Friday, August 25, 2017

Post-Op Day 17

Today did not start off well. First of all, I got very little sleep. Sometimes, I just feel unsettled, and it is hard to turn everything off in my mind to be able to fall asleep. The last time I looked at the clock was 2:30am, and I woke up at 6am.

Then, shortly after I got to the hospital, the ENT team came. The cardiology fellow wanted to chat with them about Harlie's trach size.

Yesterday when Harlie was struggling and tugging while breathing, it made them wonder if her airway is big enough. You might remember when I explained that while she's on the vent they use a cuffed trach. They inflate the cuff to stop air from leaking around the trach tube. This means that the only airway she has is through the trach tube.

ENT said that upsizing her trach would be too risky right now. She needs more time for her fresh stoma and that breakdown to heal. Plus, they have always felt that her trach size is appropriate for her and there is no guarantee that upsizing her trach would yield positive results.

Of course her trach site would heal better if she wasn't on the ventilator. And we can't get her off the ventilator because her movement is limited partly due to the trach site.

Ultimately they said that if she can't breathe, then they might be forced to upside sooner than they would like. But, they would like her to go to at least Monday and reassess then.

So, the plan is to sit tight, and give her more support breathing. So, no more sprints until next week at least. Oh, and she was febrile yesterday and this morning. And her respiratory cultures started to grow something, so they had to start Zosyn (antibiotic) again. Sigh.

After the team rounded, I went to the gym. I felt so defeated. Zero progress. We are constantly finding ourselves at the same hurdles. Every solution to one problem, is the cause of another. I just feel like we are chasing our tails. What could go wrong, has gone wrong. And this whole admission is becoming a nightmare. Harlie has a complicated and comprised airway, heart and lungs. Any one of those is horrible. It is like she won the worst lottery of all time.

I was definitely feeling very down. But when I returned to the hospital after a couple of hours, her nurse (Alexandra) said they had done trach care and that her trach site/wound looked much better today! So, thats great! She also did some chest PT and gave her a hypertonic saline neb treatment to help break up her secretions. And that yielded great results. She was able to cough up a bunch, which is awesome.

Then all of this happened...

Smiles for one of our all time favorite nurses, Alexandra. She has been our nurse for three days in a row and we have LOVED having her!


I am really loving how they are not rushing us out of the CICU and into a different ICU, despite the fact that her cardiac status is good, thankfully.  So, hopefully we will have Alexandra again. 

She sat up on the side of the bed - unsupported! We laughed because she did NOT want to do this, at all.  She was not happy, trust me. But when I went to take a picture of her, she broke out a huge smile, and then went right back to her displeased self. 




I took advantage of the moment and brushed and braided her hair. 


Then, she stood and took a couple of steps to the chair!


Seriously, that girl is crazy. Things with her change so quickly. Each day is a roller coaster, within a giant roller coaster. Her course is so up and down that I just can't afford to use the energy to get too excited about something.  I have to try to maintain a more even level of emotion.  I know things could change tomorrow, or in 10 minutes. But for the moment, I feel much better about where we are. Thank goodness!

Oh, and just for fun, I'm adding another picture of those turkeys! I saw them again today on my walk back from lunch. They make me laugh.


Tom is flying up tonight, so that's great. We will be so happy to have him here with us for the next few days. Our 15 year anniversary is next Thursday (August 31), but he won't be here then. So we are going to go out to dinner this Sunday to celebrate. Then he will leave on Monday. Then his sister, Kristie, is coming Wednesday night, I think.

Okay, so that's it for tonight. It feels really good to have something positive to post for a change!

Thanks for all the love and support!!

Much love to you all,
Christy xoxo




3 comments:

Anonymous said...

So happy for those smiles. I've been following you guys for many years. I don't know you but I'm pulling for you. (And I'm laughing at the turkeys- we live in rural Indiana and expect to see them. Not so much in the city.)
-Brittany

Anonymous said...

I don't know you, but as a mom with a 13 yo son with Goldenhar Syndrome, I have followed your blog for years. I hope you see more and more smiles from Harlie every day and you feel more positive every day. I admire how you persevere during this difficult time. We sending lots of prayers for healing.
- Marge
Cleveland, Ohio

Donna Denson said...

Perfect a autiful smiles. God is good!