Tuesday, January 19, 2010

Hospital Stay and Home Nursing

Staying in the hospital this time was rough.  We shared a room with E, the little boy who started treatment at the same time as Sammy.  He has standard risk T-Cell ALL which may sound better than Sammy's high risk category, but really he was in for something more scary than a fever.  His counts had not been high enough for treatment in over a month so a biopsy is scheduled to check for relapse.  I cannot imagine being his mother. (Later edit: Everything turned out okay!)

Sammy, on the other hand, looked a lot sicker; being frail and bedridden most of the time with a definite lack of interest in anything.  Nana came to help, and Sam did come out of his shell with E in the playroom and actually had fun playing with another child on the Wii.  Once I returned, however, he went back into his normal funk and generally stayed in it.  I am not sure the mummy thing helps him much at all!  I know children tend to let their inner feelings show more with mummys...it is a compliment that we are the ones they feel most comfortable with, but it stinks!  I so want to see him happy and active again.

I am also very angry this time.  We were admitted due to a growth of bacterial on a culture taken on the 10th and then remained due to another positive culture on the 13th.  This bacteria (Staph) was picked up in the hospital when he was admitted for the fever...which turned out to be due to no more than a cold.  Now we were waiting to hear if this potentially fatal infection could be controlled and cured, or if Sam had to endure his port being taken out and replaced by a temporary IV line before replacing the port later on...all of which added to the risk of complications.  The bacteria was from the skin, so the hospital was the culprit...I won't stoop to blaming anyone in particular but I do have my doubts.  So we endured a week of misery (believe me, Sam is MISERABLE in CHAM), and nothing we could have done wold have prevented it. 

I decided to take things into my own hands and approached Dr. Cole (via email and phone as I still have not seen him)  to look into home care.  Sam had been put on Vencomycin, the big kahuna of antibiotics, and initially reacted to it with Red Man Syndrome - turning BRIGHT red all over his face and scalp!!!  Benadryl helped control it and, over the next few days, he began to be more tolerant of it.  I felt that this could be done at home...Sam had no fevers and I knew I would be ultra careful with his port and line.  Once the cultures were negative for forty-eight hours, we were a go.  I have to admit I was very relieved about home care, but more so that the infection was gone: I was petrified that it would be extremely serious. 

Sam came home on Saturday, and the visiting nurse came out in the evening to teach me how to administer the Vencomycin.  The medicine came in small 'baby bottles' which pumped the meds through the line.  They only come in one hour doses so I was instructed to clip the line shut at regular intervals so the Vencomycin could run over two hours.  I was to flush with saline before and after treatment and end with a flush of heparin.  Sadly, I was already fairly comfortable with it due to dealing with Jack a few years ago.

Being at home did not really lift Sam's spirits.   Of course he is at the beginning of his next cycle so his body had been hit with several strong chemotherapy meds and steroids.  Most of the time he sleeps or gets angry about food.  New strategy: load up a plate with small samplings of multiple types of foods so he can select the ones he feels comfortable with! 

Jack felt this hospitalization more than ever...he is growing up, turning eight in  a couple of weeks so I am not sure how much is natural, "I'm a big boy with issues," and how much is, "I'm desperately in need of a hug and normalcy!"  I am sure it is a bit of both.  Never-the-less, he does want more time playing sports with daddy, more hugs from Mummy and less bossing from Sammy!

1 comment:

  1. and you also manage to work withg all of this??? You are SO strong, Katy!


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