Mother's Day at Home

I was wracking my brain to remember what we did last year for Mother's Day, and for the life of me, I can't remember. If I were to guess...I would say that I worked at the restaurant and then went to the hospital to see Kiera. I didn't even blog about it. Hmm. The only thing I DO remember is that my stepsons called me in the morning to wish me a happy Mother's Day, which, for me, made my day.

This year was really nice because the boys and Jer made me breakfast Saturday (today) morning while I had a massage in my front room, and they cleaned my kitchen afterwords! I usually don't get the boys on Mother's Day, so this was the closest I've come to having a little Mother's Day celebration with all the "kids" I "mother" in the same room! And...since Jer has to work tomorrow, this is a great day for us to do it. Kiera sat in her high chair with us and actually grabbed for her food bowl from the table. I don't believe any food actually got past her lips, but she did take the spoon with food on it and put it on her face and lips. It was kind of like eating, so we clapped for her and praised her efforts. She does like applause. She was, of course, a mess and had a bath and trach care shortly thereafter.

I also got to interview a nurse this afternoon who will be able to work 7am-3pm M-F after the 19th! Yeah! I hope she catches on to Kiera's needs quickly. It will be a while before I feel comfortable leaving her alone, but at least I'll get stuff done around the house and can schedule Mary Kay appointments. I also have a nurse to interview Tuesday who I think is available nights. If I have regular people scheduled then I will be able to use my other nurses for DATE nights, field trips to the zoo, appointments, or special occasions! What a relief. The night of nursing we had Wednesday where we got to sleep a whole night without alarms was SOOO NICE! I could get used to that, especially after last night where the SAT monitor beeped for about an hour between 3-4 am because Kiera was REALLY fast asleep and her heart rate kept dipping below 60 (which is still fine) and setting off the low rate monitor. I finally made some noise and touched her to just "wake" her enough to raise her heartrate a little to make it stop. I actually don't know how to change the alarm settings, but will make sure to find out! :)

Kiera seems much better since her 3 days of xopenex, and she'll finish her steroids tomorrow. We just went back to a 6 hour neb schedule last night, and she's doing great! She's, so far, doing okay keeping her eye patch on too.

Finally, Kiera and I watched "Carousel" both for the first time today, and what the heck!? That is one Rodgers and Hammerstein meander into bizarre! The main message seems to be telling girls that sometimes a man can "hit you, and it doesn't hurt at all." OMG! It's like battered woman syndrome made into a musical! We won't ever watch that again.

Love,
Therese

Eye doctor appointment today....

We spent the early morning at the pediatric opthalmologist today. That was an experience. We had put it off till now to try to reduce her risk of getting sick, but we needed to follow up on her extratropic gaze (lazy eye) and her ROP of prematurity which she does not have. Yeah! Dr. Goldblum, I have to say, is impressive. Kiera was tired because we woke her up much earlier than usual (7am), plus she was up from 4:30 - 5:30 this morning, and cranky because she's going to be 2 soon enough, and he was messing with her; and he still managed a successful and thorough exam. I think it may have been one of the more impressive things I've ever seen. :) I have been to many eye appointments in my time, but this was an art. He said her retina and optic nerve looked fine. She is slightly nearsighted and has a stigmatism, but it won' be corrected just yet. We will try patching her good eye 2 hours a day to bring her extratropic gaze in and follow up in 3 months. These patches seem like they might work better than what we tried in Houston which she ripped off right away. I'll start tomorrow during her nap or tonight is she falls asleep for a late afternoon nap. The idea is to patch her while she's sleeping so that it's there when she wakes up and MIGHT go unnoticed.

I keep catching her pushing up to a crawl position in her sleep when she gets restless. She must be better at it then because she's not thinking about it. Hmm.

Hopefully, she'll be feeling much better soon and be less cranky and high maintenance.

Therese

Kiera's day out...at the hospital...

