So sorry for the delinquency in posting the past couple of days. It’s been a frustrating 48 hours and I’ve mostly been too pissed off to post anything but a stream of expletives. I think I’ve repeated the story enough that I can be more calm about it. Don’t worry – baby’s alright, no thanks to her nurse the night before last (Sunday night). What follows is mostly for my own reference and therapeutic venting, but if you want to read about our frustrating night with the nurse we’ll call the Mean Man, please proceed.
So. The evening started off well enough, until BabyBug started having trouble with her tube. I mentioned that sometimes the holes get stuck in her throat, and her nurse basically brushed me off and said, “Yeah, that doesn’t really happen.” Um, sorry, but yes it does. The nurse practitioner on the surgical team told me she sees it often in kids with Down syndrome because they thrust their tongues. The Mean Man then said, somewhat patronizingly, that the tube had holes all the way around and one in the end as well, so it simply couldn’t happen. Incidentally, the tube has exactly three holes, and they are all on one side. I checked a spare the minute he walked out of the room.
Anyway, Leah was clearly in discomfort because of the tube, and the Mean Man kept trying to tell me it was just because she has a tube down her throat. I tried explaining that this is all she knows, and she only expresses discomfort when it’s not functioning the way it’s supposed to (like if it’s stuck or clogged or not in deep enough). He brushed that off. She started coughing and gagging on the tube and I asked if I could just pull it out for a minute (since it obviously wasn’t working well), and he flipped out and was like, NO, if you pull it out anything that she secretes will go into her lungs. Keep that in your mind – if the tube isn’t suctioning, any secretions can go straight to her lungs. Then he was like, “Do you want your pacifier?” And I said “NO, don’t give her the pacifier right now, it will make her gag,” and he didn’t listen and shoved it into her mouth repeatedly so that it made her gag a good two or three times.
Then I asked the nurse if he could retape the tube since she was spitting and tonguing it in and out (it was super loose), and he challenged me on that too. He finally agreed to retape the tube, and did so without checking to see whether it was functioning. I asked if he could please tape it slightly right of center because she seems most comfortable that way, and he looked up and SNAPPED at me, “Look, this is mine. You just hold her.” I think there was some other equally “shut up and stand there, lowly human” remark in there as well. After he retaped her he scooped her up and started bouncing her and patting her and trying to comfort her. I walked around to the other side of the bed and told him I could take her back now. He said, “Okay, in a minute,” and I repeated, “I can take her now.”
When things had calmed down I pointed out that I understand that he is just doing his job, but I’ve been with this particular kid every day for almost 4 months and have seen a million things tried and have seen what works and what doesn’t, and was trying to keep her from having to go through too much, and his only response was, “Well, whatever you were doing here wasn’t working.”
Ugh. I was tempted to call the nurse leader right then and ask him to be transferred off, but I didn’t want to make a scene based on bitchiness alone, so I kept quiet. I wish so much that I had not. Cut to 5:30AM Monday morning (roughly four hours after I fell asleep): I woke up and the Mean Man was feeding the baby, and I could hear that she was raspy so I went over to the crib and saw that her mouth was overflowing with secretions. WTF? He was standing right over her and hadn’t noticed that she had hacked up several spitballs.
I suctioned her mouth and then I asked him when was the last time he flushed her tube. He said he had been flushing it every time he came in – I don’t remember the exact interval. I asked if he had been flushing it like the previous nurse had showed him (they have a specific technique) and he said no, he was just pushing a little air into it – I think he said 1 cc of air. He literally was taking like 3 seconds to pop a tiny bit of air in with the syringe. Major red flag. So I asked him if he could please check her tube to see if it was suctioning because it had a tendency to clog and she sounded really raspy. He looked at the suction meter and said, yes, it’s suctioning. Um, no, I didn’t ask if the pump was operating. I asked if the TUBE was operating. So I asked him again to please check and he refused and said it was fine, and I think he “flushed” it again as if to humor me. Then he walked out.
So I was like, “Oh HELL no.” The kid was still coughing and rasping and gagging in front of me and the guy was refusing to do anything about it because her stats looked okay. Dude. She is at risk for aspiration, remember? Anything that doesn’t get suctioned can go into her lungs? She was already coughing the tube out anyway, so I pulled it out and checked it myself. I was right. It was not suctioning and the whole tube was full of secretions, with especially thick secretions at the end portion that goes inside her mouth and down her throat.
