Ashley's Story

She will leave fingerprints all over your heart


Long night

Ashley rested for approximately ten minutes the entire night. This makes the 3rd night in a row she has not gotten any sleep. Insomnia is miserable and her little eyes tell us how exhausted she is. Around 3 the resident came in to let me know that there was talk of taking her to the OR today to "look around" inside of her. Her stomach is so distended and the intestine is locked down with no fluid exiting only building. The CT scan revealed no perforations to the bowel, but again it showed HUGE loops of dilated bowel full of fluid. I have no idea if we are or aren't going into surgery today. I will let you know if it actually happens. I questioned the resident to make sure that I understood what she was telling me. She said the fellow and attending were discussing the possibility. I'm not sure why our conversation took place at 3 in the morning but it did. They also decided to give Ash some blood at that time. Her hemoglobin had dropped from 11 to 7. We are not sure why. Along with the blood she received a couple of saline and albumin bolus' in an attempt to rehydrate her and to get her kidneys to kick back in. So far she has made no urine this morning.

I will attempt to answer a couple of question that have been asked the last few days. Ashley has not been sedated at all. In fact we have used no narcotics for her outside of the anesthesia they gave her during the 2 trips to the OR last week. Everyone(her doctors) feel like Ashley probably picked up a virus that caused her system to become weak and at that time she slipped in to rejection. Generally you don't go into rejection and then it lead to a virus. I think I understood that correctly. Someone else asked why I didn't name the drug that causes Ash so many problems. I have several reasons for that, but the main one being that I have learned over the course of Ashley's life that people are extremely defensive about taking certain medications. I in no way want to debate the issue with anyone. It may be a drug that works for you, but I know what it does to Ash and for that reason I don't like it. Many, many people feel as though this is a miracle drug that has "saved" them, and I respect that. Unfortunately there is another side to taking this medication and it truly robs your quality of life in many, many ways. So out of respect for those who like and support it I do not wish to debate. I hope that makes sense.

The team is beginning to round so as soon as any decisions are made I will share them with you. As always you are appreciated and loved. Thank you for caring. Trish


At 10:30 AM , Anonymous Anonymous said...

Trish, I am praying for Ashley and I totally admire you. This is your baby, not ours. We cannot ever sit in judgement of how you handle her. You are doing an awesome job. You are a first class mom. Praying...

At 10:38 AM , Anonymous Anonymous said...

I am so sorry baby Ashley is not getting any rest. I am sorry you are not getting any rest.

You are so loved and touch so many lives. Ashley is a miracle. God is using her and you to witness to so many.

I will continue to lift you up in prayer. I will pray for rest, healing, understanding, peace.

You, your family and Ashley are covered in prayer....

Love in Christ,

At 10:39 AM , Anonymous Anonymous said...

The resident speaking with you at 3 in the morning may be that rounds are also thru the night at hospitals if need be.

At 10:48 AM , Blogger Shannon said...


I have been reading Ashley's Journal for the past year and have been so blessed by it and by you. Ashley is so blessed to have you as her Mommy- as blessed as you are to have her as your daughter. I pray for you, Ashley, and your family every day. God is using you all in amazing and powerful ways!

Blessings to you,

At 11:07 AM , Blogger Sun said...

We are praying today - May God pour out His peace and His love on you and Ashley as you take moment by moment hand in hand with Him. Sunshine

At 12:04 PM , Anonymous Anonymous said...

still praying

At 12:06 PM , Blogger Joyful Days said...

My prayers are continuing for Ashley, for you and for Dave, Ally and Blake.

While my mother was in in the adult ICU down the hall from you I met many mommies whose babies were where you are now. You all face so much and I am in awe of your strength and courage (even when you feel you don't have enough). You will make the best choices for dear Ashley. You will because you let HIM guide you. He gave her to an awesome family HE chose for her. She is so blessed for that.

Lifting up the needs & concerns,


At 1:12 PM , Blogger Sarah's In the Midst of It said...

Trish, your sensitivity to others is always so amazing! I hope you get some good answers today, and that the day ends on a more encouraging note than it has started. I am, as always, praying for you guys.

At 5:59 PM , Blogger Tammi said...

Thanks for the explanation. It makes perfect sense. You know Ash better than anyone else.
Continuing to pray for her health and your peace!

At 4:29 PM , Blogger susan lewellen said...

As I taught school today, your family remained in my prayers. I raced home to see just how Ashley was faring and I am encouraged to watch this tiny warrior! No matter what God has planned for you and Ashley, it will be the perfect plan for your lives. I promise to hold you up everyday until there is victory!


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