The last week has been hard. Due to the holidays, there has not been a lot of consistency in staff taking care of Emma. We make changes, Emma's body does not like the changes therefore we take steps backwards.
A few days ago she also started having coughing episodes. During these, you could tell she has some phlegm that needed to be cleared but she just couldn't seem to officially clear it. Some of these coughing episodes lasted close to an hour 😞. Last night, she had one of these episodes and ended up vomiting. We got her settled back in to sleep, but her heart rate continued to rise and her O2 levels drop...despite her being asleep. We checked her temp...101.5 so the on call Dr. (After a little persuading) asked for a chest X-ray and labs. Her chest X-ray looked a little more wet so they gave her a one time extra diuretic dose. Her other labs looked stable, so we settled her back in for the evening (2:30am) by this point.
Emma slowly settled out and was able to come back off of oxygen last night. So far today she has not had anymore coughing episodes, but there is unfortunately no clear reasoning behind the fever.
Another issue we are dealing with is GI related. Emma's stomach is HUGE. Now, in all fairness, it is always pretty big, but it literally looks like it could pop. Once again, no one is sure why this is the case. We are supposed to be meeting with a GI specialist tomorrow to see if he/she have any ideas.
As you can see, we have been dealing with some frustrating issues that are keeping us here. Just when we start packing up our stuff and discussing the possibility of coming home, something else creeps up.
Scott and I are doing our best to keep it together...to not lose our cool with the medical staff...to find the silver lining....to remain positive for Emma....but it is hard.
On my walk to Starbucks this morning, I paused for a moment to take in my surroundings. Boston, a normally bustling city filled with people hurrying to and from work, constant sirens from all of the nearby hospitals, and nonstop cars/buses speeding by was unusually peaceful and quiet. The air was crisp and cool...the sky that was visible through the tall buildings was a brilliant blue. This verse filled my mind:
But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him." (Lamentations 3:21-24 ESV)
I paused and prayed. I prayed that God would help me see his new mercies and unfailing love...even during these frustrating times.
It is a New Year....it is a new day. Today I will focus on my blessings and work on my feelings of frustration and disappointment. Emma has come so far and has surpassed expectations of so many. We have so much to be thankful for, so we press on. We give Emma time and we accept that whenever she's ready to go home...that will be the perfect time...and not a day sooner.
We appreciate your prayers as we wait...adjust...wait...and try to find what works best for Emma. We pray that 2015 is wonderful year for you and your families. Don't ever forget to give God the glory...praise Him..even during the storms of your life..for He is faithful.
God is Good! All the time! God is Good!
Before Emma got sick during the night
Yesterday during PT
We continue to lift you up in prayer! Blessings for a new morning!
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