Too soon to tell...

...but I think she's got a cold or something. She woke with a runny nose, some cough and congestion and a low temp. Dave mentioned not feeling too well yesterday afternoon and then this morning I began a deep cough as well. Looks like we may be adding some additional issues to what is going on with Ash. Its very unusual for Dave and I to be under the weather. It doesn't happen often(maybe a couple of times over the last 16 years).

She's been up for a while and hasn't been able to fall back to sleep yet. I'm hoping for at least a couple of more hours to rest before beginning our day. For the last week or two we have been hopping up with Ash every hour to two hours through the night and its catching up with us. She is so irritable while on prednisone and so she screams out through the night. It usually just takes a position change and tucking her back into bed, but the continuous interruption in sleep pattern makes you wake feeling very un rested.

I'm so anxious to see what is going on inside of her bowel. I don't sleep well because I find myself wondering what the scope will reveal. I would feel much better had it already been scheduled. I spoke with out doctor's office in Shreveport 3 times Friday each time being told I would receive a call back from the nurse who was in charge of putting it on the schedule and never received that call back. I really needed to have a definite day and time to share with our team in Omaha. I will be on the phone with them again on Monday morning and this time I won't be getting off of the phone until they tell me its scheduled. I learned my lesson on Friday.

Her stool output was actually down a little on Thursday, then spiked high on Friday, and went back down on Saturday. She is at 58cc of formula per hour and her goal on our discharge papers from Omaha was 65 and then we were told we could stop the TPN. However, since she is losing weight and not gaining they have had us bump her back up the ladder on her wean schedule and she won't be coming off of her TPN even once she reaches the goal of 65. They have also added more calories to her TPN this week and we are hoping to see her put a little of those lost pounds back on. She was discharged at 14 kilos(actually a whole kilo up from when were admitted) and last week weighed in at 12.9 kilos. In the scheme of the things(talking about a damaged bowel recovering from rejection) this weight loss is huge. There's something like 2.2 lbs in a kilo. So what that tells us is we have to now divide her total output by 13 instead of 14 and it changes her amount per hour. She is allowed anywhere from 40 -60 cc/kilo per hour while healing. 40/hour being the goal of healing, but as long as it doesn't go higher than 60 we are comfortable. She's been as high as 97 one day and 90 another. Those are the two highest days with most days being in the 60-70 ranges. When discharged we were told we would not be concerned and would not scope unless her output spiked to 120-150 so I'm not sure why they have changed their minds. I am guessing it is because of the slow progress we are making on her feeding advancement. We have been home for 3weeks and Tuesday will begin our 4th week since leaving Omaha. I think they wanted her on full feeds by now and this in conjunction with her weight loss is causing them to want a scope?

The best thing that could happen for us is a clear scope next week. A scope that shows no signs of ongoing rejection. A scope that shows no signs of active CMV. If we get that then we have a good chance of not returning to Omaha. If we do not, then we believe we will have to return. My main reason for not agreeing to return on Tuesday to be scoped was because if we had a clear scope and then went to clinic on Thursday I still don't believe they would have allowed us to return home. They would have said, "Well, we want to see her in clinic next week." So we would have lost another week away from the family. Then the following week we would have been told, "Well, we really want to see her on full feeds before you leave. We want to have her off TPN and have her line pulled before you go home." I can't promise you this is what would happen, but I've been doing this for 3 years now. 2 of those years in Omaha with this team of doctors and this is the way it works. I shared those exact concerns with our coordinator and she kind of chuckled on the phone and I said, "I understand. The timing kind of stinks." She knew I was right. She knew thats what they would have told us. She also told me they could not make me come back, but that they would like for us to. I told her I understood that, but didn't see any reason why we couldn't get the initial scope done here at home and then decide our course of action. If the scope comes back clear then we would have avoided the trip and the risk of being told we aren't allowed to return home. If it doesn't, then that will be a whole different story. I understand that.

We also talked about how their only concern is for Ashley, the patient. That's their job. I get that. Then I shared with them that my concern is not only for Ashley the patient, but also for Ashley our little girl. I have to be a parent, not just a health care provider. That changes the whole dynamic. I'm trying to raise a family. They are trying to treat a patient. I was told(last year at the holidays by the surgeon in clinic that week) that my family was my problem not hers. Her only problem was Ashley. O.k, I get that. That's why we do things a little differently. Quality of life is a little more important to me. Life with no quality, no happiness, no family unit, no experiences outside of a hospital room (in this mommy's opinion) is not really life. Its existing. Not living.

I don't pretend these decisions are easy. I second guess myself constantly. I wonder if I'm doing the right thing. I wonder if I'll regret my decisions. I wonder if I would have done something differently if the outcome would have been different. Parenting is a hard job. Its the most rewarding thing I've ever done, but yet it is the most difficult. I sit here this morning trying to figure out why He trusted me with these amazing kids and I just don't get it. I obviously don't see what He sees in me. In the end of all my figuring I'm just grateful. Grateful that He chose me. That He gave them to me. If He trusts me, then at some point I am going to have to trust myself. That is what I ultimately decided this week in regards to our situation with Ash. There is nothing selfish about my decision. It's not about what I want to do. It has nothing to do with me. It is about what I believe is best for Ashley Kate. She needs to heal here in her home, not in a hotel room or a hospital bed. I hope in someway people can understand that, but even if they don't its my decision. I'm the one that has to live with it.

I just couldn't take the risk(yet) of being separated from the family. If she is not in rejection then we need to stay home. Being in Omaha will not help her heal one moment faster then God intends for her to heal. There is NOTHING that can be done to speed this process up. Sitting in a hotel room, 700 miles away, during the holidays, and spending Christmas alone, will not speed up her healing. It is going to take time. It is proving to take longer this time, but she was very, very sick and her bowel was very, very injured. It just might need more time to recover. Again, if she is in ongoing rejection then the whole story changes. I get it. I don't have to be reminded of it.

If our scope shows that she is in ongoing rejection then we will be driving back to Omaha(just Ashley and I) and we will be admitted to the hospital while it is treated. I am praying it does not return to us with this result.

So for today we will wake up and make a few more memories. They may include coughs and runny noses, but they will be more memories we have made then if I had jumped in my car and taken off for Omaha last week. I'm just hoping we have lots more days ahead of us to make lots more. I'm going back to bed for as long as she stays asleep. Talk to you later. Take care, Trish.