A breath of fresh air

Unfortunately it is Daddy-O, which means Emily still isn’t quite up to par.  Emily was feeling a little better yesterday and had more energy for spurts throughout the day.  At other times she still experienced high levels of pain when coughing, burping or laughing.  Body movements were still slow and deliberate.  She was disconnected from the EKG and the oxygen because she is able to maintain a lower heart rate and good oxygen levels on her own.  And, a morning x-ray showed a slight improvement in the level of fluids around her lungs.

The general plan for this particular round of treatment was to load Emily up with Methotrexate for 24 hours and load her with fluids to flush it out over the next 24-48 hours.  Every 24 hours blood tests are run to measure the methotrexate level.  Last Thursday and Friday Emily did a good job of flushing.  However, Emily’s level had actually started going up yesterday.  The extra fluid around her lungs appears to be a collection area for the methotrexate.   The level in itself was not alarming, but we do need get it out of her system before she can be discharged.  This is especially important as it appears that Emily is one of the rare patients in whom the methotrexate causes the Pleuritis.    

With more information available each day, a plan for treatment is created.  With pain preventing deep breaths, parts of her lungs began to collapse. So treatment included more pain relief, a steroid, and respiratory therapy.  The respiratory therapy includes a couple of devises designed to have her take big breaths and long exhales to expand her lungs.  There was also some concern about her weight loss.  Over the last month she has lost more than the freshmen 15 she laughingly says she gained her first semester.  With the long road ahead and lots of reasons why she won’t feel like eating, including the mouth sores, last night a nutrient rich IV was added to her treatment.

The special upside to yesterday was that we were able to put her in her wheelchair and get her outside a couple of times.  We made our way up to the rooftop which was way cool.  It not only felt good for to be out in the sun, but there is an awesome view of the downtown Cleveland sky scrape. Later in the evening we picked up some Chinese food and the whole family had diner up there.  It was great to have the family together on a lovely spring evening. 

Emily’s sleep was cut short last night.  In the hospital, her vitals get checked and medication administered on a scheduled basis, even through the night.  At 4:00am a routine blood draw turned into a 3 hour task which included a replacement of her IV needle in her medi-port.  The line was blocked, making it impossible to draw the necessary blood samples.  After a few hours of sleep this morning, Emily continued to improve again today.  She is now very capable of crutching to the bathroom again.  Yeah!!! Because she ate dinner last night and breakfast this morning, they are taking her off the nutrition IV and migrating her to oral pain relief.  

Another x-ray will be taken Friday morning and we now have hopes of getting her home this week-end.  Her spirits continue to be good, especially when the pain diminishes.  She still has pain, but the most intense pain is somewhat self-induced.  She spent some time on social media today and many times laughed herself to tears of pain.

Emily misses everyone and wants to thank you all for being "so awesome." 

GAME ON!
Daddy-O