Ashley's Story

She will leave fingerprints all over your heart



The pathology results from Ash's biopsies are back. No rejection. PRAISE GOD!!! On the cellular level you can see that damage to the wall of the bowel has occurred. Sluffing off of the villi that will take time to heal. Her bowel took a hit with some unknown, unidentified virus. We will more than likely never know what made her so very sick, but the good news is that she is healing and looking better and better each day.

The thought is that she had two different viral infections. The original one that hospitalized her for the first 5 days. She recovered and remained well for the next 4. Then became very, very sick once again from something different. She more than likely caught the second round of whatever it was due to being weak from the first.

Ash is getting stronger every day. The first night she was home was rough. She was so weak and sickly. Just absolutely worn out. I was very, very nervous and worried. The next morning was a little better and each day since has gotten better . She is not able to stand for more than a few minutes, is not taking any steps, and has little interest in going outside to ride her bike. Its just taking time to recover. She did some swinging in her play room for the first time since coming home yesterday afternoon. She wears out quickly from any activity and is sleeping long and hard each night. She's not eating anything by mouth and we plan on taking it very slow in this area. Just giving her time to regain her strength and interest in her normal activities. She has had no therapy this week and will probably not have any next week either. Hopefully we can restart her slowly the following week.

We are so grateful to be home with her. She's very cuddly and lays her head on our shoulders each time we hold her. Although we are enjoying the extra closeness it does remind us that she is still recovering. Ash had gotten far to busy and active to have any interest in being held and cuddled.

There is so much I could share about her hospitalization but it would be very time consuming. I can't thank the team at Schumpert enough for taking care of our girl. We LOVE them and we TRUST them. Even when we don't agree. They are some of the best doctors we have ever met and they worked very hard to keep us close to home. Dave and I are so very thankful to have them on our side. I'm grateful that she has proven not to need the central line that was attempted. We truly felt she didn't need it, but caved and allowed her to be taken into the OR for placement. We were very clear that we wanted them to not be aggressive. If it went easily then so be it, but if it would require any trauma, incisions, or cut downs then we did not consent. Its a very scary thing to place a line in Ashley. The surgeons don't look forward to it because she is out of easy access. Both jugular veins are no longer options. Neither are the sub-clavian veins. All occluded and scarred down. They made one attempt in a vein that they thought showed flow on ultrasound and absolutely could not get it to go in. She does have both femoral veins. A line could be placed in one of them, but we are "saving" those veins. Ashley Kate is only 4 1/2 years old and we have a lifetime of chronic illness ahead of her. We NEED those veins and are trying to protect them for as long as we can. Once you are out of access you are out of options and you find yourselves at the end. I can't imagine being there. I hope we never arrive at that place. Therefore I would not consent to a line being placed in either of those veins. My hope and my prayer was that Ash would turn a corner and start to recover which she did. While she lay in the recovery room all I could do was sit next to her bed and cry. I cried my eyes out. Not knowing if we had made the right decision or not and just begging God to bless our efforts at trying to protect her remaining veins. He did. Ash began to turn around that very day and did not need that central line. The decisions we have had to make on her behalf are excruciating. I never know if they are right or wrong at the time we are asked to make them. I would never want any of you to be placed in these situations. Its miserable. It truly is. At the end of the day its my name signed on those consent forms and the responsibility for the outcome is all mine. Sometimes it goes our way and then there are those times when it doesn't(thinking back to Jan. of 07 the day of Ashley Kate's cardiac arrest. One of the worst days of my life).

I just wanted to check in with everyone and thank you once again for your prayers. I KNOW we would not have survived this long without them. We are hoping to keep her home for many, many months with no more admissions in her future. We made it for almost a full year. So close! Have a good night. Love you guys. Trish


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