Wednesday, January 30, 2008

Getting Better...Slowly

Kiera has pseudemonas (sp?) and has been on increased ventilator support. She is improving and is down to nebulizers every 3 hours instead of every 2, but she definitely needs her neb ON TIME. Her secretions are a better color now, too. Her rate on her ventilator was increased to 40 yesterday, and dropped to 35 today. Maybe tomorrow they will try to drop it to 30. They want her on 30 on the hospital vent before going onto an LTV. Remember she was on 25 on the LTV before she started getting sick. She's on 4 litres of O2 right now and was on 2 before getting sick. So it looks like our soonest ETA to get her home might be Saturday, but sometime next week is probably more likely.

Today she sat up for quite a while with her Boppy pillow for support and read her animal book from Uncle Matt and Aunt Erin. She LOVES that book. She and I played peek-a-boo for a bit and read books.

Thanks for your continued prayed for Kiera. We had her home 2 1/2 weeks. Maybe next time we can make it a month. :)


Sunday, January 27, 2008

Kiera's One Year Anniversary of her Tracheostomy...Celebrated back in the PICU

Yesterday was yet another busy day. Jer and the boys went to Utah for his grandmother's funeral, so my sister Katherine came over to help with Kiera. I should have warned her that one night with me could land her in the hospital.

Anyway, the 26th was Kiera's one year anniversary of her tracheostomy surgery. Wow. She's been getting sick with some fevers and increased secretions since Thursday, and last night around 10:30PM she got sick enough despite our interventions to press the limits of our home health systems. Kat was a fantastic assistant and even helped me with a trach change without even having seen one before. I am so grateful she was with me to assist. I had to bag Kiera off and on for about 2 hours, and we had her Oxygen bumped to the maximum our home tanks can pull. She was fine while bagging, but couldn't keep her SAT's up once back on the vent. After some consulting with her pulmonologist over the phone, and some attempts at nebulizer treatments, I ended up deciding it was time to call paramedics and go to the PICU around 1:00 AM.

She is doing better now in the hospital and on the hospital vent support. We will try her on the home vent tomorrow and see how it goes, and maybe get her home Tuesday or Wednesday depending on the results from her cultures and nasal swab. Of course, we are dissappointed she is back in the hospital, but we have been prepared for the fact that WHEN Kiera is sick, the hospital is the best place for her. Common colds for other babies are much trickier for her to get through without the big guns (840 vent and higher O2) that the hospital can provide. It was funny because, the 8 EMT's in my houses joked that I was the most experienced on hand and that they should all take cues from me. I felt very in control during the whole scenario. I mostly needed them for their Oxygen and the ambulance. It was mostly hard to give in and decide to take her to the hospital knowing how many kids with RSV are there right now and not wanting to risk getting her more sick.

The bright side is, my hubby is back today, and we have a high priced sitter and will get some sleep without alarms and medical equipment white noise tonight. There's always a silver lining.


Monday, January 21, 2008

Two Weeks Home!

Hello, Kiera Groupies! I have had many comments on how I have not updated the blog recently, so I am taking a moment to live up to the blogger committment. :) I appreciate that some many of you keep up with her progress and want to honor my end of the bargain. We have had a very busy two weeks at home, and finding time to blog has been difficult since that time is better spent sleeping.

It has felt so peaceful just to finally have her in our home that the great amount of work she entails still seems less stressful than 514 consecutive trips to the hospital. It was nice to just see her sitting on OUR COUCH! WOW! :) We are enjoying the simple pleasures. I have intermittent nursing at the moment, an average of about 3 days a week with nursing, although this week I'm only covered Tuesday afternoon and Thursday morning and next week I have 4 days covered. The nursing helps since I can't take Kiera in a car unless I have 1 other trained care giver with me to sit in the back with Kiera in case she disconnects from her vent, needs suctioning or bagging, or whatever other crises might arise. When nurses are here I can run to the bank, grocery store, take a nap, shower, go to the restroom, or whatnot. It's tricky to do simple things sometimes because Murphy's Law is correct, and the minute I leave the room, even if Kiera is sleeping, you know she will roll or kick and accidentally disconnect her ventilator. Last Thursday I had a 2 hour shopping spree to Other Mothers and Smith's, and it was heaven! Daddy watched her Saturday, and I had the most fun browsing for 2 hours at Lowe's, Target, and Babies R Us.

