We had an echo and it showed the digoxin is working. There was increased function in her right ventricle which is huge! We want that to continue increasing so that the chances of Lucy needing a transplant get smaller and smaller. Doctor Husayni also decided to stop the captopril (a blood pressure medication). Long term side effects of this medication can be a dry cough. Since most of her throwing up (which has continued daily) is cough induced the thought was if we stop the medication, then the cough stops and she will stop tossing cookies two to three times a day. We have yet to see a change in her cough but are really hoping and praying another week or two will make the difference. We were going to make another change to medication, but I asked if we could work on removing oxygen. The doctor was on board and so the slow progression to remove oxygen begins.
Since the appointment we have gone from a half liter of oxygen all the way down to a sixteenth. Just like everything we do with Lucy, it is slow and steady. We started at a quarter, right after the appointment and each week we decrease a little more. During the decrease we have also been doing some tests off oxygen. We do anywhere from three to six hours off and hook her up to the pulse Oximeter to check her saturation. I was so nervous for the first test that I was checking every half hour. Now I can go about two hours before checking. Yesterday we did six hours off and at the end of the six hours she was still reading 82 percent. We will most likely get to remove oxygen all together within a week. Let's just hope we don't have to go back on it. That was the main reason Mike and I decided not to push for removal right away. We didn't want to remove it and then a week or so later go back on and have to be on another month. I will say moving from the concentrator (which sounds like a generator) to oxygen tanks was a very pleasant one. We can actually hear ourselves think!
A sneak peak at what Lucy will look like without the cannula. Is that a cheek I see?
The bolus feeds have been going well too. We hit a little snag mixing in formula as our milk supply is decreasing and in another month we will need to move to full formula. Who knew that baby formula could be hard on their tummies. Does that even make sense? We are now doing two bolus feeds at 70 ML and we have increases her continuous feeds to 30 ML/hour. This coming week we will be adding another bolus feed and have requested the next steps in the feeding plan. It is quite exciting to see her progress and hope she will be able to be unattached from the feeding machine for more than an hour at a time.
This past week I met with our care manager at early intervention, we went over some basic information and she put in the order for the therapists to come see Lucy. Next Friday the developmental therapist will come out for her assessment. The assessment will determine if Lucy is eligible for treatment. I can't decide which way I would prefer the assessment to go. If she isn't eligible that would mean she is on target for her age. For developmental, I could really go either way, but I am praying she'll be eligible for speech therapy. Obviously it's not for talking, but for eating. I just know I could use all the help I can get for Lucy to start eating by mouth. We should know in the next two weeks for sure. Once the assessment is complete they would then determine how many visits she would need on a monthly basis. So next week should be a big week for us. Maybe I can get my act together to post an update in a reasonable amount of time. Wait and see!
I'm working hard on tummy time
I smile all the time, just make funny noises!
And I can sit, with some support. Soon maybe on my own! Oh and sometimes we play dress up in my fancy clothes.
No comments:
Post a Comment