Sunday, July 29, 2007

Sleeping Beauty Reprise

Hey, all. We woke to yet another dreaded phone call from the PICU this morning. Kiera was having increased work of breathing last night which had progressed since Friday, incidentally a day after ending her antibiotics for chiracia. She was doing so poorly that the intensivist had to re-sedate her and paralyze her like she had been last week. I feel bad for Jer since Sunday is his day off from work to hold her, and he had been looking forward to dancing with her today. Anyway, cultures have been run; however, they suspect it is her lung infection out of control, and they started two broad spectrum antibiotics and her steroids again. She has the worst secretions from her lungs that I have seen so far, very thick, and is having a hard time keeping her O2 SAT's up to acceptable levels without frequent suctioning. They have also increased the frequency of her nebulizer treatments.

Sorry about all the technical details. These are the kinds of things I talk about every day, but probably seem a bit overwhelming to observers. It helps me to know what's being done on days like this when things seem helpless. One good thing at the moment is that this time the docs left her full feeds running to see how she handles it under sedation instead of putting her on IV fluids so that they can keep giving her nutrition. Hopefully she won't lose wieght like she did last week while paralyzed.Keep on praying!


Thursday, July 26, 2007

Anyone like roller coasters?

Okay, I haven't updated lately. I wanted to wait till the roller coaster ride tamed down a bit before I worried anyone needlessly. Kiera remained sedated for a week. We successfully woke her from her paralytic and sedatives on Thursday 7/19 after having tried Sunday and Monday to no avail. We had a scare on Tuesday the 17th thinking we may need a risky surgery out of state that turned out to be a false alarm. Soooo... we are back to the diagnosis from my last entry that Kiera is very sick and will sometimes have bad days.

We held a care conference for her on Thursday. She has started getting antibiotics for a chiracia(sp?) infection in her lungs, a short term steroid treatment, and Raglan for suspected reflux that might be causing her to aspirate and cause her spells. So far she is recovering well. She is still weak from the week of paralytics and has lost weight and coordination. She is smiling though and hasn't had any spells. Kiera likes to dance with me while I sing to her. We danced today to "Under the Sea" from Little Mermaid and probably jiggled Kiera more than one should jiggle a sick baby. :) She had a ball! (with no projectile vomiting)

So arises the big question: when is Kiera coming home?

Her homecoming is on HOLD. We know she will be celebrating her first birthday on Sunday August 12th in the hospital. We are glad to be able to celebrate her birthday at all, and will have just as good a time in the hospital as we would at home. We will try to keep her party "small" for family, a few friends, and, of course, the NICU and PICU staff. If you would like to join us, call me, and I will give you the details. I am unsure of the time at the moment. It will probably be in the afternoon, say 3 or 4PM ish. There will be plenty of cupcakes ! (and mylar balloons...Kiera loves them!) If Kiera is on the home vent that day, we may be able to take her and the party out to Rachel's courtyard. We'll have to play it by ear, as we do every day.

She will come home when she's ready, and she will probably go back. Such is life.


Friday, July 13, 2007

Good Days, Bad Days Reprise

Today we had a tough reminder that Kiera is still a very sick little girl. She had been having increased spells of bradychardia and desaturation this last week, and it all culminated in a pretty severe day today. She had to be put back on the hospital vent and heavily sedated for the next few days on fentanyl, ativan, and a paralytic. Needless to say, her field trip home was postponed. We do not yet know what this says for our hopeful discharge date of Aug. 7, and the doctors really have no explanation for these spells. Basically, she is CHRONICALLY SICK which means that while she has good days and may seem very well for a while, we need to remember that her good days are as common as her bad days. Sometimes she gets very sick, for no other reason than that she has very bad lungs. The only thing that will cure this is TIME and GROWTH. TIME means YEARS, not weeks or months. We're trying to stay positive and hopeful that she will still be home soon. She turned 11 months old yesterday.

Wednesday, July 11, 2007

Field Trip our house!

Here's something new: Kiera, along with her nurse and respiratory tech, will be going on a field trip to our house this Friday! It's really a dry run under supervision so we can see what taking her to the doctor appointments will entail. We have to pack her up in the car with all her accoutrements (vent, feeding pump, O2 tanks, emergency meds, bag, probably an extra trach and trach care supplies, etc...oh yeah, and the baby) and then drive to our house and back. We may or may not get to take her IN the house depending on the attitude of her RT and how well she is doing through the whole ordeal. They're mostly just teasing us. Of course, we know something they don't know: Our house is at an elevated position and can be easily defended from SWAT teams and the like should we decide to take her inside and lock the doors. :) I have the boiling tar waiting.

Kiera is also improving her developmental skills this week. She has been touching her calves...maybe a precursor to discovering her feet. She is sitting better in her Bumbo chair. Dr. Crow started feeding her just 2 hours of her continuous feeds through her G-tube (stomach) instead of her J-tube (small intestine). So far no problems.

She has had a few challenges this week including an infected Central Line in her leg which had to be taken out Saturday, 6 attempts of sticking before getting a good vein for a peripheral IV for her antibiotics, and her regular episodes of bradychardia while pooping or passing gas. These episodes are manageable when caught early if I bump her oxygen intake. Otherwise she sometimes gets bagged to help her regain control. She generally does this at least twice a day.

Let's see how the next few days go.


Sunday, July 1, 2007

All Smiles!

Kiera has gotten over her pneumonia and stomach flu and is on the LTV (home vent) yet again. She is doing great so far! She's been on it since Friday! We took her outside again today and took her to visit the fish tank. Plus, she just loves laughing with us and playing peek-a-boo! Check out the video we took of her laughing with the link at the top right. We can't wait till we can HEAR her after her trach is out in a few years. We had hoped that this would be the month she would come home, but it looks like we will have to settle for August 7th, just in time to celebrate her first birthday at home. We're getting close!