Wednesday, August 13, 2008


This day started out with high expectations. I truly thought that I would be able to find out SO many answers. I got some, I'm not sure they were the answers I was looking for. But in a way, they were.
I had my Care Conference at 3:00 this afternoon. This conference was actually planned last week when they were trying to get Elaina moved to the floor and they had been talking to me about hospice, DNR papers, etc. The reason that we waited until today for the conference was that Elaina's cardiologist, Dr Cowley (we see him both in and out-patient) was not available until today. I'm glad that we waited. Dr Cowley tells it like it is, and I really respect that. He told me that he agreed with the decisions I'd make concerning Elaina's DNR and he said that he would continue to advise me on it (for possible revisions) when and if it was necessary. He said that he thought it was worth sending Elaina's records to Stanford, but he said that he didn't think that a heart/lung transplant was something that he would recommend for Elaina. He told me that the waiting list is two years or longer sometimes and that the last he heard, it only extended life by a year and that it was a miserable existence for the lung recipient. He did support my decision to get the information from Stanford and to make an informed decision on my own. He also told me that he thought that there was a chance that Elaina could continue to improve and that if she does, there will be other surgical options available for her down the road. Probably not until she is between 3-5 years old, but options will become available the older she gets. This is all dependent on her lungs improving and her pulmonary arteries growing with her. Of course, no one has a crystal ball and no outcome is ever a guarantee. We just have to take it one day, one week, one month at a time. We also talked about feeding methods. Right now NJ is the best way to go. We cannot risk stomach contents that she could potentially asperate. Eventually we would like her to have a Nissen and G-tube, but that would be 4-6 months down the road. She isn't strong enough right now to go through another surgery, and since she tends to use her stomach muscles to breathe, having them sore from surgery would really decrease her ability to get stronger. In all, the conference was very good and I know that I do have a good grasp of the situation as a whole. Anyway, there is a concern that I will be able to manage all her cares by myself when we get home (shhhhhhhh....we're aiming for m-o-n-d-a-y), so the team was hoping that I would be able to have a couple of family members come and spend a day learning how to do some of her cares so that I can have a helping hand now and then. They've strongly advised me not to take her many places in public. They said that a walk in the park or in open places is okay, just not allowing anyone to touch her or get too close. No church, no stores, and very very cautious at the doctors office.
Once the care conference ended, Elaina was taken in for her scope. It lasted less than 30 minutes and they said that everything looked good. There is some scar tissue on her vocal cords, but that's to be expected with how long she was on the ventilator. Otherwise they didn't find any obvious obstructions. They said that her obstruction is most likely in the soft tissue at the top of her throat (which they can't repair surgically) and she will outgrow it eventually or it could be due to all her secretions. Either way they fully agreed with the use of her c-pap. I really feel like it make a huge difference today. She was on it for 12 hours last night and all day her saturations hovered around 80 on 1 liter of oxygen. It was great! She also didn't have any fevers today and didn't need a whole lot of extra sedations. I'm willing to take as many good days as she's willing to give me. She really wanted to snuggle when she got back from the scope, and I was glad to be able to give her lots and lots of extra hugs and kisses!


The Portas said...

Sounds to me like you received some pretty good information from your docs. It's wonderful to have such a great team of people looking out for your little girl.

PRAYING, praying sooo hard for you guys and that you can get her home soon and love her up! xoxoxo

Stephanie said...

Ralphie's ped lets us come in and out the back door to avoid contact with sick children. They also put us in an exam room that has not been used that day. I hope you do something similar. I was mortified that the discharge nurse wanted me to take him to the ped the week we went home.

I'm glad you got the straight stuff about heart-lung transplant. I pray that she just keeps gettting stronger over time and that you get some relief at home.

Auntie Liz said...

Sounds like the cpap is what she needs right now. Every little bit helps!

All our love,
Liz and John

Christina said...

Thanks for keeping us updated. Wow, lots of information to process. I am glad you were able to meet with the team, knowledge is power.
Please know that we are praying for you and Elaina!

Lots of Hugs and Prayers,
Jacob's momma

Vaeh's Blog said...

Sounds like you were given some great info. If I've learned one thing with Vaeh, its that there's always possibilities that the doc's don't count on or think are possible!

Praying that she continues to improve & that Monday is your day!!

Heart Hugs!

carolyn q said...

I was glad that I was able to visit with you and see Elaina after her procedure.
I hope lastnight was a much better night and please know your sweet litle Elaina is in my prayers as well as Ben because I know he misses you so much. You are such a good mom!
Luv Ya,

Cynthia said...

Keeping you in my prayers. So glad things are a bit more clear and the c-pap is really helping. I'm really looking forward to the post where you say you are home with your family! Enjoy those snuggles!

Sherri - KaysvilleMomma said...

Wow.. Micayla's cardiologist is Dr Cowley too. We love him! When we brought Micayla home from the hospital we posted a sign on the door thanking people for coming but asking them to call ahead of time. This way we had more control over the germs coming into our house. There might be some people in your neighborhood that will also be willing to learn about the cares. Will your insurance pay for a home health aide? Maybe someone that could come and give you a break to spend time with your son/

Sherri - KaysvilleMomma said...

Oh yeah --- we also were able to work out something with our pediatrician's office so that we didn't have to sit in the waiting room.

Jake & Stephanie Ellinger said...

Dr. Cowley is Nathan's cardiologist too and I appreciate him for the exact reasons you do to! He is the one after the heart repair to push the GI clinic to get Nathan in faster (wait time to schedule an appointment was 3 months!) Elaina is in good hands with him!

I would recommend finding a few neighbors, friends, etc. to have them learn Elaina's cares. You are going to need a break every now and then and Ben needs a mom too!

We will keep praying for your family that you have lots of good days ahead of you.

Gourley Family said...

Sounds like today was a productive today. I am strong believer in being as educated as possible. We are praying that she gets h-o-m-e!
Heart hugs,

Nic & Ashley Haws said...

Hollie, it sounds like home isn't too far off. I am so happy for you. Seriously, let me know if I can do ANYTHING to help. Do you have someone bringing you dinner? I know when Mercydez came home I was starving but the last thing on my mind was dinner. I would love to bring you some dinner. Let me know when you guys actually get to make the move out of Primarys. I'm here if you need anything. Email me...
Your friend,
Ashley Haws