even a small milestone, is a milestone

Two weeks ago, Dr. Nater had been contemplating a laryngoscopy, but we really felt that Lucy, from a mental standpoint could not handle it.  The conversation continued and last Tuesday evening we ended up going ahead with the ENT evaluation because we needed to get a good look at her throat and vocal cords.  We wanted our speech therapist there to be able to give some insight.  Again, with her anxiety sky high, we gave her a healthy dose of versed and then the team kicked us out of the room.  Surprisingly, Lucy did fantastic with the laryngoscopy.  This procedure is where a thin flexible viewing tube is passed through the nose and guided to the vocal cords.  They were able to get a good look at her vocal cords and there was no additional damage from intubation.  On the fly, they decided to offer her some pureed fruits and she accepted.  We were able to see that she was not aspirating on thicker foods.  A big success and even better that they were able to do it all at the bedside.

We got the okay to offer pureed foods:  a total of five teaspoons, three times a day.  That equals about three medicine cups of food a day.  The funniest thing happened though, after the laryngoscopy, I thought she would be put off by foods for another couple days, if not more.  The very next morning I get to her room and she looks at me and asks for water and animal crackers.  I was able to steer her back to puree fruits, but another huge win.  I actually thought we wouldn't need a swallow study after that, but unfortunately, in order for her to consume thin liquids we have to again make sure she is not aspirating.  In order to do that, we need to be off nitric.  It was our plan to start weening on Friday to hopefully be off for a full day and do the swallow study Monday morning.  We started the day at 10 parts and got as low as five, but Lucy kept having these spells where she would dip her saturations into the fifties.  The worst part is that she was showing no signs of distress, no retractions, no increased respiratory rate.  It is really scary to think about being at home for that to happen.  You aren't hooked up to monitors at home, so you really rely on those signs to tell you something is wrong.  Needless to say, she did this all weekend and by Monday morning we were still on 10 parts of nitric.

Here's the crazy part, when you're doing good and improving it's really easy to lose sight of the progress you make.  The little things don't seem so important.  If I think back, coming off the breathing tube (twice), decreasing chest tube drainage over the course of week, pulling chest tubes and coming off all IV medications seemed like giant milestones.  As I stood in rounds Monday morning to discuss the plans for the day, I started to cry.  The first thing I said, "I'm so frustrated because I don't feel like we made no progress over the last week",  Yet in two paragraphs, I have summed up a week of milestones.  How easily I forgot that eating, just eating, is such a big milestone for Lucy.

Through the rest of the week into the weekend, Lucy continued to ask for food (none of which she can have), graham crackers, avocado, ice cream, and sour cream with onion strings.  Luckily, almost every time I can offer her pears or apples and she accepts.

Monday plans were to ween slowly.  Instead of dropping 2-3 parts every four hours, we dropped by 1 every six hours.  The hope is by tomorrow she will be off nitric and we can do a swallow study on Thursday.  The only other thing keeping us in the ICU is her oxygen.  We have bounced around from four to twenty liters based on her saturation levels.  Today, they also decided to give her blood.  What they hope is that this blood will bridge the gap and give her some extra red blood cells to carry oxygen to the body.  Since we are continually doing labs for electrolytes and coagulation, we are removing blood faster than she can create red blood cells to carry oxygen.  After the blood was given, her saturations took a nice jump to the 80's.  We'll see if that has a lasting impact and we can bring her oxygen down.

I would also like to give a shout out to all the friends and family that have helped with Connor over that last couple weeks.  As most of you know, he has stayed with my parents full time since Memorial day (holy cow, how long ago was Memorial day).  We clearly did not anticipate being in the hospital this long, so when it came time for them to move so many stepped up and helped to care for him so Mike and I could continue to focus on Lucy.  It is quite a relief to know he is in great hands!

We continue to be blessed by all that have supported us.  Thank you.

For those that like to have specific prayers, here they are:
For Lucy to pass her swallow study and be able to eat and drink to her desire (albeit fat free).
For her saturations to remain above 75
For us to be moved to the floor ASAP

I'll leave you with this cute interaction.  This past week, I brought up Lambie, one of Lucy's bedtime buddies.  She was so sweet when I showed her giving him hugs and then they colored together.