One More Day?

The mantra we are getting around here is 'Just one more day', then we can go home. It is that elusive 'tomorrow that never comes'. Of course it is Khyle who will dictate when we go home, but NOT TODAY.

His stomach was distended again this morning, so they stopped his feeds and put him back on the drip. There are lots of theories but basically Khyle's digestive system has not acclimatized post-surgery. He needs to eat & poop, eat & poop. But he gets constipated, starts spitting up, tummy swells, must stop food and wait, give enema and wait some more.

So at DAY 19 we are still waiting....

I am so glad I slept home on Sunday night. Maya clung to me like 'white on rice' like they say and it did my heart good to love on her and be loved in return. Quincy is back to work tomorrow, thus I am the full regiment tonight. Well me Jesus, God & the Holy Ghost that is :)

Keep the prayers coming friends, thanks!

Kisses for Khyle

I think Khyle is looking so big now--18 lbs 12 oz. We are very pleased. Some concern about diarrhea-is it just a reaction to new regimen or is it a bug? They are doing a test to be sure. he seemed very comfortable, I was over the moon to see him.

Had a fun zany day playing with Maya & Khyle. She must have kissed him 10 times. She took lots of great photos.

Staying at Children's

There had been some talk of maybe downgrading to another facility but since the surgery is so close they have decided to let him stay here on the GI ward (6th floor) until the day of the surgery. After surgery we will be on the Surgical Ward--5th floor.

Khyle was still a little fussy last night but overall he is well. His last weight was 8. 44kg, that is 18 lbs 9 oz and that is quite good. They are keeping an eye on his liver & trying to make sure it is not overtaxed by the new surplus of food. Khyle looks really well--plump & comfortable. They are also giving him a muscle relaxer for his hypertonicity & rigidness. They hope it will loosen him up overall and also help with his bowel difficulties.

I'll go home tonight & spend some much-needed time with Maya. Master Khyle will be overjoyed to have his Daddy on call. Bye for now...

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.

Hospital stay