Day 11... this is when it gets hard

A throw-back to the first 4 months in the hospital when Dominic first got his trach and vent.  He's come a long way, praise God!

The first week of an admission is pretty easy.  Everything is new, you've got enough energy, it's just easy to be nice.  Then you start to get tired.  The restless sleep catches up to you.  The un-natural splitting up of the family wears on all the members, especially the kids.  The little things that are done, or left un-done, at the hands of the hospital employees start to wear you down.  It doesn't take much to crack you.  The little things that are really no big deal are blown out of proportion and you start to feel on the verge of becoming a crazy lady... that mom.  Unfortunately, today I was that mom.

Last night the IV team came in to get a line started on Dominic for his broncoscopy this morning.  Each nurse tried twice and blew all 4 veins they tried.  I finally called the fourth try after she dug in his arm a good 30 seconds.  No matter how many times you see this done to your child, it never gets easy.  This from the girl who has treated kids with nasty, smelly wounds and burns with a stone-cold stomach... I tremble and feel faint and nauseous when Dominic gets an IV or blood taken.  But, you would be proud... neither nurse got punched, yelled at, or booted out of the door.  I've come a long way you see!  Finally just as we were getting ready to go down to anesthesia to see if they could get a vein, our nurse came to the rescue and got an IV started.  Dominic just cried through the whole thing and once it was finished and I picked him up, he passed out with exhaustion.

This morning he had a flexible broncoscopy in his room.  The bronch team filled the room along with nurses while we waited for the doctor.  I felt like a protective mama bear holding Dominic, refusing to let them have him until the doctor arrived.  I sang latin hymns to him while we waited.  Everyone was quiet and he smiled.  The bronch showed he still does have laryngomalacia but it is slightly better than last year.  This basically just tells us he still needs his trach, which we totally expected.

The rest of the day was hard.  Day 11 in the hospital is hard.  Dominic has needed oxygen (no vent though!) for the past 3 days and hasn't been able to maintain his saturation's without it.  This is no big deal I guess, at least he is still vent-free.  In the midst of a killer headache, lying down with my head covered b/c the light was hurting my head, the dietitian came in.  Poor girl, she didn't know what she was walking into.  Day 11 + throbbing head = not a happy momma.  Luckily for her I felt too bad to respond to her claim that Dominic was doing so well with his weight management because we had a dietitian orchestrating his menu.  I would love to have a blended diet-experienced dietitian helping us but alas, there are none to be found close.  When we actually hit a road block I'm going to need to go to Dallas.  I just nodded and slipped my head back under my covers and thought to myself "yep, because all the hard work we put into his food, the calculations we do, the close watching of his growth-velocity curve does no good to him at all."  Crazy.

But as all fairy tales end, so does mine.  My knight came to save the day.  Mike came up to the hospital and sent me home to rest and re-coop a bit while he's on watch.  Thank God for that good man... I sure do love him.

So, here's to another week and a 1/2 in the hospital.  I just keep thinking about the families with kids in for months at a time.  How do they do it?  How did we do it for 4 months?  I can't quite remember, but I do know we were quite tired but sustained by our amazing family and friends as supports.  We can never pay back the time spent, the effort given to us by our support system.  They visit, giving their time, they cook meals, they help with the kids, they pray.  That's how we did 4 months... it makes another 1 1/2 weeks look like nothing.

In Them,
Chasity

Dominic Update- Yeah for breathing!

Because we have had a night nurse almost the whole time we have been home from the hospital after Dominic received his trach and vent, I have not had too many nights sleeping next to him.  You would think a baby with a trach would be quiet through the night but I have learned what he lacks in vocalizations, he makes up in beeps.  My little man beeps all night long.  High heart rate, low oxygen, apnea, too fast breathing, too slow breathing, apnea, leads off.  This monitor here in the hospital is loud too... like waking up to a fire alarm a couple of times every hour!  But, with all that being said, I'm happy.  I'm happy to sleep in the same room as my little man, to see his little feet with one sock on and one sock off rest on top of the bed rail.  I'm happy to hear him squirm and get mad at me when I touch him.  We're still not sure if his problems are genetic, but I can tell you one thing that IS genetic... his dislike of being touched when asleep.  Mike and I both don't play well with others when it's time to sleep... he inherited that from us!

