Mar 22, 2013

Snow For Easter?

Steve had to go in to work at 5:30am to play test their game. That left me to get Evie off to school. Her bus comes at 6:45. I am NOT a morning person. Today was the first time I've gotten up at 6am in a very long time. Imagine my surprise when it was SNOWING!
Evie and I had a nice little morning, walking to the bus in darkness with the snow falling around us. She caught snowflakes in her mouth and took pictures of us together on her IPod.
It made me a little nervous to leave Ainsley at home by herself, but Evie catches the bus on a 45 mile per hour road, and she is only 12. So I don't like her to be out there by herself. On a positive note I did another trach change yesterday and she was okay, (no turning blue like the week she was sick) so at least I don't feel like if she accidentally decannulated she would DIE. But we NEVER leave her alone. Of course she was asleep...But still. I hope this is a one time occurrence.
Later this is the view from the dining room. Adrian was so excited to see snow when he woke up! He gets up a lot earlier than he needs to so he went out and played in the snow before school.
My house is situated among a lot of trees so it's quite dark inside. Sometimes I can't tell that the sun is shining on a beautiful day. But when it snows it reflects the light into the house and it's so much brighter.  We must have nearly 2 inches. My house is glowing.
We are still doing nebulizer treatments (it was a 14 day script) so I got Ainsley up a little early and she watched a Martha Speaks while she got her treatment and I simultaneously tube fed her breakfast. She kept pointing outside over and over agains. It's times like these that I so wish she could talk.  I think she was excited, but maybe she was perplexed. Maybe she wanted to ask why. Or just to talk about how pretty it is. It makes me sad to think of how many conversations we've missed.
I was out shopping for table linens (I've needed new table linens for every holiday this year and I'm shopping late since Ainsley was sick and Steve was gone, UGH. It's frustrating because nothing is left.) and decorations for Easter yesterday and was chatting with a man in line. He was funny. Boisterous and friendly. Maybe a little crazy. Those people always seem to strike up conversation with me. We chatted about the unusual weather (then rain, then sun, rain again, plus strong winds) and how there was no snow this year while we waited. Of course I had to say how we weren't going to get any snow this year, and jinxed us. Can you believe it snowed the same night?! I'll be happy as long as it's gone before Easter. Can you imagine an egg hunt in the snow? The kids declared that would be SO FUN! I think I foolishly said there is NO WAY that'll happen. I sure hope I don't jinx myself again. What was I thinking saying that out loud?!
I hope you have a good weekend. Adrian has his first 2 baseball games of the season. Steve is expected (notice I'm not going to risk jinxing that one) to be home for pretty much the first weekend since Christmas break.  We will be preparing for Easter. I hope you have a great weekend!

Mar 17, 2013

Happy St. Patty's Day! And stuff.

I hope you all have a nice St. Patty's day. Here is a Cute St. Patty's Day Card that I sent to family and friends (if I had your e-mail address). It's very fun for the kids, so gather them around the computer. It's nice that St. Patty's day fell on a Sunday though I got pinched twice before I got out of bed (waiting for my caffeine to take effect). Note to self: Must wear green pajamas next year, or wake up first. We started out the day with a special breakfast of green eggs, sausage "patty's" and toast before Steve headed to work (yep on a Sunday and holiday). I am so ready for "crunch" to be over. Supposedly tomorrow is the last day. It can't get here soon enough. 

Ainsley's 1st Nebulizer Treatment of Tobridex for Pseudomonas. Why they sent me parts that don't fit I don't know, but we got it to work. I'm undecided about whether it's effective. She's been on antibiotics since Monday and the Lactobacillus Granules (they are kept in the pharmacy refrigerator)  have helped with the diarrhea.
Ainsley's still coughing up a ton of secretions but is getting better each day. After missing more than an entire week of school, I'm hoping that she'll have recovered over the weekend and be able to return to school on Monday. She was supposed to have her IEP last Thursday but she (and I, plus the teacher actually) were too sick and we rescheduled for next Thursday . I need to get better myself. I hate being sick. (Who doesn't really?) I've had a headache for 3 weeks and my nose is so stuffy I can barely breathe. Whatever is going on in my sinuses is affecting my ears and giving me vertigo again (remember that, I'm so glad it eventually went away and trust it will again). I need to do some programming to Ainsley's communication device(for school activities), but I've put it off since we were sick.

