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. 

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.)

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.

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.

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.

Guess What This Is

I'm sorry this isn't going to be the post you were hoping for. I've got a ton of great party pictures to share but my memory card is currently holding 14GB (including video footage) and even after deleting about 1,000 pictures over the past 2 days I have a mere 3GB free space (out of 918GB). I am eager to share them, reallllly, so I promise I'll get them up as soon as I can get my IT guy home to work on it (husband Steve).

Do you follow the NieNie Dialogues? I do. I always look forward to her posts when I open up my Blogger dashboard. She also writes a column called Nie Asks on BlogHer. And if you haven't you should read her book, Heaven Is Here. It's great. It and Wonder are the only books I made the time to read last year. (Except Special Needs books for Ainsley of course.) Recently Stephanie asked which picture do people NEED her to see?  It gives me an excuse to post this picture, which I've had  for well over a month but could never quite figure out a way to work it neatly into a post.

First I'm going to share the picture and I want you to guess what it is you are looking at and why I think it is so amusing.

Ready? Here it is:

Okay, now what is it?

 

Yes it's a toy. But that's not specific enough.

 

Do you give up?

 

Here's a hint: You'd have to have a young son to have any clue what-so-ever. And he would have to like video games (that's a given though isn't it?).

 

The real question is not so much what this is but what it represents and why I laugh every time I see it.

 

And it just goes to show that Ainsley watches us carefully and notices an awful lot. And that she really wants to do the things she sees us doing.

 

So what it is: is a Skylander portal. Adrian got it for Christmas from Santa. It's part of a video game (for Wii or PlayStation). The way it works is that you buy figures and place them on the portal to unlock the characters and play them in the game. The more figures you have the more characters you can play. (Marketing genius for sure.)

 

You might be saying "But hey wait a minute! That looks like Jack-Jack from The Incredibles and SlinkyDog from Toy Story." And you would be right.

 

We have a giant basket of animated movie characters in our TV room. Ainsley loves to play with them. I guess after watching Adrian place his Skylanders characters on the portal (for many many hours during Christmas break) she decided to do the same, but with her movie figures.  When I spied them on the portal I laughed out loud. I'm so glad saw it and snapped a picture. It still makes me laugh every time I see it.

 

Now if only it worked that way. I'd love to see a giant Jack-Jack invade the Skylanders game.

 

You never know what that Ainsley is going to do. She keeps me on my toes.

Wonder and My Friend Christy

Having a medically complex kid with special needs is hard. Really hard. Almost everyone know a child with some special needs but few people know a child with many special needs and a tracheostomy.*

I tell people all the time how much support I've gained from the parents of the Tracheostomy.com forum over the years. Our kids have a huge range of abilities and conditions.  But through the forum I have found parents who I can relate to. I think there is great comfort in feeling understood. Especially when you are going through something that you think other people just can't understand. Even though it is true we all have difficulties in our lives it is comforting to find people who are going through something similar. Somehow it gives us strength, I think, to know we aren't the only ones facing whatever that difficult thing is.

That is why my friendship with my dear friend Christy means so much to me, even though we've never met face to face. She is AMAZING and so is her daughter HARLIE. She has been through SO MUCH. They are both fighters and live full rich lives despite the difficulties that Harlie's medical conditions cause. It happens that her daughter is also a craniofacial patient like Ainsley. Our children are very different but there are enough commonalities that Christy and I really understand what each other are going through as parents of these highly demanding children.

We read each others blogs and talk on the phone periodically. After a post she'd written about a biting remark a kid at school made regarding Harlie I recommended that she read the book Wonder by R.J. Palacio, which she did awhile ago. For parents of craiofacial kids this book stirs up some very difficult emotions. Her son recently started reading it too (It is highly recommended for grade schoolers. Both my kids have read it. But it is a great read for adults too.) and she posted a review of it on her blog today. I would love for you to read her post, click here to go to it.  In her post is a particularly poignant excerpt from the book. It relates to siblings. In recent blog posts I said this:

I feel like Evie and Adrian get shortchanged. (Sometimes I cry as I tuck them into bed when yet another day has gone by that I feel Ainsley got the bulk of my attention. Though it's just as big, if not bigger problem, that my husband works such long hours.) 

and:  

My greatest accomplishments and my greatest failings are all wrapped up in this thing called Motherhood.

I know those statements may sound dramatic but they speak the truth about how I feel as I try to keep things in balance for our family. Having a special sister like Ainsley is very demanding, even though we love her so much, and it is hard on the siblings. I think the excerpt quoted in Christy's post really explains it so well.

All humans want to feel that they "fit in". When your physical appearance is different that can be difficult to do. Many different people face this issue on different levels. Society impresses the idea on us that a certain physical ideal is most valuable. We all fall into this false trap because we want to be valued. Even those of us who are lucky enough to fit into the "normal" category of appearance still have things we hate about our own appearance. What a shame. The truth is that when you truly love someone their appearance is of little consequence.

Even if you don't know someone with a craniofacial condition, we all can relate to the desire to fit in. That is why I think this book is a good read for EVERYONE. My hope is that this book builds compassion toward people with craniofacial conditions and all people that look physically different. I hope you will read the book or at least read Christy's post.  Have a great rest of your week!

*P.S. I wanted to point out that in the book it is mentioned that the main character Augie had a tracheostomy when he was younger.

My Baby Then and Now

Today at 7:20 pm I will officially have survived 12 years of parenting. It is joyous, it is tiring, it is a million mundane moments punctuated by moments that I'll never forget. I remember the feeling of anticipation as I gazed down at my huge pregnant belly and looked at the beautiful snow falling outside my window. The world was quiet and still. I knew change was coming but really had no idea just how much my life would change in a few short hours. I could never have imagined all that the next twelve years would have in store for me. Being a parent is so much more than I ever thought prior to that moment when I became one nearly 12 years ago.   My greatest accomplishments and my greatest failings are all wrapped up in this thing called Motherhood.

I've written about it in the past so I won't write too much today because I have other things to do, like take the kids out bike riding because Evie got a new bicycle for her birthday. (Ainsley in her walker, we're still raising funds and planning to get her a trike in the spring). She is getting so tall that we actually bought her an adult bike for her birthday so she can keep it for the rest of her life! Crazy is what that is! If there was a pause button for life I would use it right now and keep her this age for awhile longer. The changes that are coming are coming fast. She is so beautiful right now and even though I know she will be a strong, caring, creative, amazing (& beautiful) woman one day, a part of me wants her to remain my baby forever.

My baby then.

 

And now.

 

She's wanted to be eleven, she said, "for her whole life" because in the Harry Potter books Harry is 11 when he goes off to Hogwarts. She was so sad about turning 12 because it meant not getting to go to Hogwarts herself at age 11, that I promised her we'd do a photo shoot of her in her HP gear while she was still 11 as a way to hold onto that. I got some great shots but will just share one right now. (My computer is still teetering on the brink of being overstuffed and it makes blogging difficult. I had Valentine's photos I wanted to share. You should have seen Ainley playing charades it was the cutest thing! Oh our nutty life. Steve is working on a solution, but he needs some time at home. Hopefully his work schedule will improve drastically by the end of February. Even I'm tired of hearing myself whine about it. But I digress...) I have done a lot of crazy things because of this girl I love so much. She is creative too and together we are dangerous.  Who knows, maybe some day we'll become mother daughter party planners.  She is having a Red Carpet sleep over party this weekend and it's going to be fabulous! Likely I won't have a chance to post again until it's over. Have a great week!