4 days at Riverton hospital and 2 days so far at Primary's.....no real improvement. Last night in the middle of the night, she woke up when they came in to give her albuterol and was super irritated. The sedation must have worn off and she was so mad. She was screaming, I could see it in her eyes, but no sounds were coming out I couldn't hear a sound because of that big mask that was covering her face. She was starving because they hadn't fed her in almost 72 hours....and one of the only things she finds comfort in is this little blanket toy that has little ribbons that stick out the sides of it. She likes to like on the little ribbons and it calms her down. Well, she had her little blanket in her hands, but because of the mask covering her mouth, she wasn't able to lick the ribbons and she was getting super frustrated. She would keep bringing it up to her mouth, her hand would hit the mask and she would scream and cry harder. :( They have to take the mask off to give her the albuterol treatments, and when they went to put it back on her after her treatment, she fought hard. She was screaming and pushing them away with her hands and feet, and she was moving her head back and forth so they couldn't get it on her. They were all surprised at how strong she was.....because even with 2 of them in there, they still couldn't get it back on.
The resident came in and said that because of how irritated she was, and because she obviously wasn't tolerating it, that they would just try to put her back on high flow and give her a break from the CPAP for a while. She went back to high flow on 12L @ 80%.....that just sounded so much worse to me. From 6L to 12L. They up'd her sedation medication in hopes of helping her calm back down and rest, and because they still weren't going to feed her. Because her mouth wasn't covered anymore, she was able to lick the ribbons on her little blanket and that with the increased sedation helped her to go back to sleep. Poor baby.
While she was sleeping I asked the nurse why they weren't feeding her. She hadn't eaten for 3 days and I know that part of her reason for being so irritated and miserable was because she was starving. She went and talked to the doctor and he came in and told me that the reason she is not able to eat yet is because she hasn't improved her respiratory status at all since we got there. There was a real possibility that she would need to be intubated and if that were to happen, she can't have any food in her stomach. He explained to me that usually by now, the virus would have already hit it's peak and would she would be getting better by now, but because of her CLD and her weak lungs, she just hasn't made it over the hump yet. He assurred me that she would and that as soon as she did, she'd get better quickly, it's just waiting until she gets over the hump. He told me that they might be able to put an NJ tube in, which means that they would pump food directly into her intestine...passing her stomach. She had to have an NJ tube when she was in the NICU, so I already knew what that was. I told him yes, that I would love that if we could feed her. She won't get the sensation that she's full because it won't be in her stomach, but at least her little body will get the nutrients that it needs.
They came in and put the NJ tube in her and then did an x-ray to check placement. The tube was wound up a few times in her little stomach, but the end was down into the intestines....so they got it on the first try, yay! Baby did not like it, but then again...who would like someone shoving a tube through your nose straight down to your intestine? I was so glad she was finally getting some food though!
In the afternoon when she was sleeping, she started to de-sat again. She hung around the low 80's for a while so they ended up turning her high flow up to 15L @ 60%. They were trying a different high flow machine than the one she was on when she first got to Primarys....this one had the ability to go up to 20L....but the nurse told me that if she still de-satted on the 15L, they would either move her back to CPAP again, or they would intubate her so that she could get some rest.
Right after the nurse told me that, the doctor came in to talk to me. He told me that she is showing signs of chronic asthma, which they can't technically diagnose in children under 2 years old, so they called it retractive airway. What they are seeing is that she keept having "asthma attacks" and periods where she coughs so hard that she stops taking breaths, so she's not keeping her sats up. He told me they were doing everything they can not to have to intubate her, but she's just not showing any signs of improvement yet. In the asthma attacks, her air sacks are collapsing and she's not strong enough to re-open them on her own....and it was taking a lot for them to help her re-open them. :( On top of that, she has a lot of junk/fluid in her lungs...so they started her on Lasix to help her get rid of some of the excess fluid. He told me that in chronic asthma patients when they have these same kinds of attacks, they do a continuous albuterol drip that helps keep the broncials dialated and open. They wanted to try it on her. They've been giving her albuterol every 2 hours and it seems to be helping her so much....but it seems to wear off quickly. So she does good right when she gets it, then it wears off and she de-sats and so they give her another treatement and she sounds better, but it takes her a long time to recover her sats. It's a vicious cycle.
