Krysten: A Challenging Day

Yesterday was a challenging day.  I spent about 11 hours at the hospital.  I was too tired to write a post last night after I got home. 

The morning started off good.  Krysten was sitting up in a chair when I got there.  They decided to do the swallow study and put a halt on drinking.  The nurses were only letting her have swabs of fluids every 15 minutes or so.  She was none to happy about this as they had let her drink the prior day but she was still in good spirits. 

The respiratory therapist (RT) came to observe her drinking around 11.  Krysten was coughing after every drink and her voice sounded raspy and "wet."  The RT decided that it would be better to not have any liquids just yet, and to wait until Monday so she could get the full swallow study.  This was because the liquids could go into her lungs instead of her stomach and she could aspirate.  This would increase the risk of putting the ventilator back in amongst other things. 

Let me tell you.. SHE WAS NOT HAPPY ABOUT THIS.  She was thirsty, her mouth was dry, and she just wanted to drink. 

But otherwise, she continued to do good until just after 1pm.  Then her oxygen levels dipped and her respiratory rate increased.  From there is was just an up and down day.  She was upset and somewhat panicking because she couldn't drink. 

They are giving her IV fluids and she is getting food through a tube.  So she isn't dehydrated, but her mouth is dry and that is making her upset.  Because of the panicking feeling she had, her oxygen levels kept dipping to the 80's. 

I had many, many pep talks with her to try and calm her down.     The risk is just too great of fluid going into her lungs at this time.  One of her CF Dr.'s even called from his vacation in Ireland to make sure she wasn't getting anything.  Unfortunately, by the end of the day she could only have one mouth swab of water an hour so that did not help matters.

A few hours after I left last night Patrick said her oxygen levels were back up to 94-95, which is where we want them to be. 

She was also transferred back to the MICU, where she was during her last hospital stay.  They have no concerns neurologically anymore and since she was having difficulties with her breathing yesterday that was the best place for her.  The neurological team is not used to having patients with breathing problems.  They wanted her to go to the MICU step down unit but there were no beds available.  Let's hope that her breathing continues to do better and so she can be transferred out of the MICU in a few days. 

It will be a long weekend with no drinking though.. that's all I have to say.  Thanks for all your continued prayers and support.