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Thursday, November 22, 2012

Thurs, Nov 22nd

Today felt very relaxed when I entered Noa's room- probably because its a holiday. I was able to spend alot of time visiting with the bedside nurse, Dialysis doctor and Noas doctor as well. 

Today Noa has a different doctor than the last two days, but one that we like and are familiar with. She had a plan written on the white board of what she wanted to accomplish for the day (and you should know from my previous posts that I liked that very much!) 

The ongoing goal is always to remove fluid from her...which they did pretty good at today. I guess her pressures only allowed them to take so much off. I think they said since 7am they had removed over 100mls.

Today is the last day of Noa's antibiotics since she had her infection a couple weeks ago. Its good its ending- because her liver has to filter the meds, but its always a safety net since there are so many opportunities for infection with each poke, or any 'invasive' treatment she's receiving. In light of that, the doctor wanted to remove her foley catheter to reduce infection and possibly make Noa more comfortable as well. We really are praying for her kidneys to work and fill that tiny diaper with urine.

Another concern for infection is the med line in her chest (the old dialysis port). They have tried twice (or maybe 3 times) to find another IV access without success. Not only is it a possible sight for infection, but its also a possible sight for a clot. I also learned that it might also be a factor in why she remains more swollen on the right side of her body (as well as her head). Because that is the side the IV is on, and also where the ECMO cannula were in her neck. So we really need for them to be able to get a PICC (IV) line in and remove the catheter from her chest and allow that to heal.

Lastly, the doctor ordered a consult with the occupational therapist/physical therapist for Noa. They will possibly start working with her tomorrow. Their job would be to work with Noa on moving her little feet and hands around, as well as massage her on different pressure points to help her body be healthy. Isn't that great? 

And I think thats all. When I went to visit this evening, it was still mellow...they even had a radio playing Christmas music. One of the nurses had drapped a tiny knit blanket over her eyes (to block light and encourage rest), and she had her arm resting on a little toy....she seemed a little more like a baby and less of a patient.

Thanks for your love and support! Tonight our family went to some friends house for Thanksgiving dinner. We were grateful to have a home to be at and grateful for the kids to have some 'peers' to play with. It was hard to be away for Noa's first Thanksgiving...but thats ok...I'm sure she understands. xo

1 comment:

  1. Hello Justin and Heidi. I found your blog a few days ago while googling CDH and have been thinking about your family ever since. This past spring my family was in your shoes - in a new city, a new baby struggling to survive CDH and two other small children at home. My heart goes out to all of you and I will be praying for baby Noa. She is a beautiful girl. I pray you will have her home soon.