Friday, May 14, 2010

Chrissie Update, Day 26

QUESTION (from a reader):

"i've always assumed that Chrissie's breathing difficulties were due to the trauma of the surgeries, her damaged parts of her body that make up the respiratory system, etc., and that maybe the meds also contributed.  but now, while reading this last post, i am wondering:  is it possible that the reason Chrissie's sats keep dropping with less oxygen is due to the fluid/mucous in her lungs? that would DEFINITELY make it more difficult to get a good supply of oxygen into her blood.  if you get the chance to answer this, great... if not, i understand. ;-)  praying for all of you!"  - michelle

Yes, the fluid/mucous is definitely a huge issue for her lungs.  Part of Chrissie's lung diagnoses is "Bronchiolitis".  "Bronchiolitis is a common illness of the respiratory tract caused by an infection that affects the tiny airways, called the bronchioles, that lead to the lungs. As these airways become inflamed, they swell and fill with mucus, making breathing difficult." (quote taken from link on Bronchiolitis.)  Apparently, exposure to cigarette smoke can increase complications with the lungs and Bronchiolitis, and, unfortunately, in the orphanage where Chrissie lived for the first 4 years of her life (minus the first 10 months she spent in the hospital in Belgrade, Serbia), Chrissie was exposed to more second-hand smoke than one can possibly fathom.  Chrissie's orphanage room was RIGHT NEXT TO the orphanage's smoking room.  There were two doors that connected those two rooms...the smoking room and Chrissie's room...so she has been breathing second-hand smoke for 4 years, continuously.  In Serbia, just about every single person I met over the age of about 12 smoked cigarettes.  The smoking room at the orphanage was CONSTANTLY filled with smoke.  CONSTANTLY.  Chrissie breathed this CONSTANTLY for four years.  (I am not faulting the orphanage or Serbia...smoking cigarettes is part of their culture...it's just what everyone does and no one looks down upon it like we experience here in the US.  It may be lack of education about the effects of smoke on the lungs and body and carcinogens, etc.  I don't know, but I digress.)  In addition to breathing in second-hand smoke for four years, Chrissie also spent 10 days in the hospital in Belgrade with Pneumonia in the winter of 2008/early 2009.  Then, in February 2010, Chrissie got "Metapneumovirus", which is another respiratory infection which sent Chrissie into respiratory distress, in a very similar way that this Bronchiolitis has, but not nearly as severe.  Chrissie spent 3 or 4 days (can't recall!) in this same hospital, 2 nights in PICU, with Metapneumovirus.  (Metapneumovirus is similar to RSV...it's a respiratory virus that attacks the airways and lungs, making it difficult to breathe, which can be particularly risky for children with lung disease and pulmonary hypertension, which Chrissie has.)  With all of these factors in Chrissie's history, and given the current condition of Chrissie's lungs, the doctors believe she has underlying lung disease, which complicates getting her lungs cleared up.
 
Currently, Chrissie has severe Bronchiolitis with TONS of thick yellow mucous filling her right lung, to the point where the bottom lobe of the right lung is collapsed.  Very little oxygen can get into Chrissie's right lung, and her left lung isn't in superb shape, but it's definitely better than the right lung.  Chrissie also has Pulmonary Hemorrhage, which is "an acute bleeding from the lung, especially in the upper respiratory tract and the endotracheal tube."  (Quote taken from Wikipedia link.)  The pulmonary hemorrhage is controlled by placing higher pressure rates on the ventilator, similarly to the way we would apply pressure to a cut to get it to stop bleeding.  Unfortunately, the higher pressure of the vent can blow too much pressure into the good lung, which could cause her good lung to rupture (since the amount of pressure being blown into Chrissie's lungs can't equally flow into both lungs due to the amount of fluid and collapsed area of the right lung, so more pressure goes into the left lung, which is dangerous.)  Then, when they try to suction out the mucous and secretions, the pulmonary hemorrhage (bleeding) can cause complications.  It's a very fine balancing act, and The Princess is a very particular sort of girl, which she is quickly teaching everyone who works with her.
 
