Making A Way

Ash and I got out today. We sat up and washed, dried, and braided her hair. That took 30minutes. Then she rested for 2 hours. Then I got her up and loaded her into the stroller to take a little walk around the hospital. We were out for an hour. I'm so proud of her. So very proud. She cried of course upon the initial transfers, but once there she stuck it out with an amazing strength that I've seen in few others. She is tough. It hurt, but she did it. She has to keep on doing it. Every single day. A little longer, a little farther. My hope is that it will get a little easier.

This afternoon the dietitian came in with some good news. I think there may be a way to have her Omegavin paid for. If your not familiar with it and want to understand the importance of it I would recommend googling it. The basics are this the current accepted method of providing essential fats into the diets of "gut" kids is by infusing a liquid called a lipid. The one approved for use in the United states kills the livers of in our children. Its tough to argue that it doesn't when so many of our children are dying from liver failure. There is an alternative. Its not yet approved by the FDA. It is here only on a trial basis and for the purpose of research studies. Its liquid gold to the families whose children are dependent on TPN and Lipid nutrition. Anyway, its here in this hospital. UNMC. Except that we aren't allowed to give it to Ash because she doesn't qualify to be entered into their study. She doesn't have a bowel that can be rehabbed. She doesn't have a bowel period. So...we have have to get it elsewhere. Our dietitian here in Nebraska called the dietitian in Houston where our new home health care company is located and they informed her that if Ashley Kate became a patient under the care of the GI team at Texas Children's in Houston that the Omegavin would be paid for. WOW! The next step is making her one of their patients. So what if we have to make a trip every month to see another doctor. If it gives us what we need to save her life then we can make a trip to Houston every month. Tomorrow I will be contacting the new home health company and the GI department at Texas Childrens to try and see what has to be done to have Ashley followed by them. Fingers crossed, prayers said, that this is going to work. Its as close as we have been able to get to the Omegavin in her entire life. I'm hopeful this will all work out. So hopeful.

Ashley's liver is already struggling. Her skin is yellowed. The whites of her eyes are now yellow. She cries bright yellow tears. She oozes bilirubin from her rectum. She tires easily. Her enzymes are showing signs of struggle on her lab work. The direct bili is over 4. Her bilirubin is ranging from 7-11.9 currently each day on labs.

Ash needs her liver to survive long enough to re-transplant. She needs Omegaven.

Tonight I'm feeling hopeful that God has made a way for us to make this possible for Ash. Its the first sign of hope I've felt all day. It was a struggle for me to get through today and I needed this to come along. Ashley remains miserable and febrile. I haven't seen the antibiotic start to work against this infection yet and as the 24 hour mark came and went with no improvement my heart began to sink. We are hopeful that by 1pm tomorrow some change will be evident in her condition. She has to be fever free to attempt the line placement.

She's resting now. Soon it will be time for dressing changes. I forgot to mention that she lost her belly button on Sunday. Its been weighing on me since I discovered it. Every other surgeon has protected it by cutting around it. Sunday's surgeon didn't care and he went right through it, destroying it. My heart is sick about it. I've cried lots of tears during dressing changes. Its just a little piece of normal that I was protecting for her. Now its gone and I suppose it really doesn't matter to anyone other than me, but it was important. To me anyway. Its the loss of normal that hurts my heart for our Ashley. I so desire normalcy for her, for her life. I realize it may be short and that her belly button would likely never be seen by anyone other than Dave or myself, but it always made me smile to know that great care had been taken to protect it. Now I can't keep from crying as I look at her abdomen. Silly, huh.

Thank you for the words you leave for us. Your messages of encouragement continue to bless my heart. I love knowing that so many of you love our gherkin. Its amazes me. It really does. So thanks again for being here.