Life in a Jelly Jar

Tuesday, March 22, 2011
Cayleigh Jean & the leaking G-tube

It seems like it's been harder and harder to get my blog time in but I'm definitely going to work on it. With trying to jumpstart my headband business to contribute some kind of (hopefully) income so it's not just my husband, being back and forth between the hospital and the Ronald McDonald house, pumping, (trying to) be the wife my husband deserves and everything else I just feel tired. It's a good tired though. I won't complain - we are so very blessed to be at the Ronald McDonald house. We have a hotel room sized room with our bed and a twin bed that Juliette uses. We have our own bathroom and 2 dressers which is really nice. There's a common area/dining room downstairs where they have tables and chairs that sit just outside the playroom. There are 4 levels of the house - the top I think is just to get to the roof or attic..I haven't been past the 2nd floor where we stay. There is a shuttle that runs Monday through Friday until 9 pm that we can get on 1.5 blocks from the House and drops off just down the block from the hospital. Plus, it's really good that Nic and I get to walk so much (*laughing*) because we have to walk everywhere. It's not that we don't have the van - it's that there is NOWHERE to park out here.. without paying through the teeth anyhow.

Cayleigh was doing pretty good today. When we got up to her she was 'sitting up' in her boppy pillow that we brought from home. She has an IV in her head still even though they inserted the PICU central line in her inside,upper right arm (they put in a Central Line which runs like a vein through a tiny catheter thing and stops just outside her heart). Nic told me tonight that they'd decided to pull it out just a little bit as they felt it wasn't in the right position. To insert this thing they use an ultrasound machine - it's a pretty intense procedure that takes an hour to do. They'd tried it before in her leg and weren't successful, but this last time they were.

The IV in her head makes her look really sick, but (in my opinion) she's not! Besides the fact that it makes me nervous to hold her and they shaved my babies hair - I question why they need to have this IV in her head when they have this deep set one in her arm. It's frustrating. They tell us it's because they don't want to take out a 'good' iv. Well, we'd sure wish they'd just pick one and take something out. She's not a pin cushion after all.

The nurse, Liz, tells us she is just about to change Cayleighs G-tube dressing. It's quite the process. First you have to clean the area- and when she did it I noticed there was some redness around the site. I asked her about this because when the surgeon lady showed us how to change the G-tube she said redness is an indicator of infection. She tells us its fine and that they'll watch it. That its a new wound and will have some redness. Then she uses this adhesive stuff and wipes it all around the area, then she puts on this tan powder stuff and rubs that in - which is to absorb the moisture, then you put on this cut gauze stuff. It looks complicated but I suppose it isn't. She tells us that the OT (occupational therapist) is going to be there at 1030 and since we had only 30 minutes until she came at that point I tell Nic I didn't want to give her a sponge bath until after I held her and the OT lady was done.

I held her awhile and then the OT woman shows up. She's from Ireland and is soft spoken. Cayleigh is really sleepying soundly and relaxed so much so that the OT says she's never seen her so easily stretched. It's partially because this is one of the first times she's worked with her half sleepy and partially (mostly) because she was relaxed on Mommy. she does all of her exercises and explains everything she's doing and how to do it while i'm holding her. I'm secretly happy she didn't ask me to put her down and that I got to hold her. :)

We put Cayleigh back in her crib so that we could give her a sponge bath. She couldn't have a regular bath because of the g-tube so we were going to bathe her in her crib like we'd done before. We had to get it done because, at noon, we had to pick up Juliette from the playroom (its open 10-12 in the mornings). We each take a side of her and begin washing her with warm, soapy gauze. We only got to wash the left side of her head/hair because of the (stupid) IV in her head, which was kind of disappointing. We finish up and Nic notices the gauze we'd just had changed was already leaking. He asks Liz if we can go ahead and change it again and she says yes. I was a bit hesitant and told Nic I wanted her to do it but he wanted to take charge because we'd have to do it later when she's home. I just felt like it is too close to surgery and so I thought it best to let Liz do it - but he did it very well. It freaked me, and him, out when he took the gauze off and there's this chunk of her feeding around the wound. He shows it to Liz and she says it's ok, it can happen, its just from the slight leaking. It seemed hard to get off, but Nic does and then he completes the rest of the steps.

While he's doing this a hospital volunteer is walking Juliete in to the room. She tells us that Juliette wanted to see us. We both know she wanted to see Cayleigh. I help Juliette clean her hands while Nic and Liz button up Cayleigh in her nice, warm, fuzzy, purple and brown Carters jammies and get her situated.

Juliette comes over to the crib and tells Cayleigh her big sister is there. it's very sincere and sweet. She watches Liz and Nic situating Cayleighs wires and whatnot and just stands quietly. She's a champ and Cayleigh is too!

The child life person brought us a makeshift mobile, that doesn't move, but makes music and has some cardboard,plastic covered black and white prints for her to look at. So when we were leaving Nic and Liz worked together to get it hung on the plastic tube extending across Cayleighs crib. I took a few photos but we haven't uploaded recently - so stay tuned!

On a funny note, when we first got there, Nic was changing Cayleighs diaper and, mistakingly, removed the dirty diaper from under her bum before putting the new one down. He went to grab a wipe and she pooped right there, onto the bed. HYSTERICAL. :)

Tomorrow we have to meet with the doctors, genetic doctors, etc at 2:30. Please pray for us during this meeting.
Please pray that Cayleighs G-tube surgery heals and has no infections
Please pray for excellent health and stable stats for her
Please pray for excellent health for Nic, Juliette and I so we can see her daily

Thank you all so much!
Additional prayers for other house babies:
Adrielle (baby boy)
Andrew (3)
Emily (preemie)

Thanks!