Now, as a point of reference going into the next scene, I should note that Leah has pulled this tube out by herself three times today. It happens on a very regular basis, particularly when the tube is malfunctioning (like when she has particularly thick secretions on any given day). You’ve seen how often I’ve talked about her yanking out her tube. Mandy and I have pulled it out on multiple occasions with the permission and supervision of her nurses, and have generally learned how to check to make sure it’s not stuck (because yes, that DOES happen), how to unstick it, how to see if it’s still suctioning, how to clear out the end once it’s pulled out, and how to test it in water to see if it is functioning. The only thing we haven’t learned is how to put it back in, and I wouldn’t do that by myself unless every nurse and doctor in the facility magically vanished and I was the only person who could do it, and even then I’d be nervous about it.
So. With that in mind, allow me to tell you what transpired next:
Recap: I pulled the tube out because she was coughing and gagging on it. I tested it to check whether or not it was suctioning (a matter of a few seconds). It wasn’t. So I hit the call button so that he would have to come in and deal with it. When he came in, I told him that the tube was not functioning because it was clogged, and he asked how it came out, and I told him I took it out because it wasn’t functioning.
The rational thing to do would have been to examine the tube at that point, and a) fix it if it was clogged or b) make me look stupid by demonstrating incontrovertibly that it wasn’t clogged. What he did instead was to start yelling at me about how that was totally out of line, and how he was going to call the nurse leader (I said, “Please do that”) and how I don’t have the education to do that, and how I don’t even know what this tube is doing (in this “you ignoramus, you just have no idea” sort of tone), and how now because I pulled it out she was going to have to go through more trauma when he put it back in.
Then, as if to illustrate his point, he shoved the thing back down her throat. Without checking whether it was functioning. Which we know it wasn’t.
Then he did his tiny ineffectual flush and said, “There are NO secretions in this tube,” and said it wasn’t suctioning because there was nothing to suction, and that her secretions have been low the last few days (I’m pretty sure this is because they have been really thick). And he said in an accusing tone that she has had blood in her tube in the past. Yes, I know – because the thing STICKS TO HER THROAT and irritates it! I told him again that it wasn’t suctioning because it was clogged and that you could HEAR that she had something to suction, but it fell on deaf ears.
He did wind up calling the nurse leader, and I explained the situation to her and assured her that I never would have reinserted it myself and in fact that’s why I pushed the call button, so he could come and deal with it, and that I am perfectly happy to not touch the tube but if that’s the case then they need to make sure they’re maintaining it, and yes I know I don’t have medical training, but for the record, this kid has pulled it out herself plenty of times, which she acknowledged was a good point. The conversation seemed to go well, and she said she would relate my concerns to the nurse.
Guess who never came back to check on Leah?
The next time I saw the Mean Man was when he came back with the nurse leader some time later to let me know that they had talked to the surgical team – I don’t remember the exact details of the conversation but what I got from it was basically that they tattled to the surgical team and probably made it sound like we were ripping out Leah’s repogle on a daily basis or something and that now they were going to come by to talk to me about not touching the tube. And he still didn’t check on her.
The surgical team did come in to look at her Mini button and then asked what had been going on with the tube. I relayed the events of the morning and the nurse practitioner said they really don’t want us messing with the tube (liability issue) but that it sounds like this was a one-time incident resulting from a responsiveness issue, so they were going to make sure that it was in the chart that she needs to have the water flush at specific intervals to make sure that it’s happening, and they were going to talk to the day nurse leader and see if they could get a regular set of nurses to work with her so that those taking care of her would be familiar with her issues and needs. I paraphrase – by this time it was already 7:30AM and I hadn’t been to sleep yet. I couldn’t go to sleep knowing the kid had no suction, so I had stayed up since 5:30 and suctioned every spitball as it came up until it was time for shift change.
A little after the surgical team came in (I think), one of the medical students came in and asked how things were going. I said that the tube could be functioning better but other than that things were okay. I know at some point the doctor had also been in on rounds and I had mentioned the tube to him as well. I told the med student she had been having problems with it and she asked if I was able to adjust it at all, and I said I got in trouble for trying to help her and asked if she could check its function. She said she would get the nurse, and I asked her to please get the nurse who was taking the next shift instead of the night nurse. She came back and said they were doing shift change but the day nurse would be in shortly.
