Saturday, April 5, 2008

Undescended testes scan - excruciating Gtube change - painful urine cathetar - hernia - pneumonia

8hrs at Childrens. From Radiology to search for the undescended testes. They think they find one, possibly two, after an exhaustive search but also find a hernia. Next step unknown on the hernia. Re the testes, possibly MRI or CAT scan, testosterone shots and surgery. To Pediatric Surgery to replace the Mickey with an Entristrar button. Forcing the button into his open stoma in his stomach, they describe the feeling for Reuben as like a big punch in the chest, but with the blood seeping from the stoma and his terrible pain, it is more like a stab. Cry him to sleep in my arms. After an exhausting night of coughing and suctioning every 30 mins which we think might be trachyitus or related to his ear operation on Monday, also go to ENT who performed Monday's surgery to find Jiffy the trach nurse. Wait, noone available. Sent to Pulmonary clinic. Wait, noone available. Sent to General Paediatrics clinic. Wait, noone available. Sent to ER. 5hrs of too deeply suctioned trach cultures, painful urine cathetarisation to check for urinary track infection and later a lung xray, we emerge with a diagnosis of right lung pneumonia.

Despite the horrific pain he endured today, Reuben emerges to sign Daddy not by imitating the sign, but by me saying the word, a first. Amazing boy who endures so much today. We get home at 7pm after leaving at 8am and both go to bed.

9 comments:

cherrychomper said...

Dear Catherine, what a day. It must have felt like there was neither hope nor help. Yet once again that wonderful boy of yours disperses the grey with his strength,courage and charm.

You and your family are a true inspiration,

Lots of love,

Cherrychomper

ypersico said...

Oh Catherine - what a grueling day. I am so sorry. I remember those days with Keith and my sense of time became much like what his must have been- a series of "nows" - now it hurts, now it is fine, now I am interested, now I am coughing, now I am smiling, look at everyone smile back...it was an eternity of nows - one after another... and then all at once it shifts.... until that time, I hold you, Jason and Reuben in restoration and light to endlessly find the joy and wholeness in each and every now.... love,y

ellen charge said...

wow wat d day for u all

Mary said...

Hope brave Reuben is improving. I am sure each of you is exhausted.

Praying for each of you.

MK said...

what a day for you guys... ... too bad they could have gotten that button in with the other surgery, for coarse that would be too easy. Glad to see Reu doing so well standing up. Lucas isn't there yet but he's working hard. Hopefully the tubes Reu got will help too.

Geraldine said...

What an awful experience for you all. I felt so sad to hear of him in pain, helpless to all the ups and downs of the tube and trach, operations, interventions. And yet he wakes up with cheer and a chat. Remarkable, brave little boy. What a joy he is.

Lots of love to you all.
Geraldine and Mark xxx

hannah m said...

Oh, my. What a day. But the bright shining light of your sweet Reuben is so strong and so inspiring. What a trooper of a boy, and a trooper of a family.

May today be a respite full of cuddles and smiles.

Ericap said...

What a day indeed! You must have felt so drained, but for Reuben, seeing and knowing that you two were and are there for him all the way, keeps your boy strong. Keeping hope that he makes a speedy recovering from the pneumonia.
With love
Erica

Eva Nichole said...

Hugs to you all, that was a hard day. Poor Reuben!!
I hope the rest of the week is better for you all.
Hugs,
Crystal and Eva