Wow, as soon as her little lung sacs decided to pop open, and stop collapsing, her oxygen need decreased so fast! She went from being on high flow at 6 1/2L to being on the regular nasal canula at only 1L overnight!
Last night she managed to pull out her NJ tube (even with socks covering her hands) and the doctors told me that if she didn't eat and keep anything down by midnight, they'd have to put it back in. I tried feeding her 4 ounces at about 8pm and almost immediatly after, she started coughing and she threw it all back up on me. A couple hours later, we tried again, but we lessed the amount....I only gave her 2 ounces. She did so much better and kept it down and slowly we gave her a little bit more. By the time midnight came around she had eaten and kept down 8 ounces! Yay!
She was awake and playful and and sitting up and almost back to her happy self. Her oxygen needs had decreased so much that they stopped the continuous albuterol. Since she didn't have the NJ tube anymore, they stopped the sedation. She was like 100% better, and I could finally see a light at the end of the tunnel. 4 days at Riverton and 5 days at Primary's and she was finally getting better!
In the rounds that morning, they gave me the good news that we'd get to move to the infant floor. I was worried that we'd have to share a room with someone else, since that's what happened the last time she was admitted to Primary's...but we got lucky because they gave us a single room! Yay! The infant floor nurse and tech came in to do her assessment and to give us the run down of the floor. I asked how much longer we had to be there, and she told me until baby was completely off oxygen. I kindof laughed at that because I totally didn't believe it. I explained to her that I'm used to having her on oxygen, she's had it pretty much her whole life. I'm comfortable with her going home on oxygen....and I knew she would have to....I've been here before, and I know there's no way she'll be completely off oxygen for a while. She told me she'd go and talk with the charge nurse about it, but usually their policy is for the kids to be completely off oxygen before discharge.
Baby started to get really irritated as the night went on, and I wasn't sure what she wanted. She didn't want to eat, her diaper was already changed, she didn't want to watch tv, she didn't want to be held. I'd actually never seen her act like that before and I didn't know what to do. I always remember when we were young, my dad would always tell us that if we didn't feel good, we should take a shower/bath and it would make us feel better. I immediately thought about that and I asked them if I could give her a bath. They brought all the bath stuff and I gave her a bath. I was hoping it would make her tired and that she'd be able to get some sleep. The bath calmed her down a little bit, but she still had such a big attitude. She was in such a bad mood and just not being herself. I thought that maybe she was just sick and tired of being in the hospital. I know I was, and she probably was too. I pushed the nurse call light and when she came in I asked if there was any way we could go home already. I knew it was a long shot, but it doesn't hurt to ask, right?! The nurse was super hesitant, and really surprised that I was even asking.....but I explained to her that I'm fine, she's breathing ok now, she's been on oxygen her whole life so it's nothing new to me....we both didn't want to be there anymore, and frankly they weren't doing anything more for her than I already do at home. She told me to wait that she would go and talk to the charge and the pediatrician on the floor and ask them if we could go home.
About an hour later the pediatrician came into our room. She told me she didn't feel comfortable letting us go home considering that baby just barely got out of the ICU that morning and just last night she was still on high flow. I got it, I totally understood that....but just knowing my daughter, I knew that she was better...I knew that she was ok, and I just hoped by some small miracle it would have been a yes. :( She told me that if baby slept good that night and didn't de-sat or need to be turned up....we could go home in the morning. I was ok with that. I had no other choice.
So the pediatrician leaves and I'm sitting there with my super anory daughter....acting all irritated and out of character. I couldn't put my finger on what was bothering her, and then I realized that she was still in the little crib. She is such a diva and refuses to sleep in the hospital cribs, she likes the big beds. I went out and asked the nurse if they could bring in a big bed to see if that would help. Seriously, the minute the big bed came in she started smiling and bouncing her little body......little stinker, she didn't want the crib. Hahaha
I climbed into bed with her and we both fell asleep watching cartoons. Thank you baby girl for being so picky LOL, because that meant I didn't have to sleep in the uncomfortable recliner....I got to sleep on the bed......with my princess. :)
The next morning came and I can't believe we both slept the whole night...even when the nurse came in to do her vitals, neither one of us woke up. LOL. Overnight they were able to turn her down to 1/2 liter of oxygen which the pediatrician was so happy about and she was totally ok with sending us home that morning. YAY!!
We went home with triple the dose of the flowvent steriod, the referral to a pulmonologist that she'll now need to see on a regular basis, the permission to give her albuterol as needed instead of only every 4 hours....and the need to be back on oxygen.
