12/14 - Another Situation

First of all I am sorry, but I noticed today that I had 11 comments to "moderate" when I didn't even know that I set it up that way. So, the comments are now there. Please feel free to comment on the blog entries, I have relinquished my control-freakness.

Emily's been developing another infection and we've been battling it with the NIV protocol. Basically, we have been using the BiPAP, Cough Assist, Postural Drainage, CPT, and Suctioning to clear her out and get those thick secretions out of her lower lungs.

DISCLAIMER: They way we do things with Emily does not make other ways right or wrong. It is just the way we do it. Also, we are learning to tune her therapies a little here and a little there for optimal support. This is a "living" experience and is constantly changing. But, the bottom line is that with these devices we can improve Emily's respiratory condition, we believe, vastly. They are tools. We don't read much about the "bad times" that other families have, so I am recording all of this here, so others can learn from it... or critique it... we're open to anything.

I had just finished one of Emily's longer treatments (neb/cpt, cough assist, drain, cough assist, suction) and was setting Emily up to for a comfortable evening with Veggie Tales when she started coughing pretty bad. I switched on the cough assist again to, well, assist her coughs. In addition I started doing manual abdominal assists in sync with the cough assist. To give you a picture: I had the bottom side of my forearm below my elbow behind her head to give some resistance while I held the mask against her face. My arm ran down her side so I could place my hand below her Xiphoid Process, on her abdomen. It sort of looks upside down if you can imagine. During the exhale I would give her a thrust sort of in and upward. Try it, it makes you cough. :) Anyway, this is important b/c it is SUPER helpful in getting things up from the lungs and making them cough WITH the cough assist machine EVEN IF YOU ARE BY YOURSELF. After one set of 5 breaths I started suctioning when her sats started dropping into the 70's and then the 60's.

Emily's right nostril is very difficult to get down very far, so I was worried I wasn't going to get the good stuff out. I took the suction catheter and pulled on it with my fingers like you would scissors and a ribbon to make it curl. I wanted to get it to curve somehow to get down into her airway easier. Maybe b/c that warmed it up and stretched it a bit, or both, but it made it flimsy so it went right down where I wanted it to. The problem was that the secretions were so thick that they wouldn't suck out. I dripped some saline in and turned up the suction a bit, but I couldn't get the stuff out of her. Then she started gasping for breath.

I didn't want to pull the suction catheter out for fear of not being able to get it back in, so I gave her some cough assists with it still in (with manual abdominal assists) to give her the volume she needed to actually cough with the machine.

It is general considered dangerous to use the cough assist with the catheter down the nose b/c it could get pulled up and put down somewhere other than the larnyx where we need it to be. But that is what I chose to do at the time b/c I was more concerned about her getting some breaths than anything else.

I would have used the Ambu bag as well, but I wasn't EXACTLY sure where it was after our big move and I didn't want to leave Emily b/c she'd pull the catheter out. So, I used the cough assist to give her some breaths and coughs since every breath was really followed by a cough anyway. This didn't work right away, but after a few sets of this and continued suctioning down the nose and in the mouth (with a yankauer, NOT the suction catheter that I was using down her nose) her sats started coming up again.

Let me tell you, the abdominal assists really work. I wasn't getting anything up with the coughs until I started incorporating them. We've done it with two people, but I was alone this time. She started spitting out all this nasty green stuff that had come up from deep down, that is what you want to see. :) Ask your Pulmonologist and/or Respiratory Therapist about this if you don't know about it. It also brought up the plugs to where I could suction them out. I am sure everyone has slightly varying ideas of what a "plug" is... if we get a clump of junk that is either white or green (the kind that makes the tubing jump while it makes that loud *SCHRUNK* noise when you get it out) we call it a plug, it's easier. But, a plug is really anything that blocks
the alveoli from filling with air, whether it is an inhaled object or mucous of some sort. When the alveoli can't fill with air lung tissue will start to collapse, like a balloon with no air. This is called atalectasis. Every thick thing isn't a plug and all plugs aren't necessarily thick.

Anyway, with the suction catheter already down in her airway I was right where I needed to be to get the secretions up and out. The whole thing lasted about 10 mins before she was back at 98-99 all on her own. I put her back into a flat position to give her a break from draining and started with CPT again.

By this time Diana was back from the store and I had to, um... see a man about a horse, so she continued with another couple sets of cough assist to get what she could completely out. We did try going down her nose again, but couldn't get down so we got what we could out of her nose and the back of her throat. She is still coughing a bit off and on and we will do some more assists and suctioning before another official treatment time, but she is maintaining on her own and SHE IS HAPPY (the whole reason we keep doing this!). Diana was out getting Emily's antibiotics with Annabelle when this happened, so now we have some good ole' drug help too. :)

I have to explain two things.
  1. First of all I have a "flighty way of thinking" as one of the PICU Dr's put it, so let me know if this post is a bunch of pish-posh and hard to read.
  2. Second, Emily is our second SMA baby so these things have been a normal part of our life since 1/12/2004, when Linnea was first hospitalized in Denver... and that is why I am writing about it... because you need to know that you can do it too. Quick reaction to difficulty becomes sort of second nature during these unfortunate times and I think that we SMA parents need to feel empowered with the information that is available to us, especially because we live it day and and day out. If you think about it, very few of these Dr's know what SMA looks like outside of the hospital/PICU "acute" setting, so stand up to them and tell them what your child needs. There is plenty of medical experience backing up these protocols and we are the experts when it comes to the ongoing (chronic) care of our kids. Don't let anyone take that away from you. A good Dr. should tell you the same thing.
P.S. - Emily is getting her 5th tooth!! They're so cute, but they sure cause a lot of problems with all the secretions they create. :(