Day 154

Today Ryman is 5 months old!! How crazy is that? This is the 4th month birthday she has spent in the hospital. But this one we are so happy to be sitting here at Georgetown with her second transplant done. I can remember reading about a baby who had 2 transplants within a few weeks and thought how horrible that would be. Ryman is now one of those children who by the age of 5 months has already had two liver transplants! It doesn’t even feel real that this is our life. I find myslef thinking that a lot lately. Not only do we really have a child but we have lived in DC for 4 of the 5 months since Ryman was born and she has had 2 liver transplants. It is so surreal. I think my life since getting pregnant has felt that way. We know that part of it is all the prayers we have been showered in, Jeremy and I have felt so much peace through this all.
The past few days have been good. Every ultrasound has looked good. we had them for 6 days instead of 3 like last time. There is a small pocket of fluid in the liver but they are not worried about it, blood flow is good and that is the most important thing. All liver numbers are in normal range and we are just trying to get the lovenox (yes, we started the dreaded shots again) level worked out to come off of the heparin. We also started baby aspin yesterday as an added measure to prevent clotting.
We had one scare last night while the nurse was drawing blood from the line in her neck. It is called an Internal Jugular line. When she went to draw blood back Ryman’s heart rate dropped to the 60’s and her oxygen level dropped to the 50’s. Lots of yelling for doctors and starting oxygen quickly to get her levels back up. It was a pretty scary moment. She recovered quickly and they gave her blood shortly after. We had been thinking she was pretty anemic yesterday and debated giving her blood. This was her way of saying you aren’t getting anymore unless you give me some now! She has been fine since and they think it could have been from stimulaing the nerve in her neck next the the jugular that causes people to faint. You know that feeling when you stand up to soon and you get dizzy, she pretty much had that and did the equivalent of passing out. Not fun and hopefully this doesn’t happen again.
Yesterday the JP drain was removed! They made the decision for it to come out during surgical rounds and Jeremy calmly stepped inside the room and did a little vicotry dance. Wish I could have caught it on video to share with everyone. Pretty entertaining.
There has been discussion of all lines being removed before we go home and not putting in a broviac like we thought we would do. We are all for no lines but we were concerned about them getting an IV for the Cytogam infusion (this medicine helps prevent CMV). We originally thought we would start over with those infusions but they actually decided to continue from inital transplant. Now the plan may be to discontinue the treatment if her risk and the donor blood work shows low risk. The risk of a line infection may be higher than the risk of CMV. Ryman had to have the NG tube put back in for feeds. She has really not had any interest in her bottle or eating. We finally got her to take a full feed of 75ml today. We were so excited. We would be okay leaving with the NG tube but would love to leave the hospital completly line free.
The plan at this moment is to potentially be discharged on Thursday if everything continues well and she is on full feeds, either orally or through the tube.
God has been good and we are so ready to start the recovery process out side of the hospital.
Love to you all and continued prayers that Ryman continues to heal and exceed expectations.
-B

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One thought on “Day 154

  1. Hello Sweet Little Family,
    OMG! She is so beautiful! That smile is the best! You guys are so covered in prayer. There is a guy at work that has his church praying, so now I come in to work and give “Ryman” updates. It is awesome. Yesterday was Bethany’s birthday, so glad we could celebrate her and Ryman together! Can’t wait to get my arms around you guys. BIG HUG!
    Love and prayers,
    Lori Dean:)

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