Dominic has been off the vent since Sunday and has just been breathing like it's no big deal.  He has energey during the day which shows he is not too exhausted by the extra work of having to breathe on his own.  For the most part he has been able to maintain good oxygen levels (except last night he needed a little boost).  His good looks are enticing all passer-by's to coo and talk with him and all the nurses can't get over his bright white-blue eyes.

The plan so far is for him to have a bronchoscopy tomorrow where they run a tiny camera down his airway to check the progress of his trachea then on the 18th have eye surgery to correct his ptosis (droopy right eyelid), a MRI, an ABR (sedated hearing test), and nerve conduction velocity test.  This last test is to check how his brain receives signals from his nerves.  They will place electrical impulses on his feet (while he is sedated) and record what his brain does with those impulses (I think...).  This test is because he has hereditary spastic paraplegia (a genetic condition) that often results in the complete non-use of ones legs eventually). 

Anywho, there you go.  I've got a handsome boy, a happy man, an independent breather.  I'm one lucky momma. :)

In  and FOR Them!
Chasity

Vent Weaning Week 1: Success!

Dominic's new favorite toy, Moosey, b/c all stuffed animal names should end with "y"

As I type this blog, my little man is sleeping in his hospital bed vent free with his Daddy watching over him.  We were admitted Monday and have gone down on our hours on the ventilator by two hours each day until we came to today when we completed his last 2 hour stretch on the vent.  We will now leave the vent off completely and see how he responds.

I have no fears about him failing this vent weaning trial because so far he has rocked it like **insert your favorite rock star here**!  He has had a few times where his oxygen levels drop but they pop right back up without intervention... which technically don't count against him.  If he keeps going like he's going, we should be going home vent free within a week!  WooHoo!

I'm exhausted, and you're probably bored so lets just cut to the chase.  Here's what you really want anyway... pictures of the cutest trach baby in the whole wide world!  :)


His speech therapist and PT would be happy... eating mashed potatoes while in the standing frame!

Kisses to Moosey... I was jealous

Aunt Wendi giving him a bath (this is the best picture I could get).  Dom's got my Granny's legs :)

Everyone loves MiMi cuddles!

 Mary Grace putting her shoes on her defenseless brother

And... more Moosey love

A practle guide to starting blended food

This is one spoiled kid!  He gets mom and dad, sister and brother, grandparent, aunt and uncle, cousin and friend love... but ALSO gets Sister love!  Here he is being coddled by a Franciscan Sister of the Renewal :)  (notice the blended food in his tube!  We make everyone learn to feed him, even Religous!)

In my last post my goal was to empower momma's (or dad's) to give homemade blend a try.  I wanted to ensure them it is not as hard as they may have heard from professionals who, quite frankly, have never done it but only have read about it.  Today, I want to give a few practicle tips that may be helpful.

First of all, you need a blender.  If you intend to do homemade blends for a substantial amount of time, you need to invest in a good blender.  The two recommended by blending parents are the Vitamix or  Blendtec.  I know the Vitamix has a medical discount where in exchange for a doctors note of medical necessity, they will send you a refurbished one at a pretty good discount.  But, even with the discount, they are expensive. 

If you can not afford one of these high powered blenders, don't fret!  Start saving now and use your regular old blender in the mean time.  You may not be able to pulverize meat like the high powered blender allows, but you can still make a blend for your kidd-o.  I made baby food for all 3 of our other kids with a normal blender... it just takes a little more liquid and a little more patience, but it can be done!

