Friday, April 02, 2010

How is Jack?

"How is Jack?"

I get asked that question often and the answer I give usually depends on who is asking. 

When asked by my friend who is an ER doctor, my response goes something like this:

"His heart rate has been 120+ for weeks, his sats are generally staying above 95 on .5L of oxgyen - but we can't get him off the Os.  He just finished a 20 day course of Augmentin, he's on his second 14 day course of inhaled TOBI, plus Xopenex and Pulmicort twice a day. He still has tons of secretions, requiring lots of suctioning, the Vest at least 3x a day and frequent use of the cough assist machine.  He's still having intermittent periods of respiratory distress and crying every day and we don't know why, although he eventually recovers from both.  We're getting bloody secretions when we suction his mouth/throat and his left ear is oozing creamy colored drainage. No fever."  

When asked by one of my trach mom friends:

"He's still sick.  I'm stressed and exhausted and I just want him to feel better.  He's been on antibiotics and TOBI, but he can't seem to turn the corner.  I'm up and down all night long dealing with water in the vent circuits, autocycling and checking on him because his heart rate is still high even when he is sleeping.  I can't leave his side for too long because he requires constant suctioning. My body aches, I'm tired and I just want to cry (actually, I've been doing a lot of crying lately ... exhaustion does that to you).  I probably should get him back into the doctor to see if we can figure out what's going on, but I feel like it will be a complete waste of time."

When asked by someone at work:

"He's still sick, but we'll get through it."

When asked by one of my sisters:

It depends on my mood when they call.  Whatever version I give, it usually involves a lot of swear words.  I tend to let my anger out when talking with my sisters. (I think there is some underlying resentment on my part, but that's a topic for my therapy session ... if I went to therapy, which I don't).  After I hang up the phone, I always wonder if they think I'm on the verge of losing it.  I spend a lot of time on the "verge", but haven't completely lost it yet.

I'm never sure how much to share with people when it comes to Jack because I feel like I'm complaining when I talk about what's going on and, let's be honest, most people don't really want all the details (and sometimes I just don't feel like giving all the details).  I try and take my cues from the person asking.  When I see their eyes start glazing over or start diverting off into the distance, or when they start to change the subject, I know they've reached their saturation point and it's time to move on - which is completely understandable.  I get it.

So, how is Jack?

Jack hasn't been this sick this long since 2006.  The antibiotics definitely kicked the sinus infection and he's somewhat improved, he's in good spirits for the majority of the day, his heart rate has come down somewhat, but he can't get off the oxygen and the intermittent periods of distress are stressful for all involved.  I think Jack's nurses are as exhausted as I am because he's keeping them hoping all.day.long.  

So, it's off to the doctors next week to see if we can get some answers (I'm not optimistic).  We see the pulmonologist on Monday and the ENT on Tuesday.  As I'm sure you've figured out by now, I don't immediately run to the doctor every time Jack is sick.  I don't have a lot of confidence in doctors and their ability to help Jack. They see a chronically ill child and many don't want to take the time to figure out the problem.  I live in fear of them just wanting to put him in the hospital because they don't know what else to do and that is something I will fight every step of the way. 

I really don't handle it well when Jack is sick.  I'm in a chronic state of exhaustion to begin with and my reserve has diminished exponentially through the years.  When Jack requires as much care as he's been requiring the last month, the stress on me is intense between caring for Jack, trying to meet my other kids' needs, doing what needs to be done around the house, and doing what is required and expected of me at work.  I try so desperately not to carry my home life into my work life, but when Jack is sick, it's so hard to keep my worlds separate.   

But, alas .... we carry on because I love this kid and I can't stand for him to be uncomfortable or in pain. I just pray that I have the endurance to carry on for the duration.


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May you all have a peaceful and joyous Easter.  

13 comments:

Anonymous said...

I'm sorry that Jack is so sick. I wish you could get a doctor to come to the house to check him out. I wish you could get some help with him overnight so you could get some sleep. It is impossible to keep up the intensity of around the clock care--as you well know--but what are you going to do?

You and Jack have not been far from my mind. I wish I could be there to cover a shift or two.

Sending you and Jack big hugs and prayers and Easter blessings.

Love, Kristy

Anonymous said...

Ann,

I'm so sorry that Jack has not been able to kick whatever is going on. You have every reason to cry and swear. I wish I lived closer so I could give you a few minutes of rest. Even if you were just in another room.

Praying for both of you,

Sandra

Sarah said...

I'm so sorry Jack is still sick Ann. I completely empathize with you in your last few paragraphs. It's a lot of pressure to be the one who has to always keep it all together. It feels so overwhelming and impossible. I pray that you will soon find some strength and rejuvenation.
Love Sarah

Katie said...

Hugs Ann. I think about you guys often and though I know that doesn't help in the here and now, I hope somehow it gives you comfort that some of us totally know how you are feeling and on some level "feel your pain". Mr.Jack-we all love you and want you to feel better soon! Good luck and the doctors next week...you just never know, maybe they'll surprise you this time :)
Take care and Happy Easter.

Anonymous said...

I hope you can get some much needed rest soon and that Jack feels better too! You all will be in our prayers as he recovers.

Dawna

Anonymous said...

Not fair. Just not fair for Jack or you or your family. I really, really hope things turn a corner quickly and that either the ENT or pulmonologist can give you some kind of answer, or at least try to. I also wish I was a little (or a lot) closer so that I could cover a few shifts.

I swear my sisters must think I'm about to go over the edge at any second. Sometimes I'll get off the phone with one of them and think, "Wow. They must think I've completely lost it." Then I'll call back and ask them if they think I'm crazy, which I'm sure makes them think I'm not, right?

((HUGS)) my friend. Here's hoping that you and Jack have a blessed and restful Easter Sunday together.

~Amanda

Rachel said...

i'm so sorry ann. i did not know things with jack were still so "off." it was a bit amusing how you described how you describe jack's sickness to the different people in your life. i can totally relate. i wish i could be there for you (in proximity). i hope you get some answers tomorrow. or that jack turns the corner. or both :) sending big hugs,
rachel

Melisande said...

Ann,

Love to you both! And wishing a resolution and health coming soon! {hugs} I'll keep you all in my thoughts!!

ssouth said...

Hoping for no whammies at the appts and that a hospital free recovery is on the way. Also hoping that someone is at least keeping you well plied with chocolate.

CS said...

I'm sorry he's been sick for so long and I'm sorry you're exhausted. I understand having different answers for different people-sometimes you just don't care to explain it all AGAIN after you've been living it 24/7 but then again you want people to understand what's going on/why you're on the verge. Hugs to you. Hugs to Jack. I hope there are answers for you this week. -Caty

worthy said...

Sister, if anyone deserves to moan, complain, cry AND swear, it's you! I'm sorry poor Jack is still sick and I can understand and relate to every word you said! It's exhausting enough when they are well, but when they are sick, that's a completely different kind of exhaustion.
You never cease to amaze me how you cope so well and manage to hold down a job too, I couldn't do it.

Hope you managed to have a peaceful Easter xxxx

Susan said...

Sorry for the late reply. Hip surgery and all...I just want to say I second everything Julie said. I hope things turn around soon. (((HUGS)))

Heather said...

I just found you. I have a Jack too. And other than the fact that my Jack has no trach, everything else is all too similar...
Gotta go read more. I think we were separated at birth.

Hugs