Jaela's in the middle of getting her first infusions of Pamidronate and overall it's been going pretty well. Wednesday morning we had to go to Primary Children's to get an IV placed.
Shriner's felt better about having the IV team over there put it in because Jaela is so little and they're more used to that. It was traumatic; probably more for me than for her. When they started putting it in she was crying so hard and there was nothing I could do but hold her hand and stroke her head. She was screaming and I was crying, but luckily it only took a minute or so.
After that we headed over to Shriner's to get checked in. They got us set up in a room...
... and a whole bunch of people came through to check on us. We got there around 10 but they didn't start the drug until 1. It ran for four hours and Jaela handled it really well. She didn't get a fever and wasn't very fussy and even ate a lot for me. My mom stayed the day with me which was really helpful. It's really hard to tend a baby, talk to a hundred different people, give her medications, and give her whole medical history a million times. For example, I was telling her medical history yet again and trying to get her thyroid medicine ready at the same time. Yeah I ended up dumping the whole bottle of pills on the ground. The nurse practitioner was really nice and got me another prescription written up quick. I was just trying to do too many things at once.
After that the day settled down. And then came the night. They flush Jaela's IV every four hours to make sure it doesn't clot. Well every time they flushed it she screamed and her heart rate went through the roof. The nurse told me that she thought the IV was going bad and that I may have to go back to Primary's in the morning and have them put a new IV in. Great... They kept and eye on it and in the morning the nurse practitioner and the anesthesiologist came in to look at it and they said it was ok. I was not happy with the anesthesiologist. He came in and ripped the super stick tape off her arm and it hurt her so bad! And he didn't even seem to care that he was hurting this tiny little baby. My mom and I growled at him and he just got mad back. But he said the IV was still ok to they got her started on the Pamidronate again and she did pretty good and it didn't seem to hurt. I just think that when they flush it the fluid goes in too fast and it burns or stings, but the infusion was set at 15 ml (30 ml is an ounce) an hour so it was really slow and didn't hurt. Her infusion finished around noon so they let us go home.
I know that Shriner's is a good hospital and they do wonderful things for children. But I wasn't happy with everything that they did to Jaela. I told every nurse that came in that she has OI and her bones break easily and that we have to be extremely careful with her. Well it went in one ear and out the other. They were tugging on her arms and legs and trying to move her body in ways that it doesn't want to move yet and overall they were being way to rough with her. I think if anyone is going to break on of her bones it's going to be a health care professional. Again, she's been fussy when we move her after being at Shriner's. I just don't know what to do or say so they take me seriously.
I know I've said before that Jaela is so sweet and so strong and after all the tears and pain, a smile.
Shriner's felt better about having the IV team over there put it in because Jaela is so little and they're more used to that. It was traumatic; probably more for me than for her. When they started putting it in she was crying so hard and there was nothing I could do but hold her hand and stroke her head. She was screaming and I was crying, but luckily it only took a minute or so.
After that we headed over to Shriner's to get checked in. They got us set up in a room...
... and a whole bunch of people came through to check on us. We got there around 10 but they didn't start the drug until 1. It ran for four hours and Jaela handled it really well. She didn't get a fever and wasn't very fussy and even ate a lot for me. My mom stayed the day with me which was really helpful. It's really hard to tend a baby, talk to a hundred different people, give her medications, and give her whole medical history a million times. For example, I was telling her medical history yet again and trying to get her thyroid medicine ready at the same time. Yeah I ended up dumping the whole bottle of pills on the ground. The nurse practitioner was really nice and got me another prescription written up quick. I was just trying to do too many things at once.After that the day settled down. And then came the night. They flush Jaela's IV every four hours to make sure it doesn't clot. Well every time they flushed it she screamed and her heart rate went through the roof. The nurse told me that she thought the IV was going bad and that I may have to go back to Primary's in the morning and have them put a new IV in. Great... They kept and eye on it and in the morning the nurse practitioner and the anesthesiologist came in to look at it and they said it was ok. I was not happy with the anesthesiologist. He came in and ripped the super stick tape off her arm and it hurt her so bad! And he didn't even seem to care that he was hurting this tiny little baby. My mom and I growled at him and he just got mad back. But he said the IV was still ok to they got her started on the Pamidronate again and she did pretty good and it didn't seem to hurt. I just think that when they flush it the fluid goes in too fast and it burns or stings, but the infusion was set at 15 ml (30 ml is an ounce) an hour so it was really slow and didn't hurt. Her infusion finished around noon so they let us go home.
I know that Shriner's is a good hospital and they do wonderful things for children. But I wasn't happy with everything that they did to Jaela. I told every nurse that came in that she has OI and her bones break easily and that we have to be extremely careful with her. Well it went in one ear and out the other. They were tugging on her arms and legs and trying to move her body in ways that it doesn't want to move yet and overall they were being way to rough with her. I think if anyone is going to break on of her bones it's going to be a health care professional. Again, she's been fussy when we move her after being at Shriner's. I just don't know what to do or say so they take me seriously.
I know I've said before that Jaela is so sweet and so strong and after all the tears and pain, a smile.
I had IV antibiotics for 5 or 6 days after Charlotte was born and getting them flushed did burn--especially as the IVs would go bad. I asked the nurses to push the saline solution in a little more slowly and that helped a bit. Just a thought if it seems to bother Jaela still.
ReplyDeleteI'm glad that overall it went well! Jaela is definitely a strong little fighter, that's for sure! You'd think the dr.s & nurses would know about how fragile her bones are if they are giving her the treatment to sttrengthen her bones! Erg! I would be so mad if I had to stand there and watch what they were doing to her! I can't believe that! >:{ Is there someone you can complain to? We'll say lots of prayers that it goes better next time! I feel so bad I didn't text or call and say "good luck"! I forgot all about it! I've had a crazy week with one of my YW and I must of just been thrown off. I'm sorry! I'm glad that overall it went well! Jaela is still adorable and sweet, even after being tortured!
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