Last night was a late night for Lily and I. She spiked a bit of a temperature which precipitated a series of changes in meds and a need to send off cultures on her blood, urine and fluids. Thankfully her temperature is normal today. It's hard to say if it's truly normal or if it's a combination of the Tylenol and Toridol that she's just keeping it in check. Time will tell.
Her chest tubes continue to drain more than is anticipated at this stage of recovery. Normally a procedure is done with a Fontan called a fenestration. This acts as a sort of pop-off valve for pressures. In Lily's case the prevailing thought was her AVM's would offer the necessary pressure release so no fenestration was performed. It is unclear whether the increased drainage is from the difference in procedure or just her body's way of coping with the surgery. The Dr.'s are adjusting and adding meds to try to slow down the drainage. Continue to pray for that.
Lily is also boycotting eating. I was only able to get her to eat 2 or 3 bites of eggs and grits this morning and a few swallows of water. She is a picky eater on a good day, and the surgery has left her with no appetite. The dietician already suggested an NG tube today but thankfully Dr. Watson, one of my favorite fellows that was on the floor when Isabelle was in for her surgery last year, thoughtfully suggested that we give it another day. Please pray that Lily will begin eating!! An NG tube would just NOT be a fun option for her! We are going to try some high fat/protein drinks. However at lunch she refused to even take a sip I think if she ever tastes the shake, it could be our ticket to getting adequate nutrition in her system. I'll try again at supper.
Lily Rose is quite alert today and is off all pain meds except tylenol and oxycodeine. Unfortunately she is quite morose and won't even consider smiling. Continue to pray that we can get her to interact and smile. It's pitiful to see our normal smiling girl so serious and depressed!
Thankfully we continue to be at peace even in the midst of the unknowns. Thanks for your prayers!
10 comments:
Aww Elaine, I am sorry she isn't eating nor smiling. I know that is hard for you. We are praying!!
Love you tons!
Sherri
PS I made your Lentil Casserole tonight!
Praying for the return of smile and appetite !
Praying Elaine. I hope that she begins to eat and that her body begins to adjust and decrease in the drainage.
Oh, this post brought back a flood of memories from Lilly's post op days - the temperature spike, little appetite, and the somber new child I had never known before. I truly was afraid that the joyful, smiling, happy Lilly was gone forever. I was so relieved when on day 4, the old Lilly was back! Praying for all of you!
Just thinking - how about Chinese food - something close to what she had congee et al...worth a try...
Best wishes!
Carol in FL
Elaine, you are my hero! You are such a beautiful picture of endurance. The way you run the race set before you is such a blessing in my life!
Lily Rose has entirely too much joy for it to be hidden long. She will shine much brighter, very soon.
Have you ever tried Pedismart? It is wonderful! Grant lived on it for a time. Praying
Love! Hugs!! Ashley
This sweet thing has been through so much in the last few months. I'm sure she is in a state of confusion. We will be praying that she will try the shake, and that her sweet smile will quickly return. Thanks for blogging so we know how to pray.
Praying for her appetite to return. Tommy spiked a fever to. The drs said it was because all his body had been through. He has lots of avm's to. We played some chinese childrens songs on youtube during his icu stay, they seem to calm him down and hold his interest.
Lily and all of you are in our prayers. Can't wait to hear..."Smile!" You all are truly a light to others.
Christin and Dan Kitchens (Peds Same Day nurses)
Hi guys,
You all came to mind tonight as I was going through some old emails, so I decided to scan your blog to catch up with the goings-on of your little one! Didn't realize you were in full-on surgery mode already. Prayers will be going up for you guys.
Our little Shanghai girl Wu Jin Jun "Ginny" is doing well and really beginning to make major strides adjusting in recent weeks. She's still a tiny gal, but has grown a bit as of late.
Blessings,
Chris B.
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