Wednesday, February 29, 2012

... And there's more...

Yesterday Mike took Dominic to get a hearing test called an ABR (Auditory Brainstem Response) due to concerns that he may not be hearing as well as he should.  He always holds his head turned to the right, and until recently I though he just had a tight neck muscle or maybe just a preference, but recently his PT pointed out (and I had realized this too) that his neck muscles are equal in length.  She suggested that perhaps he is keeping his head turned because he can hear better out of one ear than the other.  It's funny how all of your clinical knowledge flies out the window with your own kids... you can't see your child as a patient, he is your baby, so you miss obvious stuff!

The ABR showed hearing loss in both ears, with the left being a bit worse than the right.  In the low frequencies (which is environmental noise) he has mild hearing loss, in the middle frequencies (speech) he has moderate hearing loss, and in the high frequencies (distinguishing one word from another) he has severe hearing loss.  The Audiologist said that the frequency where he has the most loss is the place people distinguish between words, for instance between "cap" and "cat."  So from what I understand, he will be able to hear talking but may not necessarily be able to make out the words being said.  (I hope I am saying this right, I'm not an Audiologist and my knowledge in this is nill).  Also, they think this hearing loss is progressive/

So, what do we do now?   He is going to see an ENT next week and we will repeat the ABR is a few weeks to see if the findings are consistent then we will move forward with getting hearing aids.  Great.  He will have hearing aids, glasses, and I'm sure as he gets older a walker... my little old man.  But, he will be the cutest, most smiley little old man ever.  I will get him some suspenders and pull his pants up high and he will fit right in at the Senior's Center :).

Dominic with his Daddy... the best Daddy ever made!

Monday, February 27, 2012

Our little soldier of God

Depending on where you stand on the subject, the word "pro-life" means many different things.  For me, before my current life, it was a narrow definition.  It meant people standing in front of an abortion mill praying, trying desperately to save the lives of the unborn and help the mothers in trouble.  It meant voting for candidates who would protect the life of ALL citizens. It meant respecting the inate dignity of all persons, from conception to natural death.  It was the people behind the scenes at the crisis pregnancy centers, loving the moms that come in, helping them through the pregnancy and after with material needs and emotional support.  While it still means all those things for me, it is so much more now.

The birth of Dominic has brought another view of pro-life to the fore-front for me and others who are close to us.  I am faced with the reality that in some people eyes, my son is not worthy of life.  He is not the "perfect child."  He definately is not the "designer baby" spoken of so much in the news.  This is evident by the simple fact that only 10% of babies with Down Syndrome make it to birth... the rest are slaughtered in their mothers womb.  Heck, children with Down Syndrome can do SO MUCH!  They are not reliant on technology to live, and very often they can do many skills leading to a job in their life... they can be "productive."  If they are not deemed worthy of life, Dominic would surely be a throw-away baby in the eyes of those who think this way.  He will not be a "productive" member of society who pays taxes and keeps the economy growing.  And realistically he is a "drain" on the insurance system since his care has so much cost.

His job in life though, I truely believe, is to bring the gospel to others... those who will not go hear it in church or read it in the Bible.  Those who are broken, defeated, calloused.  Those who might confess that killing babies like him in the womb is compassionate and just.  He is so very alive.  He is a living testament of God's mercy and goodness.  What a privledge he has.  What a big job God has given him.  For as long as I can remember I have asked for God to make me His hands and feet, to transform me into whatever he wills so that I can bring Him the most glory.  It is not me, but through me, that He is answering my prayers.  My job is to care for this sweet child of God, to keep him well so that he can do God's work.  His very presence reveals to people God's face.  It makes them ponder those hard questions in life... "why?"  And hopefully it tills their hearts so that God can sow a seed of love in them.  This was made evident this weekend when I took him in public.  People stopped what they were doing and stared.  I did not feel bad, or self-conscious, but rather allowed them to look by keeping my gaze down and keeping myself small.  Perhaps it is through Dominic that they might see God's face.
Such a happy little man with his Father Pio Maria

Tuesday, February 21, 2012

Yeah for Real Food!

