Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!
The evening certainly went out with a bang and not a whimper. The mom of another little girl that we know here at the hospital came by to visit for a while. She is so sweet and so young, I cannot imagine going through this at 18, and with no family support to speak of. She's been here for 5 months and her beautiful little girl's medical conditions make John's look polite and uncomplicated. John of course kept puking while she was here including one time that the puke spot on the towel looked like an angel playing a trumpet. Too funny! I am thankful for moments of humor!
Another mom came to visit while Mark was down in the cafeteria retrieving onions and jalapenos to make supper more palatable. The docs told her yesterday that her daughter won't live and that they really don't know what is wrong. She won't gain weight and has an unexplainable high fever. They want to talk about DNR next week. The little girl is precious, 17 or 18 months old and despite all of the medical conditions she has beautiful intelligent eyes that take in everything. She was our roommate for the first day or so that we were admitted this time. Her mom loves her so much and is trying to decide whether or not to bring her 2 year old brother to see her before she dies. Dad is worthless to the nth degree. My heart just aches for her and I want so much to tell her about Christ and baptism and eternity but when she was here I said nothing. I'm very ashamed of me. On the other hand, Mark is here and he doesn't start crying each time he thinks about it, so I asked him and he will go speak with them today. Again I am so thankful for him!
To round out the evening John's CO2 was 9. I asked them to draw labs earlier in the day. Things worked out but I would have been so overwhelmingly ticked if they would have put him in the PICU last night. He looked great comparatively - God made his little body in such a way that he compensates very well for these things without going into respiratory distress. Tina was here, she's one of John's guardian angel nurses! Lots of fluids through the night and his bicarb is up to 11 and he looks fantastic, although he's still pooping blood. I'm asking them today to eliminate the really scary reason for the blood - liver failure - for the sanity of this mom! I also want to know if we are going to talk to nephrology - I believe acid/base balance is at least in part kidney function. We'll see, I sitting here waiting for Dr. Hanna who was supposed to be here before 7am, it's 7:30am. I'm thankful that God created John to be such a little fighter!
Tina just came with a message from Susan who wouldn't go to sleep last night until she knew what John's CO2 number was and is already awake this morning thinking about John! She wonders if the bleeding is due to changing out John's g-tube yesterday. A good question, I will have to pass that one along. I am thankful for awesome nurses who go the extra miles to care for my son as if he were their own!
Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!
Hooray the puking has stopped! One brief episode this morning and nothing since despite drinking 18+ ounces of water by lunch. The bloody poops are over too! The theory about the blood being irritated stomach lining seems to be the thing. John made it through the rest of the day with no puking, no pooping and no blood anywhere. Right now he is peacefully sleeping in his crib. What a beautiful boy! He did perk up this evening while we were playing cards and was kicking his foot to move the balloon around that I tied to his ankle. He was very entertaining and then went quickly off to sleep after Mark left for home.
With Mark gone I have time to reflect on the day. He talked to the mom of the dying little girl and went by to see her later and baptized the little girl. He also called Pastor Asbury to help provide ongoing support and together they are going to find pastoral care for her at home too. Of all the tings that we've seen God do at this hospital this is the most comforting. To know that precious little girl sleeps safe in the arms of Christ and will soon see Him face to face and peer into His loving eyes with those beautiful intelligent eyes He gave her, gives us peace amidst the sadness that we feel for her family and all who love her.
Good news, my computer shipped today and soon I will be able to post from John's hospital room! Also Ressy posted new fabric and none of them work for us, but the dungeon sale will be next week. When Sharon came by today she was very impressed with my grey shirt and amused that I planned on sewing my own bras. Sharon is such a joy!
Also from Janeene, she still hasn't gotten all the reference letters needed for our home study. We can finishing paying LFCS through this year and she is trying to hold out on paperwork as long as possible so that we have time to get home and get our physicals and last home visit in. Just have to get John well enough so that we can get home to finish his adoption.
Hopefully things will go well when we start John's feed tomorrow. We are all ready to go home! But of course we need to be here now and besides being here with John is much better than being anywhere without him. It is so hard for Mark to go home and we miss him very much when he is gone - God bless these congregations for their willingness to share his time with us.
Pastor Erik Rottman came by today to visit, pray and brought the Arch book that he wrote which was just published. It is very, very good, almost creedal. It looks like Mark's fellow pastors are going to rally around and support us through these hospitalizations. We sure need them.
Tina is back again tonight. Dr's Hanna and Rothbaum have been pretty good throughout the day and we have hopes for even better stuff tomorrow. John is off of contact isolation so we can roam a bit. Stacey was his nurse today and she was very good, she always is!
Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!
The Food Adventure Continues
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I started this blog when we started changing the way we eat. Finding out we
needed to be gluten free, actually for me wheat free, was a huge big deal.
Late...
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