She has made a lot of progress with her communicator. It's exciting and I can't wait to have some time to make some videos to show our setup for all our friends who also use them. On occasion when Ainsley wakes up she complains about her feet (by crying and pointing). I brought her communicator on Friday and without prompting she said I feel: hurt: in my: finger & feet. I think she gets pins and needles. With her being unable to speak it's difficult to know for sure but I can't think of any other reason for pain in those areas.


I've got a ton to do around this house, especially in the yard if I'm hosting Easter (which I am to give my SIL a break). It's early this year, only 2 weeks from today, can that be right? Invitations to the family are coming...I swear. It's hard to get much done when I'm sick, home alone with the kids, and Ainsley requires so much care. Doesn't it seem like just when we are done with one holiday or event another is just around the corner?!

Mar 15, 2013

Quick Update

This is just a quick update that Ainsley is feeling better. The fever broke. She still has an awful lot of secretions though and a runny nose. She slept through the night without requiring care for the first time in who knows how long, 6 months at least. Steve and I were remarking to each other, "Oh this is what a good night's sleep feels like." In part that may be due to the We are sticking close to home and cancelled therapy. Luckily it is a non-school day or she'd be kept home for the 6&1/2th day. This is the most school she's ever had to miss (except for surgery recovery).

Yesterday I got the lab results and it turns out in addition to the ear infection brought on by Human Metapneumovirus her trach culture grew pseudomonas, a bacteria that is frequently colonized in trach kids. The pulmonologist wants her on a 14 day course of Tobrimycin delivered via Nebulizer. If you can believe it Ainsley has never used a nebulizer or received any breathing treatments of any kind. So we are working with our home care people to get the equipment delivered, hopefully today.

I learned recently, by chance from the trach forum, that Tobrimycin is said to potentially cause ringing in the ears that can lead to hearing loss. A frightening side effect for a non-verbal child who cannot complain of ear ringing (remember she didn't even complain about the "raging" ear infection.)So I was able to ask about that when they said they were prescribing Tobi. The pulmonologist said (via nurse) they did the study that concluded there was a risk for hearing loss and that it was based on systemic (oral) Tobi, and that inhaled Tobi poses minimal to no risk. The same would be true for Tobridex drops used to treat tracheitis. The concern is when the whole body absorbs the med and it gets into the organs.

With any luck we will do our first nebulizer treatment today. Even without it, Ainsley is smiling and that is what I love to see. Ainsley's had a lot of secretions these last few months so it sure would be nice if this got her back to what I call her "summer baseline".