I left for the shift change because the ICU is closed from 7-8pm and when I came back, she was down to 12L @ 60% which was awesome. The albuterol must have been working for them to be able to turn her down 3L in that hour. She was satting good, she was getting fed through the NJ tube, she was sedated, calm and sleeping. I was happy that she was finally getting some good rest. Hopefully that would allow her little body to repair itself and she could get over the hump and start getting better!
The resident came in and said that because of how irritated she was, and because she obviously wasn't tolerating it, that they would just try to put her back on high flow and give her a break from the CPAP for a while. She went back to high flow on 12L @ 80%.....that just sounded so much worse to me. From 6L to 12L. They up'd her sedation medication in hopes of helping her calm back down and rest, and because they still weren't going to feed her. Because her mouth wasn't covered anymore, she was able to lick the ribbons on her little blanket and that with the increased sedation helped her to go back to sleep. Poor baby.While she was sleeping I asked the nurse why they weren't feeding her. She hadn't eaten for 3 days and I know that part of her reason for being so irritated and miserable was because she was starving. She went and talked to the doctor and he came in and told me that the reason she is not able to eat yet is because she hasn't improved her respiratory status at all since we got there. There was a real possibility that she would need to be intubated and if that were to happen, she can't have any food in her stomach. He explained to me that usually by now, the virus would have already hit it's peak and would she would be getting better by now, but because of her CLD and her weak lungs, she just hasn't made it over the hump yet. He assurred me that she would and that as soon as she did, she'd get better quickly, it's just waiting until she gets over the hump. He told me that they might be able to put an NJ tube in, which means that they would pump food directly into her intestine...passing her stomach. She had to have an NJ tube when she was in the NICU, so I already knew what that was. I told him yes, that I would love that if we could feed her. She won't get the sensation that she's full because it won't be in her stomach, but at least her little body will get the nutrients that it needs.
They came in and put the NJ tube in her and then did an x-ray to check placement. The tube was wound up a few times in her little stomach, but the end was down into the intestines....so they got it on the first try, yay! Baby did not like it, but then again...who would like someone shoving a tube through your nose straight down to your intestine? I was so glad she was finally getting some food though!
Baby girl with her NJ tube, back on high flow, licking the ribbon of her blanket :)
In the afternoon when she was sleeping, she started to de-sat again. She hung around the low 80's for a while so they ended up turning her high flow up to 15L @ 60%. They were trying a different high flow machine than the one she was on when she first got to Primarys....this one had the ability to go up to 20L....but the nurse told me that if she still de-satted on the 15L, they would either move her back to CPAP again, or they would intubate her so that she could get some rest.
Right after the nurse told me that, the doctor came in to talk to me. He told me that she is showing signs of chronic asthma, which they can't technically diagnose in children under 2 years old, so they called it retractive airway. What they are seeing is that she keept having "asthma attacks" and periods where she coughs so hard that she stops taking breaths, so she's not keeping her sats up. He told me they were doing everything they can not to have to intubate her, but she's just not showing any signs of improvement yet. In the asthma attacks, her air sacks are collapsing and she's not strong enough to re-open them on her own....and it was taking a lot for them to help her re-open them. :( On top of that, she has a lot of junk/fluid in her lungs...so they started her on Lasix to help her get rid of some of the excess fluid. He told me that in chronic asthma patients when they have these same kinds of attacks, they do a continuous albuterol drip that helps keep the broncials dialated and open. They wanted to try it on her. They've been giving her albuterol every 2 hours and it seems to be helping her so much....but it seems to wear off quickly. So she does good right when she gets it, then it wears off and she de-sats and so they give her another treatement and she sounds better, but it takes her a long time to recover her sats. It's a vicious cycle.
I left for the shift change because the ICU is closed from 7-8pm and when I came back, she was down to 12L @ 60% which was awesome. The albuterol must have been working for them to be able to turn her down 3L in that hour. She was satting good, she was getting fed through the NJ tube, she was sedated, calm and sleeping. I was happy that she was finally getting some good rest. Hopefully that would allow her little body to repair itself and she could get over the hump and start getting better!
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