Can I just say one thing...

In the spirit of keeping my promise of bringing you along on all the ups and downs of life with a little saint like Dominic, I just need to say one thing: grrr.  You'll be glad to know that despite what I'm about to tell you, I have kept my promise of not letting the She-Hulk out.  In the tough or stressful times the past couple of days (from fatigue of life in the hospital) I have been able to find complete comfort in the Sacred Heart of Jesus by trying to following the example of St. Therese, albeit most imperfectly (with lots of stumbles along the way, as you're about to see, sigh).

In this whole weaning process Dominic has lost a pound.  Not impressive, but still an indication that he is burning more calories breathing on his own than he was before.  So, in a moment of stupidity, I requested the dietician to come in to talk about tweaking his calorie needs.  Big mistake.  I guess she did not have time to look through his chart because she came in and informed us, "just so we know" that when kids are sick they sometimes loose weight.  Great, thanks, these parents of 4 had no idea.  Only he's not sick.  "Oh, well all the trauma he's been though..." stops and asks the nurse "we had to give him CPR, right?"  Uhm, no, wrong kid.  Poor thing, at this point surely she was embarrassed at her lack of preparation, so assumedly out of defense she said "Well then WHY is he in the ICU?"  He's on a vent.  There are only two places in the hospital vent kids can go and the other unit is full.  Blank stare.  "Well, all scales are calibrated differently, so that's probably what it is."  I chimed in "nope, he's been weighed on the same scale since admission."  She must not have heard... "the bed scale is different from the infant scale."  Yes, thanks, I know, this bed doesn't have a scale.  After another round of this and leavig the room to read his chart she came in: "Oh, the chart says he's been weighed on the same scale every time".  Yes, thanks, that's what I said.  "Well, he was needing to loose weight anyway, so it's okay."  To which I answer "great, thanks for coming by."  What else could I say?

Fast forward a few hours.  Our normal dietician calls and says not to worry about it either, he needed to loose a little weight.  Cause babies are supposed to be waifs.  Especially breastfed babies.  Right.  I ask her about what type of choleserol I should be adding to his diet, as the frozen breast milk will run out in less than a month and I was really relying on that for the grunt of his cholesterol needs.  Apparently they are not convinced additional cholesterol is neccessary any longer since they don't have a definitive diagnosis, so she says not to add any above what he is getting (opposite advice from a month ago).  OK.  Double grrr.  We KNOW he is not mylenating like he should and we KNOW he can't make cholesterol on his own.  We KNOW his optic nerves continue to shrink, as does the frontal lobes of his brain.  We KNOW his brain is not growing.  We KNOW a healthy brain needs fat.  So tell me again why we shouldn't be adding cholesterol?  Oh that's right, it gives you heart disease.  Well pardon me for being so blunt but when your kids brain is shrinking, MRI report shows his nerves are continuing to get smaller, he's not laying down the FATTY sheaths over his nerves like he should, and frankly we don't know how long we will have the pleasure of this little saint, who gives a damn.  And here's something else while I'm on it.  REAL food doesn't make people fat and sick, crap food does.  There, I said it.  {{Deep breath}}

So, after that explination she continues by recommending perhaps we try formula after the breast milk is done if he doesn't tolerate cow milk.  Do you know me AT ALL!?!?  Let me just say if a mom is gonna exclusively pump for almost a year and go through all the trouble to make everything from scratch for this child, to do all the detailed calculations for every single ingredient in his blended food, down to calories per milliliter (and sucrose, and cholesterol per ml) do you think I'll roll over and play dead that easy!?   Firmly, but politely, I say real people deserve real food and we will not even entertain formula for a non-infant.  We will just have to figure this out with food.  She agreed and we hung up friends.

Afterwards Mike congratulated me on being nice.  All we could do was laugh and remind ourselves why we don't normally ask permission for this sort of thing.  So, there you go, a day in the life.  We can't be too upset about anything right now though.  Our little man is breathing 10 hours a day off the vent and staying nice and pink.  AND we get to come home in 3 days!  As I write I'm asking myself  "is this how a saint would have handled this?"  Probably not.  But hey, compared to what I would have said a few months ago (think bag dog... another story for another night), I did reasonably well.  God bless sweet Dominic, and God bless those dieticians... I'm sure they have their hands full with crazy parents like us.

