Wednesday, December 31, 2008

Happy New Year


with love,

Jack (and Ann)


Food for thought as we begin a new year:

I am only one,
But still I am one.
I cannot do everything,
But still I can do something.
And because I cannot do everything
I will not refuse to do
The something that I can do.
By Edward Everett Hale


Monday, December 29, 2008

Checking In

I'm not feeling too inspired to write these days. I always approach the Christmas season proclaiming "I love Christmas". But the fact is, the Christmases I love are memories of Christmases past. They are the Christmases of my childhood and those with my girls when they were little . . . before Jack was born. Growing up with five siblings - Christmas was always so much fun. From picking out and decorating the tree, to the anticipation of Christmas Eve, to the chaos of Christmas morning. Nothing but good memories. Now, as I wrap the gifts, fill the stockings and sit back and watch Christmas morning unfold, it's just not the same because one of my children is still asleep, he doesn't have a clue what Christmas is about, he doesn't ask for toys, he doesn't play with toys, and he just doesn't get it. The fun of Christmas morning is tempered by the morning routine that I've come to dread after ten years - the breathing treatment, the Vest, suctioning, tube feeding, and more suctioning. Loading up the car to drive across town to my sister's house is not as simple as the kids all jumping in the car. It's just a whole lot of work and by the time I get to my sister's I'm exhausted and . . . bitter. I just feel so sad for Jack and I suppose, for me too.

As my brother so accurately pointed out last night when we talked . . . I'm having myself a pity party. I just want the whole "happy" holiday season to get over with. I'm much happier in the routine of every day life where it's easier to pretend my life is just like everyone else.

Putting aside my pity party for a minute, I received wonderful Christmas cards/pictures from so many of you and I am so grateful to be considered your friend. Thank you all. I also received several very generous donations to The Willow Tree Foundation. I am honored and more committed than ever to reach out to more families of medically fragile children this coming year. Stay tuned for more on that.

Thanks for checking in. Thanks for caring.

Saturday, December 27, 2008

Random Christmas Pics

Christmas Eve - Shannon

Christmas Morning

Christmas Day -- cousins
(sans Jack because we couldn't get his wheelchair upstairs)

my sister Joan and her daughter, Shannon

I know, no pictures of Jack. I was a pretty lame photographer this year.

More later .... have a great Saturday!

Wednesday, December 24, 2008

When a Child Is Born

On this Christmas Eve, I share with you Il Divo singing “When A Child Is Born”. I am moved to tears every time I hear this song. The words talk to my heart and have so much meaning, not only as they apply to the birth of Jesus, but to the birth of all of our children. The hope, silent wishes and winds of change each and every one of our children brings to our lives. Powerful stuff. And the emotions are even more intense when I think of Jack and all the children who face the incredible challenges life has bestowed upon them with such joy and grace. For it is only because of hope and silent wishes that I am able to survive the winds of change Jack has brought to my life.

May you all have a blessed Christmas filled with the Hope of good things to come in the New Year.


I encourage you to close your eyes as you listen to the song because the video really adds nothing to the song - it’s just the only video I could find of Il Divo singing the song.

Tuesday, December 23, 2008


Thank you all for taking the time to vote for the "best" cookie. The kids (and my very competitive sister) really enjoyed it. The winner is #2 - Santa created by my niece Kelsey. The grand prize is the right to Gloat at our next family gathering on Christmas Day. Congrats Kelsey!


As for Jack's first day with the new nurse ... he pretty much cried the entire day. *Sigh*. He doesn't like change any more than his mother.

Sunday, December 21, 2008

New Nurse

Tomorrow our new nurse starts. Let me just get the whining out of the way ... "I HATE THIS!"

I hate leaving Jack in the hands of someone I do not know. I've not met the new nurse yet. I was supposed to meet her last Monday when she was scheduled to work a half-day, but she called and said she couldn't work (not a good start). I have to rely on Kristi's assessment of her (who's opinion I trust implicitly) and, according to Kristi, this person is knowledgeable and comfortable with trach/vent kids. However, equally as important as finding someone who has the skills to care for Jack, is finding someone who will treat Jack as a person, not simply as a job. Kristi told me that the new nurse commented as Kristi was doing Jack's morning routine, that Jack is very lucky because she can see how much Kristi truly cares for Jack. She said she's seen many nurses who don't begin to treat their patients as well as Kristi treats Jack. Kristi shared this with me, not to toot her own horn, but to point out that this new nurse clearly knows the difference between good care and bad care. It gives me some comfort to know that this new nurse recognizes the difference. It is so important to find a nurse who will be gentle with Jack, who will listen - and respond - to what he is "telling" them, and who will respect Jack as a human being. It sounds like that would be a given, but sadly ... that's not always the case with a non-verbal, immobile, 100% dependent patient, especially when the patient is not a cute little baby anymore (and that's a whole other blog topic for another day).