Yesterday (Thurs. 5/13), Dr. Tenner (the PICU doctor on call) felt like Chrissie's lung x-ray and her blood gasses (which they assess every 6 hours to determine if Chrissie's lungs are functioning properly) were showing signs of being able to be weaned from the ventilator.  Dr. Tenner had the respiratory therapist turn down all kinds of settings on the vent, in an effort to begin the weaning process, but that left Chrissie gasping for air for the entire day.  (The gasping was very similar to when a young child cries really, really  hard, then gasps for air as he/she quivers and tries to stop crying.)  Chrissie literally gasped for air all day long, although she was still on the ventilator, just at lower pressure settings, along with rate and peep and volume adjustments, which Dr. Tenner felt Chrissie's lungs were strong enought to handle.  As they watched Chrissie's gasping, they tried all kinds of things to assess the cause, short of turning the pressure back up on the vent since they so badly want/need to wean her from the vent.  Nothing helped Chrissie to stop gasping.  They determined that the vent wasn't stacking her breaths, so they decided to leave her that way.  Chrissie's oxygen sats never got higher than about 86 the entire day, many times dipping down into the 70's, which has not been the norm for Chrissie recently.  The RT wasn't comfortable with the low sats and Chrissie's gasping, so she asked Dr. Tenner to order another x-ray of Chrissie's chest.  It turned out looking better than they thought it would, but that still left us without the "fix it" answer.  Dr. Porisch stopped by in the late afternoon to witness Chrissie's gasping, so she asked Dr. Tenner to come watch Chrissie's breathing/gasping (which Chrissie had been doing for about 8 or 9 hours at that point), and they discussed things, but still didn't come up with a solution since they were really hoping to wean her from the vent.  Then Chrissie's blood gasses came back horrible around 6:30 or 7PM (at the time of testing), with a very low pH and high Co2, so they were forced to turn the pressure on the ventilator back up, only to discover that Chrissie stopped gasping for air at that point.  Problem solved.  She just wasn't ready to go down on the pressure of the vent.  It was a hard day to watch Chrissie gasping and struggling to get her oxygen sats higher.  I tried my best to advocate for her since she doesn't have a voice, but I didn't really know what exactly to advocate for since  Chrissie had never done that gasping thing before.  I just kept asking everyone to try to do something to help her, trying to make sure there wasn't an underlying problem, mentioning over and over how Chrissie had never done that gasping type of breathing before, but I didn't know what the solution was!  Now we know.  Chrissie wasn't ready to go down on the pressures of the ventilator.  Period.

Dr. Tenner came in to our room this morning and apologize for "making Chrissie suffer" yesterday.  She confessed that she's admitting this is not about "Dr. Tenner", but is about Chrissie, and Dr. Tenner is going to have to be more patient and let The Princess do things her way! :-)  I know that everyone is eager to get Chrissie weaned from the ventilator so that she can get on to the next step of healing and reduce complications of the oxygen and ventilator, but Chrissie has not declared that she is ready to do that just yet.  Baby steps.  Dr. Tenner did explain that most ECMO patients do not wean from the ventilator as quickly as non-ECMO vent pateints, but Chrissie has progressed in so many areas so quickly, that she felt like she would get off the vent faster than other ECMO patients.  We're all discovering that it's going to be longer than everyone had hoped for.  Chrissie "rebels" when she doesn't like something, so she's training everyone how to obey her and let her be the boss, which is exactly what she's always wanted! :-)

Last night (late Thursday night and wee hours of Friday morning), we had an aggressive RT named Brandt.  Oh.My.Word!  Brandt got a TON of secretions out of Chrissie's lungs, unlike anything I've ever seen.  They started the "IPV" Albuterol treatments every 4 hours (the treatments that puff quick bursts of oxygen mixed with Albuterol through a nebulizer/oscillator style device), and those are really breaking up the secretions in Chrissie's lungs.  (Although those were started early last week, then Chrissie started bleeding, so they stopped those treatments.)  Brandt did a major overhaul on Chrissie.  He cleared TONS of mucous from Chrissie's lungs AND from her mouth and her nose, too.  Unfortunately, the secretions were so thick and so heavy, that Brandt had to get a long suction nozzle and shove it down Chrissie's throat over and over and over, making her gag and gag and gag, along with some mouth bleeding, which Chrissie LOATHED.  But, Brandt was able to get a TON of thick, thick, slimy "snot" out of the back of Chrissie's throat, which probably attributed to Chrissie's low oxygen sats.  Brandt also stuck a small catheter tubing down Chrissie's nose and also down her throat to suck out more mucous.  The girl was FILLED with mucous!!!  After Brandt's irrigation session, Chrissie's oxygen sats went up to 99% for a long time!  And Chrissie endured no lung bleeding.  Praise the Lord!  (Although Chrissie HATED every second of that irrigation torture!)

