Hospitals and Culture Shock
We checked into Shriner's Hospital, Segunda and I, yesterday morning. The trip started out auspiciously. We flew into St. Louis Sunday. We checked into our hotel for our one night of luxury. We played on the big bed. We met friends at the mall and had a wonderful meal together. We conked out nice and early. Yesterday morning, we got a lift to the hospital from the hotel shuttle. Checked in without a hitch. Oh wait ...
So, I wasn't really at all prepared for this hospital stay. I just wasn't. I know moms and dads who have stayed in hospitals for weeks and months with their sick children. And all I can say is - you parents are true, through and through super heroes. Plain and simple. The first thing I learned was that we had a roommate. The introvert in me shrieked in horror inside my head. Then I learned that there was a shower/bathtub combo down the hall for ALL of the families in the research center to share. What the what?! No toilet in there, just a tub and a shower and a sink. So, if you get in there to bathe your toddler and the running water makes you have to pee urgently, you are shit out of luck. You have to wait until you get back to your room where there is a toilet and sink you only share with your roommate.
I also learned that I'm the only one here who is a "single" parent. Everyone else has both parents, and our roommates brought a grandma. I felt very, VERY alone yesterday. Just me and my baby. The end.
Then I learned that Segunda is likely not a candidate for the trial drug because we would have to be able to prove certain symptoms were appearing at 6 months of age. Well, we didn't get her until she was 20 months and we don't have any prior medical records that would demonstrate those symptoms. I wanted to curl into a little ball with my sweet baby and cry and cry and cry. Now, I'm alone, and there is likely no drug treatment for my baby, and it feels like it's all my fault. It's all my fault that there is no drug for my baby. It's amazing what moms decide to take on their shoulders. Of course, it's not my fault, but it sure felt that way.
Then I learned that I forgot my phone charger at the hotel. And nobody is copping to have seen it. I could even tell them exactly which outlet it was plugged into. Yeah, no, not here. Then the desperation really sank in. How was I going to talk to husband and Prima every night? I miss Prima so much it hurts inside. I miss her constant chatter and million questions and her inability to wait for anyone to finish a sentence before she jumps in with questions times infinity. I miss husband too. He is such a rock and helps when I'm feeling so blue I can't keep the tears inside. But I kept them inside somehow last night. I felt like a kid at her first day of summer camp. Desperately homesick. Luckily, our roommates grandma loaned me her charger yesterday to give my phone a boost. People are awfully nice if you just reach out, even a little bit. By the way, my roommates are incredibly nice people. Their little girl is 4 and she plays with Segunda. She has the same disease, and this is their 3rd year, so they really know the ropes around here.
Segunda took her time falling asleep last night and flat out refused to sleep in the crib. So, she fell asleep in my tiny little hospital bed. I moved her to the crib and she stayed there until about 3:30 and then sat up calling me. I zipped over to her bed (didn't want to wake up my roomies) and tucked her back in with me. By the time the sun came up I was feeling better.
I remember why we are here, because I forgot yesterday. Yesterday I couldn't figure out why on Earth I was in this place and what was I doing to Segunda. Today I remembered. We are here to learn about her condition and what we can do for it. We are here to find out if she has more going on than hypophosphatasia. Her geneticist thinks so, but he isn't sure what yet. And we need to learn so that we know how to treat. We may not learn this visit. He is thinking he might have to do a bit of research and will have to get back to me in the coming months. And her participation in the research study will help others who come after her. This morning was rough for her. One of her nurses held her while I took a quick shower, and she didn't like that at all. They drew blood and it took three sticks to get enough. They particularly wanted enough for DNA, which will give them a more solid picture of what is going on with her. She has had two pee bags and taking them off is no fun at all because they stick to her sensitive skin. She had x-rays done yesterday of her hands, knees and feet and met with her geneticist. Her geneticist said something interesting about her hands, which no other doctor has said to date. He said that her fingers are missing creases which means she didn't move them in utero. The creases on your fingers are formed from moving them in utero, which I did not know. I don't know what that means in terms of her hand limitations today, but it was interesting to learn. Today she met with a physical therapist who was blown away by her mobility. The nurses said they have never seen a more cooperative baby. And the x-ray technicians want to take her home. She has the entire Research Center wrapped around her little finger. The cashier in the cafeteria offered to trade me her 23 year old for my 2 year old. And Segunda is quickly mastering how to use her dimples to get what she wants. The people in this hospital are very caring and spoil my sweet Segunda. And the head nurse loaned me her phone charger for the week. For the care of my girl, I am grateful. They will be able to provide me with a fuller picture of what is going on with her tiny body. For that I am eternally grateful. That's why I'm here.