We have started Dominic on real food... well, jarred baby food, but real all the same.  This may seem like no big deal to all you momma's out there, but to a momma with a kid who's dependent on a g-button for all of his nutrition, this is almost unheard of.  Like I have said before, the doctors and dieticians like for these kids to stay on formula their whole lives because it is easy to administer through the g-button and they can calculate exactly the nutrition they are getting in a 24 hour period, and quite frankly, it's so easy a monkey could do it (administering it). They underestimate the parents of special needs children, who mostly would do anything, regardless of the difficulty, if it would benefit their child (speaking of the time consuming task of measuring, cooking, blending, and storing real food).

I have heard countless mothers say their child completely changed when they started getting real food.  Duh.  I'll try not to get started on the whole "real people deserve real food" thing... but let me just say this one thing: feeding a child who will never be a "productive" part of society real food rather than formula their whole lives affirms their inate goodness as a child of God and their dignity as a human person.  You are saying that this person, despite their handicapp's, deserves the very best care.  I not only say "despite his handicapp's," but more completely because of his handicapps that it is so important that I help people see his true value in this world.  People are not expendable, and should not be treated as such.  Heck, even dogs get food that has some resemblance of real food (though processed). Whooooo, I'm getting hot about this, I better stop.... As for Dominic, he's a real boy so he'll eat real food (however it gets in!).

Our Vita Mix is on it's way (douple yippee!!!!!) so until the day I can concauct all sorts of wonderful things, we are starting with jarred stage 1 baby food.  So far he has had green beans and squash through the g-button (10 mls 3 x day) and even some by mouth (he passed his swallow study, it's just all coordination now).  Here are some pictures of his very first green beans via g-button!

Saturday, February 18, 2012

I've been avoiding this

There is a reason I haven't written in a while.  I could blame it on being busy, or on taking care of the kids, or I could even fib and say my computer was broken, but that's not the truth.  Last week we got a diagnosis that I have been suspecting for quite some time but it really hit me hard and I just needed time to process and work through it before I could talk about it with all of you. 

I have suspected for a while that Dominic couldn't see much, and he was already diagnosed with Cortical Visual Impairment, or CVI (where the eyes are intact but once the information reaches the brain it is not processed correctly) but last week the neurologist diagnosed him with Atrophied Optic Nerves.  I knew this before I went in for our appointment because I happened to have an appointment the day before with the Medical Records Department to review his charts.  I saw the most recent MRI which showed lots of sucky stuff, and right there in black and white it said "optic nerve atrophy/hypoplasia."  Immediately my stomach sunk.  I didn't know exactly what this meant, but I know what an optic nerve is and I know what "atrophy" means so I put two and two together.

The next day I went to the Neurologist and asked him what he thought it meant.  He made a pained face and said that he thinks Dominic will have significant vision loss.  Like I said I was expecting this as his pupils no longer react to light (he will flinch when the light turns on in the room, but when you shine a light in his eyes, they do not react at all).

There have also been unfavorable changes in the brain, including increased ventricle size and increased signal on the MRI, showing more water than there should be in the brains grey matter.  The increased ventricles, they think, is not due to increased pressure in the brain (which would be hydrocephalus), but because the brain is not growing, thus making more room for the ventricles to grow abnormally large.

Of all the diagnoses he has, this one has really bothered me and I took it pretty hard for a few days.  I always pray for God's will to be done, in all aspects of my life, and especially when it comes to Dominic, but that is easy to pray and hard to live.  I was facing this new reality of a child with visual impairment and what that meant combined with his other multiple disabilities.  And like always, I have these images in my head of all the blind people I have known throughout my life.  How they moved, what their facial expressions looked like, how they maneuvered their environment.

