Lessons I'm Learning Along the Road - Part 3

From deep soul checks to paradigm shifts, I find mothering Maeve, Myles and Eamon to offer ample opportunities for my own growth.

Humility

The nurses who care for Eamon act kindly, seem to genuinely care for the prince, and certainly perform many tasks throughout the day and night. But, I was stopped in my tracks by the beautiful expression of service Nurse Maria bestowed on my son. After a full day of effort from himself, Maria prepared a bucket of warm water, gathered a towel, wash cloth, soap, and cream. Settling in next to Eamon, she began to wash his feet.

I am not sure I could find a more succinct demonstration of humility. Jesus washed the disciples feet - the master bowing before the servants. Divine concepts run contrary to our human ideas. It's better to rule over, get ahead, demand respect...right? Not in God's kingdom. I felt humbled to see Eamon, our prince, exalted in a tangible and utterly loving manner. And, I felt the sting of all those times I have chosen to exalt myself over the needs of others.

Maria's example challenged me to look for occasions to wash feet. And, if you only knew how detestable feet are to me...I have often said I love David down to his ankles. The chance to extend "Jesus" to someone other than myself, remembering fulfillment comes from doing His will.

And He washed feet!

True...Eamon's feet are precious - I do like under-10 year old-feet, but that's another story.

Jumping Back In!

Because I don't know where to begin. My hiatus is hopefully over, but for tonight just a quick Prince update.

A little more than a year ago, I had met with Eamon's "then" neurologist. She was thorough, really thorough, and tossed on the table the idea of a tracheotomy. The thought brought Mimi to tears, David to outrage at the absurdity of its necessity, and me to a "just-kicked-in-the-stomach" feeling.

I followed-up with the pulmonologist, who settled me with a "We are not there yet, May never be there" response. And so, the idea was put away.

This February, Eamon reached his most heightened respiratory crisis - failure to be exact. The idea of a trach was not only on the table, it was the center piece. The ICU Dr mentioned it after Eamon was intubated, but reserved its full discussion for the next day. Well, the next day came early...he walked in the room about 6am. Eamon's labs were back showing chronic CO2 retention that had reached a fatal level. My breathe catches remembering just how sick our sweet prince was.

Ironically the week before the hospitalization, I had gravely discussed the potential need for the trach with Eamon's physical therapist.

And now, we were face-to-face with the decision. Obviously, we chose the trach - a decision that was clear and peace-filled. God had been preparing us.

It has been a long couple of months, lots of ups and downs readjusting to our newest normal , but the trach has brought new life to the prince. He is doing amazingly well! Stronger, more consistently connecting with us, and joy - such joy. There are days, I believe he is trying to get on up and march around the house. He is growing, longer and not leaner, looking more proportioned. His hands are open and reaching, his vision seems more attune, and did I mention the joy. He laughs, belly laughs, smiling most of the day away.

We are so grateful for what the trach has brought to Eamon, the chance to be his best self.

Celebrating at the 4th of July Parade

The state of nursing remains unchanged, but new insurance covering both nursing and equipment is in the works.

Until then, this is the new look of nursing in the Barclay home.

Nurse Maeve, gloved and workin' the stethoscope. Eamon looks concerned.

The Waiting Room

Wow, it has been a long time...I almost forgot I had a blog! Life has been full, to say the least,and I have chosen to keep my words few because truthfully I needed to work through some raw emotions. But I am feeling the wind blowing my wings back open, readying me for some soaring.

Eamon is doing well, in general. We have experienced some increased apnea episodes necessitating the tweaking of ventilator settings and respiratory treatments. He still maintains his breathing (day and night) on room air - an absolute miracle. Eamon is gaining, at his own precious pace, strength in his arms and legs. He is learning to swallow and managing his "oral secretions", a.k.a. drool, much better. We are seeing so much purposeful movement - activating specially adapted toys, scooting around the house, and responding with delight to the people around him. Eamon continues to rest in a peace that seems "other-worldly".

