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Today is day 20 of Asa's first round of chemotherapy.  I last wrote on day 4, and since then we've had some ups and downs.  

For about 5 days Asa was very distressed and uncomfortable, and could be distracted from the discomfort only fleetingly.  His appetite was faltering, and then dropped off almost to nothing.  For two or three days following he was limp, too weak at one point even to roll over in bed.  When he was left to himself, he'd either sleep or stare blankly at whatever was before his eyes.  When he was moved, he'd feel pain, and protest.

A couple of days in to the distress and discomfort, we took Asa into hospital to get him checked out.  Paracetamol, even at the highest doses recommended for infants, wasn't having any effect; we imagined we might be sent home with some more powerful painkillers.

As it happened, we were in hospital for the following week.  Admitted with hypokalaemia (low potassium), he was immediately hooked up to a potassium drip, and it took several days for his blood potassium levels to stabilise.

It was during that week in hospital that he transitioned from the chronic discomfort to the -- even more worrying -- weakness and limpness.  He'd been eating very little, and in retrospect it seems clear that his energy levels were very low.  Our only consolation was that he was still breastfeeding. 



When he lost interest in the breast, we started to realise that the option a doctor had spoken of when we were admitted, a naso-gastric tube -- which at the time had seemed distasteful -- actually sounded pretty good.

Seeing the tube inserted through Asa's nose and into his stomach was one of the less pleasant experiences of my life. 







But over the following days, as we learned the basics of NG tube care and maintenance, pouring and pushing formula milk and various drugs down it 3 or 4 times a day, Asa made a remarkable comeback.


Only the night before last -- about 60 hours after he'd been readmitted to hospital with a fever and placed on prophylactic antibiotics -- did the tube come out (it was starting to leak from the outside end; its shelf life of 2 weeks was almost passed). 

But by that time, his appetite -- even if not back to pre-chemo levels -- was much improved, and he'd become once again the lively little man we knew and loved.

Last night (February 3) he and Selam got back from hospital, and had dinner at home, and Asa crawled around on the floor and babbled at us; and went to sleep. 

And today he is one year old.

Asa, home again, on his birthday

Comments

  1. Happy birthday little guy! So sorry you have to go through this, and can't wait for things to get better. We love you so much. Your cousins, Eric + Carolina

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  2. Happy Birthday Asa! Thinking of all of you Jed.

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  3. What a beautiful birthday boy. I hope he has many more smiles than tears during the coming year: his smile here warms my heart!

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  4. Happy birthday to a very special boy! He is adorable, Jed! I was wondering why they fed him formula instead of breastmilk through the tube? When Charlotte was fed through a nose tube, they did breastmilk at times and elemental formula when she was having belly problems. I am so sorry your little man is going through this, and I think of your family often. Andrea Arrington

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    Replies
    1. He got breastmilk too, but Selam wasn't able to produce the volume the nutritionists wanted to give him through the NG tube. Another factor is that since he's a year old, he needs more than breastmilk alone can provide, so supplementing with enhanced formulas is helpful. Thankfully he started breastfeeding again pretty soon. It's interesting to hear about Charlotte's experience. Thanks for thinking of us, Andrea.

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