Monday, May 9, 2011

BMT +43


3/30/11

We have had many ups and downs over the past few weeks but are taking things one exhausting day at a time. 

On the positive, Teri’s WBC and ANC counts have climbed to normal levels (as high as 7100) as of a week ago.  Both Ben’s cells and the baby’s umbilical cord are actively growing 50/50 each in her marrow based a chimerism assay on her bone marrow biopsy. 

However Teri continues to fight three viral infections – a common problem during haploidentical transplants – causing excruciating pain and suffering from the oral ulcers and hourly bladder spasms literally 24/7 for three weeks. 

The bumps in the road continue.  On top of the continuously bleeding from the bladder, she developed hydronephrosis (swelling of the kidney collecting ducts) of both kidneys and kidney failure from her antiviral agent foscarnet (BUN 92, Cr. 2.0).  If her BUN exceeded 100, she would have to begin hemodialysis.  Fortunately, it began to improve yesterday.  However, the swelling of her ducts worsened and she underwent bilateral nephrostomy tube placements yesterday afternoon so has two tubes placed in her kidneys draining through her back into two drainage bags.  Despite how gruesome this sounds, even though we still see bloody urine, it has allowed her bladder to rest for the first time in three weeks and she is beginning to get more than 1 hour of sleep.

One never ceases to be amazed at the delicate fabric upon which Teri rests and the imbalances that can result from pulling off one end of her biological blanket, namely her immune system. 

What comes next?  Her five IV’s were stopped today …  Today, her attending physician said if Teri can eat over 1000 calories per day and can walk on her own, she will get to come home soon!  Incroyable!  I don’t think she really believes it yet.

What do we need?  Teri and I are all depleted physically and emotionally by these recent trials.  I would like to ask for help in taking care of Teri in the next two-three weeks once she comes home.

Visitors:
Uncle Tony visited for three weeks providing support for both Teri & B.  The last day of his stay overlapped with the first day of Rachel & Jack’s visit.  Because of the 15 immunocompromised patients on the ward (different from the adjacent ward where she spent her other hospitalizations), babies and children are not permitted in the rooms.  This means that Teri must come out of the ward into a separate exam room to see Jack.  Because of her constant pain, this was physically taxing for Teri to sit in a wheel chair but emotionally uplifting to see Jack.  Since she last saw him, he has changed so much.  He is now rolling, grabbing and babbling non-stop.  He smiles especially at grandma, continues to watches her every move when they are together, and holds onto her fingers ever so tightly.  

Little Jack has also stimulated a bonding across 90 year span in great grand pa.  He is fascinated by Jack and will play with him for an hour.  We were surprised when he picked up Jack while Rachel was not looking.  Fortunately, despite our belated worries, nobody was injured in the process.




Rachel & B

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