Not feeling creative with the titles, but wanting to update on what is going on. I'm not sure where my day has gone, though having a medical appointment always seems to take up so much of the day! (Getting ready for it, driving, time waiting, time in the appt, etc.)
Eliana pulled out her feeding tube this morning close to the end of her 6am feed. Thankfully we were both awake (courtesy of the 2yo and 5yo) and heard it so that she didn't have it potentially running into her lungs! (Never thought being woken up by my little boys would be an answer to prayer for Eliana's safety!) Her skin where she pulled out the tube looks awful! It's crusty and so very red. It looks like it did just before her surgery. She was looking a little better just after surgery, but it's getting bad again now. I decide to leave off the bandages as long as possible to let her skin have more time to try and heal. We are using duoderm and tegaderm and haven't found any other good options. I have been using aquafor to moisturize her skin, but it doesn't help when the bandage is just ripped off of her face.
We had a visit to Eliana's pediatrician today. She has continued to gain weight. She is up to 13 lb. 13 oz and is 24 5/8" in length. She has literally jumped on the growth chart since her surgery. Her doctor plots her growth on 2 charts - one that is used for most children and a second that is used for children with Down syndrome. On the DS chart Eliana is close to the 70-75% in both height and weight. She does have a few rolls which are quite cute!
Face - Dr L is concerned that the skin on her face may become infected. She prescribes a cream to put on her face (Bactraban) to help it not get infected. She also mentions that she is concerned that we will end up needing a G-tube due to her face if it doesn't clear up. She want us to be able to avoid that if at all possible.
Part of me is feeling resigned to the fact that Eliana may need another surgery. I don't want it - but I don't see things improving like they need to be and the NG tube is not a long term option. I'll do all that I can to try to prevent it, but know that it isn't in my control.
Dr. L said it was fine for us to go to the conference as long as people weren't in her face. I told her that there were probably some people that would want to be in her face and she just told me that I needed to make sure that they were healthy. :-)
On the ride home I was praying and thinking about how much the support I've received from people has meant to me over the last 5+ months. I can not even begin to explain how your notes, calls, acts of service and more have ministered to my heart!!! I have felt so very loved even as my heart was broken. I know that God was telling me that all of this support was His way of showing love to me too. I have always been thankful for my wonderful network of family and friends. I have been additionally blessed in that He placed new friends in my path that have been an amazing source of encouragment, love and wisdom too - several having walked this path before me. I am so very thankful to be a part of the body of Christ. I'm so thankful to have an active support system both in real life and also here on-line. It would have been a much harder, darker road without all of that support.
I was listening to a song today that talked about how you had to walk through the valley to climb up to the mountain of God. I've always looked at others and marvelled at their faith when they walked through trials. I wanted that faith - but I really didn't want to go through the trials! Well, this trial has been hard and has felt long. I know that it isn't over, but it is getting better. I'm not sure how I've changed, but continue asking God to do something in me - make me more like Him - anything but leaving me unchanged.
I have received phone calls from the outpatient speech/feeding person at Duke wanting to see if I wanted a follow-up. I have also been trying to work something out with a friend's (hi Catherine) therapist who is experienced in this area. I was hoping to find an option that was covered by our Early Intervention so that it wasn't $50 a visit with co-pay/parking (and that is WITH insurance).
Today I received a phone call from that gal I tried to schedule with last week (earliest appt was end of June). She talked with me on the phone, asking questions to try and see if she could help via phone. I explained as much as I could and she explained that she was just booked. Towards the end of the conversation though she agreed to meet me tomorrow! I'm so very thankful for this! I will update on this as I can tomorrow.
If you are praying for us, please continue to pray for Eliana's feeding. Nothing today that remotely came close to yesterday's grand numbers. She ate a little over 6 ounces orally today. A long way to get up to 28 oz. Our ped said we could go lower if I wanted to try to do more oral feeds and less by tube. At this point I'm not going to do that as I don't see that it really helps her. I did not tube feed for 3 of her feeds today and she only took in 4 oz total in those three feeds. Yesterday was a sweet spot - and one I look forward and hope becomes the norm.
Also pray for healing for her skin. Perhaps also that she would leave her tube in for longer periods of time. I've put in a new tube 25 times now. Tonight was hard as it just kept getting "caught" on her gag reflex. It did go in though.
She's finishing up her last feeding for the night and it will be time for bed soon. My parents are coming here tomorrow and we are looking forward to seeing them!
Thank you for your notes, your prayers and your friendship! I truly thank God for each one of you!