In any event, the only reason I'm even okay with this new nurse coming on board is because Mark is off on Mondays, so he will be home to keep an eye on things. Based on Kristi's observations, I'm cautiously optimistic that the new nurse will be good with Jack and everything will be okay.

Wish us luck!


Be sure to Scroll Down for today's first entry .... it's much more entertaining than this one.

Cookie Decorating Contest

This evening the cousins (and Aunts and Uncles) got together for our annual cookie decorating party. I wasn't sure it was going to happen because my niece's flight from New Jersey was delayed several hours. However, we managed to pull it off and I must say that this year it was quite the competitive group - each trying to "out-decorate" the other. It's been requested that I ask my blog followers to vote for this year's "best" cookie. Everyone is taking this contest very seriously, so it would be great if you all would humor us and leave a comment picking your favorite cookie (by number). All my silent readers ... please weigh in (you can remain anonymous).



Let the contest begin:


Vote for your favorite

No. 1

No. 2

No. 3

No. 4

No. 5

No. 6

No. 7

No. 8

No. 9

Thursday, December 18, 2008

End of Week Bulletin

It's been a typical "week before Christmas" kind of week, although it's not been too bad for me because Mark has the week off and he's been doing most the shopping for the kids while they are in school. As of today, the kids are officially on "Winter Break". Eric is soooo happy about that! Mary finished her last final today at noon and she didn't waste any time packing her bag to leave and spend a day (or two) at my sister's house with her cousin. We just might see her back here by Christmas Eve (if she's smart). Eric is driving us crazy with the countdown to Christmas every day, but I'm trying hard to see Christmas through his eyes and enjoy it. It won't be long before he's packing his bags and leaving for college (or the rain forest).

Hilary is dealing with a malfunctioning cochlear implant. She was complaining for several days about hearing an annoying sound that keeps coming in waves and won't stop . . .and this is with the external ear piece of her implant off. I couldn't get how she could hear anything without the microphone on or the device hooked up (more on cochlear implants here). It was bothering her so much, I had to give her something to help her sleep. Hilary saw the audiologist this week and she thinks one of the electrodes may be continually firing and that this is causing the "sound" she hears. We were told it feels much like a toothache. The audiologist turned down the sensitivity of the particular electrode (there are 22 electrodes in Hilary's model of implant) and it seems to have helped some. Although, Hilary says the sound still comes and goes. She has an appointment with a representative from Cochlear Corp the first week in January to have some more testing done. To be honest, I'm kind of hoping the device is failing (it's 13 years old) so that Hilary can get a new one while she is still on our health insurance. Granted, it would involve surgery, but the technology is so much better today than it was when Hilary got her implant. It would really be a good thing if she is able to upgrade the internal device (except for the surgery part). Stay tuned . . .

Jack had a "well check" with his pediatrician this week. Jack rarely gets to see our pediatrician because he is never sick, so I make sure and get him in at least once a year for good measure. It's mostly an opportunity for me to update our pediatrician, especially after all of our STL doctor visits. Jack got a clean bill of health and if all goes well, we won't need to return for another year.

This weekend looks to be busy and fun-filled. I have my firm Christmas party on Friday and I'm taking my sisters as my "dates". (With no night nursing, it's not possible for Mark to go with me.) On Saturday, we're going to try and take the kids to see Polar Express at the IMAX and I'm hoping to get the cousins together to decorate cookies on Sunday.

May you all have a fun-filled and joyful weekend. Enjoy the season and remember the reason.