Nursing care coverage has recently changed. Eamon still medically requires 16 hours per day, but we have been reduced to a daily 8 hour shift. This situation poses a great challenge. We are scheduled for minimal night coverage, leaving me as the "nurse-in-charge". I am feeling the effects of sleep deprivation, but believing that increase is coming - soon! Several promising scenarios have surfaced, please pray.

My friend, Super-Nurse-Maria, and I were chatting several weeks ago. She was sharing about a cancer diagnosis her husband was given 6 years ago (he is well today!). She recalled the alarming phone call announcing that life as they knew it was about to change, clearly remembering a sense of calm mixed with excitement that arose in her spirit. She explained that we all are in a "waiting room" of sorts. Life progressing, aware of God - possibly, but not yet face-to-face with Him. Until...whatever circumstance calls you in, no longer waiting for an encounter, but fully present with the One who ultimately orchestrates it all. An intimacy born of trial, depth of knowledge the reward.

The apostle Paul pleaded three times with the Lord to remove the "thorn" in his flesh. Instead of removing the difficulty, God promised a grace that is sufficient and power made perfect in weakness. I have asked God to remove our "thorns", but they persist for reasons I trust to God. Paul even goes on to "...boast all the more gladly about my weaknesses, so that Christ's power may rest on me." and to "delight in hardships and difficulties, for when I am weak, then I am strong."

Feeling weak, but knowing that is the beginning of strength. My soul boasting in the Lord!

Sinking

"If Grace is an ocean, then we're all Sinking." - K.Walker

It is unfathomable, we are incapable, of grasping how God works together all things. Our stories are complicated, yet if you follow closely, they are intricately woven together in the most coherent manner. Today particularly, I am feeling the "lightness" that follows a time of darkness. Joy is a constant, happiness is circumstantial, today my soul is embracing both!

The idea of Private Duty Nursing was a bitter pill to swallow for many reasons. That was before. Our nursing experience has been indescribable. Their compassion, skill, ability to be unobtrusive, has been a tremendous blessing to our family.

One angel, super-nurse-Maria, has been dropped into our lives for such a time as this, for sure. We work in tandem, so effortlessly, as if we've always been together. She is a beautiful example to me and my babies of working, in any capacity, with wholehearted devotion. No matter the task, Maria sets about as if it was her greatest honor. She has taken to doing laundry during the Friday over-night shift. This started as Eamon's loads, increased to include M&Ms', tacking on towel and sheets, culminating in today's blitz - it is all done! Folded to retail-store-standards, and poured over with tremendous humility. Maria believes this is her privilege. To Maria, folding laundry carries equal importance to changing a trach, listening to my baby's heartbeat, or administering meds. See, utter devotion, a tangible portrait of what it means to serve one another.

Imagine my absolute delight last Saturday morning after my house "fairy" worked feverishly through the night while I slept peacefully. I mean really!

Today's sweet surprise!

Oh, and SNM (Super-Nurse-Maria) makes rainbow jello treats for Maeve and her party-goers.

I am overwhelmed that God would allow my family to Sink in this kind of Grace! It is further evidence that to put my whole trust in an unseen, incomprehensible, all-consuming God is the most logical thing I do! I am free-falling, completely leaning into Him, blindly being led, and sure enough, He has "turned the darkness before me into light, and the rough places into level ground." (Is 42:16) These are the things that He does!

Himself, kicking. Yes, using muscles that were flaccid, recognizing cause and effect, and sinking in Grace!

And a Little Child Will Lead Them...

Last Thursday Eamon had a follow-up appointment with his pulmonologist. This necessitated our leaving the house, no small feat lately. One nurse, one mom, one prince, a rolling piece of luggage - aka, new diaper bag, suction machine, pulse oximeter, oxygen (just in case), kid cart seat and stroller base - whew! We were quite a scene in front of the building now trying to upload our gear. I was struggling with
the seat/stroller when an observer offered his assistance. I accepted, rather unlike me. Success was found, and off we went to the elevator. Again, the good samaritans stepped aside, holding the door and allowing us to use the elevator first. That's when it hit me, Eamon brings out the best in people.

