Posts Tagged ‘g-tube’

Discharged!

Saturday, April 9th, 2011 by by

Ava was discharged from CCHMC :)  Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so.  The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by the cardiomyopathy clinic.  Mito causes heart weakness (and many other heart related issues).  I also found out that her last echo showed a small VSD.  I didn’t know about that!

She’s home and still not feeling well, but hopefully she’ll start perking up.  Her oxygen needs have increased.  Her doctors said that she handles any illness a lot worse than “typical” children.  The smallest things really set her back.

We met a sweet 12 year old girl with EB from New Jersey.  Childlife asked if we could show her and her Mom Ava’s feeding tube.  Ava is very proud of her tube and was happy to show it off.  Ava was very impressed with this girl’s bandages (she has EB and wears bandages all over her body) and asked her nurse for some of her own.  Today the girl is getting her feeding tube put in.  I hope she does well.

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She Needs a Beak

Sunday, February 6th, 2011 by by

I’ve been a terrible blogger lately. I’m sorry.

Ava had a week of appointments this week. We have successfully restarted G tube feeds again. She is continuous 21 hrs a day with one mini bolus. The trick is keeping her blood glucose up, and we are still walking a fine line with that.

Some of her GI biopsies came back. Ava has been diagnosed with Eosinophilic Esophagitis. She has eosinophils in her colon as well. After her special needs and gastro doctors discussed it, they decided not to treat it right now. We are watching it. Our first priority is glucose levels. She’s on Peptamin Jr, which is a good EE formula anyway. We can’t afford to lose the complex carbs.

I had a heart to heart with genetics. They fully believe there is something more than her Mitochondrial disease going on with Ava. They have voiced this several times. She is constantly being poked and prodded. Her results are always “weird”. I’ve asked them to put further testing on hold for 6 months. Ava needs a break.

The weather has been terrible, so we’ve been in the house as much as possible.  I hope everyone is enjoying their Winter:)  I am ready for Spring!!

Keeping Up

Saturday, August 28th, 2010 by by

I know I’ve been MIA lately. Things are busy with back to school for Dakota and Christian. Ava’s appointment schedule is tiring. Today was hematology clinic. This specific doctor was one of the doctors that cared for me when I was Ava’s age with Neuroblastoma. She’s treating Ava for her ANC counts and anemia. She’s considering IV iron for Ava. We don’t know what’s causing the neutropenia. If it’s Mitochondrial disorder related, the treatment will be tricky. A bone marrow aspiration will be done the next time her ANC drops below 500. We need to know if the problem is her bone marrow or not.

Ava isn’t feeling great. Her G-tube and muscle biopsy surgery is Wednesday. She’s sleeping way more than she should. She plays for a few minutes then wants held for an hour. 4-6 hour naps everyday combined with smaller “cat naps”. She also sleeps 12+ hours at night.

I’m trying to keep caught up in blogland, but it’s difficult right now. I hope I’m not hurting anyone’s feelings. Everyone is in my thoughts.

vacation

Sunday, July 18th, 2010 by by

We saw GI today, and he’s on board with the other doctors on getting the ball rolling with the G-tube. Ava will get a PEG tube at first, then go to a low profile (AMT) button 12 wks after PEG placement. She’ll stay in-patient for 4 days or so. I’ll let everyone know when I have the date, but it will be within the next month. Her liver enzymes have been elevated and continue to stay that way. This is something concerning. What is causing this? This means more GI visits.

Good news is that her SMA test is negative. And we leave for the Outer Banks on Saturday for a last minute vacation before her next surgery. We need this and are stoked!!

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Feeding appt update

Friday, February 19th, 2010 by by

Ava weighed in at 20 pounds yesterday, so she’s still losing weight. Her growth chart is plunging and everyone is concerned. She isn’t getting taller either. Her entire growth is stunted right now. We only saw ENT and nutrition, but I think they had some great ideas. We are really trying to avoid a g-tube. They think this might be possible because Ava does take bottles. If we can get enough calories through her bottle…. We’re trialing Boost 1.5 and Boost Breeze. They put her on multi-vitamins and iron. Also doing things like adding whipping cream to all her bottles, which is 50 calories per tablespoon. High calorie formula is another thing we’re doing. If she does lose any more weight we’ll have to try an NG tube while she recovers from surgery and go from there. They think this is directly related to whatever metabolic disorder she has. She’ll be watched more closely by them now. She’ll be scoped again to check her airway in late Spring.