Kiera gets meds, food, or breathing treatments every 3 hours, and just when you are finished with one feeding it seems the next one is starting. Her feedings are spread over two hours and start every 3 so she is usually beginning a feed, in the middle of one, or finishing it at any given time. She has significantly fewer medications now than before, but there are still quite a few prescriptions to keep track of. She is rolling more than when she was in the hospital and is adjusting remarkably well to being in our home and not the hospital room she has called home for the last 17 months. She seems so calm and happy even though her environment has had a complete makeover. She loves to look around her bedroom every morning when she wakes up, and has a definite routine established. Many hospitalized babies can't sleep when they get home because it's too quiet or too dark, but she seems fine, probably because Jer and I were her constants in the hospital, and maybe those pictures of her home helped.

We have made some headway in the baby food department which took some doing on my part. For the last few weeks she wanted nothing to do with any spoons being put in her mouth no matter what they had on them. I was starting to worry she'd never eat since it seemed like such a set back from the positive steps we were making in Houston. In the last few days I've been able to feed her a few teaspoons of food a day while her cuff is deflated. I had to coax her by holding my Fresca can to her mouth and then giving a straw siphon of Fresca which reminded her of sharing tastes of my Sprite in the hospital. Then I gave her a straw of nectarized cranberry juice followed by some baby food (vegetable chicken is one of her favorites) on the straw. Then we moved to the spoon, and she's done great since! We feed her some tastes once a day while we eat breakfast and follow that with a good bath or she smells like baby food all day. There's nothing like the smell of chicken baby food in your baby's hair. :)

I guess that's all for now. I have a Lasagna to pull from the oven, and a feeding to start. Kiera is playing on the floor with her doll house and stacking cups. She's reaching for them and testing the limits of the length of her ventilator connection. Hmmm...


Saturday, January 12, 2008

Kiera at HOME with her boys...

Yeah, we've made it through 3 nights without calling the paramedics! We are quickly figuring out small adjustments and troubleshooting, and will soon have Kiera's care down to a finely tuned system.

Wednesday, January 9, 2008

Pics of Homecoming Day and Quick Update

Hi again! We have had a lifetime happen in the last 48 hours. Kiera came home Monday at 3:30PM and was home about 12 hours. We had an emergency at 3:30 AM and had to call paramedics and readmit her at Pres. She is actually coming home AGAIN this morning in about an hour and is doing much better. It was VERY SCARY, but we learned quite a bit in a short intense period. We learned some more trouble shooting procedures and have made adjustments to equipment and her room arrangement that will help in the future. I'm glad in a way that the problems we encountered happened the first night while we were both on alert and not complacent. I hope none of you ever have to see your baby look the way Kiera did Tuesday morning while waiting for emergency crews to arrive.

Sunday, January 6, 2008


After 513 consecutive days of hospitalization, Kiera Rose Wright will be coming home tomorrow, Jan 7th, at 2PM! I thought I'd update now as tomorrow will be incredibly busy. Born August 12, 2006 at 1lb 8 oz and 13 inches long, Kiera will be coming home weighing approximately 20 lbs 4 oz and 32 inches long. I will enjoy telling strangers that I just brought my baby home from the hospital, and when they ask how much she weighs, replying, "A little over 20 lbs." You have to enjoy the little things. :)

She will be on a ventilator and requires quite an entorage and equipment, but we took a trial ride in the car today, and she did great! I will upload a pic later tonight. The biggest trick is remembering to watch the baby while trying to load all the equipment. :) She watched out the window the whole ride and seemed a little disconcerted but curious. When we got to our house, we gave her a short tour and let her try out her crib. She took a moment and started rolling to grab the rails. She saw her "fish tank" toy in her bed, and I had shown her pictures of her room these last few weeks, so she soon got the message that this is her room and started bouncing her feet on the mattress.

Jer and I can hardly believe this day has come. It will take a while to get used to being able to see our baby by just walking down the hall or looking up from the bed next to her.

More updates later, from home.