bunkered down

Cold and flu season sucks. My baby girl has a cold and desatted to 79 last night a few times. I called the pulm nurse and turned her O2 flowrate to 1 1/2 liters. She's now 94 % and sleeping like a baby. No PT today. This season is starting out worse than last year. We are no longer taking her out to stores, restaurants, etc... Ava is bunkering down for the Winter.

Ava saw GI yesterday and we will be discussing g-tubes in February at her next feeding team appt. Her OT isn't helping and she just can't manipulate food in her mouth as she should. She has moderate - severe hypotonia in her mouth and jaw too. She can't stay on this liquid milk/carnation/rice/simply thick diet forever. We have a 3 month grace period to work an OT miracle. To be hoenst, I'm not stressing over it. Everything happens for a reason, right?

We decorated the tree for Christmas, which was a big hit. I have no ornaments on the bottom half of the tree, although I couldn't tell you why. I do have my suspicions....

The places she'll go

Home:)

I know I left some of you confused. Ava went downhill fast on Friday evening and what I thought was a trip for fluids turned into another stay at hotel childrens. I'm still confused and waiting for more info. Some of the tests are highly specialized and will take up to a month for results. Ava's discharge summery is this:
"19 month old female with congenital syndrome unspecified consisting of CP, macrocrania, laryngomalcia, OSA, GER, feeding difficulty, seizure disorder, cyclic fevers, and polydactyly. Now s/p supraglottoplasty, on home oxygen. Positive hemoccult. Renal and CBC showed acidosis, neutrapenia, bicarb 17, glucose 46 and moderate ketones. Positive urine organic acids. Will f/u with genetics in the next few days for metabolic disorder. Will f/u with GI in 3 weeks.

Cardiac: Tachycardia to 160s noted when asleep despite apparent euvoemic status; will follow. ....."

It went on and on... The nurse got Ava's bicard numbers wrong. Ava's were low, not high. I also know that she has chronic low white counts since she's been seen at Cinci Childrens in May. They're looking into why. Lovely:(

Ava is doing well today. Her walker was here when we got home last night. She's already walked with it a little bit. Her energy is still low. She's happy to be home and being her spunky little self. Very smiley.

Thank you to all the prayers and help!! Prayers worked:)

Going for a ride from liberty campus to base.

The transport team was very nice. they've traveled all over the world going to get airway patients for Dr C and all. Wow! They came to check on her. Ava actually slept almost the entire time we were in the ambulance.

I think she had a baby crush on him! The only person she waved bye-bye to.

Have I ever mentioned how much I love this girl? She's my sweet, brave, goofy baby.

Wednesday

Ava gets to go home today! She will follow up with genetics and GI in the next couple weeks for possible metabolic disease. We will start checking her blood glucose at home.

anyone know?

Does anyone have experience with elevated bicarbs for prolonged periods? This remains one of Ava's problems. Any input? I don't have a computer here.