After "Ears for Eamon", a group from WaltsBasement.com started to send gifts so Eamon could enjoy Disney at home. Packages from around the U.S. and Canada keep appearing filled with pixie dust and goodies from total strangers. People touched by Eamon, and inspired to do good for another.

Another pair of Ears - personalized to boot!

Mickey, in various shapes and sizes, trached-out for my boy.

Today's box - overflowing with love.

My incredibly talented friend and founder of "Ears", Miss Jodi, created this amazing compilation of pictures, quotes, and comments left on Facebook. Words meant to encourage, heartfelt prayers lifted on our behalf, and strength evident in numbers joined with one purpose - to believe for Eamon.

A sweet friend of my sister, Jenny, is getting married this coming Saturday. She and her future husband, Ryan, have decided in lieu of favors to make a donation in Eamon's name to Mary's Fund. A fund which supports many local special needs children, Eamon being a grateful recipient.

While shopping in Vera Bradley for some Easter gifts, I spotted a rolling piece of luggage. I thought it might work for Eamon's supplies while still being a bit stylish. The price tag was too steep, so I reported the bag was not even for travel but for my son's medical supplies. With just a bit of Q and A, the saleswoman suggested I call her privately so I could utilize her generous discount (50%). Instant friendship rooted in wanting the best for the prince.

Another friend and her husband pray for Eamon daily. He was already interested in medical "stuff", but after exploring trachs and their care has decided to make a career change, going back to school for respiratory therapy.

Little-ones and older-ones lowering their heads to intercede. Food prepared, coffee sent, help in various forms offered, perspectives altered, and choices impacted because Eamon lets "his light shine before men, that they may see ... and praise God".

There is no greater reward than knowing Eamon's life has influence and impacts, for good, the world around him.

Ears, take 2!

Thanks to my friend Miss Jodi, the prince has an actual group on Facebook called "Ears for Eamon". The "Ears" we were believing for Eamon were of the Mickey Mouse variety. Eamon didn't make that trip to Disney, but two sets of mickey ears found him anyway.

On Easter, I subjected my little bunny to a photo shoot adorning his latest "Ears".

Eamon is so patient with me, and doesn't he look dapper for the big day!






Once I started, there was no stopping me ...

Eamon's godfather walked in mid-placement of the pink ears, Uncle Joe was not appreciating the look.

I'm thinking the prince agreed with his Godfather

Maybe this "Ear" stuff will become seasonal, who says we need to be married to Mickey. Any ideas?!

Maeve and Myles were enjoying the silliness from a safe distance - no Ears for them, but dressed in their best to celebrate.

What a Difference a Month Can Make

It started like a normal day.

M&M had school, the prince had occupational followed by vision therapy, nursing from 10-6, dance class, food store - just a normal Wednesday. What was NOT normal was the car that blindly crashed into my side as I drove to pick up the kids. The poor man was so shaken I couldn't possible be mad, it was an accident. My concern was not over the car, but in the delay the incident imposed on picking up my M&Ms. After the police report was taken, the afternoon progressed - off to dance then a quick run to Whole Foods. Conversing all the while with the insurance company, a representative from Special Child Services (the waiver program), and intermittently with David about the extent of the damage. Back to get my dancing superstar, and the race home to relieve Connie, today's nurse.

Again, all normal for Wednesday. But what was NOT normal was the car alarming with news ...Fuel Low. No problem, there was an Exxon close by, but my car said I had 0 miles left. I stop at the light, I can see the gas station through the intersection, when my car died. I ran out of gas! Literally, ran out of gas. I have heard of people-silly, unprepared people running out of gas - but not me.

So there we sat, cars beeping, arms waving, expletives flying - there's, not mine. I calmly called David. He raced to us with a gas tank in hand, flagged down a police officer, and pushed me out of harm's way. My tank was justly filled at the oasis, a.k.a. - the Exxon station. David and I laughed at the scene.

Do you realize how many times my car must have shouted a warning to me - Low Fuel, but I never heard it. My mind is clearly focusing on some other matters. David and I were not even upset with the afternoon events, no one was injured, the car was drivable, and after all - cars are replaceable. Not a normal reaction, but evidence of a perspective shift completely inspired from the places we've walked these past several weeks.

