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

Here We Go!

This is going to be quick, more details will follow.

Eamon did well, he has his new bow tie, looking so handsome! The day has been long, but filled with peace and lots of love for the prince! I am quite overwhelmed, really, by the kind words, prayers and feeling of community - an Eamon Love Fest!

I am reminding myself, "Do not be afraid...your prayer has been heard." The trach training has officially begun ... a scare, all available nurses/respiratory therapist run to Eamon's bedside, an ambu bag, saline, some serious suction later, and he is fine. Not so sure about the mother! I am well aware that the trach needs lots of daily care, supplies need to be at the ready, and a portable suction machine must never leave my side, but!!! I was not thinking about Eamon being plugged, a color change, and several hands required to clear him .

My grip just tightened, Follow Him. His strength is made perfect in my weakness. I'm feeling so weak, now that's a start!

A New Friend

Betty, Eamon's fabulous nurse yesterday, offered to set up a "dummie" with a trach to let me see, feel, and touch our new normal. She instructed, then gave me the chance to play around with the supplies. She was unable to find the appropriate doll so brought in the next best thing...a friendly stuffed snowman. The snowman diminished the trach's shock factor, so I thought what a great way to introduce Eamon's new look to Maeve and Myles. They too looked, touched, dressed and undressed the trach, taking it all in stride. I am so proud of them and their unconditional love for the prince!

Tomorrow brings about a new chapter in Eamon's unfolding story. The trach suddenly doesn't frighten David and I, apparently M&M either, because the need has become so great. The timing is just right. Eamon's inability to properly exchange O2/CO2, his enormous difficulty handling oral secretions, and the tracheomalacia (a breakdown/weakening of his trachea) have pushed us to any "easy" decision. Eamon's infection is a mild pneumonia, one that would have most children home on an antibiotic. But for Eamon, acute respiratory distress and ultimately failure. To have been propelled to such a crisis, over a somewhat small pneumonia, confirms that his issue is chronic. We have seen Eamon suffer this past month, having reached several critical moments at home, the type that would warrant an ambulance call, tells us the time is now.

I have a special friend, Eamon's PT and the mother of Mary, who graciously and at the precise moment of need called me to say, "Mother to Mother, there is quality - tremendous quality of life with a trach." And, a peace fell over me. Eamon has made his need known. So, when I say we have an anticipation, even excitement, for the potential of the trach, it is because we want to provide Eamon with the right support to allow him to shine. And it would seem, oddly enough, that the trach is an answer to prayer!

Life with Eamon continues to stretch us, individually and as a family. But the miracle, if you will, is that we don't break. God's grace is sufficient, period. I love the image of a child holding out his hand to grab hold of his father as they walk along. That is what I'm doing. Following Him, holding tightly, and extending my free hand behind to Maeve, Myles, Eamon, and to all who amazingly choose to travel along with us.

Eamon has had a fever tonight, but the plan is still Tracheostomy at 12:30pm. Please pray that all the details, everything concerning the prince, would go well. I am feeling a bit of the weight of this procedure tonight. I took a picture of Eamon earlier, because after today his face will no longer be covered. No more nasal cannulas, masks, or taped tubes. The Prince will be seen in all his glory, now complete with a bow tie around his neck!

Change is Coming

I wrote a lengthy post, but lost it somehow. So here is the much abbreviated version.

Eamon is scheduled for a tracheostomy Friday at 12:30. David and I are at total peace with the decision, even a bit excited. The "trach" will provide an access for suction and various respiratory support. There is a mandatory 7 day post-op stay for recovery, and training to care for it.

We make decisions for Eamon as the need arises, always leaving room for God to miraculously intervene. And He does, even when it's by using the hands of a talented Dr. to intubate at just the right time. "All of Eamon's days were ordained for him before one came to pass."

I was missing the prince today. He is still sedated and connected to lots of wires which makes holding him awkward. To be home, without Eamon, seeing evidence of his life all around, makes his absence so obvious. I am so thankful for 2 years with Eamon, knowing each breathe is a gift because we weren't promised even one.

I alerted the medical staff that Eamon has a date with Mickey on the 20th. The Dr. said, "Now we have a goal...Eamon getting his ears!"

Praying for Ears

Today brought much of the same.

Eamon is still intubated, they are trialing lower levels of support. Another transfusion was ordered because Eamon's red blood cells were too low. An arterial line was put in his wrist to provide more accurate blood gas readings and continuous blood pressure updates. They are keeping him sedated.

There is lots of talk as to where we might be headed. Eamon's respiratory status has changed, and the need to step-up his support may have been reached. The idea of a trach is officially on the table. David and I have peace moving forward, should that become necessary. There are so many details and possible scenarios being presented. The discussion has been difficult because the raw reality of Eamon's situation needs to be reviewed. We would so appreciate prayer for wisdom.

My simple desire tonight is for Eamon to be able to get his ears, Mickey ears that is! We are scheduled to leave for Disney March 20th! And, I so want the prince to experience the sights and sounds the Magic Kingdom has to offer! So, to that end, I am starting a prayer campaign of sorts. If I knew how to create a "cause" or "group" on Facebook it would be to believe for Eamon's full recovery making this family vacation possible.

Thank you for your love, support, and contagious love for the prince!

"Now to Him who is able to do exceedingly more than we ask or imagine".... We are believing for ears!

Rest

Tonight, Eamon is resting peacefully after a day that was full of crisis.

We took Eamon to the ER early this afternoon for chest x-rays and bloodwork. It was confirmed that he had a pneumonia. An injected antibiotic was administered because an IV line could not be established - the curse of small, hidden veins just like his Mama. I left David at the hospital to have dinner with M&M, showers and bedtime.

Eamon was moved to the PICU (pediatric intensive care unit), but his O2 levels plummeted causing great concern. He was bagged and set up with cpap. Again, his O2 crashed. At this point a central line was needed to provide access in the event of an emergency. Eamon's blood work showed anemia, very low platelet count, and depleted red blood cells. The overwhelming fright was his blood gas results showing alarmingly high CO2 levels (40 is normal, Eamon's were at 106 and still on the rise.)
It was clear that intubation was necessary to save Eamon's life. In essence, Eamon was suffocating.

Now at midnight, he is resting, a blood transfusion has just been started, various medications are running through his 3 ports, and Eamon is "breathing" easier than he has in quite some time thanks to the ventilating machine.

Can there be "good news" found in this day?! Yes, it can. (Well for starters, I'm still 29!! Love that new math.) The central line, a surgical procedure went smoothly. The intubation process also went quickly. Our family and friends, yet again, gathered around us and prayed for our prince. We are in a safe place tonight, possible sleep will come for us both! An amazing team of Doctors and nurses rallied together to preserve Eamon's life. And, the best part, God chose to allow Eamon to stay here with us, now that is some good news!

If you are able, please pray for Eamon's total recovery, wisdom for the Drs/nurses, and wisdom for David and I. Tomorrow will bring more details about some changes that may be on the horizon.

For tonight, rest is promised!