In Jesus and Mary,
Chasity

Sweet Mary Grace loves her baby Bubba

He's got a good angel

I must start out by apologizing to you all first... if I had any sense in me I would have written this a week ago, but alas, I didn't.  Last week was an eventful one for us at the Short household.  Tuesday morning I woke up at 5 am with kids in our bed so I decided to bring them back to their bed.  After I did this I went in to check on Dominic.  He was sleeping soundly in the nurses arms when not even 10 seconds later the vent broke.  Go ahead, re-read that last sentence.  The vent broke.  It started making an awful wheezing and squealing sound and a panicked alarm with a "HW malfunction" message flashing.  Quickly I grabbed the ambu bag and had the nurse start bagging him while I changed the circuit (tubes that lead from the vent to Dominic).  I had never seen this alarm before so I had no idea what was going on.  When this didn't work I ran into Mike and my room and grabbed him.  The nurse was still bagging Dominic while we were trying to figure out what went wrong.  I called our home health company's on-call respiratory therapist who said she would go by the office, pick up a vent, and bring it right over.  We turned the alarming vent off and just decided to bag him while we waited.  We have a back up vent but I had never practiced with it so I though bagging him would be just as good as going through the trouble to hook him up to the back up.

During the two hours we were waiting for the new vent to arrive, Mike and I sat in Dominic's room, sipping coffee and having a good little date.  We laughed how funny it was to us that we thought this forced time together could count as a date, but it was nice.  After the new vent arrived and we got it up and going we put Dominic on and all was well.  He had done beautifully during those two hours and even helped me bag him for a while :).

Fast forward a few hours.  Our date was over and the nurse and I brought Dominic to his regularly scheduled pulmonology appointment.  It's funny because before we left Mike asked me several times if I wanted him to go (which he normally doesn't do) but I declined saying there would be too many of us in a cramped little doctor's office.  I thought it was just because we didn't want our date to end, but maybe he had a feeling something was going to go wrong.  After the doctor came in and saw Dominic, as soon as she left the room actually, he went into respiratory distress.  His blood pressure plummeted, his heart rate went up to 220 (normally 130) and his O2 saturation went down.  He was pale, mottled, and sickly looking.  I called a nurse in, we started monitoring him, gave him a breathing treatment and cranked his oxygen up.  The doctor came in and immediately called a med alert, summoning a whole crew of people to his room.  She said she didn't feel comfortable sending us home, so she admitted him to the pediatric ICU.  That first day was bad.  He started having high fever, his heart rate too was high and we couldn't bring it down and he just felt terrible.  This is the happiest baby in the world, and he was just laying there crying.  Poor baby.

We were in the ICU for 5 days and since Mike was sick, he was unable to come up but 2 times for a short visit with a mask on.  He manned the house and with my family took care of the other kids while I stayed up there and slept there.  Dominic started to look better the 2nd and 3rd days and by the 4th day was looking like himself again.  We had to monitor him for one more day and we were cleared to go home.  Now he is back to his normal self again, smiley and spunky (when we can manage to wake him up!).  Man, normal life is so sweet after you go into survival mode from having the family split up for a hospitalization.

starting to feel better, but still a little sad

"Don't worry mom, I've got this!"

The doctor said that maybe he had a little virus (he had been having symptoms for a few days prior to this) that weakened his immune system enough to allow a bacteria to colonize his trach site.  The bagging may have been what threw him over the edge.  He is finishing a course of antibiotics now and hopefully we can get that nasty bacteria away from the trach!

We are well aware and humbled that our Guardian Angel's were watching over us.  There is no reason that I happen to wake up at that time and no reason I should have been in Dominic's room at the exact moment the vent broke.  There is no reason we were already at the hospital in the pulmonologists office when he crashed.  No reason except for the protection of God through His angels.  It is so strange that He choose us.

He loves being sang to

4 Friars and a baby :)

Now you see why he is so spoiled

It's hard to feel sorry for him, huh?

And I didn't get a picture of this, but sure wish I had... Dominic pooped on my sisters leg.  Is that TMI?  Sorry if so, I thought it was hilarious!  You can create a mental picture now...

To my PT-self of 6 years ago...

While I am no longer working as a physical therapist, I did practice for 6 years in pediatrics before Dominic was born.  God willing, I plan to go back to work some day, in some capacity, when life calms down and I'm not needed here as much.  I often think about those years when I was practicing and laugh.  A yearning, grateful laugh for the opportunity to see the amazing kids I got to see everyday, and an embarrassed laugh because of some of the stupid stuff I did.  Here is my list of the top 10 things I wish my "now self" could tell my "then self":

#1. Don't lecture families about how important it is to do exercises, wear braces, and make PT a top priority in their life.  They already know all of this but it sometimes literally can't be fit into the day, and honestly, it's NOT the most important thing in their life.

#2. Don't EVER buckle a child into his wheelchair when the mom didn't already have the seat belt fastened and proceed to tell her how important it is to always have this done.  She knows.  You're lucky you didn't just get decked.

#3. Don't talk to the parent like they don't know stuff.  Assume they do and ask them if they would like clarification.  Remember, they are the expert on their child, not the doctor.

#4.  Don't get so irritated when a kid in a wheelchair, or with special needs is a few minutes late.  Your life is not that hard.  You have no idea.

