Back to the drawing board...

Kiera is having a pretty good week. We started her nebulized antibiotic and after a brief stint on 4 hour nebs again, we are back to 6. The other night I actually slept from 2am to 6:30 am and woke up feeling like it had been a long time. :) I guess I am delusional from sleep deprivation.

So I got disappointing news tonight that the day nurse I had finally gotten last week for 3 days a week, decided that she feels unqualified to take care of Kiera. I knew she wasn't really qualified, but I hoped she would be trainable. She was very nice but wasn't pediatric or ventilator certified. Anyway, I was just starting to feel like I might have a more regular schedule, and now I'm back to the drawing board.

I know lots of the PICU nurses read this blog...so, if you'd like extra hours...maybe even just 4-8 a week or more as it suits you...let me know or talk to one of Kiera's nurses at the hospital about getting signed up. I am very flexible. :) I can have up to 400 hours of nursing a month, about 100 hours a week, but as it stands I am lucky to get 24 just because of availability of qualified nurses.

New trach changing technique for my readers with trached kids: Kiera is obsessed with watching "Family Guy." I have a love/hate relationship with the show. However, we did her trach change on the floor in front of the TV tonight instead of at the table like usual, and it went surprisingly smooth while she watched Family Guy. She barely noticed us. :)

Side note: I tried Invisible Watermelon Kiwi Kool-Aid tonight. It is a trip to drink since it just looks like water. Tastes good...but it's interesting how much taste is connected with color. Weird.

Therese

Belated Father's Day...First One at Home!

So we celebrated Father's Day yesterday a week (and a year late) with a "redneck pool party." Last week and last year we were still hospitalized. :) What a giant step from Kiera's first time outside EVER on 6/19/07 last year in the play area at the hospital, to her first time in a kiddie pool in our backyard a year later on 6/22/08. I surprised my hubby and stepsons with a "redneck pool" according to hubby. It's just 12 ft wide by 30 in deep, but it was 102 degrees out, on sale, and I was weak! :) Then I set Kiera's kiddie pool up next to it and just filled it a little. She loved it and enjoyed watching the big boys splash in the big pool. Thankfully it wasn't too hot yesterday. The rain Saturday cooled things off a bit, so it was perfect. Excuse Kiera's "trashy" bikini. She currently wears size 2-3T on top, but I bought this 12mos size suit on sale while she was still iddy biddy to fit LAST summer presuming she would have been home. The bottoms still fit, but clearly Kiera is a "brick house" and needs more room on top. :) So she wore it once, we have a picture, and from now on she'll probably just "swim" in bottoms and a t-shirt since all she does is sit, splash, and play ball anyway.

I know...I know... she just had terrible pneumonia last weak, but the antibiotics seemed to really do the trick. There's no sense in wasting wellness time inside. Jer said to mention that swimming in iddy biddy bikinis is not how Kiera caught strep. :)

We also took her out on our upstairs patio for a cook out for the first time. I think she enjoyed the breeze and the view. The nice thing is that with our 50 foot O2 tubing, we could use the house oxygen for both the back yard pool and the upstairs patio so we didn't have to mess with the portable tank or waste O2 in filling it.

Oh...and no suctioning last night between 11pm and 5 am nebulizers! Yeah! Too bad, we didn't go to sleep till 1am. The Nasa 3-part miniseries "When We Left Earth" has really sucked us in. I think Kiera could be an astronaut...she already does well breathing with machines! She just probably can't be the pilot since they have to have perfect eyesight.

Therese

Kiera is Back at Home!!!!

Yippee! We gave Kiera her last dose of I.V. antibiotics, removed her central line, and sprung her from the joint! She was SOOOO excited when she saw all 4 of us come in today and definitely knew what was up when we started packing. This is great timing because we had already planned to celebrate a delayed Father's Day tomorrow with ALL the kids. Now we don't have to do it at the hospital. Daddy zoomed Kiera around in her stroller and she loved the car ride. Poor thing has been bored out of her mind in her hospital bed and was happy to take a nap in her pack 'n play and play on the floor at home this afternoon. We have some significant changes to work with on her meds and ventilator settings, but she seems back to her base line. We met some new friends in the PICU who maybe needed to meet us too, so all in all the 2 weeks of re-hospitalization, though anxiety inducing, gave us a chance to regroup and hopefully served a larger purpose in the grand scheme of things. I have to say that while repeatedly waiting to take a baby home from the hospital has given me a sense of Zen about waiting in line at the post office and grocery stores, it was difficult to stay patient in line at Albertson's this morning while the lady in front of me took probably 10 minutes to write a check and chit chat (while not writing) about her preference for checks over debit cards while my ice cream was melting and all I needed to do was get it home, put groceries away, and load up the car to go spring my baby. :) I guess next time I "chit chat" in line somewhere I'll try to remember that the person behind me might be on the way to the hospital. :)

Therese

Kiera signed "Daddy" for Father's Day!

