So the past few weeks have been pretty uneventful. We went to our clinic visit in Boston yesterday and of course my anxiety level was up. It's so hard to know how those labs are going to turn out. It's usually when everything seems pretty normal that we end up with an abnormal result. We left the clinic with the understanding that if her electrolytes were out of range they would call me on my cell and we would take her to Yale.
Well no news is good news and everything was in normal range. We made it home last night without a phone call. They did however call me this morning to discuss some changes. Juliana's lung disease causes the doctors to be a little nervous about increasing the volume on her TPN. If she gets too much fluid it can overload her lungs, but if she doesn't get enough fluid she will become dehydrated. Her urine output has been on the low side lately and she has gained a bit of weight this month (yeah!), so they have decided to increase the volume again. She will have labs drawn again in two weeks to see how it all goes and of course we will be watching her very carefully as usual. Next week we will also see her pulmonologist which will be just in time with all of the changes.
If she tolerates the volume increase we will be able to cut back to 18 hours of TPN down from 19 hours. I am hoping that by the end of the year she will be on TPN for 12 hours. Now that she is moving around it would be nice to have one less thing for her to get tangled up in. If she can get off oxygen by the end of the year as well we would only have the feeding tube in the daytime. Right now she has so much I couldn't even imagine how tangled she would get if she were crawling and cruising. When her therapist comes for her exercises I try to eliminate as much as I can (like unpluging the monitor and stopping her feeds) and we still end up tangled.
She is still working on her rolling. She manages to roll on to her belly but gets really frustrated. She isn't holding her head up while on her belly. I think that once she is able to support her weight on her arms and upper body that the belly to back roll will come easily. Juliana has also taken an interest in the little stuffies she's been collecting since birth. She especially likes her Zoe that she tosses around. If you hold Zoe up and make her dance Juliana starts to laugh out loud. It's the greatest sound in the world.
All in all things are going well on the health front. We are still recovering from Omar's layoff last month but he's back at work now and we are making the best of it. I did enjoy spending weekday mornings in the office over spending late afternoons and Saturdays in the office, but we do what we have to do to make it work. We are blessed to have employment at all in the current economy so I take none of it for granted.
Hopefully life will continue to be uneventful (at least until our next planned surgery).