Wow! I missed March!

Sorry guys. This has been the most crazy time in our lives. After a year and a half of trying to launch our restaurant and having given it everything we had to give, we had to call it quits on March 15th and chalk it all up to bad timing. So, now we are in transition. Jer is job hunting for the first time in 16 years. I'm trying to stay sane teaching middle school and finish out the school year. Hopefully, Zane will be graduating high school in the spring. Mitch...we love Mitch. :) And Kiera is on her wellness roller coaster. She spent the last week pretty sick and finally seemed to turn a corner on Sunday, so hopefully the virus has passed, and without a hospital trip. Although, she has been on nebulizers every 3 hours 24/7, and I am pooped and in desperate need of night nursing relief and SLEEP. I was up at 3am and 5:45 having only gone to bed at 12:45 in the first place. There is not enough coffee to make me function today. We aren't, yet, back to her lower vent settings to try CPAP again, which is disappointing. But hopefully, now that it is getting warmer we will get past cold season and start getting closer to getting off the stupid ventilator. It's getting to the point where she weighs as much as the vent, and the trip up and down the stairs is tiring.

On the fun side, we added a new rescued silver standard poodle to our backyard brood. He was a mess, but after the groomer trip yesterday, he has cleaned up quite nicely. I am trying to change his name to "Pascal." He is 11 months old. Hopefully the name, "Charles," hasn't stuck too much yet. We'll see. I just can't call him Charles, and Pascal fits with my French mathematician theme. Descartes has gotten very good at controlling himself around Kiera. He purposely walks around the ventilator rather than between Kiera and the ventilator and, thus, over her circuit. He also seems very conscious of her needs when she starts having problems or the ventilator alarms. It's quite cool. Both dogs are really enjoying having eachother to play with.

Delayed Update...:)

I apologize again for any lag in updating. Life has been crazy as usual. My home nursing has had a few changes including some new nurses, some night coverage, and some uncovered days where Jer has to take a turn. Kiera came home Super Bowl Sunday, and is back to wearing us all out. We have a two week follow up with pulmo today and will change Kiera's new longer trach tube in his office since I am a little nervous about how changing this trach will differ from the last, if at all. We also see GI guy, so we'll get it all done at once. I took off from school for these appointments, although, frankly, after the day I had yesterday, I wouldn't have minded taking off without the excuse. I hope pulmo will make a few vent changes today and get us back on track for CPAP trials. Kiera has been making a lot of vocal sounds lately (mostly "Ahhhh" s). It's been sweet to hear.

Gotta go for now and start the packing process for the dr's office field trip. It will probably take an hour to an hour and a half to get me ready and get Kiera ready and all her supplies packed.

Kiera is chewing her way out of the hospital!

Well, we are officially getting discharged tomorrow. Yesterday, Kiera chewed through 3 suction ballards, her leads cable, the black lead, and her SAT monitor cable. She left the temp probe alone because she went through one of those on Thursday. She's also biting her nails since this last admission, incidentally. Can we say I have a stressed out little 3 year old who is done being sick?

So, I just finished cleaning the carpet in her play room (living room) where all the g-tube and feeding pump mishaps have routinely fed my carpeting. I cleaned it during her last admission, as well. It's actually a very convenient time since hospitalizations are the only block of time I have to enable the carpet to dry for 24 hours.

I have some new nurses starting this week since I lost one due to the hospitalization interferring with her paycheck, so I am excited to train new people. Plus, some of my great nurses who have been out with injuries the last few months, and well now and planning to start working for me again, so I will have some night coverage again. Kiera is also getting a new therapist this week who likes to use music and dance in her physical therapy, so I think she will have fun with that.

Other than that, it is a usual overbooked week. Restaurant business to run, Grades due, Kiera care, Mary Kay meeting, house to clean that has fallen apart, high schoolers to monitor, TAXES! Can't wait!

Bronchoscopy and Longer Trach Tube

Well, we had a lovely little look at Kiera's airway today and change her trach from her current 46 mm long one to her previous 60mm long trach (incidentally the trach she had before our Houston trip in 2007.) I have been a little twitchy about this change (much like Kiera's airway), but the tracheal collapse was quite clear on the bronch so the longer trach will help stint it open so to speak. It also bypasses Kiera's infamous* pig bronchus which may help in ventilation. I am not sure what this means for long term. We may get to finally go back to our cpap trials, although this may indicate a need for the trach longer term than just during ventilation. As always, we will wait and see. Kiera did seem much more comfortable tonight than she has been in a week and since we really haven't been off steroids for any significant amount of time since Thanksgiving, maybe we can finally accomplish that, too.

* That's "IN famous" for lovers of the movie "Three Amigos."

Sorry I haven't posted lately...and that hospitalization is the impetus.

Hey loyal blog followers. I apologize for the slacking in my posting lately. The holidays were so hectic combined with getting the first semester of teaching completed and grades posted. I didn't even feel like my 2 weeks off was much of a break when I was finished. I had probably the least amount of home nursing coverage over Christmas break than I have had in 2 years of being home with Kiera and very few nights, so I was exhausted by the time I had to go back to school. Then a very good friend lost her 29 yr old daughter around the 8th, and I went to be with her for the funeral. That was directly followed by me catching a nasty virus from the wee beasties I teach HmPV which is comparable to RSV. That was two weeks ago. I was sick for a week before giving it to Kiera and Jer, and Kiera is now in the PICU once again on the big ventilator. We admitted her last Saturday. I hope we can get her back up to snuff this week and get her home, though she is still on continuous albuterol nebs and steroids every 8hrs.

She is also very grumpy ('roid rage :) She really has a hard time being in the hospital these days, and it is so hard to leave her alone and miserable. Plus, since Jer has been sick and I am still coughing 2 weeks later, it is a little awkward visiting and trying not to get others sick. Getting a sub for my students is a hopeless task and really more work than just going to work, so I teach every day and go to the hospital at 3:30. Last night I was there till close to midnight. The night before I came home earlier around 7, but had to spend my evening till after midnight tutoring the 16yr old and getting him caught up on missing math homework so he would be ready for a test. I definitely feel pulled in ALL directions lately. I still need to get some office work done at the restaurant, but can't stand leaving Kiera alone at the hospital to go get it done.

Kiera is supposed to get a bronchoscopy once she is off continuous nebs. I think if I were to estimate, she may not come home till later in the week at best. I also lost my w-f nurse because she couldn't take the hit on her paycheck from Kiera's hospitalization so she took another patient. So in the midst of all of this I am also trying to find another nurse to cover those shifts so that Jer and I can get to work. The fun never ends. :)

Sick at Thanksgiving.


Creating works of art one week later.She's a tough cookie.
Kiera is becoming aware of the pictures on the page and trying to color inside the lines. Very impressive. She will spend an hour at a time at the table coloring without interruption or direction.

A teensy weensy step in the feeding drama...

So I have had one of those "safe feeders" in my cabinet of failed attempts to get Kiera to eat which I haven't messed with in over a year, I suppose. Kiera has become quite adept at licking cheetos and crackers and will stick her fingers in my drink and lick them, so I thought we might revisit the safe feeder. For those who are unfamiliar this looks like a pacifier handle with a little bet basket to put food in that the child sucks on to strain the food into their mouth. I filled it with some of my very sweet mashed sweet potatoes from Thanksgiving, and she actually spent about 10 minutes licking it and mashing it on her face. She got a few good tastes out of it and now has a sweet potato covered face. Very cute, and it looks like I might be able to add this to her "feeding" repertoire such as it is.