Sunday, December 14, 2008


Alarms are important. They're necessary to alert you to a fire, a ventilator malfunction or falling oxygen saturations. I understand the need for life saving alarms and even alarms that tell you it's time to drag your butt out of bed to start another mundane exciting day. But seriously, do I really need an alarm alerting me to the fact that the washer is done and now it's time to transfer my clothes to the dryer? Or an alarm letting me know my coffee is finished brewing? I really think my clothes will survive the night in the washing machine and my coffee is just fine sitting in the pot. Whoever decided we need alarms alerting us that every machine and electrical appliance we use in our every day lives has completed its required task, clearly didn't live with a child hooked to machines designed to alarm only when things aren't good. I hear an alarm and the adrenaline kicks in and I'm ready to ward off death. Okay, so I'm unique. I recognize that for the majority of the population, the sound of an alarm doesn't trigger the fight or flight response. But c'mon, do appliances really NEED alarms?

Well, I'm off to save my clothes from a cold night in the washing machine.

As for my coffee, it's making its way to my coffee cup as I sit down to start writing out my Christmas cards. I regret to inform everyone, but Eric isn't the least bit interested in helping me write a Christmas letter this year. So look for a very boring Christmas card in your mailbox from the our family - no picture and no letter. But know that our card is sent with love and appreciation for the privilege of your friendship.

Have a great week my friends.

Saturday, December 13, 2008

Really Santa . . . I can

My sister's mantel -- I love the wall decal!

Wednesday, December 10, 2008

Santa Claus is Coming to Town


Jack is feeling much better and is back to his happy self. It appears to have been only a 24 hour bug/virus. Thanks for all your well wishes.

When I sat down with Eric to start writing our Christmas letter, he couldn't get beyond what we did last weekend when I asked him to tell me some of the highlights of this last year. I'm thinking it won't be a very fun project if I just end up losing it with him because he's not "getting it". Continue to stay tuned . . .

Any idea how I respond to this logic: Mark and Eric went to the Mall the other night to get his glasses adjusted and afterwards, Mark thought it was a good idea to let Eric check out the Lego Store. Eric now has a list of Lego sets he wants from Santa which total . . . oh, around ............. $1000! I told Eric that he was not going to get every Lego set on his list because it was too much money. His response "you don't have to worry about it mom, Santa is getting it, not you."

Now what?

Monday, December 08, 2008

O' Christmas Tree

We got our Christmas trees this weekend - a live tree and an artificial tree for Jack's room. The kids decorated the tree in Jack's room and the other tree is "Mom's tree" decorated with "Mom's ornaments".

Jack is mesmerized by the lights on his tree - he was up very late last night looking at his tree and listening to Christmas music on his iPod. It clearly makes him happy to have a tree in his room and that's really what it's all about . . . making sure Jack is happy!

Jack's tree

Mom's Tree

You'll note a major missing piece to the tree . . . . the angel on top. I can't find it anywhere. I'm not sure how I could have "lost" it since it should have been put away with all the Christmas decorations last year. *sigh*

I asked Eric about writing this year's Christmas letter. He said he'd have to think about it. Stay tuned. Eric did ask me yesterday: "Mom, if my crab dies, can we make an ornament out of it?" I'm not sure if he's anxious for the crab to die or not?!

After Jack finally feel asleep well after midnight last night, I was awakened by the pulse-ox alarm and a very unhappy Jack at 2:30am. Lots of secretions and lots of suctioning. He was asleep this morning when I left for work, but Kristi called me around noon to let me know that Jack was SICK. He was running a fairly high fever, which made Kristi nervous because Jack never runs fevers. So far, his respiratory status is okay, so I'm guessing he may have the flu or at least something viral.

Here's the pathetic little boy I came home to this evening.

His fever is down as of now. Hopefully, it won't be a long, sleep-less night for either of us.

Wishing you all a good night's sleep and hoping for some of the same for me and Jack.


Friday, December 05, 2008

Christmas Cards

I received my first Christmas card in the mail this week (Cheryl you win :-) I'm so inconsistent with the whole Christmas card thing. For years I would draft a Christmas letter and throw in a picture of the kids. I know how much you all hate Christmas letters, but mine were very entertaining . . . I swear! (at least that's what people told me.) The Christmas letters dropped off after I started blogging because many of the people I'd typically send cards to already knew the scoop for the year because they've been keeping up with the blog. The last few years, I've created my own Christmas card using a picture of the kids. Last year's card was the beach picture you see on the blog. It's almost impossible to top last year's picture, so this year I'm not coming up with any ideas for a Christmas card. I've got no news to share that I haven't already shared here and I don't have a particularly good picture of the kids. Somehow I doubt that anyone will miss getting a card from me, but there's just so much (self imposed) pressure to send out cards.

