hindsight

I keep thinking if I had known that Lucy was going to be re-inutbated early Wednesday morning, I would have made sure I held her all day Monday and Tuesday after the chest tubes came out.  Hindsight is cruel.  I have had plenty of cruel thoughts.  What if we fenestrated initially?  What if we didn't go to the cath lab?  What if I had pushed harder for her breathing treatments?  Why didn't I hold her?  Would any changes have gotten us home sooner?  Unfortunately none of those 'ifs' change where we are today, so I am moving on and remember that the day this tube comes out we'll be sitting in the chair together for as long as she'll let me.

I know so many have been waiting since last Wednesday for an update.  I thank you for being patient.
To be honest, not much has changed in the last week.  Wednesday to Friday we were trying to understand the reason for her lung issues.  Cultures of blood, urine and breathing tube along with a viral panel were sent.  All came back negative.  She had been on antibiotics as a precaution, so we aren't sure if those masked anything going on in her lungs.  We continued her breathing treatments in hopes of breaking up lung secretions.  Over the weekend we made minimal changes.  Mike and I just hung out, helped with her treatments and watched movies with Lucy.

Monday morning, the infectious disease doctor came to review Lucy's case to see if we could change or adjust her antibiotic regimen.  The first question she asked was, "who has been visiting?".  This is exactly why we are so strict about visitors.   Unfortunately you don't always know what you have been exposed to and for kids like Lucy, especially when her immune system is down, the littlest things can be devastating.  Her current regimen, they felt covered all her bases and that morning her x-ray looked better than it had since intubation.  Tuesday morning, her right lung had collapsed again.
The next step would be a rigid bronchoscopy.  This procedure is done in the OR under general anesthesia and would remove the large secretions blocking her airway.  Yesterday afternoon, Dr. Sherman (ENT) came to do a bedside evaluation and put her on the schedule as an add on.  She wasn't able to go Tuesday afternoon because you have to be NPO to go under anesthesia.
Can you guess what happened?  You can't, come on.  This morning, her large airways cleared up and x-ray looked better.  All you have to do is schedule something......and it appears that Lucy will then fix it.  With clear airways, a rigid bronchoscopy would not provide any benefit.  Here we are again in another vicious cycle.  Kids do better off the breathing tube after the fontan, to stay off the breathing tube she has to be able to cough up the secretions to keep her lungs open, she is having trouble coughing up secretions because they are thick, her secretions are thick because she is dehydrated, she needs to be dry because of her fontan physiology.  If her x-ray is the same tomorrow morning or even better, the team will start to weigh the risks and benefits of extubating.

Again, we're asking for prayers of strength.
-For Lucy to be strong enough to be extubated for good
-For Mike and I to continue to handle the uncertainty

I'm going to brag a little bit.  Miss Lucy has handled this intubation like a champ.  Usually kids need to be on moderate to heavy sedation in order to not pull the tube out.  But THIS GIRL has been on minimal sedation since Sunday.  She hates the breathing treatments and being deep suction (where they shove a tube down your throat to suction out secretions).  Yet, through every treatment, she follows your directions even as she cries.  Open your mouth...done, cough as hard as you can....done, one more time...done.  This is probably the hardest thing we've been through and she has been polite, respectful and a model patient.  We couldn't be more proud of how she has handled herself!

Only a true hospital kid falls asleep holding her breathing tube.

She was able to get a little play time in with water marbles.  These things are pretty neat.  The more water you add the bigger they get!