Tuesday, January 21, 2014

the last 3 days at "Spa de Strong"

please add to your prayers for danielle more prayers for me... i'm feeling discouraged... she was able to double her days oral fluid intake that was tolerated to 89 ml compared to yesterdays 40ml. 89 ml equals 3 ounces of liquid. The very minimum we need to achieve is 48 ounces per day to be off of an IV... let's pray the rate of improvement starts to increase... I was firm about getting a swallow consult from speech therapy, I started asking for it on friday, and the md finally agreed to it today. ( he was still saying it wasn't needed, I made firm eye contact, put my hands on my hips and stared him down. On his way out he said he would put in the order. The consult should happen tomorrow...please pray they can find some answers or help for us, and that it actually does happen tomorrow. Please pray that I stay positive and that I don't let fear enter my heart.

Today was a mixed bag for Danielle. We had some victories. Sips here and there (about 15 sips the whole day) from a water bottle on her own with bribery... ate a few bites of soft food a couple of times, and only one dose of IV pain med needed today. Did much more walking and was awake more because of less IV pain med. Unfortunately the sipping of water etc was nixed by 4:30, and she's either been asleep or crying since then...hence giving her that one dose of IV meds to get her comfortable again... progress is so slow but I must remember to give thanks that there was progress. My one saving grace HAD been that private room with the tub/shower for her and I. Notice the word *HAD*... oh well it was "nice" while it lasted. Also friday and saturday I had asked two different doctors...are you sure that's not thrush?? They said no. Today the speech therapist took one look and said "I think she has thrush"...therefore she is on meds for that now as well... lets hope it helps...

Finally a day of progress from beginning to end...and not just baby steps! No IV pain meds at all today, so far at 7 pm up to 19.5 ounces of fluid intake orally, awake 70% of the day, took some bites of soft food, even ate a meatball, did lots of walking, etc...so we are on the way up finally!  Still not drinking enough to take the IV away, but they may reduce the amount of hydration to make her have a feeling of being thirsty to further stimulate a desire to drink.  The mouth looks much much better after a day of thrush treatments, and because she's drinking so much more and tolerating mouth care better the mucous is 90% gone.  I only had to suction her twice today.  She has a great desire to come home, and started crying when talking on the phone to her brothers and sister.  It's good though...wanting to go home is a good way to get her to understand why she needs to drink... prayer and more prayer appreciated...keep it coming.  Also prayers for Dan's father Norm Kulp who is upstairs on the 7th floor being treated with a drain for his left lung, and awaiting exploratory surgery.  Prayers too for my wonderful husband who's birthday is today, as he spent it visiting sick loved ones and holding down fort on the fort on the homefronts...

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