I'm still thinking on it.

Here's a thought? I could go to Target, buy a few boxes of cards, sign our names and mail them out. Simple.

Too boring.

Have you sent out your cards yet?

Thursday, December 04, 2008


Living with a medically fragile child is complicated. Not only do you have enough medical equipment in your house sufficient to supply a PICU, your very own PICU comes fully staffed with your very own nurses who show up at your very own door every day to provide care for your very own child. It’s just weird. Yet necessary. As my trach board friends who read this blog know, the subject of nurses is a highly emotional one because everyone’s experience is so different. While my experiences with nurses have been mostly positive, I’ve also had my share of scary nurses and situations. So, I share with you a glimpse into our life with nurses over the last ten years.

My first experience with a nurse in my home was when Jack was discharged from the hospital on nasal CPAP at three months of age. This was right after he had previously been discharged following surgery to divide his vascular ring - the surgery during which his phrenic nerve was damaged, thereby resulting in a paralyzed right diaphragm. At the time, the paralyzed right diaphragm hadn’t been discovered and no one knew exactly why Jack was persistently in respiratory distress. Jack was sent home with a CPAP machine to be used at night and when napping. I have no recollection of why a nurse was sent to my house or who even set it up. What I do remember is when I answered the door that first night, the person who identified herself as a nurse made me very uncomfortable.  However, I couldn’t exactly say to her “you scare me, please leave.” I nervously allowed her in my house. I engaged in small talk and asked her where she lived. She then proceeded to tell me that she lived on a pig farm in Illinois. A pig farm? Are you flipping kidding me? It didn't occur to me to ask her about her nursing experience.  I just knew that I was not comfortable with this person in my house caring for my baby.

That night, I set my alarm to get up every four hours so that I could give Jack his bottle through the night. I have no idea what she thought about me providing all of Jack’s care while she just sat there watching me. But no sooner had I escorted her out the door the next morning than I picked up the phone and called the nursing agency to tell them I did not need a nurse. Thanks, but no thanks!

Jack only lasted on nasal CPAP for about two weeks before he ended up back in the PICU in respiratory distress. Fast forward four months. Trach in place, g-button in place, ventilator the size of a small air conditioning unit and impending discharge. How am I going to take care of this kid? How am I supposed to continue to work?

Enter nursing agency number two. A few weeks before Jack’s discharge date, some woman showed up at Jack’s bedside in the PICU and introduced herself as the nurse manger for the agency that would be providing nursing care for Jack after his discharge. I was so overwhelmed with the fact that my kid had a trach and was hooked to a machine that I didn’t really pay much attention to what she had to say. I think I just stared at the woman the whole time with a shell-shocked look on my face and all I could hear was “WAAH, WAAH, WAAH” (you know, like in Charlie Brown). The next few weeks were a blur and then came the day I had to load Jack and all his (life sustaining) crap in my car and drive away from what had become my home for almost 6 months. Jack was discharged on trach collar only. No ventilator (or nurse) accompanied us in the car on the way home. We arrived to an empty house with a ventilator that I had no idea how to use sitting on a cart in our living room next to Jack’s crib.

Enter nurse number two. About an hour after we arrived home with this child we didn’t have any clue what to do with, the same nurse who introduced herself at the hospital a few weeks prior, knocked on my door. I let her in. She didn’t scare me. She took one look at Jack and knew he was having trouble breathing. I, on the other hand, was clueless. She bagged him for short time and then hooked him up to the ventilator. She also hooked him up to the pulse-ox. I, again . . . clueless. This nurse stayed until later that evening when nurse number three showed up. Nurse number three was confident, talkative and very much “in charge”. Nurse number three also happened to be the owner of the nursing agency. She was a former Cardiac PICU nurse at St. Louis Children’s Hospital who decided to open her own nursing agency. She is smart, funny and a bit manic and she and I immediately clicked. Nurse number three worked almost all my night shifts during Jack’s first month home and I used to stay up into the wee hours of the night just talking with her. She taught me so much. To this day, nurse number three and I remain good friends. During the three plus years that nursing agency number two provided nursing care for Jack, I did not experience a single incompetent nurse. I may have experienced a lazy nurse or two, but never an incompetent one. The owner of the agency only hired the best and many of her nurses worked in the hospital (NICU or PICU) in addition to working in home care. When we decided to move back to Phoenix, nurse number three hosted a going away party for us, with Jack’s nurses, therapists and even a few of Jack’s doctors showing up to wish us well. It was so difficult to leave our St. Louis nurses – especially our dear friend Peggy - who, incidentally, drove with us from St. Louis to Phoenix to help care for Jack during the road trip home.

