Day 135

We were suppose to get dicharged today but Ryman had other plans. She decided yesterday that she didn’t want to eat. So we spent most of the day trying to get her to eat about 4 different formulas. We had stopped the morphine the night before and went to Tylenol. Last night we thought that she may be in pain and that was why she didn’t wat to eat. However, we gave her a one time dose of morphine and she still didn’t want to eat. We let her have a break and started IV fluids back over night. She slept the entire night! This morning her blood count was low and her white blood count was high. She got a blood transfusion and this morning they gave her some extra antibiotics just incase there is some kind of infection brewing up. She since has been eating a little more and seems to feel so much better. Her personality is back and she is cooing more and more.
I have given one shot of Lovenox (should be called LoveNOT) to her so far. Jeremy is way better than me at it. I thought it would be easier but man is it so hard. She does the hold your breathe then scream at the top of your lungs cry. It is so sad. Hopfully we will only be giving her these for 6 weeks.
She is currently running a low grade fever. So prayers that it is just something small and the extra antibiotics clear it up quickly. There is a hypothesis that she could be teething but who knows.
We might get discharged Monday if we figure out this fever and her labs look good. There are two other children here tonight getting livers. So crazy. We sit here thinking how amazing it is that we are a week out from the surgery. This time last week we were playing Mexican train and Ry was getting her new liver. It feels so good. Yet tonight a family has been without their baby for a week now. How difficult this day and every day since has had to be for them. A part of their child is here with us. Tears fill my eyes as I think about that child. Jeremy is soothing Ry and rocking her to sleep. What I know they would give to be doing the same. It is such a crazy feeling to feel joy and sadness at the same time.
We love you all.

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6 thoughts on “Day 135

  1. A friend of mine posts ur blog on facebook and over last weekend I read every entry. I read some to my 22 month old son and he loves the pictures you have posted. He gently touched the screen looked at me and said “baby”. We pray for your baby every day!

  2. Hope & pray all is well with Ry today.
    My nephew had open heart surgery so I haven’t got your care package mailed yet (sorry). Do I need to send to the same address in MD?
    Prayers for Ry & y’all as you have to do the shots. God Bless

  3. YOU AND YOUR HUBBY ARE AMAZING PARENTS,MAY GOD CONTINUE TO BLESS YOU ALL AND PRAYERS TO THE OTHER FAMILY FOR THEIR LOSS IN JESUS NAME,AMEN . PLEASE GIVE BABY LOVE FROM US AS WELL. LOVE YOU ALL
    GENNYLEE ,JENNY & PAUL

  4. Has anyone discussed a subq port? It can stay in for a week and you stick the needle through the port in her leg instead of sticking skin every time. You all can remove and insert new ports at home on your own!

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