All About Ira

Ira seems to be over his rotavirus. The only thing keeping us in the hospital at this point is getting everything squared with home health care. Our health insurance changed dramaticaly this new year so we are dependent on Medicaid to help us once we get home.
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When Ira was home with us he saw a pulmonologist, pulmonary hypertension doc, GI doc and doctor of surgery. Added to that list of docs that we'll see regularly once we leave here is a neurologist. Ira had many traumatic (literally) moments this go-round and we're not certain what affect those had on Ira neurologically.
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Caring for Ira is a much bigger deal now that he has a trach. Since his bout with rotavirus, Ira's needed suctioning at least once every hour. It's not uncommon at all for Ira to get "plugged". Meaning, his secretions harden or are so thick that they plug Ira's trach and he can't breath. It happens without much warning. One minute he's fine, the next minute he's turning blue and his saturation level is down to 50.
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The word is out in the PICU that Ira is going home and so nurses, doctors and respiratory therapists are coming by to bid farewell. It's fun to see them all dote on Ira. Just as we grew to love the NICU staff, we've grown to love the PICU staff. Their care of Ira goes beyond what's required and for that, I am truly grateful.

More Like Christ

I'm surrounded by people who are unlike me. I'm in contact and communication with people who don't look like me, who don't aspire to the same goals I do, who have vastly different backgrounds, who were born in very different places. Name a physical, sociological, mental, economic or spiritual characteristic of a person and I can find it my neighborhood.

This incredible diversity fuels me. It's one of the main reasons we moved to New York City. This diversity also overwhelms me. There is so much I do not know. There is so much I do not understand. In my effort to strive to be more like Christ I'm on a quest to learn and understand more about my neighbors.

It's under this premise that I believe Brokeback Mountain is such an important movie. It has become for me a resource to learn more and understand better the plight of homosexuals. Through the characters, Jack and Enis, I'm made aware that behind our conversations about the "issue of homosexuality" are real people who live in angst due to the intolerance that permeates our culture.

Brokeback Mountain raised my awareness that I still have a long way to go in my quest for the compassion of Christ as it probed uncomfortable depths of my soul. I realized in the watching of the film that my love for all of God's creatures is far from complete. In other words, I was indicted as being one who has allowed intolerance to permeate our culture. I appreciate Brokeback Mountain because it woke me from my slumber and is forcing me to interact with those characteristics of God - unbiased love, unmerited grace, undefinable compassion - that I would rather ignore.

I think this movie is an important piece of art in which we should all engage for the sake of Christ, for the sake of all of God's creatures.

The Fight

We were hoping to bring Ira home last week. Then, on Tuesday night of last week, Ira started throwing up. Severe diarrhea soon followed. On Wednesday night, after 24 hours of constant vomitting and diarrhea, they decided to turn Ira's feeds off. (Ira is still fed via his g-tube.) Ira was given an IV to keep him hydrated/fed. Ira was diagnosed with having rotavirus.

Ira's body immediately began fighting the rotavirus. But because Ira doesn't have the same physical resources you and I have, his respiratory system was compromised while the rest of him fought the virus. He's back on BiPAP.

As of this morning, Ira is still dealing with the diarrhea while the vomitting seems to be getting less. We're not too confident that Ira will make it home this week.

The Line

After ten years of imprisonment and internal exile, then twenty years of banishment to Europe and Vermont after he was stripped of his citizenship for exposing the Soviet penal system in his three-volume Gulag Archipelago, Alexander Solzhenitsyn (b. 1918) concluded, "When I lay there on rotting prison straw...it was disclosed to me that the line separating good and evil passes not through states, nor between classes, nor between political parties either -- but right through every human heart -- and through all human hearts. This line shifts. Inside us, it oscillates with the years. And even within hearts overwhelmed by evil, one small bridgehead of good is retained. And even in the best of all hearts, there remains...an un-uprooted small corner of evil."




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5th Grade Logic

Duke got beat tonight. LSU stung the Blue Devils with an eight point win. So, and this is where the 5th grade sporting logic comes into play, if LSU beat Duke by eight and the Aggies lost to LSU by one, then the Aggies would beat Duke by seven. Cool, huh? I'm a huge Duke fan but A&M is where my heart is, so it's kinda cool to say that my Aggies would beat Duke by seven...according to my fifth grade logic.
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Ira's not coming home this week. He started throwing up on Tuesday night and continued to do so all day Wednesday. He's on IV fluids right now. So, we're stuck for a little while longer. What's a few more days, right? sigh...
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Got interviewed for a local Brooklyn newspaper the other day. The journalist asked, "What are people looking for in a church?" After giving a disclaimer - "Well, people are looking for a wide variety of things." - I attempted to distill the answer into something more tangible. I said that New Yorkers want three things: 1. authenticity 2. a place to experience sacred moments and 3. a place that takes seriously the injustices of the world.

So how would you answer the question, "What are people looking for in a church?"

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Dare I Say It?