Secondly, if you want to "lazy-blend" like me and make big batches once a month, start saving for an extra freezer (preferably a deep freezer).  You can find used ones pretty cheap on Craigslist.  I know there are many families who make a blend every day for their kids, but I just can't do this for several reasons: #1 I'm too lazy to do all that cooking, blending, and cleaning every day, #2 I have 3 other kids to take care of, #3 I can't get laundry done as it is.. adding one more thing to my to-do list isn't going to help this, and #4 again... I'm lazy.  I like to make one huge batch for the month then freeze it.

Once you get enough freezer space, place the blend in glass mason jars and freeze them without the lid.  After they are frozen, put the lid on to keep them fresh.  Dominic eats enough that every day we go through one mason jar.  I have the night nurse make the feedings for the whole day (or in the rare case we don't have a night nurse, I make it).  It's super easy!  You defrost the mason jar (the day before or in the microwave that day) and pour the right amount into bottles.  We also make all of the milk bottles so all day we just have to grab a bottle out of the fridge when it's time to eat.  Again, a short cut for those who are lazy/busy/whatever.

My last suggestion: recruit help!  I am lucky enough that my momma helps me make Dom's blend every month.  If you don't have a momma or momma-in-law close, bribe a friend with a margarita.  You can easily do it alone, but a friend and a margarita (or coffee before noon... whatever) makes it way more fun. :)  And besides, everyone wants to help these special kidd-o's... this is a practical way they can!

So, go ahead... blend!

In Them,
Chasity

Blended food... it's not rocket science

Dominic trying out a gait trainer... still a little too small for it!

A few days ago I spoke to most likely the sweetest woman I have ever spoken to about her plight of wanting to begin a blended diet for her precious little girl.  She echo's the sentiments of numerous moms who have contacted me regarding beginning a blended diet for their kidd-o's.  It seems the general consensus from the professionals who are helping with this is one of dread, anguish, and an overall sense of gloom.  The moms (including myself) seem to come away from these professional meetings with a distorted picture of what beginning a blended diet looks like and are trapped under a cloud of gloom thinking this elusive desire to feed heir children real food is out of reach.  Stuck in gloom, that is, until their super-mommy sense takes over and they take matters into their own hands.

Often I receive praise (very uncomfortably I might add) from people who perceive me as some sort of super-mom for feeding Dominic real food.  While the sentiment is kind, the reality is they would do the same thing if they has a tube-fed child and were expected to.  Just as we are all expected to feed our typically developing children good, wholesome, nutritious food, we should also be expected, taught, empowered and encouraged to feed our tube-fed children the same! 

With the exception of the children who require specific diets with very close supervision due to medical complications, beginning a blended diet is not that hard.  If in fact your child does have specific issues that real food would affect, I would encourage you to look high and low for a knowledgeable and supportive dietitian to guide you through, even if this means contacting the woman who literally wrote the book about blended real food (as I did in a moment of despair).  Because Dominic isn't typical and his motor development isn't either, he doesn't fit into any of the pre-made growth charts pediatricians use.  Thus after searching and asking in many different ways for some guidelines of feeding him, I once again took matters into my own hands and now have him followed by a dietitian from Early Childhood Intervention.  All this woman does is come out once a month to weigh and measure him.  We then look at his growth velocity curve and decide if he needs more or less quantity, fat, calories, etc.  I then adjust that next months blend to fit that.

At the urging of our hospital dietitian, I, in the past, made complex spread sheets with everything weighed and measured out to the ounce, charting everything from calories, fat, cholesterol, sucrose, etc. per ml of blended food.  I found this to be a ridiculous waste of time.  My new method of following his growth velocity curve seems to be working much better for us (and is MUCH less work).  As a small example, if he is gaining weight too slow, I increase his meat and coconut oil in the blend.  If he needs to slow down on his growth, I substitute lean chicken breast for roast and cut down on the coconut oil and butter.

I want to give you a brief outline of how we started with Dominic in hopes of empowering you to give it a try!