When I was a tech, before I went to PT school, I worked at Children's Medical Center Dallas.  There I would help a therapist every week with one special little girl named Gianna.  She was blind.  For some reason she has always owned a piece of my heart, I was in love with her.  I was always so drawn to her and would make sure I was available to help with her session when she came in.  In college I used to read to a boy who was blind to help him with his homework.  Again, I was always drawn to him but in my selfishness I stopped.  It has always gnawed at my soul how I could have been so self-centered, he needed me and I abandoned him, for what?  I had nothing important to do.  Now I know why.  I God's goodness he has always prepared me for life with Dominic.  He drew me to my profession, of working with children with special needs.  He placed a desire in my heart to get close to blind people.  He has seered images in my head of certain children with severe disabilities, like Michael, the first patient I ever had who died.  I can still see his face, so innocent, trapped in this contorted, broken body.

After I grieved for a few days, I did what I know how to... I figured out how to advocate for this particular disability.  I contacted the states division for the blind and had a meeting with a blind child specialist who then is making referrals to all sorts of different programs.  Yesterday I talked with a Visual Impaired Teacher (VIT) in the school district who will start coming out to see Dominic (they start seeing kids with VI very early because they take so long to learn how to do everyday tasks).

Where am I now?  I still feel the tinge of the diagnosis.  It still makes me shutter a little bit.  I have hope that he will be able to see some but the therapist in me is trying to be realistic and prepare for the worst.  I am learning all about the visual impaired world so I can be the best care taker possible for Dominic.  Mostly though I have forgotten about what he can't, or may not be able to, do.  I see his sweet face, so happy.  Happier than any baby I have ever met  I have to remember that through him I can see God, if only I choose to.  I am thankful for his life, for the lessons he is teaching me and the rest of his family, for the opportunity to, in a very special way, enter into the mystery of our Lord.  To trust.  To believe.  To praise Him in hard times.  What a grace we have been given to be able to do this; we have no strength but He always fills us to the point where we can not contain the love he pours out upon us.

Trusting in our Ever-Faithful Lord,

Monday, February 13, 2012

"Is there hippopotamus in that lake?"

Recently we switched nursing companies due to our old company being short staffed and not being able to give us full coverage.  Our new company is great, as we get to choose our own nurses, and alot of the nurses we have chosen happen to be from Kenya.  To be honest, I was leery at first with the thought of having to deal with a whole other culture and how the communication barriers might affect the care Dominic receives from them.  But, I have been pleasantly surprised!

One big feature I have noticed about our nurses from Africa is how hard working they are.  They do not just sit around on their iPhone if there is nothing to do at that moment with Dominic.  They go clean his room, they wash supplies, they organize... anything to keep themselves busy.  While I have had to do some training for all of them, they are so eager to learn how WE do it, how WE like him taken care of.  They learn fast and consider having work a privilege.  So different from the lazy mentality that some Americans I have worked with have, the "I have to work" attitude.  On the contrary, they think "I get to work.".  We need to switch hours on a shift... no problem.  We need night coverage after a full 10 hour work day... again, no problem.  I try to lift a heavy load, there they are to help.  They interact so well with the other kids and fit right into family life.

Some of the most interesting times are when we are in the car on the way to doctor's appointments.  Here are just some of the things they have said:

-"In Africa, you want to have a baby, you die and the baby dies.  That's just how it is."
-"In Africa, there are no ambulances, you go into labor, if you are middle class, you try to find a ride to the hospital.  Once you are there though, they don't care, the nurse says 'you wanted a baby, now you suffer.'" (no pain meds)
-"In Africa, in my village all children are naked, it's no big deal"
-While on a walk around the neighborhood after seeing the lake: "are there hippopotamus and alligators in there?"  She couldn't believe it when I said no.  She said "In Africa, you swim in the lake, you get eaten."
- last week I introduced one of our nurses to tacos and burritos for the first time, she said they tasted "sweet."
-In my village, they had mud houses... just sticks and mud, very comfortable."
-In Africa, you want milk, you go outside and milk your cow."