One month ago, Eamon's CO2 level made him "incompatible with life". There were difficult options being presented to us. One in particular was to allow "nature to take it's course". They assured me that Eamon would be kept comfortable. There weren't any promises that a trach would alter the nose dive his health, specifically his respiratory system, had taken.

But oh, what a difference a month can make! Eamon was trached, and continues to strengthen. The prince is NOT requiring supplemental oxygen. He is enjoying his days, sleeping through the night peacefully using the vent, and is most definitely compatible with this life - thank you very much.

I have tried, on several occasions to dress Eamon up in his new Disney shirt, Ears in place, holding the newly trached stuffed mouse. But something always seem to preclude the much desired photo (sorry Jod!) I have not abandoned the official "Ears for Eamon" photos, but wanted to give you a glimpse of his mouseketeer cuteness.

"Hey, what in the world is on my head?!"

M-I-C-K-E-Y M-O-U-S-E!

What a difference a month can make!

Seeing is Believing!

Maeve told her teacher that she has seen a miracle. Mrs. Slootmaker responded with, "Oh really, what was it?" Maeve was quick to offer her answer, "My brother, Eamon, is a miracle!"

Maeve's observation is true, Eamon, against all odds continues to fight the good fight. He had a tremendous day. Having resumed in home therapies, Eamon boarded his scooter this morning anxious to get moving. His little leggers kept kicking Miss Ellen, prompting her to take action - scooter races! Well not an official race, but he certainly exceeded his last high speed and distance. A miracle. Eamon usually takes many weeks/months to recuperate after any illness, literally not returning his strength for some time.

Eamon is still on room air, no oxygen support, day or night. Since December 2007, the prince has required some degree of supplemental O2, everyday. But, now, He is flying solo and his numbers have NEVER looked so good! A miracle, surely!

And the miracle that I see on a daily basis - grace. Grace covering Maeve, Myles and Eamon . Grace custom fit for David and I. Grace given freely. Grace, more than sufficient.

All Miracles for us to see.

Where in the World is ...Eamon Joseph?!

Home. And doing well, really well. So much has happened since last Tuesday, the day we were discharged. Our transition home has been smooth. The details are still being ironed out, but in general, Eamon and his crew have landed softly into our "new normal".

Some highlights from the week for the prince's faithful fan club:

• I, the mother/nurse-in-training, changed the trach the day of discharge. Mostly it was my idea, wanting to experience it with backup. I was supported by 3 nurses, all encouraging me, but not stepping in to assist. It was all mine. Supplies were set in place, I was gloved, and at the point of dislodging the old trach utter panic almost consumed me. I announced the threatening sob, they tirelessly focused me, I took a deep breathe and went for it. The trach slipped out, and the new one slipped in quite easily. This will become a bi-weekly activity.
  
• 16 hours of nursing per day are in effect. This caused me great distress the week leading home, but actually has been wonderfully helpful. The nurses, all pediatric, are great with the prince, M&M, and us. I am heading up all care for Eamon, but am enjoying the camaraderie and support. I have the freedom to run out without packing up all the loot that accompanies the prince these days.
  
• M&M are home, making friends with the various nurses. Myles is thrilled, little brother is home and available for constant handling. Maeve has assumed the role of "nurse". She is cautiously welcoming this "new normal". She so adores the prince, but is a bit nervous with the bow tie. Tonight, was the first time she initiated cuddles with Eamon, somewhat forgetting about the trach, and just laying on the love.
  


• The prince has basically been on room air!!! During the day, Eamon wears a trach collar which provides a warm, humidified mist. If needed, oxygen can be attached. At night, Eamon is hooked up to the ventilator - the LTV 950, sounds like a fancy car - costs as much too! This smart machine offers pressure support on inhalation and exhalation. Most importantly, should the prince become apneic, the vent demands a minimum of 5 breaths per minute.
  