Well, we took Kiera to see the pulmonologist today to see what we could do to help her feel better. We ended up tagging on the G-tube surgeons and the cardiologist for an echo cardiogram. So it was buy one, get two free? Nope, pretty sure they'll all bill. :) Anyway, it was a long but very productive day, and for Kiera being sick since Saturday, she certainly showed well. She was having a bit of trouble still and really needing her nebs. We even "borrowed" his nebulizer machine for her noon and 4pm nebs. Otherwise she seems significantly better than she was yesterday when I had to bag her 5 different times. We thought we were just going for one appointment, though, and even though we had 2 1/2 O2 tanks with us, we got a little nervous between our appointment ending at 12:30 and our impromtu for an echo at 2PM due to Kiera's increased O2 needs, so Jer ran home and refilled our portable tank. We also hadn't planned to be gone so long, so we missed a feeding since we usually don't take the feeding pump et al with us.

Kiera seems to be doing well with the plethora of changes. She's on xopenex for 3 days and a steroid course for 5 days. We dropped albuterol and atrovent during the xopenex but are continuing the mucomyst every other neb and restarted the Amakacin (antibiotic) neb for 28 days even though we've only been off about 2 weeks. Her g-tube granuloma probably needs surgical removal, but is not critical enought to warrent surgery, so will wait (and look gross and stain all her clothes) until she has a more pressing need for surgery. It's too bad, we could've done it in March during her bronch if it had been this bad and we'd known.

The worst part of our long day was the overlap of Kiera's nap time again. I got her to sleep in my arms in Glasser's office AND successfully transferred her sleeping to the stroller, but she woke up about 30 minutes later in the cafeteria. It was noisier than I expected.

We seemed to make a lot of progress today. Her echo was good; although, and interesting fact is that her heart is located lower in her chest than it should be, probably due to pressures breathing, but it doesn't seem to affect her heart function. Her right side is back to normal and there are no measurable signs of her pulmonary hypertension, so we are decreasing her viagra dose.

Since getting home, she napped an hour or so, and now she's playing quite happily with her doll house. She seems much happier...still not back to normal...but improving.

Thanks for the continued positive thoughts and prayers.

On a side note: dred lock boy on Idol better be voted off tomorrow. David Cook wasn't the best, but he sang Duran Duran, so I'm sold. :) I have to admit, I enojoyed David Archuleta, but my heart belongs to Cook. A little disturbed that he was born the year "Hungry Like the Wolf" was written though....
Therese

Kiera still sick...rough night

False alarm. I thought Kiera was getting better Saturday, but she's not. We spent most the day Sunday and today giving nebulizers every 2 or 3 hours, bagged her twice last night (once at 4am and one time later but my sleep deprived brain can't recall when that was), bagged her once at about 11am, and she's on 5liters of O2 at present and we bumped her rate. I'm waiting to hear back from the pulmonologist. If Murphy's Law is anything like it usually is, maybe we'll get readmitted for the one day that I actually have nursing scheduled this week (Wednesday). Pray for Kiera to get well. It's probably just a bug, but it's making her and her parents miserable.

Therese

Kiera Sick Today

This will be quick: Kiera was a little sick today. It took most of the day to get her back up to snuff and was a little stressful for Jer and I, but we handled it, and she seems better now. We were at 6 liters O2, suctioning frequently, we bumped her vent rate from 20 to 24, her heart rate was in the 180's (normal for her is about 140's awake), and I ran extra nebs and Mucomyst every 3 hours. With none of this bringing her comfort, we ended up changing her trach and changing out her vent circuits. After that, she finally fell asleep and woke up with her heart rate back down and we got her O2 down to 4 liters and rate down to 22. We'll try getting back to 3 liters at rate of 20 tomorrow if she seems okay.

Here's hoping the night goes well.

Therese

On a Lighter Note...Kiera understands Toddler Property Laws

I laughed today because I had 2 of Kiera's dolls. I handed her one and held one myself, so she immediately wanted the one I was holding. I gave it to her and picked up the other, to which she responded by taking the one from my hand again. It cracked me up. Toddler Property Law: What's yours is MINE. If it was MINE and I give it to you, it's still MINE. For a kid who doesn't talk, she certainly seems to communicate well. :) We've been working on some sign language for a while now. She understands perfectly well the signs for mommy and daddy, but she insists on grabbing my hand to put on her chin instead of her own. I've tried using her hand on her face, and she smiles because she knows the sign, but now her response is to put my hand on my face for me. It's adorable. I'm not quite sure how we are going to progress to her using her own hand independently.