#5.  Don't ignore the siblings of a special needs child... they get ignored enough.  Incorporate them into the treatment as much as humanly possible, or else they may start to fake a limp so they get "special therapy time" too.  :)

#6.  Realize the sacrifice of bringing a kid to therapy every week, sometimes even 2-3 times a week, and make every session worth the time.  If they are sleeping, wake them up.  Use every second of time you have wisely!

#7.  Don't make stupid goals.  Find out what the kid likes to do, and work from that.

#8.  Be a little more understanding that wound care or unpleasant treatments of their child makes the parent want to knock you out.  Stop saying "it's okay, older kids say this doesn't hurt."  Bull, it hurts so just admit it.  Apologize profusely.  Hug their kid.  Apologize again.  Make sad eyes to the mom.

#9.  Give each kid the VERY BEST of you for their entire treatment time.  Even if you're tired.  Even if you have a headache.  Even if you're 9 months pregnant.  Feeling short changed sucks.

#10.  Don't touch, mess with, or push a kids wheelchair without permission.  Their chair is like an extension of them and it's irritating having people act like they have the right to touch it.

If I ever go back to work, I can't promise I will be the best therapist, but I sure will be the most empathetic.

In Jesus and Mary,
Chasity

Brother Timothy Stephen cuddling little man  :)
(Because a blog post without a picture stinks)

Adapted CrossFit

OK, so Mike's most favorite hobby, besides being with me- he, he, is doing CrossFit and learning about CrossFit.  CrossFit is a type of exercise that combines gymnastics, endurance running and olympic weight lifting.  At our house, cars are banned from the garage... that is the CrossFit gym.  And my brother just built a new storage shed in the back to get all of those pesky things like lawn equipment and tools out of the garage gym.  Why am I talking about this?  Let me tell you.  Last night after the big kids went to bed Mike and I watched this video about this high school that adopted CrossFit as their PE.  It featured a teenage girl with cerebral palsy who did awesome in this gym class with adapted equipment and moves.  It was hard for me to watch because this wasn't a patient... this was my kid in 16 years.  In case you don't know what cerebral palsy is, it is a condition that affects the motor movement and coordination of the person, normally due to some sort of hypoxic injury around the time of birth.  Think about trying to reach out to pick up a glass of water from a table.  A person with CP would find this very difficult because they have to coordinate keeping their balance while making just that one arm move, steady the rest of the their body with the other arm by keeping it in weight bearing on the chair, determine how hard to grasp the cup, balance their body that is affected by tone to make sure they don't fall out of the chair, and keep the cup steady so the water doesn't spill.  One of Dominic's diagnoses is cerebral palsy, or CP.  He is not severe, but it is still there, black and white on paper from a physicians consultation.

As a pediatric PT I have treated lots and lots of kiddo's with CP.  The one that sticks out the most was a sweet little boy named David.  I was helping David learn how to do all sorts of things, with the final goal of walking.  He had this reverse walker (it wrapped around the back of him instead of the front so it was very stable) that he would use and he would literally run and pick his legs up and let it roll.  It was always a fight to make him walk, not run and roll.  The tone in his arms was enough that he could hold himself up on the walker while he picked his legs up from the floor and rolled.  Come to think of it now though, I bet that was alot of fun.  No wonder he hated walking with me... what kid wouldn't want to roll around like that?

I'm telling you this for a couple of reasons.  One, I have this stigma attached to this diagnosis from years of treating kids with it.  They can be from functional with just some difficulty with movement all the way to completely unable to do any purposeful movement at all.  I have this face attached to this diagnosis, this body I see contorted like a pretzel, this wheelchair that requires a special seating system due to the extreme contractures and malformations of the body.  But I also have another picture of it and it looks like David.  Happy, mischievous, pestering big brother, "normal" kid who loves to roll on his walker.  And now Dominic.  Sweet, chubby little man who smiles with his whole face, not just his mouth.  Who likes to bury his face in my shirt to cuddle.  Who likes to be held in just the right way, who lights up when the noise of play from his siblings surrounds him.  God is for sure releasing me from all my past prejudices of treating kids with special needs.  You know, the fear you secretly feel that your own kid could ever be like this?  The tiredness you feel after a 45 minute session with them.  Being unable to imagine life with that kid... and not giving it much thought after he leaves the therapy gym.

OK, back full circle... last night the video with the girl with CP doing adapted CrossFit broke down some of those walls I have in my mind.  It gave me hope.  Who knows what Dominic will be able to do as he gets older, but I now know that whatever his functional level is, he will be able to CrossFit with his Daddy and brothers... just one of the boys in the gym.  Just when I feel stagnant, God continues to move me forward.  Giving me hope.  Nudging me to move on.  He is so good and faithful, even to me who is seldom faithful and mostly nonchalant towards Him.  Won't He ever tire of constantly getting my attention?  I don't think so.  After all, He paid a high price for me.

In Jesus and Mary,
Chasity

CrossFit Daddy and Son snoozing

Mary reading my Magnificat

Dom loves being held by Mary... and she is very serious about he job!