• The nursing, equipment and supplies are very expensive, and not fully covered by our insurance. But there is a season for everything. I have been pursuing various resources to assist us for months, even a year plus. One in particular, the CRPD-PDN waiver (Community Resources for People with Disabilities - Private Duty Nursing), which I started the paper work/interviews/home assessment in September was just approved - March 19th to be exact, right on time for the onslaught of additional costs. God is good. This program requires nursing, to which I was against, but still pursued with the hope of durable medical equipment support. I thought several times, what a wasted effort because I do not want PDN (nursing). But God knew, and provided a means. Oddly, I now can't imagine life w/out nursing. There is a season for every purpose under heaven.

There is more, but I will save it for another day. For now, I leave you with a teaser of the photo shoot I am planning - so stay tuned, Ears for Eamon coming soon!

Ready for some fun!

"With a wink and a smile..."

Happy boy on trach collar

He was out!

But still, so full of joy!

We are Home!

This might be the shortest post, ever... I am so tired, but want to share the good news! Eamon Joseph came home last night around 9 pm! I was determined, so we worked the day long to bring the prince home. What a scene! A hospital room has basically been set up in our living room, supplies lining every available surface. A respiratory therapist, shift nurse, and clinical supervisor all descended upon us as we walked through the door! Colleen and Dane were in the kitchen preparing a delicious eggplant dinner. Amidst the chaos, my normal OCD-self was too excited to be concerned about the dizzying details, I was at peace - my prince was home, breathing well, settling into our new normal.

Thank you for praying, and believing the best for Eamon. M&M are having a fabulous time in Disney, but are looking forward to seeing the mister, mommy and daddy Friday night.

I forgot to mention last week, Eamon did get his ears, even before the trip. Some thoughtful "Ears for Eamon" fans sent a bit of Disney to the prince. Ears, a stuffed Mickey Mouse, books, stickers, pins, etc. - I cried at the sight, so much love for such a little man!

XO

Himself!

The prince made it up and out of bed today. We strolled the hospital pediatric hall, giving us all a much needed change of view!

It isn't the big pleasures that count the most;

It is making a great deal out of the little ones!

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Mimi and I enjoying the Mister.

Fabulous Nurse Betty set Eamon up with portable O2.

Laughing at his three-headed puppet.

Himself!

Still

Yes, we are still in the hospital. Each day this past week brought the hope of discharge, but the plan was repeatedly foiled. Tonight, Eamon is using his "home" vent. We are taking it out for a trial, tweaking as needed. More instruction for David and I tomorrow. Monday the O2 set up and remainder of supplies should be delivered. And then, dare I say Monday late or Tuesday early, we return home!

Eamon is feeling well, looking as precious as ever - bow tie and all, and is acting like himself. He is my little hero - so brave and strong, keeping a smile on his face regardless. I have said to the nurses, Eamon is the most pleasant person I have ever met, hands down.

Maeve and Myles left for Disney early Friday morning. I slept home Thursday night, Mimi had a slumber party with the prince at the hospital. It was a restless night, I woke often, looking over for Eamon, realizing after panic settled he wasn't there. I had a terrible dream that the trach fell out. I was wrestling to slip the new one in while Eamon struggled to breathe. I got up, feeling sick over the dream and the impending reality - my M&M's were leaving for 8 days! I put on a brave front, but final hugs were a bit more than I could bare. Myles looked in disbelief at my tears/crying/impending sob - He probably wondered why an incredible trip to see Mickey warranted all this wetness. I know we made the right decision, but it stinks that this was my best choice!

There is much to do this week before and after the Prince returns home, and I am thankful for the "gift" of time to prepare for our "new-est normal yet"! I am working to be still, steady, and expectant - believing that our prayers have been heard so we need not fear!

Thank you for climbing the hill with us, looking forward to seeing the other-side! xo

Looks like Late Week

We are getting closer! But, it looks like a Thursday/Friday discharge. Eamon is well, smiling, and waiting patiently. The delay is over the type of breathing machine appropriate for the prince. The "vent" is very costly, far exceeding any insurance coverage, so alternatives are being evaluated. These details are taxing. Caring for Eamon, in any capacity, is our joy. But this... exhausting!