She went to her first birthday party for a friend last weekend. She seemed to have fun; although, it was during her nap time and really stretched her tolerance of me running her social life.

The most fun thing this week was we got to take her to mass. I cried when mass started because it just hit me that this was such a delayed chance to feel normal. Our church had a special mass for the handicapped and their families and care givers. It was much lower attended, like 30-40 people, so I was less worried about exposure to bugs. I also felt more comfortable about her vent alarms and such going off during mass since we were with people familiar to the irregular. There was a pot luck afterwards, so we took her booster chair to include her at the table. She just played with utensils (Kiera is still very wary of any FOOD and won't eat), but she seemed to enjoy being part of everything. The funniest thing was she would cry EVERY time the congregation would sing. It was like clockwork. I don't know if the volume was too much for her or what? Maybe watching American Idol has made her a critic. :)

I still need to schedule her hearing screening but was waiting till RSV and flu season were over. I guess they may be able to give some insight into what's up with her. She'll have to be sedated for the screening though...she has to be pinned down just to look in her ears. I know she can hear, but maybe she still has some sensory issues. I also need to schedule her primary pediatrician's appointment and follow up on her vision and extratropic gaze. I was avoiding those for the same reason.

Therese

Chasing the elusive 6 hours of sleep...

Well, we've been on a 6 hour neb schedule since the 23rd, but no such luck in getting any REM sleep. Nursing has also been pretty scarce this week with maybe 8-16 hours a week covered the last two weeks. On top of that, I spent the last week and a half on vicodine for an infected root canal that had to be pulled yesterday. I am beyond tired. Last night I went to sleep at 12:20AM after her midnight nebulizers. I got up for false disconnect signals at 12:45 and had to rearrange tubing to make it stop. I was up at 1:45AM to suction Kiera, 3:00AM for a false apnea alarm because she was tossing and squirmed out of the belt, 3:45AM to sucton her again, and 4:15AM to give Kiera Tylenol because she was so restless I thought it might be growing pains. I went ahead and added formula to her feeding pump at this time to save another awakening by the feeding pump at 5. Tylenol seemed to help; although, now that I think about it she may have been unable to sleep with worry over who would be kicked off American Idol today. (She's rooting for David Cook). After the Tylenol I slept till the alarm went off at 6:00AM for her nebs and meds. Thankfully, Jerry got up and did 6 AM meds and nebs, so I went back to sleep. Of course, Kiera sleeps through most of this most of the time, so I truly enjoy the questions regarding whether she is "sleeping through the night" since she's been sleeping through the night since she was a month old.

Unfortunately, this is not an unusual sleep schedule for me. The last few nights were about the same. If one more mother of a term baby tells me, "It's just like nursing," I'll smack her. (At least one can sleep while nursing and while the baby is sleeping. If a nursing mother lets her baby cry 5 minutes before waking up, the baby is unlikely to die in the interim! And, of course, feedings every 2 hours don't continue till a baby is almost 2 years old. Oh...and let's not forget how much I enjoy the reminder that I didn't get to nurse, despite pumping religiously for 10 months!) Ahh...it felt good to get that out. :)

At least when I have morning nursing, I have them arrive at 6:00AM, and I go to our room to sleep sans alarms. (We sleep in a queen bed in Kiera's room, not nearly as comfortable as the bed in ours btw.) So I did get 5 hours Monday morning after the nurse arrived. That should last me till next Wednesday when my next nurse comes, right? Another PICU nurse has voiced interest in doing some homecare on the side, so hopefully she will come work for me too. My poor nurses are already working full time in PICU and picking up extra shifts for me. There just aren't any available home care nurses qualified to take care of Kiera. If there were, Kiera is qualified to have 100 hours a week of coverage. If I lived in another state, this would probably be possible. The grass is truly greener sometimes.

Thanks for tolerating my rant. Maybe it's the drugs, the tooth pain, severe sleep deprivation, or 21 months of this with at least another year or two to go that's making me "a little cranky." It can't all be sunshine and roses. I'm sure I'll be back to cheery next time. Until then....

Therese