Friday:
So it is 4:30am and we are doing Max’s second respiratory treatment of the night. I am definitely closing in on a look that could only be described as “hospital exhaustion chic” complete with greasy hair and super awesome sweat suit. I am literally counting down until the cafeteria opens for coffee and possibly a calorie splurge of a donut. ***This just in: Found out that while there are some good things about being in a smaller facility (e.g. x-ray doesn’t come at the ungodly hour of 3am), there is one major flaw, no cafeteria or Starbacks until after 6:30am, ACK! The PICU is locked down from 6:30-8am for shift change report, so I can’t leave or come back between those hours! Help, a hungry pregnant lady is trapped in the PICU (fyi – I added this at 7am). Okay, Aaron did bring me crackers and power bars, but doesn’t coffee and donuts sound SO MUCH BETTER.
Words/phrases we have become very adept at using:
Moving good air (our personal favorite)
Crackles (possible fluid in the lungs)
Infiltration (aspiration of foreign material in the lungs that has decided to set up residence)
Rubbing
Wheezing
Diminished (when the air isn’t moving well in a particular area)
Atelectasis (collapse of an area of lung)
We are currently dealing with infiltration, probably the aspiration, that turned into crackles, that then became rubbing/wheezing, giving us diminished lung sounds and are now trying to prevent atelectasis. The infiltration is in the right upper lobe. How do we get rid of it? Well, we have to stop the bacteria growth with antibiotics and then just think of the Mucinex commercials. We have to get those guys out. Here are the kickers. Max likes to lay on his right side, because it is easier to breathe, go figure, those lungs are open. Also, when you turn him on his left side his oxygen levels decrease because the air isn’t moving as well. They continue to drop during the treatment because we are really aggravating the “yuckies” and moving them around. Now to add to the fun that is all this crazy we switched out his g-tube button a few days ago in hopes that some of the problems might be related to needing a new button (which happens occasionally). Well, when we change the button out we have to be careful for the next few days that what little irritation we caused his g-tube site can heal properly. Unfortunately, his increased treatments aren’t helping that process + the Bi-Pap, which puts some air in his belly = leaking food when he is on his left side. So here we are trying to run that fine balance of nutrition, rest, and treatments and we end up with his food (and don’t forget stomach contents leaking all over the poor kid. Yuck and crap.
Now this evening we finally got to meet Max’s new pulmonary doctor. We REALLY LIKE HER! She has lots of experience with SMA (she came from a much larger facility). I think we may even be able to learn a thing or two. The first thing she is gonna set us up with is antibiotics to have on hand for any time there is a respiratory issue. She feels we could have prevented this had we only had better communication (on the part of those within her office). We talked for quite a while about our protocol, her background, and our thoughts of the respiratory therapists here (while they are super nice, they aren’t very aggressive with treatments, but in their defense maybe they are deferring to us more than they might usually). We did have one slightly disturbing incident today where Aaron asked a therapist to do a deep suction (which is a catheter that actually goes into the lungs) on Max and she seemed uncomfortable and then wanted to do it without a sterile kit (just an open catheter suction). Aaron stopped her because that is clearly unsanitary. We brought this up with the therapist this evening and she was even shocked, so maybe it was a miscommunication. I think we were a little spoiled by our “think outside of the box” group at MUSC. To make a comparison, the skill level we have seen here seems more like what you would see on a regular unit floor RT vs. ICU.
Well, as you all know talking (and blogging) a lot may be a habit of mine, but it is one that I think comes in handy sometimes. I find that if I tell doctors a lot of info generally we hit something of true value that solves a problem. For instance, as Dr. Stewart was leaving tonight I happened to mention Max’s tooth and how one of our concerns on Sunday was that he has actually aspirated on it. We said how relieved we were that the x-rays didn’t show the tooth. She said that a baby tooth may not show well on the x-ray and she really wished she knew this (fyi – I have told every single medical professional I have spoken with about this). If Max doesn’t show much improvement tomorrow she is ordering a CT of the chest. Just when we thought we had passed the major hurdles, something else to worry about. I don’t know who I will be more mad at if this tooth is the problem, myself or the ER staff for assuring us that it would have showed. As a side note, I have to give Aaron props, in addition to his usual awesomeness (they guy did bring me Chick-fil-a for breakfast) he has never been convinced that the tooth wasn’t the issue. He looked up a lot of x-rays of swallowed teeth and they weren’t as evident as we were told they were. Now he and I are both hoping that this is not the case, because then they would have to go into his lungs to retrieve it.
Saturday:
During the night we rolled with treatments every 3 hours. At 3am we noticed blood on the bed. Max’s IV was messed up and we had to pull it. I asked about waiting until daylight to replace it, since he is only getting the antibiotics through it twice a day. Well, his next dose was due at 5am, so we had to go ahead and get a new line. That is all fine and good, except he is a really hard stick and she wasn’t having much luck in the way of locating a good vein. She was able to get one and a half hour later we were getting back to sleep. Well, when I went to get him ready for his next treatment I turned him only to find his fluffy friend “Jack the Chameleon” was soaking wet. Apparently his IV meds leaked all over instead of going into Max’s line, so they ended up pulling that IV out and are now going to have to try and find another one. The poor kid is exhausted with the increased treatments and now we have to wait again after treatment for a new IV. This is why at 3 am I was like, can’t we just wait until the morning for this. I’m not really fond of a middle of the night IVs that aren’t emergent. It took two additional nurses before we finally got a working IV this afternoon. We have definitely seen some improvement today. We have been able to decrease his oxygen to 1 liter vs. 5 from Thursday. He still freaks out if you try to take his air (aka Bi-Pap) off of him. I think the increased treatments and deep suctioning are paying off. Poor kid is now on three different nebulizers, one of which will have to last for 28 days (it’s an inhaled antibiotic). Dr. Stewart seemed pleased with his progress today, but I don’t think we are going anywhere until Monday at the earliest. On top of everything else I feel a cold coming on, so Aaron went home for a couple of hours this evening and I will go home to sleep for the night. I hope they have a much less eventful night than we had last night.
A few thank yous: Of course we appreciate all the prayers. In addition Max’s nurse Robin stayed with us for the ambulance ride and until we got settled in the PICU on Thursday, which is a really long day. She returned on Friday loaded down with fruit, cookies, protein bars and drinks for us. My cousin Lisa brought us dinner on Thursday night and my brother Travis brought us some dinner tonight. I will say it is nice that this PICU allows food in the rooms.
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