Monday, June 11, 2007

Update ... though not a lot of news

Some days do you just wonder where your time goes?  At the end of the day sometimes I wonder why I haven't had time to do even some of the basic things - but it's been so long that I'm becoming more used to it.  Probably not a great sign - though maybe I'm getting to be more relaxed.  Stop laughing if you know how "driven" I can be.  I do know how to relax too - and have had LOTS of opportunities to learn that recently too.

My oldest 5 children went to VBS this morning (and had a great time) while Eliana and I headed over to cardiology.  We met the nurse that we see each time we are there, but today she has on a v-neck top and I noticed her scar.  I told her that I didn't realize that she had also had heart surgery.  She has had several in addition to breast cancer.  She is such a sweet gal and I told her that her empathy for others was readily apparent.  Isn't it amazing how we can be walking on our own path and not realize what others so close to us are going through - or have gone through. 

We saw a different cardiologist (a fellow) today initially - though one we've seen before.  When he looked at Eliana, he commented that he remembered her from her stay in the hospital (for her heart surgery).  What reminded him  - was her bow!  (He even commented that it was the same color that she had on then.)  It really is something she is known for and now that we are using it to hold her tubing away from her face it's a necessary thing each day too!. 

He checked out her heart (looks good) and lungs (no fluid) and thought she was doing well.  Everyone we saw today commented on her scar/incision site and how "great" it looks.  I asked about a swallow study (someone had suggested it to me) and he said that the referral for this would come from her therapist.  It's really only to see if there is fluid in the lungs which doesn't seem to be her issue.  He asked if I had questions for our regular cardiologist and I said that I wanted to talk with him about the G-tube. 

While waiting for Dr C, one of the echo techs came in and chatted with me.  She is pregnant with her first and I hope that some of what I shared with her was an encouragment.  Dr C came in with the other Dr. and we talked for a good while.  He liked the positioning of the tube and I told him that I'd given him credit for it whenever someone commented on it. 

He told me that from a cardiac standpoint that Eliana is doing great and that he doesn't need to see us for a few months.  (She will need another echo in 2 months.)  I jokingly asked if he was trying to get rid of us.  He said he wasn't and that he would continue to follow her for feeding if I wanted, but that her feeding issues were no longer cardiac related.  He thought it would be helpful for one doctor to be the point person in terms of managing Eliana's care and in making decisions.  I told him that I felt sure that her pediatrician would feel comfortable in this role and he said he'd call her to discuss it.  I'm so thankful to have medical professionals that are willing and interested in working together.  I know our care is better because of this!

We talked about the option of the G-tube.  He does not want to rush into getting this.  He wanted me to find out from her therapists whether this is a skills problem or a feeding aversion/oral issue.  He said his recommendation would vary depending on the answer. 

If it is a skills problem, then we would probably need the G-tube.  If it's some oral motor or feeding aversion then he would like for us to try to deal with this problem to see if we could avoid the G-tube. 

He looked up the reports from the latest 2 feeding therapists to see what they had written in terms of recommendations.  One recommended the G-tube.  The other was interested in working with Eliana for a while to see if we could make some progress.  She thinks that there is no rush to getting the G-tube.  Dr. C called the first a pessimist and said that he agreed with the second one.  I told him that we would see the 2nd gal again on Wed.  He wanted us to talk more about our options after seeing her.  He thinks  that if it would only take a couple of months before she can maintain caloric intake then we could avoid the G.  He also suggested that starting solids might be a good thing too.

A couple of months sounds like  looooong time.  Though honestly if I'd known all that I've gone through in the last 6 ahead of time, I'm sure it would have sounded impossible.  One day at a time.  One step at a time. 

So I have my homework in terms of talking with the OT on Wed morning.  I'm looking forward to hearing what she thinks and has to say in terms of a recommendation.  I don't want to rush into something that I'll regret and on the other hand I don't see any point in postponing if it is inevitable.  Kwow what I mean?  It's hard when all of the advice isn't consistant, but I'm OK with that too.  (At least for now.)

We came home and rested - all but the 5 and 7yo boys.  It was soooo nice to have a nap!  Shortly after getting up, Catherine called to ask if her children could come over for several hours.  We had a fun time together and now everyone is asleep and Eliana is getting her last feeding.

I also called and talked with Eliana's ped this evening.  I updated her on what had gone on and told her that Dr. C was planning to call her and talk.  She asked me to let her know about the OT/feeding meeting on Wed.  One thing that she told me was that the other factor to consider in deciding about the G-tube is quality of life - trauma of putting in the tube multiple times, damage to her skin, and problems in her throat just from having the tube in so long. 

Prevacid I gave orally tonight.  Eliana spit some of it, but I think most went in.  Some did get stuck in the syringe and I probably need to figure out how to handle that too so that she is getting her full dose,

Well, I think that's it.  I'll edit if there is more to add later.  Eliana's feeding pump just finished and I'm exhausted.  Thank you for your continued prayers. 

Here is a Bible passage that a friend shared with me that was very encouraging.  I hope it will be for you too!

It's 1 Peter 1: 3-9

3Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4and into an inheritance that can never perish, spoil or fade—kept in heaven for you, 5who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. 6In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 8Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9for you are receiving the goal of your faith, the salvation of your souls.

With love,