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

3 things: surgery, vent weaning, genes

Several months ago our geneticist, Dr. Kukolich, said she would present Dominic's case to the annual meeting of geneticist this spring.  We were excited and hopeful that maybe some other doctor out there would see him and have an idea as to what he's got.  Well, she did, and they didn't.  [I just want to say one thing: Really!  You get the most brilliant minds in America in the field of genetics together and they come up with nothing!  Really?!  Phew, I feel better now... back to my story.]  We did get contacted though by a certain physician who is the director of the Biochemical genetics lab and molecular and human genetics at Baylor and Texas Children's who is doing a joint study with John Hopkins who wants to enroll Dominic in a study.  For our part, we will get whole exome sequencing free (where they run his full genome panel).  Mike and I also have to give blood so they can run us.  The goal is to find out #1 what his mutation is, and #2 how it came about (which gene combination of Mike and I created this, or if that even played a part in it).  From what I've read this work is important to be able to diagnose other people and maybe potentially find treatments in rare genetic diseases.  Still some digging about what the research is targeting, but a promising prospect never the less.

On June 14th, Dominic will have surgery to bring his testicles out from his abdomen to where they should be.  There are three options here: #1 do laproscopic and bring them down in one surgery, #2 remove them if they are sick looking or atrophied, in which case he will have to be on hormone replacement for his whole life, or #3 do a two step surgery if they are near the kidneys.  The problem is they have been unable to find them with ultrasound studies, so he will be going in blind.  Our latest ultrasound this week was a flop too, just couldn't find those boogers.  The surgeon thinks they may be up by his kidneys, and if that is the case, this will be a two part surgery, with the second part happening 6 months after the first.  I am concerned about having to weaken the scar tissue that is holding his intestines from twisting (remember the surgery he had a while back where they un-twisted his intestines?), creating a life threatening illness.  Having this surgery though is crucial because when testicles stay in the abdomen for any period of time, the risk of testicular cancer goes way up.  Bringing them down doesn't lower the chance of cancer, but will enable us to feel them so we can keep a close eye on any abnormalities.

While he is inpatient, after he recovers from the surgery, we will stay in the hospital for a possible vent weaning trial.  How much more non-commital can you get here?  "Possible... trial."  Yes, I know, it may not work.  In fact Mike and really don't think there is much of a chance it will work.  Our best case scenario is being able to have him off the vent for a few hours during the day.  I have this fantasy of carrying him around the house, where ever I want to go, without lugging the vent and oxygen with me, worried I will step on his tube and pull his trach out.  Oh, just a few hours a day would be splendid!

Please start praying for some success for the vent trial and total success for the surgery, please!

In Jesus and Mary,
Chasity

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...