Just as any typically developing child, you want to start with one food at a time to check for intolerance's.  You can begin to check for intolerance's using jarred baby foods since you won't be using enough to warrant making a huge batch of real blended food.   We have never used a pump for our blended foods, we bolus every feeding with a 60 ml syringe over 15-20 mins (this time got much fasted after introducing real food- less spit up issues).  Some people use a pump, but this seems to be more work than it's worth.  The pump could get clogged, you have to worry about the food spoiling hanging in the feeding bag for so long, and how in the world could you possibly clean all the bag and tubing to ensure safety?  Some people so it.  Not I.  (Side note: often beginning blended foods decreases the need to feed over such a long period of time, thus making bolusing the food more practical.  It also, in our case, reduced then finally stopped his spitting up and reflux).  Here's how we started:

Week 1: 10 ml green beans via med port (in place of 10 mls milk)
Week 2: 10 ml green beans, 10 ml carrots (in place of 20 mls of milk)
Week 3: 10 ml green beans, 10 ml carrots, 10 ml butternut squash (in place of 30 mls milk)
..and on and on until you get a good variety of food being tolerated. 

We continued along this path until we had a good amount of usable food to blend.  He now receives 180 ml blended food bolused 3 x day and 180 ml cow/breast milk mixed with yogurt and prunes 3 x day.  He gets all of his milk needs during his 3 milk "bottles" and gets the grunt of his nutrition during his 3 "solid meals."  Please be sure to consult a pediatrician or dietitian to make sure your child's milk need is being met.  We fill this need with our "milk bottles" between solid meals.  We also do not feed him over night, one more thing the blended food allowed us to cut out.

PLEASE comment  (or e-mail) with questions!  I want to be a resource to any momma's out there to give this thing a try.  I promise you'll be glad you did!

In Them,
Chasity

Vent weaning... round 2!

Dominic with his main squeeze, Bridget (a few months ago)

It's official!  July 1st we will be admitted to the hospital to try to get Dominic off of the vent for good!  This process, from what I understand, takes about 2 weeks.  But if it successful that will be 2 weeks well spent.  We will wean 1 hour a day (we're only on 12 hours a day now) and go down until he is off completely.  Once he is completely off (if he makes it that far) we will be kept in for a few more days to monitor how he is doing with no vent at all.  We're keeping our fingers crossed.

A little while ago, after my mom and I finished making Dominic's blended food for the month, I said to her "I'm already mad about being admitted in the hospital."  She reminded me not to start that way, to be positive and remember this admission is a good thing.  "Don't be that mom," she said.  To which I snarled my lip at her and reluctantly agreed.  This is one of those times a person can either grow in virtue or fall into angry despair.  It seems to be my style to do the latter, but I'm going to try for the former this time.

It's easy to get your panties in a wad in the hospital.  That's right, I just said panties because this expression seems to get at the gist of the feeling.  At first it's not that bad, then it gets annoying, then it's unbearable, then it just pisses you off.  It is irritating dealing with all the various professionals who come in the room at any time they please.  It's irritating gaining 10 pounds from eating hospital food for 2 weeks.  It's exhausting sitting in that little room, doing nothing.  BUT... it is much better than what some of the families on the floor are going through. 

During our last admission I met a mom whose son was in the hospital going on 9 months for a traumatic brain injury.  I used to treat these kids, with little sympathy for the plight of the family I might add.  Sure I felt bad it happened, but I needed to get on with my day.  I never ministered to these people, asking how I could help, or just sitting with them for a few minutes.  I had a full case load and lots of kidd-o's to treat.  It never occurred to me that my presence, un-scheduled, may be a big stressor to them.  I didn't get what a beating being admitted really was.  It was normal, everyday life to see these things.  I would even comment on how the mom might be a little on edge and flustered.  I wish I could slap my then-self and tell her all the secrets I know now.

