This is Quincy, posting while Suzette is signed in...
Khyle The Warrior and I spent the day snuggling in his hospital room. It was a day of quiet communion, and we both missed Suzette but - as men do - silently agreed not to mention it to each other. One of his nurses, Bea, bathed him, and couldn't resist once she saw his hair. Now, instead of his customary afro, Khyle is sporting a head full of cornrows, and rather than a Warrior, today one might be forgiven for mistaking him for a little gangster of love. He's only missing the terrycloth running suit, the Addidas and the gold rope chain to complete the look.
On the medical front, he continued to do well today, dramatically increasing his pee output and putting on even more weight. He weighed 8.42 kilograms at about 4PM, so that meant he'd put on weight even from late yesterday. At this rate, who knows where his poundage will end up? As Suzette noted, the diagnosis under which he was admitted was "Failure To Thrive:" it appears to me that he is indeed now thriving, and that quite well. The difference in his physique is visible to the naked eye, which makes my four eyes very happy, to say the least. The doctors have increased his feeds, and also have put him on a regimen that gives him a break in the feeding. This will help him learn to tolerate more food and to retain the calories thus ingested.
During his first break from feeding, I took him off the monitors and we went on a little galivant around Children's National Medical Centre. Then we watched Sam Stosur put it on Justine Henin (even though I was pulling for Justine) and we watched Rafa Nadal destroy the young Italian fellow. The French Open was fun, and we are both looking forward to watching Stosur try to beat Serena Williams: what a war that will be! Needless to say, he enjoyed the walk, and hanging out with some other children in the lobby of the hospital. They thought he was a girl because he's gorgeous, and he inspected them while they did jumping jacks and ran up and down. Then it was back to the room for more snuggling and snoozing.
I'm up again tonight, so we'll have more to say about it tomorrow I'm sure.
Thank you all for your prayers and support My little boy is amazing.
Monday, May 31, 2010
Two Glorious Pounds
As of last night, Khyle's new weight is 8.29 kg or 18.27 lbs!!! So his weight has increased 2 lbs from 16 to 18 in 2 days. It looks like the feeding & IV regimen is working!
This is good news because it suggests that he does not have any underlying medical problems causing weight loss. He just needs more food & liquid. We hope to talk to Nutritionist/GI specialist tomorrow & work out with our insurance buying a proper feeding machine. Yes this will be one more cable plugged into the boy, but we will be able to feed him larger amounts of Pediasure continuously for 24 hours.
Quincy will also give a report later. He stayed as the hospital last night, I will be going to visit the boys soon.
Keep up the prayers...God is good!
Sunday, May 30, 2010
More Pee Please
The great thing that is happening here is that they are measuring every ounce that is going in and then every thing that is coming out. It was assessed this morning that Khyle's pee measured just 158ml when they would like to see 180ml. (5ml=1 teaspoon/30ml=1 oz) So that means he is still dehydrated, so they gave him a large amount of saline fluid (300ml) at one time via an IV drip to replenish his body.
So this is how it will go daily. How much food/liquid does his body need, is he processing the nutrients, is he peeing enough, pooping enough? They will also look at his blood work from yesterday see how he is metabolizing every thing.
He is comfortable and sleeping now after his respiratory therapy. It is Sunday but I should see the doctor by midday.
More later...
So this is how it will go daily. How much food/liquid does his body need, is he processing the nutrients, is he peeing enough, pooping enough? They will also look at his blood work from yesterday see how he is metabolizing every thing.
He is comfortable and sleeping now after his respiratory therapy. It is Sunday but I should see the doctor by midday.
More later...
Saturday, May 29, 2010
Khyle Re-Admitted, 'Failure to Thrive'
I am not sure who told Children's Hospital we were ready to be back in their care quite so soon? We were planning to check-in on June 9th for the much prolonged/much anticipated Cranial Vault, so imagine my surprise when my Nutrionist/GI Specialist Ginny took one look at Khyle yesterday at Nutrition Clinic and said,
"Oh he's much too thin, he needs to be admitted!"
This was supposed to be a follow up appointment for nutrition since his emergency gastric surgery in March. I have been here twice to GI since our discharge & 4 times for pre-op appointments with neuro & plastic surgery in preparation for the Cranial Vault scheduled June 9th. Instead here we are May 29th and we find ourselves enjoying the hospitality of the Gastroenterology Ward on the 6th floor of the East Inpatient Towers at Children's National Medical Center (CNMC) in DC. My, my, my.