Today was St Patrick's Day. A day to celebrate family, faith and our rich heritage. I find so many days are a juxtaposition - joy countered by the hard details of life. And today was an obvious parody. Sun shining, Irish eyes smiling, family gathering while Eamon waits in the hospital, so many changes on the horizon, and I felt the jarring balance of goodness with adversity.

My brother, Jerry, forwarded an excerpt from St Patrick's Breastplate - believed to have been his daily prayer of confession and invocation of the blessings inherent in our walk of faith. It brought me strength for this day, this particular season of life, and spurred me onward when a lament threatened.

I arise today
Through the strength of heaven;
Light of the sun,
Splendor of fire,
Swiftness of wind,
Depth of the sea,
Stability of earth,
Firmness of rock.

I arise today
Through God's strength to pilot me;
God's might to uphold me,
God's wisdom to guide me,
God's hand to guard me.

Afar and anear,
Alone or in a multitude.

Christ shield me today
Against wounding.

Christ with me,
Christ before me,
Christ behind me,
Christ on my right,
Christ on my left,
Christ beneath me,
Christ above me,
Christ in me.

I arise today
Through the mighty strength of the Lord.

The Verdict!

After much thought, prayer, and helpful advice, David and I have decided to let Maeve and Myles go to Disney! They are ecstatic, to say the least. Maeve suggested a date for Daddy and I while they are away. She's still working it, not realizing the deal has been closed. I am thankful that God provided a fun adventure for my M&Ms, at just the right time, allowing David and I to get our new normal officially up and running. Change is on the way!

It would seem that Reality TV is coming to the Barclay 5! Today, I met with the nursing director for a pediatric home care company. The prince is going home, sometime this week, with 16 hours of nursing/per day. Yes, 7 days a week! There are many logistics to address, like where am I putting an overnight nurse. So barring a visit from Extreme Home Makeover, looks like David and I might be sleeping on the pull-out couch.

I felt a real ease after the meeting. We discussed Eamon's long medical history, our family, and my desired hours to be covered. They seem to be very flexible, wanting to accommodate our unique needs. It kinda felt like lifestyles of the rich and famous where I will have a highly skilled nanny! Eamon smiled away, she happened to be quite attractive, my boy is a flirt! Marinna said her nurses will be fighting to get a shift with the prince. He had the charm on big time!

Eamon is doing well. Discharge will probably come early, mid, or late week. Some issues still with what type of respiratory support he will need. Eamon has been using c-pap from 8pm-8am, but has had several apnea episodes. Just something new to discuss during morning rounds. The hospital is quiet on the weekends, with no real progress made until the work week begins on Monday. Funny how we have learned the rhythm of the hospital. I realized today that Eamon has spent, collectively from birth to present, 14 weeks in a hospital setting. I think we are all ready to go home!

PS - We are still believing for "Eamon's Ears", I hear Disney is beautiful in the Fall!

The Reason

Eamon has had a good day! Visitors, smiles, light therapy, and an ease that is characteristic of the prince.

So many people are charmed by our little man, loving him in such a beautiful way. And, many people offer kind and generous words about "how" we manage life with our particular children. I so appreciate that encouragement, but feel a bit overwhelmed by it at the same time. I take one day at a time, often having to remind my heart and head to cooperate. I am incredibly weak, but amazingly that is when He is strong.

We used to sing this song at church. I always loved it, believed the words, but never experienced the depth of it ... until Eamon. What a gift our prince is to me!

"I will bless the Lord forever.
I will trust Him at all times
He has delivered me from all fear
He has set my feet upon a rock
I will not be moved and
I'll say of the Lord
You are my shield
My strength
My portion
Deliverer
My shelter
Strong tower
My very present help in time of need"

A Glimpse...

After a particularly difficult night withdrawing from some serious narcotics, Eamon has found rest. It was decided this morning that a weaning of medication was necessary. Eamon was moved to valium and morphine which will be scaled back over time. C-pap is being utilized for breathing support (on for 4 hours/off for 4 hours). It was painful to watch the prince suffer, so to see him peaceful is a tremendous comfort tonight.