So, here's to perspective.  To remembering how good we have it.  To allow myself to be stretched- after all it's not I that will do the work of growing in virtue... I just have to consent.  And if you happen to get a worn-out, flustered, fed-up blog from me during these two weeks, feel free to slap me and remind me of that kid down the hall.

A lesson from Miss Jessica

I'll admit it: I'm spoiled.  Like a little child who panics when they can not see their father and runs around frantic until they find him and are assured of his presence, so do I.  But like any good father who will assure their children he will not leave him, so does my Father.  I cling to Him, panicked and lacking faith, asking why He left me.  Of course He never left in the first place, He was just giving me some room to see what I would do, to allow growth.  But I am too small for room, I need constant re-assurance, I need my little hand in His big one lest I doubt.  I can run off for an instant but lacking faith I must constantly come back to make sure He remains, just as a little toddler who is just having her first independence in the safety of her back yard.

And in my Father's goodness, He allows me to remain in this state of toddler-hood, just barely able to walk.  He lets me go, never allowing me out of His sight, but when I am panicked and searching for His face, He races back to show Himself.  So He did yesterday.  After writing about my repulsion and subsequent shame, my panic, my dizziness with doubts and questions, He set up a very special meeting yesterday.  We were privileged to meet Miss Jessica.

Miss Jessica sat in her wheelchair, arms and legs still like stone, her body small and undeveloped from decades of non-use.  Her head supported, giving room for her trach and vent tubing to wind behind her chair.  I walked past her and she lamented about how unfair it was that I had a pager like she did.  He mother patiently explained everyone waiting for the doctor gets one and it is not unfair.  I turned, swallowed hard, and spoke to her.  I told her my name, she told me hers, then I told her I had a son just like her with a trach and a vent at night.  With an adult body and a blessed child's mind she squeeled in excitement.  I brought Dominic face to face, or should I say wheel to wheel, with her and her oohs and ahh's commenced.  She poured over his blue eyes, his blond hair, his little trach and tiny chair.  She was full of delight to learn that his vent is exactly the same as hers.  Then the older kids reluctantly came over, face downcast with eyes shyly staring at our new friend.  I introduced Miss Jessica to them and she went on and on about how handsome the boys were and how sweet and precious Mary is.  Mary whispered Miss Jessica was too small to be a "ba-dult" and I explained she is just like Dominic, only 40 years older.

We sat and talked for quite some time, taking turns between her delightful forced speech (talking with a trach and vent is difficult and laborsome) and the experienced, tired but happy eyes of her mother.  She lives at home with her mother and father and sleeps in their room.  She excitedly told me about her nieces and nephews and it was apparent she gained much happiness from her siblings who had grown and moved out, having families of their own.  She stopped, needing a drink and her mother brought the straw to her mouth.  She was unable to even do this for herself, yet she was happy.  She radiated joy, and if one were to be able to see past the exterior for one instant, one would see how easily she captivates one's heart.  I was sad to leave her when the nurse called us back, wanting to sit and be with her all day if I could.  She was sad to see Dominic go but was delighted that I wanted to take her picture.  She just couldn't believe all of the attention she was receiving.  My Miss Jessica, the face of my Father, restored my hope.

People often say they wished God would just talk to them, just tell them what to do.  He does, He just doesn't use our words, he uses His.  Yesterday Miss Jessica was His words, His embrace, His re-assurance that everything would be okay, that He is near, He is faithful, He will never abandon us.  With Him is safety, joy, protection.  Though we might fear we will drown from the torrent that falls upon us, He is there, allowing us to grow in love and confidence in Him, ready to extend His sure hand to save us before we fall.  I am embarrassed for loosing hope, loosing faith so quickly, but moreover I am joyful knowing that my Father does not despise my smallness.  Just as a father may sigh at the constant need of his children, still he secretly glories over the fact of being needed and the helplessness of his children.  If we panic, we need to only stop and do what I tell my children to do: remain calm and look around, I am never far off.

Sweet Miss Jessica and her buddy, Dominic