Its been another night of up and down running replacements and emptying ostomy bags. Ashley Kate decided to remove her own central line dressing and so she required a new dressing. It is definitely a two person job, but somehow I managed to clean and dress the site while wrestling the very skilled arms of a two year old princess.
This morning I am coming to you to ask for specific prayers over the next three days. There are several things that we need to have covered as we approach our clinic appointment and our meeting with the surgeon on Friday.
First and foremost in my mind after emptying Ash's ostomy this morning is her absorption. On Sunday evening I was able to make a change in her feeedings. She went up to 50cc of formula and down to 10cc of TPN. That meant we are only one change away from full feedings and NO TPN. I had really hoped to be able to make that change before attending our clinic appointment tomorrow. Unfortunately, I don't see it happening. Ashley's ostomy output has increased and she is requiring a great amount of replacement fluids to be run through her IV. This tells me her bowel is not adjusting well and is not absorbing the formula. Not good. We need for her to tolerate full feedings in order to get her home. Please pray that her output would slow down and that we would be able to make that final increase soon.
Secondly, our first outpatient clinic appointment will be tomorrow at 2pm. I am hoping for good things to happen. This will be a key appointment that decides where they want to go and what they want to do with Ashley Kate. Thankfully David will arrive in time to attend along with us.
Next is travel. Dave and the kids will be traveling for many hours tomorrow. Dave is flying in to Omaha to spend the next four days with us, and our children will be on the road tomorrow evening traveling for the first half of the drive with Nan and the second half with my sister. Please pray for their safety. They are two of the most precious things in my life and knowing they are on the road for so many hours is difficult for me. I also pray they have a wonderful visit with our families and that joy and laughter will replace any sadness they may feel during the holiday.
Our finances. This stay in the Lied is a stretch for our monthly budget. The sooner we can get home, the quicker the strain and burden can be lifted. Dave is working longer and longer hours attempting to see more and more patients during this time. He is exhausted and my heart aches knowing the stress he must be feeling. It is no secret to those who have a medically fragile child how draining their care can be on a family's budget. Dave is insisting on returning to Omaha again next week to spend the holiday with Ash and I. I am trying to convince him it is not necessary. Nothing special happens around this place on holidays and the expense of travel is very high during this season. Your prayers would be appreciated. God has never failed to meet our needs and He blesses us greatly. I know He saw this one coming even though we did not.
Finally, our appointment with a surgeon will be on Friday at 2p.m. Please cover us in prayer while we sit down face to face and talk about Ashley's future. Dave and I need to have our questions laid out, be able to communicate effectively without getting too emotional, and have willing and open hearts to hear what the "team" would like to have happen. Our goal is to share with them how we feel about living Ashley Kate's life making it full of quality. We don't believe we are doing that at this time while she and I are separated from our home, our family, our community, and our support system. The things that I am doing for Ash can be done in our home just as safely and much more effectively with the support of my friends and family. A well rested mommy is a better mommy. A well supported mommy is a better mommy. A more relaxed Ashley is a healthier Ashley. A happier Ashley is a healthier Ashley. Our desire is for our family to be reunited and there is nothing "magical" taking place in this room in Omaha, NE that can't be done in Texas. We are so willing to return every two weeks for a clinic schedule and to do any testing and lab work on whatever schedule they would like. Dave and are good, loving, responsible parents who want the best life possible for Ashley Kate so my prayer is that our surgeon will see that and that we will all come to the best decisions for our daughter.
So much is happening and my heart is anxious. The Bible tells me to, "Be anxious for nothing" and "to make my requests known unto God". I'm just asking for your help, too. Thank you for loving us. Thank you for you kindness toward my heart and my family. You are loved. Trish