I walked in the room tonight, and as Eamon heard his mama's voice a soft smile appeared. There is no greater gift than to see the prince working his way back. I can hardly wait!

My formal, hands-on training is underway! David and I took a CPR course Tuesday night, and have been given literature on "life with a trach". Today, I worked on suctioning and using an ambu bag. I spent some time helping a dummie clear his secretions. I even suctioned Eamon! The prince was rather patient and cooperative for me.

As we continue into another "new normal", these words reassure me, a somewhat weary traveler feeling a bit "blind".
"And I will lead the blind
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground." Isaiah 42:16

Please know that the kind words, love for the prince, and mass prayers for our family are sustaining. Thank you for walking with us, xo.

A Big Day!

The ENT replaced Eamon's trach today. I am proud to report that I did not pass out from the sight of the stoma, the new hole in the prince's neck. The Dr scoped Eamon finding more evidence of tracheomalacia, a weakening of the trachea, further down the pipe, so to speak. A concern, but not an alarm. Some more training for me followed, but nothing hands on yet.

Once the trach was set, Eamon's sedation and pain meds were dropped - Yay! Next to go was the ventilator, Eamon's breathing machine. He did really well for several hours, but as night fell so did his numbers, breaths were more labored, low grade fever, and incredible restlessness - the likes I have never seen in my prince. He was sweaty, clammy, and cold - all at the same time. Possibly some withdrawal symptoms from the narcotics. Now, smaller doses have been reintroduced to allow for a bit of a wean... and, the prince sleeps.

Respiratory will be back in soon to add a heated humidification and maybe some cpap/bipap through the night. This breathing machine allows Eamon to do the breathing, offering pressure support on the inhale/exhale. So it would seem we have lots of room for tweaking. There is a verse in psalms stating that the Lord gives rest to those He loves...tonight, Eamon and I are looking for a little love.

And, the Disney question still looms. The scenarios currently being played out are:
David goes to Florida with Maeve and Myles; or Maeve and Myles travel with Grandma and Aunt Ginny. I am not sure if M&M off to Disney, while David and I transition Eamon home, is a divinely orchestrated "perfect" solution or my worst nightmare. I feel heartsick for them already.

M&M will most likely do fine. While Maeve discussed this option with Grandma she claimed, "Well, I don't really see Mommy that much anyway." WHAT! Clearly, my daughter has a future calling in legal council. I am absent for breakfast, but pick them up every afternoon, stay through bedtime, leaving for the hospital when all lights are out! Oh, and apparently she doesn't see Daddy that much either. So, it would seem Maeve has a plan

David wants to be home to help with Eamon. Private duty nursing looks to be warranted. New supplies, equipment, and house reorganization could be addressed while my M&Ms enjoy Disney. There would be a 1 to 1 adult/child ratio, I like that. And, I don't believe this would count as our family trip, because 3/5ths of the team would be home. Is this a no-brainer?!

I am open to thoughts, in the council of many there is wisdom. I need clear peace, either way. And, I am confident it will come, speak Lord, your servant is listening!

The Ears are in Question

Eamon's blood work was great this morning..."textbook" to quote the Dr. Now that is a first for the prince. The prevailing theory on O2 drops yesterday is dehydration from the record breaking "movement". He has been so restless. They are trying to keep him sedated, but to no avail. The trach will be replaced on Wed., this is routine post surgery, and will allow Eamon to come out of sedation - wait, is he ?! Cultures aren't all back, thoughts of infection seem unlikely, but the antibiotics will be continue for now.

One surprise visit today from Ms Lisa, Eamon's pt, allowed for some range of motion/stretching. I'm sure this felt great. She brought along an angel light catcher for the prince. During Lisa's pregnancy, while Mary was here, and even after Mary went to heaven people often gave angels to her. Lisa chose to share this special token with Eamon, our angel here on earth.