Kiera is improving now that she has a central line in and 5 days worth of antibiotics. She was zipping through I.V.'s left and right and definitely needed something more effective. Her veins are shot after almost 2 years of needle pokes. We had her up in the walker for about an hour yesterday, and she was finally smiling and playing again. I picked her up a book at a garage sale last week..."Peek-a-moo." The characters have flaps to cover their eyes that you pull down to see their faces. Anyway, the last page is a baby, and Kiera was making herself laugh. She'd pull the flap down and giggle when she saw the baby's face. She kept doing it over and over. You could definitely tell she "gets it."

She's been watching her "Signing Time" videos intently, and we've been trying to get her to sign "mommy" and "daddy" for maybe a year. She has clearly understood the signs, but has wanted to do them by grabbing my hand and putting it on her chin or forehead respectively. So Saturday I noticed her tapping her head, more like the sign for "hat," when I said Daddy. On Father's Day, we went in to the hospital after work, and Jer had been napping on the couch behind Kiera's crib. Kiera and I were "talking," and Jer piped in just after waking up. Kiera clearly looked behind her toward him and patted her head in response to hearing his voice. Then she migrated her thumb toward the middle of her forehead with her pointer finger sticking up! Well, of course, she is a genius. ;)

It looks like we will probably be in the hospital another week to finish up antibiotics and get her back on the LTV, but I still have to confirm a plan with the pulmonologist. She is definitely much improved from Friday. Friday she looked as sick as she'd ever been, and it was a flash back to times we'd rather forget. It was good to see her getting back to "normal."

Therese

Pneumonia Update

Kiera has a pretty bad pneumonia in her right upper lobe of her lungs and is culturing out pseudemonas and possibly strep. After 6 failed attempts at an IV yesterday, they did intramuscular shots of 1 atibiotic for the strep. Then they managed an IV today (YEAH!) and started a dose of antibiotics for the strep and another for the psuedemonas. She had a bedside brochoscopy today and her pulmonologist was able to put some mucomyst down her trachea to focus on bad areas to break up her mucous. She is currently on continuous nebulizers, and after a short bit back on the LTV, is back on the big 840 vent today on much higher support than before...a rate of 40 and 60% O2. They also changed her to pressure controlled ventilation instead of tidal volume controlled. I'd explain...but I'm wiped out.

On the plus side...Kiera was off her feeds today and only getting Pedialyte, so when I got out a juice box, she was so excited she strained to get off her boppy to get my juice. I gave her maybe a dozen tiny sips pipeted through the straw. Then I asked for a popsicle, and she went at it gainbusters...like she's been eating forever. She got orange juice from the popsicle all over her face, trach dressings, and bed. She was pulling it to her mouth. I think she liked being able to control her food. She took SMALL bites off the tip of the popsicle and didn't freak out too much. She let it melt in her mouth and swallowed. I think her face is permanently stained orange now. Maybe I'll have to convert all her food to "on a stick" form. :) She also had a great echo today and is going to stop her Sildenafil (viagra). So does that mean the leftover meds are for us? :) Or should I start spamming all of you?

In that she is on the big vent, high O2, and IV antibiotics, it looks like she'll be in the hospital at least another week making this her longest readmission since her discharge in January. Last night was cute...the male nurse that had her told me that that night was his one year anniversary in the PICU, and Kiera was his very first patient when he was new, so it seemed appropriate that he had her again. He'd been away, and didn't even now she was readmitted till he got his assignment that night. Kiera used to flirt with him before so we say he's her boyfriend. Sure enough, she flashed him a smile when she saw him. I think she likes his red hair. Another funny thing: I was talking to a friend the other day, and I found it funny that my perspective lets me think that ONLY 4 hospitalizations in 6 months is a GOOD thing. What a different world I live in!

Therese

Back In PICU

We admitted Kiera last night. She was very acidotic (high Co2 levels in her blood). She's on the big hospital ventilator right now and on I.V. fluids and a little Pedialyte. We're waiting on stool cultures. We're not really sure what is wrong. It may be just backlash from the virus she seemed to catch on Memorial Day or something else. Her pulmonologist still has to see her today. Her upper right lobe of her lung is very cloudy on her x-ray. I guess the easiest explanation is that she is just "funky." Hopefully this will be a short stay...maybe 4 or 5 days.

Therese