The night nurse and the day nurse both came in and examined the baby, I guess as part of shift change, and all the way through she was rasping and coughing. I asked them to please check the tube, and I think at some point the night nurse “flushed” it again and they went out and the day nurse said she would be back. Things get a little blurry here in terms of the order of events because I was freaking exhausted. What I do remember is that at some point I couldn’t sit there any more and watch the kid rattle and rasp and look at me with these big, “Please help me, Mama” eyes, so I went out there and told them they needed to come and deal with this. They asked me what I thought was wrong, and I said, “Listen to her!” She was coughing and rasping and gagging on the tube. The Mean Man (who I’m sure had already painted me as a hypochondriac-by-proxy wannabe-doctor troublemaker to the day nurse) kept insisting she was fine, and the day nurse tried to reassure me that the sound was a good thing because it meant the tube was suctioning (just the opposite actually). She had also hacked up a little spitball and I asked him to suction her mouth and noted that this was proof the tube wasn’t working well, and he said those were just oral secretions. First of all, even if they were “just” oral secretions, that’s part of what gets suctioned into the tube so she doesn’t aspirate. Second of all, maybe they were oral secretions at some point, but then they went down into her little pouch and didn’t get suctioned into the tube, so she hacked them up. Because the tube wasn’t working.
Right at that moment, the med student poked her head in to ask if we had figured out what was wrong with the tube and gotten it working, and before I could say a word the night nurse curtly told her it was working fine and waved her away. I swear my jaw nearly hit the floor. WTF? Did I just see that? A nurse lying to a doctor about a patient’s status? Really? He also assured the day nurse that he had flushed it and it was working.
They left and I just stood there stunned for a minute. The day nurse had said she would come back once she was done with whatever they do when they change shift, but once I peeled my jaw off the floor I went back out and let her know that even though the rattling noise sounds like the tube suctioning, it’s actually not coming from the tube and when you take the tube out the rattling continues in her chest. She nodded and said she would come in shortly. When she came in, I asked again if she could please flush the tube, and she did – and oh hey, guess what? It was SUPER-CLOGGED. And as soon as all the gunk came out, I looked up and said, “That’s been there since 5:30 this morning.”
After the day nurse stepped out I called the social worker and asked her what we could do to ensure that the Mean Man never gets near my kid again.
Later in the day one of the other head nurses came in and reiterated that the water flush would be added to Leah’s chart so that we wouldn’t wind up with this responsiveness issue, and I mentioned my concern that the night nurse had re-placed the tube without checking it, and that he had lied to the med student, and noted again that I definitely would not have re-placed it myself, and basically said that I could handle being scolded because I understand I’m not supposed to just take the tube out but I did what I had to do in the moment, but it was absolutely not cool that he shoved it back in without checking it, that he didn’t come back and check the tube later, and that he told the med student it was functioning when it wasn’t. She said she understood I did what I did in Leah’s best interest and reiterated that they would talk to him about the incident.
So. CRAPTASTIC morning. Baby’s Uncle Ralph came by a little later in the day and convinced me to take a nap, so I got another 45 minutes of sleep in. I have no idea whether the rest of the craptastic day happened before or after my nap – I think some before and some after. The rest of the craptastic day involved three failed attempts at IV placement (with no ultimate success) and one godawful blood draw. They weren’t able to find a good vein and what few veins she had were probably tapped out by the IV efforts, so they basically had to milk the blood out of her arm. The PICU doctor had shared with me earlier that many children with Down syndrome (he always refers to it as Trisomy 21, the more technical term) have tiny veins and that it may be difficult to place the IV, so at least I kind of anticipated that there would be difficulty, but Leah didn’t get the memo, so she was thoroughly distraught throughout the whole ordeal.
For the rest of yesterday, all day today and up to the present, Leah has continued to be very raspy and rattly, with thick secretions and lots of tube clogs. Tonight was awful; she would not stop rattling, even after a long block of Magical Mommy Time (where Mandy puts her at her shoulder and pats her back). Usually that knocks her out but tonight she just kept rattling away, even when she was calm. I asked the nurse if one of the residents could come in and see what we could do to help her sleep, and one of them came by to examine Leah. I kid you not – the minute the doctor walked in the door, Leah stopped rasping, and she was quiet during the whole visit. When the doctor left, Leah drifted off to sleep. Apparently this doctor is magical and we need to keep her in the corner of the room at all times. I hope she doesn’t mind.
So now Leah is FINALLLLYYYYY sleeping. Halle-frickin-lujah. So completely grateful that her nurses since the Mean Man have been awesome and very attentive to the issues at hand. Now we just need to figure out why Leah is having so much trouble with the tube. The last thing she needs is to aspirate again – and if she aspirated in the past two days we’ll know who didn’t help.