GI Update & Upcoming Events

Mila's GI appointment went well, although it did NOT start off that way. The doctor came in, sat down, and said " So, Mila needs a gtube. " I thought Alex's head would pop off!!! He was just stunned, I think, to hear it put so bluntly. But the sad truth is that she does, in fact, need a more permanent method of nutrition. The NG tube does interfere with her eating, it likely interferes with her sleep, and it is horrible on both Alex and I to have to constantly re-insert it.

Of note, Mila will NOT be getting a direct MicKey placement, as shown here. Because Mila's liver is still enlarged ( this is caused by the heart failure, and will get better on its own ), there is a chance that the liver could be " nicked " during surgery in a direct, laproscopic placement. A camera is inserted down the esophegus, the stomach inflated with air, and then an incision made and the button inserted. The doctor does NOT think this is appropriate for Mila because of the hepatomegaly. ( Don't I sound professional? )

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Instead, Mila will have two incisions made - one is likely to go directly through the belly button. The surgeon can then have a looky around to make sure that the everything is out of the way, and will insert a PEG tube ( picture below ). When the PEG insertion site ( called a stoma ) has healed, Mila will be switched to a Mic Key as shown above. This carries a much slighter risk of complications, can be left in for up to 3 months without changing, and requires only a bit of daily cleaning. No tape. No holding her down. The PEG is a longer tube, so it will initially be secured to her shirt or diaper so that it cannot be pulled, and it will likely have some stitches.

This may sound drastic, but in the long run, this is what Mila needs. Before that though, the doctor will be running two tests - a gastric emptying scan ( how fast the food leaves the stomach ) and a small bowel follow through. Both tests take a few hours. Also being run in the near future is a coronary angiogram to check the function of the repair in her heart, as it cannot be seen on ultrasound.

Today's feeding clinic went really well! Switching M to overnight feeds has REALLY taken the pressure off ( literally ) and Mila is showing interest in both the bottle and real food! HOORAY for Mila!!!

Mila's Statistics :

Weight : 19 lbs 11 oz ( 8.9 kilos ) - 10% Weight for Age

Length : 29.5 inches ( almost 75 centimeters ) -20% Height for Age

Head Circum : 17.7 inches ( 45.1 centimeters ) - 30% HC for Age

Weight for Length : 25 %

UpComing Appointments:

5/1 - Pediatrican for Both Kids ( Ear & Weight check for Mila, 4 y.o checkup for Robby ); Bloodwork for Mila ( CBC, Kidney Function, Liver function, Blood Clotting Tests ), also going to CALGARY!!!

5/5 - Small bowel follow through - to check for loops, damaged areas, psuedo or real obstructions, low motility, gastroparesis, and other motility issues.

Also this week : HHC Nurse ( Weekly Weigh In ) and the Coronary Angiogram ( yet to be scheduled )

5/16 - Gastric Emptying Scan - to check for delayed gastric emptying ( can cause vomiting, slow digestion, feeling full after just a small amount, or feeling full for a long time. )

5/21 Followup GI - to discuss PEG placement

5/26 Feeding Clinic - Weight, Height, Head Circum, with a nurse, dietician, SLP, and a social worker.