Feb 18, Day 4, First walk and Sierra's plan

Monday
This time we slept until 5:00 am before the call, but I guess she tried at 3:30 am and we didn't 'hear' our phones.  Lindsey was NOT impressed.  Oh well. Lots of good stuff today. She is down to 3 liters of oxygen, and breathing much better. Her kidney's have kicked in and doing much better. They have pulled two of the three chest tubes and two IV's. 

Transferred a lot of her meds to oral rather than IV. Her old cannula sites have dramatically slowed down with the drainage.  She has been ok'd for a full diet, but of course doesn't want to eat / drink as much as she needs. Hopefully that picks up before the dreaded feeding tube has to go in. She is eating a little, just have to see. The Princess fiery personality isn't back yet, but getting closer each day. You can see that 'recovering' look in her eye.

Best of all her favorite physical therapist came by, got her up, and took her on a nice long walk around the unit.  They are talking about letting her go to 3 West tomorrow!! Now we are talkin'!

They just moved us from the corner room back to the SAME room she was in when she was on the Berlin. Everything feels the same except a lot! She is fleshy, healthy, no blood thinner, and most of all no Traeh Nilreb!  I remember sitting in this very corner 7 months ago on the 4th of July looking out the window doing my updates. Strange thoughts.

Still looking at Wednesday evening for the ceremony.

As for Sierra, they have consulted several experts from around the country and Canada. Tomorrow we need to have her here for placement of the port catheter through her vein. This port will be in for the 5 plasma pheresis treatments.  The first treatment will be here in the CVICU tomorrow and will last a couple of hours, she will then stay here for 24 hours to make sure everything is okay. Her next treatment will be 2 days later in the Short Stay unit down stairs.  She will have treatments every other day for about 12 days.  At the end of the treatments, she will get a new IV medication, get a 12 hour IVIG, repeat the biopsy, then see where her anti-body mediated rejection (AMR) is at.  (AMR is becoming a cuss word among transplant patients).

Just so I am clear, she has elevated pressures in her heart, it squeezes fine, but is showing signs of stiffening. If this therapy doesn't work, we will be reintroduced to the thought of a 2nd heart transplant for her.   I understand there is a lot of uncertainty and we will understand more as this treatment moves forward. They admitted, they have not very many kids need this therapy. Usually the IVIG has worked, so this will be something relatively new for some of them. Doesn't that just make you feel warm and fuzzy inside!  God has heard and answered prayers before. Miracles do and have happened. No reason in the world why he won't hear and answer these prayers. He knows each one of us and has a plan for us.

I have said this before, but I must repeat this for myself.  Lindsey AND Sierra both including the other kids need to see and feel and know that their parents have all the confidence, hope, excitement, enthusium, and faith that they will pull through this.

So tomorrow, Lindsey should be heading to 3 West and Sierra will be here in CV. BRING IT ON!!

Gage, dad-gum-it, don't you even think about it!

 Drinkin' and getting ready to ambulate

 We are movin'

 During her walk, a visit to an old friend, traeh nilreb.

Jerry from RT, She still likes his hair.

 

 Dressing change for the old Berlin sites.  It really did remind me of a cancer eye cow. I have other 'better' pictures but didn't post.