a life as possible, but sometimes that involves doing things differently. Know that sometimes we are just holding together for the moment, and be accepting that we are over tired and trying our best. But there is a big difference between empathy and feeling sorry for us. Feeling sorry for us solves nothing, joining with us does something.
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