Mar 12, 2013

I Brought My Umbrella

I expected Ainsley to get better over the weekend but she didn't. She had a fever ranging from 101-103 off and on. Bouts of uncontrollable coughing here and there, sometimes with blood. Come Monday I called the pediatrician and couldn't get in until Tuesday at 4:00. After multiple calls to Pulmonary I decided to take her to the ER. The nurse didn't like that she still had a fever after so many days.  Our home nurse listened to her lungs and she sounded okay. But the fever was persistent and since it had lowered it seemed she should have been perkier than she was. So we decided to go.
She had a huge coughing fit while I packed up our stuff. By the time we got to the ER she no longer had the energy to cough, even when I suctioned to get a trach culture sample (suctioning always triggers a cough). The bleeding stopped and her temp wasn't too high. I didn't really care though that she didn't look as sick because my goal was to get the testing we needed and get outta there!
They did lots of testing. Blood gas/CO2 was normal. The lung x-ray was normal (enough) so once again the feared pneumonia didn't exist. What it was: an ear infection, brought on by Human Metapneumovirus. She's now on anti-biotics so hopefully that will cover anything that the trach culture may come back growing.
As often happens when she gets sick she will cough so much that she starts bleeding. This time it was a little worse than in the past, and the color was like thin tomato soup.  This picture was taken after we got home from the ER at midnight last night and doesn't include the bunch that was coughed into Steve's hand right before this picture. I kinda wish I'd taken pictures from the start to show them since they never saw the bleeding, but then I might be typing this from a hospital room.
Today she was less energetic than even yesterday. The secretions are getting thicker and colored. She seems just really tired. The coughing is exhausting. This is an illness that would seem just like a regular cold to anyone else. For her it's really just difficult because of the trach. Thankfully she has pretty good lungs otherwise she'd probably have pneumonia right now.
This is our suction unit and the secretions from today and you can see how red it still is. That should be clear like water. We use saline to flush the tubing hence the high volume.
I changed her trach today after bathing her (she was a stinky mess and I like to wash off the germs.) and was surprised to see the cannula coated with goo after just 3 days. She'd had a trach change just Friday. Sadly during the trach change she couldn't breathe and turned blue in seconds. This is a big change for her so either she's got a granuloma or the coughing has caused severe swelling. Maybe it's just temporary because of her currently increased respiratory rate and lower sats (about 94%). Unfortunately it means we are back to being in a life or death situation if the trach ever becomes accidentally dislodged (it happens). I've got some e-mails in to her doctors. We had an important ENT appointment scheduled for today and that had to be cancelled as well as therapy.
The good thing is that I brought my umbrella to the ER and so it didn't rain....Meaning my suitcase. Since I was packed with everything I would need if she was admitted they let us come home. That is where I'd rather be since there isn't really much else they can do for her. She just needs rest and time to recover. Anyone whose been in the hospital a lot knows that is easier to do at home than at the hospital.  I love it when it works out that way.
Evie and Adrian also have coughs. I'm on the verge, but keeping it at bay other than a massive headache.  I have faith that we'll survive the week. And then Steve will be home and life will get easier. I hope your week is better than mine will be. 

Mar 9, 2013

Ugh, We're Sick

It's harder on kids with trachs to be sick. Imagine when you are sick with a cold that I made you breathe through a drinking straw. That's what it's like for kids with trachs. Except the drinking straw is in their neck. I can only imagine it's not so comfy to cough with a straw in your trachea. That is why I try so hard to keep Ainsley from getting sick. If she gets a bad cough it often ends up eventually causing bleeding.  The trachea becomes irritated and that causes more coughing and sometimes that results in a vicious circle of non-stop coughing that is hard to break.

That is what's been going on this week. Adrian had a bad cough this week and unfortunately Ainsley caught it. For Adrian he was able to continue going to school and didn't have a fever. Ainsley coughed so much neither she nor I got much sleep and Thursday I had to pick her up from school and she developed a 103 fever. Her heart rate was in the 160's. I even brought out the oxygen for the first time in 15 months to see if that would help her get more comfortable and breathe slower (it didn't). (Thanks though for your help Christy.)

The acetaminophen she'd had didn't help a lot but a dose of ibuprofen helped lower her temp a bit (probably to about 101.8) and heart rate. I've gotten to the point that I can judge temperature with my hand and just occasionally double check myself.  She is still miserable and in no condition to go anywhere. So unfortunately that means I'm at home with her today missing Adrian's final basketball game of the season and the end of season party.

I was on the computer researching the law about the legal age for babysitting and how that pertains when nurses are in your home when I looked over and saw Ainsley slumped over on the floor. She had been sitting on her knees on the floor watching a show but then leaned forward and fell asleep laying down in the fetal position. She'd lost circulation in her feet and they were blue and since I couldn't see her face for one fleeting second I thought she'd died. Of course she hadn't. (There is always a minuscule chance of trach obstruction.) I picked her up quickly and put her back on the couch where she then continued watching Martha Speaks.

