First Steps were too big

Well to everyone sorry it has been so long since post, but alot has happened and as most of you know hospitals are like time suckers. First off last night we got Cassi a 4 hr pass and went to see Elli. We spent about 3 1/2 hrs with her and met too many people for me to remember. (sorry) Anyway her blood pressure was fluctuating about and after we got back to St Lukes (I crashed at 11:45)Cassi tells me mercy had called and wanted permission for a transfusion at 1:30. At 5 Cassi called mercy and Elli was still having a bad night.

I was ripped out of my sleep by our doctors voice this am checking Cassi and getting ready to dismiss her around 7. Nurses brought in some breakfast for both of us and I got in shower to be ready when Cassi was dismissed only Mercy called at 8 and said we needed to be down there Elli was steadily getting worse and she was going to have to be put on ECMO. So by the time we made it we got to see curtains closing in Ellis room and there must have been 20 to 25 nurses and doctors in her little room. Overwhelming is an understatement, I don't care how prepared I thought I was.

We then waited in a family room met various other people who started our orientation of the ins and outs of the hospital and this cdh baby thing. I think mostly to take our minds off of the other room. Elli's procedure really did not take very long for as intrusive as it is, a little over an hour. We then got to go back in and see her she looked a whole lot better than last night actually had a pinkish color instead of pale. We discussed the plans for the rest of the day with the doctors and figured our "4 hrs tour" was just about over so we got Cassi back to St. Lukes to get rest of stuff out of room and get discharged.

Cassi actually ate lunch at St. Lukes and pumped again before we finally got out of there. It wound up taking a lot longer to get back because we had to stop and shop for pants maybe I should say wanted to stop, seriously, I had been giving Cassi a hard time because she had not gotten any clothes and needed some sort of clothes (not all mine) to get by. So it was around 3 when we got back to find that Elli had a super tuff afternoon. The doctors have had a terrible time keeping her stats in the range needed. After discussing over options it wasn't hard to figure out how frustrated the doctors and nurses were are. More tests still cant be sure how much lung is on left side and seems like when right lung gets breath it pushes on heart and throws everything over making one side not work to its full potential. So blood pressure is till plunging way to low. Just when the medicine that was put in would take affect her blood pressure would surge too high. This seemed to be a circular pattern several rounds of meds on and off or lesser greater doctors in and out phone calls etc she seemed to get fairly comfortable with the idea of this machine working for her and not so much of her working for it. All of the tweaking seems to have finally helped and leveled off for now.

We got to Ronald McDonald house at around 10: 15 and got to turn on computer. Thanks for all the posts, prayers and support it makes it nice to read and see it all after a day like this.

I'm tired now. Thats all I want to say tonight .

love and thanks

Brian and Cassi

Ps sorry for not posting pics yet.