I have really enjoyed having someone from a different culture here in our home.  There is always things to talk about and we have a ready-made lesson on different cultures for our kids to learn about!  That's not to say having someone in our house all the time is easy, but I sure can;t imagine doing this without their help!

In Jesus and Mary,

Wednesday, February 8, 2012

MRI results... scared but trusting

Yesterday I had one of those moments where you want to crawl under a rock and hide.  Dominic had gone back for his MRI and I was sitting in the hospital Starbucks pumping (that's right... I pump in public, covered of course) when the nurse from the pre-op room came in and called me over.  I saw him holding the trach that Dominic had in so of course I instantly felt my stomach drop and started thinking all sorts of bad things.  You see, the type of trach he normally wears has a metal coil inside of the tube that goes in his neck, and the rest of the trach is gray and clear.  For the MRI we have to switch it to a all plastic one so the metal in the other trach doesn't make it pop out during the MRI (which uses really strong magnets).  Well, I thought I had put the plastic one in (all white) but turns out I put a metal one in that looked like the plastic one.  I felt like the world's worst mother... if the anesthesiologist hadn't caught that he would have had his trach ripped out during the MRI! 

Anyway, on with the story.  After the MRI, he came out of anesthesia fine and had blood drawn for more tests that the neurologist wanted to run for possible metabolic disorders.  **Side note: the longer I go without working the weaker my stomach gets.  I felt the urge to throw up mingled with the urge to tackle the phlebotomist when she was fishing in his arm for a vein.   Whatever happened to my iron stomach??**  The MRI took so long that we missed our neuro appointment so we had to reschedule for next week.

Lucky for me I already had an appointment set today to review his medical records, and thankfully the MRI report was in.  It showed increased ventricle size from two weeks ago, a narrowing of the cerebral aqueduct and extra fluid surrounding the brain.  I didn't write it down and could not take the report with me today (they have to mail it to me) so I don't remember the exact ventricles affected.  After I was finished with Medical Records I ran into his Neurologist in the hall (luck or divine?).  I told him I just read the report and he said he was going to talk with neurosurgery about what to do.  He said normally the big thing they worry about with increased pressure on the brain is damaging the eyesight but this MRI was able to visualize the optic nerves well (the nerves that go from the brain to the eye) and they are atrophied, so he's not sure if the benefit of a shunt is worth the pain and risk of the surgery.  If they do perform surgery, I think they will place a shunt under the skin that would allow excess fluid to drain from the brain into the belly.

I'm talking bluntly about this, but really I was quite upset today when I read the report.  It's so strange... being on this side of health care.  I can't count the number of reports like this one I have read about various patients, but sitting there in the medical record department, with someone sitting beside me for my 2 hour time frame, reading this was surreal.  I thought of all the kids I have treated that had this type of stuff going on and how I processed the information in such a factual way.  I remember talking with other therapists before going to see these kids in the ICU and just listing off their diagnoses in such a matter of fact sort of way.  I do think I really did care, as did my co-workers, but we had become so accustomed to these awful reports it was just an everyday thing.  Now that it's my kid, it's not so ordinary.

After the hospital visit the two middle kids and I went to mass.  That is just what I needed.  I was reminded of the simplicity of our faith, how all we have to do is open ourselves and allow God to transform us.  He gave me such graces after communion that I felt completely open to asking Him for His will to be done, without any thought of what I wanted.  Just totally open and inviting.  Whatever brings Him the most glory and souls I will happily accept, and I will praise Him for the privledge of being His instrument.  Just as long as I remember I can do nothing, and need not do anything, He can work in me.