Here you can still kind of see how purple her feet are even though they'd pinked up quite a bit by the time I got the camera. I should mention she doesn't have good blood flow to her feet so she is prone to losing circulation easily.

Of course dealing with so much trach snot and suctioning I can't help but catch whatever Ainsley has any time she has anything. Luckily it's not as severe for me since I still have to take care of her day and night. Adrian also woke several times throughout last night with severe ear pain that required a hot pad and Ibuprofen. Evie also has a bit of a cough.  I'm so thankful that I don't have the terrible cough. That is the worst! It's real fun around here.

Thankfully we got word yesterday that Steve's company decided not to extend "crunch" another month. After this past year I might have lost it.  They will work extended hours just during next week and then will go to normal 40(ish) hour work weeks to finish the game in June. Thank God! Plus he got the weekend off again. It's great that he's home again this weekend, I just hope he won't catch what the rest of us have.  Though Steve needs to recuperate too from the extreme work schedule, maybe I actually will be able to get away by myself soon, for a day or two.  Wouldn't that be something?!

Honestly having my husband at home to help out with the nighttime routine and Ainsley's care will feel like a vacation. I'm still not giving up on some PTO though. ; )

Well, I've gotta go suction, give meds and a tube feeding and get Ainsley cleaned up and dressed. I hope you all have a good weekend!(Actually, the best thing about being sick is getting to sit around and watch movies guilt free so this might turn out to be a nice family weekend for us after all.)

Mar 7, 2013

Parenting I Quit

Last week I was lamenting to a fellow SN mom that I am tired. Having 3 kids can be tiring period. Having a husband who comes home after homework, dinner and bedtime every night month after month doesn't help matters. And then there are Ainsley's ever present needs which are many: routine around the clock trach care, oral + g-tube feeding, assisting with toileting/dressing/teeth brushing/positioning, plus trying to squeeze in as much home "therapy" as possible every day with stretching/standing/balance/walking (all things gross motor), cutting, drawing and all things fine motor, oral exercises and eating, cognitive (colors, letters, numbers, vocab) and communication (oral/AAC/sign language) which I frequently cannot do as much as I'd like; not to mention all things medical research/scheduling/ordering/cleaning/stocking med supplies & equipment, attending appointments surgeries etc. etc. Then there is the fact that Ainsley's equipment alarms and she needs care (suctioning & repositioning) in the middle of the night and that has disrupted our sleep nearly every night of the last 6 years.

The mom I was talking to suggested taking Ainsley to a respite facility so we can go on a family vacation like to Disneyland (which I personally love but find exhausting). I think she missed the point. Getting away for a week still means coming back to all that. What I really dream of is a solo vacation. Really it's probably just a fantasy. My family means too much to me to leave them behind, and since we haven't been on a family vacation in a couple years (Steve's work schedule) it's not likely that I will be able to convince my husband that as a SAHM I deserve some PTO. I know I'm not alone in having these feelings. It doesn't mean I don't love my kids. That's why when I saw this  this blog post today, called Parenting I Quit at Parenting. Illustrated with Crappy Pictures, laughed my head off. I'm posting it here just in case you need a laugh today too.

I also liked these posts:

What It Is Like To Not Sleep At Night (I wish she'd draw a special version just for us trach moms. Ainsley spent a lot of the night coughing last night.)
Toddler Diaper Changes (I'm so glad that Ainsley is finally toilet trained. After 12 years of kids in diapers I was getting tired of this game.)
Doctor Visits (This is especially challenging for our medically complex kiddos who are in and out of doctor offices and at real risk from getting sick.)
The Uppers & Downers of Parenting (or Coffee & wine) (I don't know if any SN moms can survive without caffeine.)

Actually every single post of hers I read was hilarious. I hope you find them funny too.