So, I wasn't really at all prepared for this hospital stay. I just wasn't. I know moms and dads who have stayed in hospitals for weeks and months with their sick children. And all I can say is - you parents are true, through and through super heroes. Plain and simple. The first thing I learned was that we had a roommate. The introvert in me shrieked in horror inside my head. Then I learned that there was a shower/bathtub combo down the hall for ALL of the families in the research center to share. What the what?! No toilet in there, just a tub and a shower and a sink. So, if you get in there to bathe your toddler and the running water makes you have to pee urgently, you are shit out of luck. You have to wait until you get back to your room where there is a toilet and sink you only share with your roommate.
I also learned that I'm the only one here who is a "single" parent. Everyone else has both parents, and our roommates brought a grandma. I felt very, VERY alone yesterday. Just me and my baby. The end.
Then I learned that Segunda is likely not a candidate for the trial drug because we would have to be able to prove certain symptoms were appearing at 6 months of age. Well, we didn't get her until she was 20 months and we don't have any prior medical records that would demonstrate those symptoms. I wanted to curl into a little ball with my sweet baby and cry and cry and cry. Now, I'm alone, and there is likely no drug treatment for my baby, and it feels like it's all my fault. It's all my fault that there is no drug for my baby. It's amazing what moms decide to take on their shoulders. Of course, it's not my fault, but it sure felt that way.
Then I learned that I forgot my phone charger at the hotel. And nobody is copping to have seen it. I could even tell them exactly which outlet it was plugged into. Yeah, no, not here. Then the desperation really sank in. How was I going to talk to husband and Prima every night? I miss Prima so much it hurts inside. I miss her constant chatter and million questions and her inability to wait for anyone to finish a sentence before she jumps in with questions times infinity. I miss husband too. He is such a rock and helps when I'm feeling so blue I can't keep the tears inside. But I kept them inside somehow last night. I felt like a kid at her first day of summer camp. Desperately homesick. Luckily, our roommates grandma loaned me her charger yesterday to give my phone a boost. People are awfully nice if you just reach out, even a little bit. By the way, my roommates are incredibly nice people. Their little girl is 4 and she plays with Segunda. She has the same disease, and this is their 3rd year, so they really know the ropes around here.
Segunda took her time falling asleep last night and flat out refused to sleep in the crib. So, she fell asleep in my tiny little hospital bed. I moved her to the crib and she stayed there until about 3:30 and then sat up calling me. I zipped over to her bed (didn't want to wake up my roomies) and tucked her back in with me. By the time the sun came up I was feeling better.
I remember why we are here, because I forgot yesterday. Yesterday I couldn't figure out why on Earth I was in this place and what was I doing to Segunda. Today I remembered. We are here to learn about her condition and what we can do for it. We are here to find out if she has more going on than hypophosphatasia. Her geneticist thinks so, but he isn't sure what yet. And we need to learn so that we know how to treat. We may not learn this visit. He is thinking he might have to do a bit of research and will have to get back to me in the coming months. And her participation in the research study will help others who come after her. This morning was rough for her. One of her nurses held her while I took a quick shower, and she didn't like that at all. They drew blood and it took three sticks to get enough. They particularly wanted enough for DNA, which will give them a more solid picture of what is going on with her. She has had two pee bags and taking them off is no fun at all because they stick to her sensitive skin. She had x-rays done yesterday of her hands, knees and feet and met with her geneticist. Her geneticist said something interesting about her hands, which no other doctor has said to date. He said that her fingers are missing creases which means she didn't move them in utero. The creases on your fingers are formed from moving them in utero, which I did not know. I don't know what that means in terms of her hand limitations today, but it was interesting to learn. Today she met with a physical therapist who was blown away by her mobility. The nurses said they have never seen a more cooperative baby. And the x-ray technicians want to take her home. She has the entire Research Center wrapped around her little finger. The cashier in the cafeteria offered to trade me her 23 year old for my 2 year old. And Segunda is quickly mastering how to use her dimples to get what she wants. The people in this hospital are very caring and spoil my sweet Segunda. And the head nurse loaned me her phone charger for the week. For the care of my girl, I am grateful. They will be able to provide me with a fuller picture of what is going on with her tiny body. For that I am eternally grateful. That's why I'm here.
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