Thursday was a pretty good day overall, Emma Kate was doing great with her drug decreases and was pretty mellow all day- she was opening her eyes more and looked more alert, but just kind of laying there quietly. By mid-day, she was off the fentanyl drip, and down considerably on the versed. I can't remember if I already posted this, but she's got a clonidine patch and a fentanyl patch to help stretch things out and work on helping to prevent withdrawal signs. She's had her methadone and adavan doses increased because she had been showing signs suspicious of withdrawal, mostly lots of somewhat random herky-jerky movements with her arms and legs, and the shakes. She's been sweating and yawning too, which can be signs of withdrawal as well. Into the evening, we had another bit of a scare where she started coughing really hard and ended up gagging and spitting up some thick mucous and bile- luckily the nurses were right there over her at the time, so they were able to suction her pretty fast. The cuff on her ET had been deflated a couple days prior in anticipation of extubation, so we were just really scared about aspiration. Despite everyone's efforts to ease our fears, we weren't comfortable leaving her overnight since the nurses can't be in the room looking at her every minute (why not I ask?!?!) So Mimi and Daddy split the night so they could be awake with Emma Kate and also get a little sleep. They replaced her NG tube, which didn't seem to be working well, and apparently there was a bit of a plug in the end of it. They put in a larger diameter tube, and have been running the suction regularly to help keep her stomach empty, but she's just becoming more and more awake and getting a little more agitated, and with 3 tubes sitting in the back of her throat, I am amazed she hasn't been doing more gagging. Overnight she was weaned completely off of her versed and down to minimal amounts of Precedex. She's been getting Zofran for possible nausea, and regular doses of Benedryl to help keep her a little sleepy without depressing her breathing.
Friday morning she was doing well, pretty awake and alert but not agitated. They went ahead and extubated her while she was in a good state for it, and they immediately started treatments with inhaled epinephrine to help reduce the severe laryngeal edema from the ET being in there so long. They also put her on a helium-oxygen mask which provides more laminar air flow than plain oxygen. She made all sorts of coarse noise from her throat, and was having a lot of abdominal push to exhale, which was very reminiscent of the night we brought her to the ER. The doctors were very happy with how she was doing- they feel confident that the majority of the noise she makes (it was a LOT of noise!) is from her laryngeal area, and that should improve significantly within a few days. They are happy with her air movement and don't think her patch is completely collapsing because she's not air trapping and her blood gases have been good, and she sounds like she has good air exchange in her lungs. She's definitely got some collapse though, as she does have a pretty big abdominal push to exhale, but the doctors are comfortable with the extent of it for now.
After a couple hours, they actually let me get her out of the bed and sit with her on my lap in a chair- it was wonderful, and I honestly had forgotten how big she is, and how much she weighs! It's crazy what you seem to forget when you're used to it all the time and then you miss it. She got really agitated in my lap, really wiggly and antsy, and we had to put her back in the bed and start her back on her Precedex drip. It took 3 of us to try to control her hand movements so she wouldn't accidently pull any of her monitoring equipment off or remove her pacer wires, definitely looking like withdrawal signs. She also got a little bolus of fentanyl and that seemed to do the trick. The rest of the day was pretty quiet for her, a couple of times she did wake up a little more and she seemed a little better controlled and less agitated. She has tried to speak a few times, and nearly nothing comes out- what we can hear is just a teeny tiny high-pitched little squeal. It's so hard to have her trying so hard to communicate and we have no clue what she's saying. A couple of times she's also gotten to pointing with her finger, but we can't tell what she's pointing at since she's so shaky with it.
Friday night I got to sit with her for a while, she was awake but very calm, much better with the drug arrangement like they adjusted it. She got a rub-down with lotion, which she desperately needed. She started to cry for a little bit, which was really hard to see- she would inhale deeply and then it was like she was just holding her breath for a long time, then she would push all the air out forcibly. I couldn't tell what she was crying about, and tried to comfort her with cuddling and kisses and talking about all the things she likes back home, the kitties, baby Gretta, baby clothes, movies, etc. Finally she did settle down, and it sounds like she had a pretty good relatively quiet night. Mimi and Daddy split the night again, so that she wouldn't wake up alone, and also to make sure she kept her heli-ox mask on well and didn't pull anything off. They have arm restraints on her, but sometimes it's hard to judge how far she can reach with them.
This morning (Saturday) she is sleeping quietly and is actually breathing much easier- if only she could breath like this when she is awake. How do you get a 2-year old to relax and breathe easily?!?! Her attending doctor was joking with me last night (actually probably talking more seriously than I care to believe) about how toddlers will throw a fit and scream and turn blue and pass out, then they just start breathing easily again, and that's was Emma Kate would likely do if she gets too worked up- just have too hard a time breathing that she would pass out, her body would relax, and she would allow the air to more passively leave her lungs rather than fighting against the partial collapse of the patch. How terrifying is that? Anyhow, she sounds better today- less noise means less edema in her larynx most likely. They've not done rounds this morning, but it sounds like we'll probably take her off the heli-ox today and put her on regular oxygen in it's place, and mostly just giving her time to recuperate and rest. One of her cardiothoracic doctors came to see her this morning and was very pleased with the way she looked. He thinks she'll probably have a few more days here in the PICU then be moved to another ward if it looks unlikely that she'll have to be re-intubated. They'll probably pull her pacer wires tomorrow (I can't wait for those to be out, they're a pain!). So for today we're just trying to keep her comfortable and calm, she'll have several breathing treatments in addition to more IV steroids, and hopefully it will be quiet!
I wanted to mention how grateful we are for all the support our friends and family have given us. It has been wonderful to know how many people we have out there that care about our little family. We can't express enough how thankful we are to everyone. The people here have been so great as well- so many are supportive of families here and really work to reduce the stress and issues families have to deal with in a situation like this. The Ronald McDonald folks have been incredible as well, not only giving us a nice, very inexpensive place to sleep, but they have dinners donated to them every single night. A lot of donations have come from individuals and churches, college sororities, and restaurants. The local McDonald's donates dinner every Monday night, and a few nights ago, a great steak dinner was donated by TGIFridays. They even had people cooking a serious Thanksgiving meal all afternoon on Thursday. There have been several gifts given to Emma Kate, and I know she will love and appreciate each one when she is stronger. This experience has made us so thankful for the generosity of family, friends, and strangers, and has made me realize how important it is to give and support others! We hope to be able to give back in the future, and to help others who are in difficult situations.
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