Then, in the middle of the night/wee morning, at about 4 AM, Chrissie's belly turned into a watermelon.  It was hard and when thumped, sounded just like a watermelon.  They ended up having to suck out all of Chrissie's feeds, which had back up into the large intestine (I think).  They got out something like 160 cc's of feeds and 80 cc's of air.  They also think Chrissie aspirated some of that since they saw a little white formula in her mouth, which shouldn't have been there because she is tube fed.  Anway, after all of this, Chrissie felt much, much better.  Today they decreased Chrissie's feeds to 25 cc's/hour instead of 50 cc's/hour that she had built up to. 
 
Oh, and let me share a little story about how I know for sure that Chrissie is in there!  Today, every time a nurse or RT or doctor or anyone other than Mom came near Chrissie, she immediately clamped her teeth together with the most fierce grip I've ever seen...ever.  You know why?!?  You got it...she did NOT want another one of Brandt's irrigation torture sessions!!!  She figured that if she clamped her teeth together as tightly as possible, with a death grip, that NO ONE would be able to stick anything in her mouth and make her gag and bleed.  She actually had me laughing out loud.  HARD.  That's my warrior princess!  Way to protect yourself, girlfriend!!!  It was hilarious.  (Well, not so funny for those trying to suction her, but I was so proud of my baby girl, fighting to protect herself without even having a voice!)  Prior to today, everyone was always complimenting Chrissie for her obedience.  Every time she would bite her breathing tube (particularly when anyone tried to suction her), all I had to do was tell her to let go, and she would.  She received so many praises for that obedience.  Until today, when all obedience stopped due to the trauma of the septic man irrigating every orifice above the belly button.  Nothing could convince Chrissie to let go of that Jaws hold.  Nothing.  By golly, she was NOT going to let anyone torture her like that ever again.  Ever!  Now, don't ask again if Chrissie is really "in there".  I think Chrissie clearly exhibited her ability to remember what happened last time she obeyed the suctioin man.  Chrissie also had the cognitive function to rebel from all of that sweet lady-like obedience and stick with her warrior spirit as she clamped her jaw together in an effort to protect herself from such invasive, gagging, "let me shove this rod down your throat and jiggle it around and jossle it back and forth as I vacuum out your insides, never-mind the blood in your mouth, never mind the inability to pull your head away from this Hoover, never-mind the catheter tubing shoved down your nose and throat, sucking out all things liqid, no matter how hard you fight, there's no getting away" type of mucous molestation!!!  NO THANK YOU!  If Chrissie could talk, I have no doubt she would tell Mr. Roto Rooter, in her Southern oh-so-polite manner, "I no love that."  Atta girl! ;-)

This weekend, our family plans to go to Seaworld for the Praise Wave Christian concert series.  Pray for no rain!  (It's storming big time in San Antonio now with a not-so-lovely weekend forecast.)  My mom will stay with Chrissie Saturday and Matt's parents are coming Sunday.  Pray that Chrissie will behave herself and have two non-dramatic days!  Keep praying for total healing of Chrissie's lungs.  She's a warrior princess with a mighty army of prayer warriors fighting on her behalf.  We are forever grateful.

To God be all the glory.  He is mighty to save.  Keep praying...

1 comment:

TexasLauren77 said...

Your update about Chrissie's reaction to Mr. Rotor Rooter made me laugh out loud!! Bless her little heart! :) I've never even met her, but, by gosh, I can't wait until she's able to speak to you with her voice about all of this just to hear what she says! It's clear she's in there and is doing her best with everything she's got to get her thoughts across right now! Ah...what a day that will be!! Y'all are still in my prayers daily!

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