In Them,

Monday, February 6, 2012

Another MRI... and me, the sheep

Two weeks ago, during Dominic's last surgery, he had an MRI that showed increased ventricle size.  The ventricles are spaces within your brain that cerebral spinal fluid (CSF) flows through.  This could be caused by an increase of CSF in the brain, or by the brain not growing.  Both of which suck.  Tomorrow we go for our follow up MRI where he will be put under again.  I'm feeling a bit anxious about this... seems like there are three possibilities: #1 no change, no answers, #2 increased CSF that may lead to a surgery to place a shunt (to allow the excess CSF to be removed out of the brain and drain in the the belly), or #3 confirmation that his brain is in fact not growing like it should.  I vote for #1.

My real fear is that we will go for our appointment tomorrow (we go see the neurologist directly after the MRI) and will be admitted.  That would suck.  I hate the ICU (where he always has to stay when he is in the hospital).  I hate the colors... I mean really, who paints a children's hospital light blue and gray.  The floors bug the hell out of me... I wouldn't have chosen those colors and the base boards just don't match.  I hate the noise and the constant cries and beeps you hear in it.  I hate having to go out of the room to use the restroom.  But really I hate the idea that he is so fragile that he has to be in the ICU.  That only specially trained nurses can care for him.  And that those said nurses mostly do things differently (and therefore wrong) than me ;).

I think I'm just anxious.  But I know I should never be anxious about tomorrow, because as they say, "Jesus' got this."  Just when I seem to be wandering off like a lost sheep again, our Shepherd grabs me by the neck with his staff and pulls me back to him.  I always pray "not for consolations, nor for suffering, but for the will of God only."  Lately though, He has given me such a strong burning desire for Him I can hardly contain myself.  I just can't wait to go to Holy Mass and receive Him in the Eucharist.  He is here, I feel Him.  Man, I love being Catholic.

In Jesus and Mary,

One of my favorites... Chubby D sayin' "you talkin' to me!?"

Thursday, February 2, 2012

Decannulation #3... awesome.

I'm not sure how to start this post.  I can't think of anything clever so I will just start.  Yesterday we started with a new home health company which is anxiety producing because you have to learn to trust a whole new group of people.  Dominic gets private duty nursing hours and we have been with the same company since he came home, but just recently we switched to get better shift coverage.  Change is hard.  I have learned  you can never assume what a nurse is experienced in, so this time I have a sort of check list of things I have to watch the nurse do before she is independent.  I spent 2 1/2 hours checking one of the new nurses off on how to do everything last night, including 2 trach changes.  The first was planned; I wanted to see how she did.  The second was soley the fault of this clumsy woman right here.  I tripped over the vent tubing and fell, in the process pulling the tubing off the trach.  He looked fine though so I got back up, hooked the tubing back up, and started to change his diaper.  It was dark in the room, but even with the small lamp I noticed his lips were turning blue and he was struggling.  I flipped on the light and sure enough I had decannulated him.  Awesome.  So, I moved fast and changed the trach and everything was fine.  Phew was I scared.  That would be my 3rd time to do that.  Mike has done it zero times, as has everyone else.  Just me, his clumsy, two left feet having momma.  The first was in the ICU right after he got the trach (before I was trained, I just screamed), the second was in the TCU when we were training on how to care for him, and now here at home.  Awesome.  After everything was done I said to the nurse "well, that is an emergency trach change."  Good training I guess.

It sucked last night for many reasons, but the biggest one was the reminder that he really does need the trach and vent.  It was only out for a matter of seconds but in the short time he turned blue.  I hate the trach.  Well, I don't hate the trach, I love the trach (it is keeping him alive), but I hate what it represents.  I hate that he can't breathe on his own.  I hate that I can't just carry him across the room without pulling 50 lbs of equipment behind me.  I'm thankful it is doing the work of breathing for him.  I hate having someone in our home all the time.  I'm thankful for the nurses though, there is no way I could do it without them.  I'm tired.

In Jesus and Mary,