Enter nursing agency number three. The very day we arrived in Phoenix, nurse number two came knocking at my door. Wait, nurse number two, you say? Yep. Ironically, the same nurse who had introduced herself at Jack’s PICU bedside and who was there to help us his first day home (and many other days thereafter) had moved to Phoenix a year before we moved home and she was now a nurse manger with nursing agency number three. Can you say lucky! Nurse number two hand-picked Kristi to be the nurse assigned to Jack’s case and I can never thank her enough for that gift. When Kristi first started taking care of Jack, she had only been out of nursing school for about a year and the only other patient she had cared for in the home had a trach, but no ventilator. But Kristi is smart, she was willing to learn from me and it didn’t take her long to figure out the ventilator and Jack. Kristi has been with us for over six years now and she is an amazing nurse who is not only competent but she also truly loves Jack. Although, technically nursing agency number three gave us Kristi, I attribute us getting Kristi to nurse number two, not to the agency.

Unfortunately, nursing agency number three isn’t nearly as good as nursing agency number two. Kristi generally only works four days a week and we have a different nurse one day a week. Over the last six plus years, our one day a week nurse has been a revolving door and until recently, I was never comfortable with the nurse assigned to us for that one day. We’ve had a nurse who was consistently late every morning and who didn’t do anything with Jack during the day except the minimal amount required to keep him alive. I’ve had a nurse who didn’t suction Jack once during her entire shift and I had many nurses who don’t suction Jack often enough despite the fact that I tell them he needs lots of suctioning. I’ve had a nurse who wouldn’t change out Jack’s trach even though he was clearly in distress because she didn’t want to do it without someone else helping her. Needless to say, I asked that all these nurses be taken off Jack’s case.

The one day a week nurse situation has been very stressful for me and Jack until recently. A little over a year ago, I was contacted by someone who knew me from the message board. She and her family were relocating from Minnesota to Phoenix for her husband’s job. She knew I was having trouble filling my one day a week shift and she offered to sign up with nursing agency number three so that she help out with Jack. Here is someone whose own daughter had a trach (she no longer does), who is an RN and who works at the Mayo Clinic, offering to sign on to care for Jack. Can you say lucky once again!

It’s so difficult to put your child’s very life in someone else’s hands. It’s difficult to find someone who truly appreciates how fragile your child is – from his bones to his airway. I am so fortunate to currently have two very competent nurses who care dearly for Jack come into my home day after day to provide the best of care for him. I can leave for work every morning with peace in my heart knowing that Jack will be loved, well cared for and happy at the end of the day when I return home.


Jack's nurses and therapists at our going away party
before moving home to Phoenix
(you can see how happy Jack was to be moving home)

Monday, December 01, 2008

Happy Monday

It's December 1st ... Christmas is in the air! I love this time of year. I try not to get too stressed out over the gift buying part of the season. Not an easy thing to do with four kids, one of whom thinks Santa will bring him whatever is on his list, two who think their lists are perfectly reasonable, so why shouldn't they get everything they are asking for, and one who . . . well, he's the easy one - he doesn't have a list.

We had a quiet Thanksgiving weekend. I usually don't go near a mall the weekend after Thanksgiving as I can't handle the traffic/parking insanity of it all. I just enjoyed the extra days of sleeping in and relaxing around the house. Not much going on here, everyone is staying healthy ... so far. I know the flu is going around, but hopefully it will bypass our house. (You think we will be so lucky?) Life right now is incredibly uneventful and boring - which is all good, but it does make for very uninteresting blog entries!

May you all have a productive and peaceful week.


The Three Amigas

Enjoying the Thanksgiving feast

Santa Claus is coming to town ;-)