More G-Tube Issues...

Christmas night Charly hardly slept a wink. She kept bearing down and screaming...and because of the last time she did this - we immediately started suspecting her g-tube. Yep, we were right. Her G-tube started to pool her skin around the tube (kind of like a donut). The tissue became very bloody, red, and oosie. We called pediatric surgery (as we have been instructed), and were told to find some zinc oxide, or some silver nitrate. Well, thank you very much RESIDENT...but zinc oxide is just diaper cream...and silver nitrate is some serious stuff that you need a prescription for! Yep, so John drove to every single open pharmacy in Salt Lake Valley...trying to find silver nitrate. He had some pretty seriously funny looks from the pharmacists. Needless to say, we didn't have a lot of help from the "resident" and we will be submitting our complaint to Dr. Meyers at our next appointment.

Charly's G-tube is connected to a mickey extension piece that is then connected to her continuous feeding tube. See the equipment in the background of the picture with Charly and Jaxon? The blue box is her Joey feeding pump (which is running 24/7). With her g-tube Charly becomes much higher maintenance than a regular preemie because we are constantly having to flush her g-tube extension (to keep it from clogging), and burping it (pulling air out, or letting her stomach contents empty into a syringe...that makes a burp sound). Ideally, she would only need to use her g-tube every three hours (about the same amount of time for a feeding that a regular baby eats from a bottle) for about 30 minutes, but because of all of her complications, and now the "granulation tissue" we have not been able to condense her feedings. This is a pain in the rear-end because whenever she is moved (changing her diaper, into her swing, into her bassinet...etc, etc, etc) I suffer from a paranoia that I will accidentally trip on her feeding tube and pull out her g-tube.

In the same picture above...the white box under the feeding pump...is Charly's heart monitor. She has a sat probe attached to her foot (which is moved from one foot to the other each time we change her diaper to avoid electric burns) that measures her heart rate, and her oxygen saturation. She is still on 1/8 liter of oxygen, and at night sometimes needs to go up to 1/4 of a liter. Her oxygen requirement has actually gone up since she was released from the hospital. We aren't exactly sure why. It could be the inversion (welcome to Utah), it could be that our home heating system is stirring up dust in the air, or for another unknown reason. We know that for now...she has been relatively healthy and gaining weight at each of her Dr. appointments.

We have weekly appointments with her pediatrician, with pediatric surgery (for g-tube), with physical therapy (to help her with her Osteopenia "brittle bone disease", and to help her feedings), and we have monthly visits with neurosurgery and cardiology...sounds like fun doesn't it. At least we don't have to see Ophtamology anymore...Charly was cleared from having ROP (retinopathy of prematurity, a preemie condition that causes blindness). Charly is SUPER high maintenance, but we LOVE her and will do EVERYTHING it takes to help her (time, money, etc, etc, etc..).

A couple of times a day we need to clean Charly's g-tube site. She does not like it at all! Of course the bloody tissue around her g-tube is causing her discomfort, and we are taking every effort to sooth her and care for her as best as we can.

Here is a closer picture of her g-tube, and the extension. The gause pad was placed to help protect her skin, and keep the tissue from oosing all over her g-tube and onto her clothing.

She is pretty cute though...even with all the high maintenance. It honestly takes two adults to care for her, and someone to watch her 24/7. John and I are doing pretty good. We are now trading off taking care of her and are managing OK. We are tired, and are still working out all of the adjustments, appointments, but we feel very lucky. As an added challenge...I had to return to work this week. It's nice because I love my job, but difficult because of the responsibility I feel to Charly and my family. Unfortunately, previous financial decisions, and purchasing a home at the height of the real estate debacle...will require that I work...so...hi ho, hi ho...it's off to work I go.

We meet with pediatric surgery this week about the g-tube...so keep your fingers crossed we don't have any more issues!