Mar 4, 2013

The Anatomy of a Party

Thankfully Steve (my husband and IT guy) was able to make some space on our computer this morning. I was having to delete pictures off the computer in order to add any, and it's been that way for months. It was a pain and I am so happy to have that problem solved!

He was finally home for a whole weekend for the first time since Christmas. What a difference it makes. We were able to complete a couple home improvement projects (replace an outdated chandelier and add a fireplace mantle, both ordered off the internet awhile ago), mow the grass & clean up the mole holes and put away the last of the Red Carpet party. Adrian had a basketball game (Sadly they finally lost. The other team was SO good. They'd creamed all the other teams by 40+points, so really Adrian's team did quite well. We have a playoff game against them again next weekend.) In addition Adrian started baseball and we went to buy all his gear. We made a little time to play with the kids. The biggest thing of the weekend (it was busy) was that my SIL brought us cousin Emily's bed for Ainsley(she upgraded to a Queen). Her unusual room configuration (with french doors that allow us access in the night when she needs care) means that the room really needs a day bed so this bed is temporary until we can find one. Ainsley is so tall that she didn't fit in the dinky toddler bed (which is really crib sized after all) and her feet dangled off the end. She's been uncomfortable which means her oximeter alarms go off and wake us up. The room change meant I had to reorganize all Ainsley's medical supplies to consolidate them into the closet med supply cabinets. That took most of Sunday and I didn't quite finish. I also need to update our emergency tote of supplies (You know in case of some sort of disaster.) I sterilized about 50 trachs. I tossed lots of expired meds and gathered a box of supplies to give away. I was able to get the IV pole out of her room. It all needed to be done anyway. All the changes make it look "less medical" which is nice.

Ainsley has a love hate relationship with change. She didn't want her old crib to go but was excited to climb up into the new bed. I had to make due with what bed linens I could scrounge up and will have to get her something nice. I don't want to risk ruining my grandmother's quilt and the thick vintage wool blanket is a bit scratchy for Miss A.  She's using Evie's sheets. She did wake up a couple times last night and sat up and begged to be brought to our bed, but laid back down easily enough when we said no. With any luck we will soon all have some much improved sleep.

Before I post the Red Carpet Birthday photos I want to qualify things and say that I do not really have time to throw these type of parties. This is especially important to say for the special needs moms who read my blog. In no way do I think anyone else should do this. Only crazy people throw these type of parties. Really I mean that. Not only do I think that kids don't need this type of party, I think they can become rather spoiled by it. And it can cause resentment, because really I don't have the time to be doing this stuff. It's not worth it.

I was talking to a close friend and I told her, like many times before, that this party was the last. She asked if I could just scale things back. Honestly the answer to that question is apparently not. When Evie suggested a Red Carpet party I thought it would be super easy. Buy some red carpet and a few decorations and we're done. Like every other party since the infamous Harry Potter Party I always start out intending to keep things simple but they end up being anything but. If I do say so myself, they've been fabulous: The American Girl Sleep Over, the Nature Hunt party, the Percy Jackson Party, and the Camp Party. I think I'm forgetting some. I just don't think it's worth the hours it takes. So I really hope this time is the last. We're going out with a bang.

I'm trying something new, a Photobucket Story since the Blogger photo interface is always such a pain. It is in Beta mode, so hopefully it will work for you. Click the "View Full Story" button if you want to view it full screen at Photobucket. I have tons more photos but wasn't sure I should post individual shots of the guests on the internet. I didn't understand how it worked and thought I could make changes any time, but I guess I hit save one too many times (afraid I'd lose my work) and it's "done" even though I wasn't done.  So please forgive that it isn't perfect, but hopefully it is good enough.

AinsleysMomsPics's Red Carpet Party album on Photobucket

Funny enough during the party planning I ran into a lady at the party store who asked me for some advice. I told her not to worry about it too much because as long as the kids are together with their friends and have some food they are going to have fun. And it's so true. So next year I'm going to take my own advice about what a party really requires. Wait a minute did I say next year? I didn't mean to.