Monday, December 29, 2014

Jinx

I didn't want to jinx our chances of having to go back on oxygen for Christmas so I postponed any updates until now.  We are officially off oxygen for eleven days and we are holding strong with saturation's ranging from 85 to 92 percent.  I wasn't sure we would make it to Christmas based on our past tests but this time Lucy was ready.  I can't begin to tell how awesome it is to have her 'free' for most of the day.  She technically is not tube free because we still have the NG tube, but her feedings are only a half hour long.  In total that adds up to four hours a day, two of which she is usually sleeping.  I really didn't think being on oxygen  at home was that bad, but know that I have a taste of the good life I don't want to go back.  Traveling is even better!  I took her two Jewel the night before Christmas Eve and I brought just her.  I even took her out of the car seat and let her sit in the front of the shopping cart.  I think she thoroughly enjoyed it too.

No cannula

Christmas Eve we spent at my parent's house and Christmas day was spent at my in-laws with a quick stop to see Great Grandma before heading home.  Mike and I were unsure how both trips would play out. especially since Lucy's stranger danger radar is in high gear.  But it must have been the presents or the attention because Lucy could not get enough.  She smiled through both days and didn't cry once even when she was held by someone other than Mike, myself or the grandparents.
We also found out that if she is really tired, she'll sleep anywhere.  During Christmas day festivities, she went down like a log on two fleece blankets and slept for two hours.  That kind of nap is almost unheard of in our house.  Maybe we need to rethink her bedding and crib situation.

Christmas baby




















Friday we headed back to the hospital for a follow-up x-ray to make sure there was no effusion and being off oxygen did not have an impact.  We got word today the x-ray was clear.  Woo hoo!  This will mean that we can start discussing decreasing some of her medication at the next appointment.  We will also start talking about g-tube surgery again.  Since our potential move will be in January (both our loan and the buyers loan is still in underwriting) and Lucy's birthday is in February we may try to push surgery until March.  Three more months with the tube on her face.....ugh!  The only way it will happen sooner is if her cardiologist deems it necessary.


What Lucy will look like when she is eventually 'tube-free'



Sunday, December 14, 2014

glad to be home

We had our follow-up appointment with cardiology on Friday and it was the best one yet.  Probably because we had no tests.  No x-ray, no EKG, no blood test, no echo.  Lucy cried only once when I laid her on the scale to get weighed.  She is almost fourteen pounds.  The remainder of the appointment she smiled and played.  I think it may have been the first time Dr. Husayni has seen Lucy happy.  He listened to her and said she sounds clear.  I asked about a couple of thing at the appointment.  The first was removing the 3 am feeding.  We will have an in home nutrition evaluation before we are able to make any changes.  We will endure a little less sleep for another month or so and hope it can be stopped in January.  The second was removal of medication.  Lucy is currently on seven medications, potassium and a vitamin.  I would love to get this down to two medications and her vitamin.  The first ones to go would be the diuretics and potassium.  However, since we have only been back on regular formula for a little over two weeks we will remain on the them until our next followup in a month.  Then possibly the reflux medications.  The throwing up has completely stopped, so we will keep the dosing the same and as she gains weight she will ween herself.  The last question was oxygen.  Can we remove it already?  Wait for it..........

   A week before Christmas we get to take Lucy off oxygen. 

Next Friday we will remove Lucy from oxygen.  I am excited and terrified all at once.   After a week off oxygen we will head back to the hospital for an x-ray to ensure there is no effusion.  This is huge.  Her saturation's have been in the nineties since the ballooning of her aorta and we have had her on only an eighth of liter.  Since the appointment I have moved her down to a sixteenth of a liter.  As long as her saturation's stay in the low eighties and above we are okay off oxygen.  I think it will be a good two months before we travel without our oxygen tank....but at least she doesn't have to be connected to it!

Then we can focus on removing that last tube from her face.  Unfortunately the G-tube surgery has been postponed due to our extended hospital stay and unexpected surgery.  We will start talking about surgery again at our next appointment in January.

In the last ten months I have asked for many prayer requests.  Sometimes I think more than in my previous thirty six years.  I know that the answer to my prayers is not always yes, sometimes it is no and sometimes it is not now.  I mean Lucy came after seven years of praying.  But yet again we see another prayer answered (and might I add quicker than I anticipated).  When Lucy came home from the hospital, the condo was perfect for us, but as the months have progressed, it seems to be shrinking by the day!  At the beginning of October we listed the condo, we had a couple showings and were preparing to remove the listing as we approached the holidays.  Then we got re-admitted and I swear everything falls by the wayside.  Well during that stay we received an offer and accepted.  Since then we have been feverishly looking at houses so that we will have a place to live.  Fifteen houses in one week and we found a house that we think will suit our needs for the future.  So once again, we ask for prayers that the entire process:  selling and buying, go as smoothly as possible.

And of course if anyone has any furniture they are getting rid of let us know.  If we are need, we will gladly take it off your hands.