Khyle's official diagnosis is 'failure to thrive'. In December we celebrated when he finally reached the 20 lb mark but after the surgery and 10 days in hospital in March he fell to 16 lbs which is what he still weighs two months later. This is not good. Either he is not getting enough food, not processing his food properly or he has an underlying medical condition causing him to burn excess calories. The doctors are feeding him via a machine so that he gets the food slowly and can consume more and absorb/process it better. They are doing daily blood tests to check eletrolytes & are weighing & measuring all output :). I just saw the main GI doctor, Dr. Bader, he was very calm and reassuring but said he wouldn't give any estimates or advice about anything for at least another 2 days. Basically Khyle needs to eat well, pee well, poop well & GAIN WEIGHT.
It has been suggested that Khyle remains in hospital on this feeding regimen until the 9th & then go straight into cranial surgery. That would be 13 days plus new surgery plus new recovery time. It sounds exhausting but we want what is best for our dear sweet Khyle and will heed all medical advice. For certain we will have to change our feeding routine at home and get a feeding pump that can administer Pediasure to him at a slow continuous rate. Maybe if we can arrange that, they may let him come home for a few days before the Cranial Vault.
It is 11:30 am Saturday morning. I went to bed about midnight and arose at 6am. I heard the nurses all night long and they responded very quickly to Khyle's needs. I saw 3 doctors last night, six nurses, a respiratory specialist & someone else whose forte I forgot. This morning I saw 3 nurses, a dietician, the 'main' GI doc and a respiratory specialist. What else does the day hold? Our precious boy is sound asleep. I soothed him some early this morning & he has been asleep ever since. I miss Maya 'papaya' & hope to see her later.
Certainly it goes without saying we need your prayers for strength, wisdom, healing, provision and anything else you can think of. We love you, kisses & hugs to everyone-- xxoo.
"Oh he's much too thin, he needs to be admitted!"
This was supposed to be a follow up appointment for nutrition since his emergency gastric surgery in March. I have been here twice to GI since our discharge & 4 times for pre-op appointments with neuro & plastic surgery in preparation for the Cranial Vault scheduled June 9th. Instead here we are May 29th and we find ourselves enjoying the hospitality of the Gastroenterology Ward on the 6th floor of the East Inpatient Towers at Children's National Medical Center (CNMC) in DC. My, my, my.
Khyle's official diagnosis is 'failure to thrive'. In December we celebrated when he finally reached the 20 lb mark but after the surgery and 10 days in hospital in March he fell to 16 lbs which is what he still weighs two months later. This is not good. Either he is not getting enough food, not processing his food properly or he has an underlying medical condition causing him to burn excess calories. The doctors are feeding him via a machine so that he gets the food slowly and can consume more and absorb/process it better. They are doing daily blood tests to check eletrolytes & are weighing & measuring all output :). I just saw the main GI doctor, Dr. Bader, he was very calm and reassuring but said he wouldn't give any estimates or advice about anything for at least another 2 days. Basically Khyle needs to eat well, pee well, poop well & GAIN WEIGHT.
It has been suggested that Khyle remains in hospital on this feeding regimen until the 9th & then go straight into cranial surgery. That would be 13 days plus new surgery plus new recovery time. It sounds exhausting but we want what is best for our dear sweet Khyle and will heed all medical advice. For certain we will have to change our feeding routine at home and get a feeding pump that can administer Pediasure to him at a slow continuous rate. Maybe if we can arrange that, they may let him come home for a few days before the Cranial Vault.
It is 11:30 am Saturday morning. I went to bed about midnight and arose at 6am. I heard the nurses all night long and they responded very quickly to Khyle's needs. I saw 3 doctors last night, six nurses, a respiratory specialist & someone else whose forte I forgot. This morning I saw 3 nurses, a dietician, the 'main' GI doc and a respiratory specialist. What else does the day hold? Our precious boy is sound asleep. I soothed him some early this morning & he has been asleep ever since. I miss Maya 'papaya' & hope to see her later.
Certainly it goes without saying we need your prayers for strength, wisdom, healing, provision and anything else you can think of. We love you, kisses & hugs to everyone-- xxoo.
Subscribe to:
Posts (Atom)
