Thank you all so very much for thinking of and praying for our family and for Lucy, many prayers were answered. There was A LOT of drama around here last night, and this morning we woke feeling the after effects of the entire situation. The adrenaline is wearing off and I am feeling it. I was instructed by Lucy’s doctor to be ready for the long haul. He is ordering me to take a break from this place and go home for a few hours, I think I will try and do that sometime over the weekend. Did you know it is Halloween this weekend? Of course you did, but I totally forgot until my sister called and asked if the kids were set for Halloween. She said that she would set to work on it for us, thanks so much that helps!
Today Dr R and I agreed to leave Lucy alone!!! She needs to catch up on some much needed sleep. He ordered the residents and nurses on the floor to leave her alone and let her sleep! It was awfully quite around here most of the day medically speaking, and I am in no way complaining about that!
Lucy’s new femoral central line allows us to give Lucy life sustaining nutrition through her veins, known as PPN(partial parenteral nutrition). Partial because you can not give total parenteral nutrition(TPN) through a femoral line. Lucy has been living off of D10 fluids for the past week and that is not nearly enough calories for our girl not to mention the lack of protein and fat. Lucy needs some protein to help pull off the excess fluid that has made her body so puffy and swollen. It is surreal that we are at the point where we have to rely on IV nutrition to keep our girly going. Our goal is to NOT to have Lucy be 100% TPN dependent, but rather continue to push feeds through her j-tube and hope that we can get some or all function back in her GI system.
We started Lucy on two new meds in hopes of helping her manage her pain and discomfort. We are using Zolfran to help control the retching, vomiting and possible nausea, and Amitriptyline a not very effective antidepressant that has a great side effect of calming an irritable intestinal tract. I have lost count of how many meds our girly is taking daily now, eight or nine dosed two or three times daily. Thank goodness we have nursing care for Lucy when we get home.
We had many wonderful visitors today. Friends from church who brought me lunch and prayed over Lucy. My dear friend Raquel who made it her mission to clean up and organize our room, feed me, and allow me some time to take a shower. Lucy’s speech therapist came to visit and brought Lucy one of her all time favorite things, bubbles. Lucy’s pediatrician who just happened to call last night in the midst of our crisis stopped by to see our girl. I know I have sang her praises before, but she was able to track down the IV team charge nurse who just happened to be the nurse who placed Lucy’s last line that went after only a few hours before the line blew. This nurse knew Lucy’s name when Dr F called and she knew immediately that Lucy was in trouble, so she in turn paged anesthesia to come and place a line and came up to assist. Lucy’s nutritionist from CHOP came by to see our gal as well. I called her this morning to catch her up on all of Lucy’s newest gi issues, and lo and behold she was on her way to DuPont to visit another patient and came to visit Lucy too. She helped answer some of my many questions about TPN and was also able to meet Dr R in the mean time.
One of the best things that happened today was that my parents brought the kids to the hospital for a visit tonight! I arranged for our favorite child life specialist to help make our visit with the kids as smooth and as worry free as possible. The kids were so happy so see me and Lucy that my fears of them being scarred of seeing their sister so sick vanished quickly. Lucy really perked up when she saw the kids, we even saw the much sillier less irritable side of Lucy tonight. It was so nice to have all four of my kiddos in the same place at the same time, even if it was in the hospital. The number one question the kids had was, “when are you and Lucy coming home?”. I wish I could have given them an answer.
Lucy has so many lines connected to her body she is like picking up a kid and a bowl of spaghetti at the same time. I do think that the new meds are making her more comfortable, as is allowing her gut some rest. We are running Pedialite through her J-tube at 5mls/hr in an effort to keep things moving without making her sick, and we started her on PPN through her femoral line tonight. So far so good. Please pray for an uneventful night, this whole week and in particular last night was enough drama for a while. Pray that tomorrow brings new hope for an even better day.
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So glad to hear that the kids got in and that the visit went well. I didn't want to call while they were there. I hope you got some needed rest while Lucy was resting and enjoyed the "quiet time" I am glad to hear she is getting nutrition in 2 ways, hopefully that will move her along quicker.Hope to see you both back home very soon.
Helen
Glad she is getting The PPN. Of course if you have questions we are here.
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