The question of "ears" was being tossed around today. I thought I should mention the possibility of a change in plans to M&M. Their reaction was surprising. They so want our whole family to enjoy Disney together, I think they would prefer rescheduling so Eamon can go.

Oh, what to do?!

There are several options, all of which fall somewhat short of the perfect answer. Several months ago, long before any trip was planned, someone suggested that we would go without the prince! The idea shocked me. A family vacation without the whole family! "Oh, no," I remember responding, "Eamon has to go with us!"

But today, for the first time, "Ears" started to look out of the question . At least for this trip.

The Prince

Eamon before surgery ...

And, just after...now his face is clear, no wires or masks. Isn't he handsome? The tubes connect to his ventilator, but are temporary. Once he is stronger, and the new trach is put in, weaning him off the machine will be a priority.


Eamon had a restless night and day, sedated with arm restraints, and still he was getting into trouble. Our first victory was bowels on the move, after a week and several doses of miralax, the prince was set free! Too much information, right! But it truly was an answer to pray.

Maeve and Myles came for another visit this afternoon. Myles wanted to chat with his boy.



Now, on the other side trying to get a closer look.



The phone rang, Maeve called from the bathroom, I turned for 10 seconds at best, and found Myles had scaled the bed and was perched atop some rather important tubes. The nurse scooped Myles up before any real harm was done. It was a fun visit!

Eamon's morning blood work was normal! Only one dose of that medication did the trick - buffer system in order. The O2 was even able to be turned down...for a while.

His O2 started to drop, causing the nurse to suction, do chest percussion, raise the level on the vent, all to no avail. The Dr was called back in, the xray showed some increased "issues", and thought that the mass fluid loss from the afore mentioned "movement" was causing present O2 decrease. Eamon's central and arterial lines were checked for infection, and even though results are pending, 3 new antibiotics were introduced (4 total!). The Dr is not taking any chances, Eamon is still too fragile. A third red blood cell transfusion was ordered to help circulate O2 throughout Eamon's body.

There is so much going into his little body. In addition to the antibiotics, there's sedation medicine, pain killer, and blood pressure regulator, IV fluids, zantac, vigabatrin, miralax (maintenance dose), and now benedryl to counteract a reaction to something listed above. Yikes!

The good news is Eamon is finally asleep, resting quite nicely actually. I feel safe with Eamon's Dr, the intensivist, and a group of amazing nurses. The prince is being so well cared for by people who count it a privilege to work with him. Eamon's godmother, Auntie Lisa, brought over some beautiful tulips yesterday. My favorite spring flower. And a touch, or glimpse, of new life fell over the room. Eamon is coming out of winter, I can feel spring is on the way. Even though I can't see the buds yet, I know they are there. Once buried, soon ready to bloom. Hold on, sweet prince, your time is almost here!

Seeing With Our Own Eyes

Mimi offered to sit with Eamon so David and I could spend the some time with M&M. I left late morning after meeting with the team. It would seem that Eamon's "buffer" system is out of balance - CO2 is still too high, electrolytes too low, and bicarbs, produced by kidneys to counteract the CO2, too high. They are using a cocktail of medicines to bring it all back together. Eamon will remain sedated until the trach is replaced on Wednesday in an effort to keep him comfortable. He will continue on the vent, true weaning to begin once he wakes up.

At home, Maeve was just out of sorts. Fussing and crying over such trivial things. I too was feeling a bit overwhelmed until we found ourselves in a snuggle. I asked if she was missing the prince, enough of a probe to get a foot into her world. She started to cry, or increased the intensity of the already present tears, and started to share her heart. Yes, she did miss Eamon - terribly! Seeing his empty crib, toys and equipment made her feel sad each day before school. We commiserated for a bit, had a good cry, and then felt better with a decision to visit Eamon later in the day.

The reunion was sweet, M&M could see with their eyes the answer to many prayers laying peacefully in bed. Certainly, a reason to cry but with gratitude and praise not in fear... sometimes we just need to see with our own eyes.

I will post some photos tomorrow, so you too can see with your own eyes ... "oh, taste and see that the Lord is good!" Psalm 39:8