During this whole hospitalization I've been told several different times by several different medical professionals that this is probably something I'll have to be dealing with for a while...at least until her lungs get stronger. But it's ok. I hate seeing her suffer, but she's strong and as long as we have to deal with this we will. She always bounces back!
Last night she managed to pull out her NJ tube (even with socks covering her hands) and the doctors told me that if she didn't eat and keep anything down by midnight, they'd have to put it back in. I tried feeding her 4 ounces at about 8pm and almost immediatly after, she started coughing and she threw it all back up on me. A couple hours later, we tried again, but we lessed the amount....I only gave her 2 ounces. She did so much better and kept it down and slowly we gave her a little bit more. By the time midnight came around she had eaten and kept down 8 ounces! Yay!
In the rounds that morning, they gave me the good news that we'd get to move to the infant floor. I was worried that we'd have to share a room with someone else, since that's what happened the last time she was admitted to Primary's...but we got lucky because they gave us a single room! Yay! The infant floor nurse and tech came in to do her assessment and to give us the run down of the floor. I asked how much longer we had to be there, and she told me until baby was completely off oxygen. I kindof laughed at that because I totally didn't believe it. I explained to her that I'm used to having her on oxygen, she's had it pretty much her whole life. I'm comfortable with her going home on oxygen....and I knew she would have to....I've been here before, and I know there's no way she'll be completely off oxygen for a while. She told me she'd go and talk with the charge nurse about it, but usually their policy is for the kids to be completely off oxygen before discharge.
Baby started to get really irritated as the night went on, and I wasn't sure what she wanted. She didn't want to eat, her diaper was already changed, she didn't want to watch tv, she didn't want to be held. I'd actually never seen her act like that before and I didn't know what to do. I always remember when we were young, my dad would always tell us that if we didn't feel good, we should take a shower/bath and it would make us feel better. I immediately thought about that and I asked them if I could give her a bath. They brought all the bath stuff and I gave her a bath. I was hoping it would make her tired and that she'd be able to get some sleep. The bath calmed her down a little bit, but she still had such a big attitude. She was in such a bad mood and just not being herself. I thought that maybe she was just sick and tired of being in the hospital. I know I was, and she probably was too. I pushed the nurse call light and when she came in I asked if there was any way we could go home already. I knew it was a long shot, but it doesn't hurt to ask, right?! The nurse was super hesitant, and really surprised that I was even asking.....but I explained to her that I'm fine, she's breathing ok now, she's been on oxygen her whole life so it's nothing new to me....we both didn't want to be there anymore, and frankly they weren't doing anything more for her than I already do at home. She told me to wait that she would go and talk to the charge and the pediatrician on the floor and ask them if we could go home.
About an hour later the pediatrician came into our room. She told me she didn't feel comfortable letting us go home considering that baby just barely got out of the ICU that morning and just last night she was still on high flow. I got it, I totally understood that....but just knowing my daughter, I knew that she was better...I knew that she was ok, and I just hoped by some small miracle it would have been a yes. :( She told me that if baby slept good that night and didn't de-sat or need to be turned up....we could go home in the morning. I was ok with that. I had no other choice.
So the pediatrician leaves and I'm sitting there with my super anory daughter....acting all irritated and out of character. I couldn't put my finger on what was bothering her, and then I realized that she was still in the little crib. She is such a diva and refuses to sleep in the hospital cribs, she likes the big beds. I went out and asked the nurse if they could bring in a big bed to see if that would help. Seriously, the minute the big bed came in she started smiling and bouncing her little body......little stinker, she didn't want the crib. Hahaha
I climbed into bed with her and we both fell asleep watching cartoons. Thank you baby girl for being so picky LOL, because that meant I didn't have to sleep in the uncomfortable recliner....I got to sleep on the bed......with my princess. :)
The next morning came and I can't believe we both slept the whole night...even when the nurse came in to do her vitals, neither one of us woke up. LOL. Overnight they were able to turn her down to 1/2 liter of oxygen which the pediatrician was so happy about and she was totally ok with sending us home that morning. YAY!!
We went home with triple the dose of the flowvent steriod, the referral to a pulmonologist that she'll now need to see on a regular basis, the permission to give her albuterol as needed instead of only every 4 hours....and the need to be back on oxygen.
During this whole hospitalization I've been told several different times by several different medical professionals that this is probably something I'll have to be dealing with for a while...at least until her lungs get stronger. But it's ok. I hate seeing her suffer, but she's strong and as long as we have to deal with this we will. She always bounces back!
1 comment:
Oh my goodness! I can't believe it!!! Glad that she got to go home and that she is doing better. That is so funny about the big girl bed. You are an amazing mom! You know her best. WHAT A BLESSING!
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