Ira's doing really good. Today, Monday, he spent a total of four hours just on oxygen alone. Very cool. And we passed the final test today as well. Every once in a while, the old trach has to be replaced with a new trach. And like everything else, we need to know how to do that. And so Laura went for it today and passed with flying colors. The surgeons looked on as Laura did it. It was quite, um, weird to see a hole in the middle of Ira's neck. Laura and I were freakin' out. One of the surgeons said, "don't worry if stuff spews out of that hole. Just continue on with the procedure." Laura did well, the surgeons gave us a thumbs up and it looks as though we'll be out of the hospital soon. Really, the only thing holding us up is getting everything (nursing, equipment, therapies) in place at home. Let's hope it's this week.
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The church plant in Brooklyn is taking off. We have a leadership team that is propelling us forward. I, as of this week, have an office space in Brooklyn. And different people of the church are stepping up and serving in significant ways. I really feel like the church is doing well and I'm excited about the possibilities.
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I've had several people ask me through the comments on this blog and through e-mail how it is that a Christian can "dig" the movie Brokeback Mountain. Soon I'll give you my take on the movie and why I think it is absolutely important that this movie be seen.

Oh, and for the record (because I know what you're thinking), no, New York has not changed me. I've always found myself left of center. You should see my jump shot. Totally off-balance, always leaning a little left.

Sophia's B-day Weekend

Sophia had a great birthday weekend. It started with the nurses throwing Sophia a party on the PICU floor. The look on her face as they came into the room with cupcakes and presents while singing "Happy Birthday" was priceless. Clowns who regularly visit the hospital heard of Sophia's special day. They came too and sang to her, blew bubbles for her and generally acted silly. It was perfect. Sophia couldn't quit talking about her birthday party at the "hotipal".


The celebration continued on Saturday. We invited three friends over to play, sing, dance, eat pizza and gorge on cake. The party happened because Laura made it happen. Not only did Laura learn how to play a few songs on Sophia's new ukulele so that she could lead the girls through a music class that consisted of using shakers, sticks and dancing with scarves, she also baked a cake in the shape of a ukulele. The woman amazes me. Thank you Laura, for making Sophia's birthday so special.

All in all, it was a good birthday weekend. But it's not quite over. Sophia's aunts are coming in on Tuesday and they'll bring with them gifts from Sophia's cousins. I just love it when a celebration lasts this long. And if anybody is worthy of it, Sophia is. She's endured much this past year.

Can it be?

We've been waiting for some good news around here and we've got some. Here goes:

I'm not one to say I told you so but... The Texas Aggies did it. They beat Syracuse in the first round and did so with authority. LSU is up next and I'm predicting they'll do it again.
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I haven't said much about Ira lately. I guess one of the traits we've picked up from our nurses is that if things are going good, you don't say anything for fear that Ira will hear and take a turn for the worse. I'm not a superstitious person but I've seen it happen. So I've kinda kept my mouth shut over the past week or so. But here's the latest (Ira, don't listen):

He's off the vent and on the BiPAP. The BiPAP gives him oxygen and a little boost when he both inhales and exhales. Tomorrow, Saturday, they will try and put him on the CPAP. The CPAP is a respiratory machine that gives him oxygen with a little boost when he exhales.

So the PICU doc walks in on Wednesday and says, "Ira will probably go home at the end of next week." I forgot that it works that way. That it happens that suddenly. So here we are again, frantically getting ready to receive our boy. Can you believe that? We're pretty excited, scared and so very ready!

One prayer request, our health insurance has changed recently (like within the last two weeks). The new insurance isn't as extensive as our previous plan and the first sign of that is its lack of home nursing care. There are other means (medicaid) to getting that coverage but it will be more difficult.

But let me end with how pleased we are with Ira's progress. He's still on quite a few meds and still has episodes of withdrawal but all in all, he's doing good.
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Finally, our daughter, Sophia, is three today. We'll take her to the hospital this morning. The nurses there have come to love Sophia and appreciate her songs and smiles. They will throw her a birthday party right there on the PICU floor.

Tomorrow, Laura and I will throw her a small party. We've invited some neighborhood friends and look forward to getting to know more Brooklyn folks. The theme of the party is music and Laura will regale the kids with fun songs that everyone can dance and sing to. We got Sophia a ukulele which I believe, is the perfect gift for her.

Sophia, Happy Birthday. We love and adore you. You have held us together over the past year with your infectious smiles, beautiful songs and playful spirit.

Normal Day

My oldest sister found a poem and passed it on to my other sister. And she, in turn, passed it on to me. It speaks so perfectly to what we long for around here:

NORMAL DAY
by Mary Jean Iron

Normal day,
Let me be aware of the treasure you are.
Let me learn from you, love you,
Bless you before you depart.
Let me not pass you by
In quest of some rare and perfect tomorrow.
Let me hold you while I may,
For it may not always be so.
One day I shall dig my nails into the earth,
Or bury my face in the pillow,
Or stretch myself taut
Or raise my hands to the sky
And want more than all the world,
Your return.

Life Goes On?

While living life in the PICU is different in many ways than living life in the NICU the experience of run-ins with other families struggling with their child's mortality is common ground.

I announced in this post that Baby D died in the NICU back in early January. Baby D was born a preemie and a few days away from her first birthday when she passed. I ran into the dad on the elevator a couple of days ago. He was at the hospital to pick up the autopsy report. Despite our socio-economic, racial and religious differences, we hugged each other in a way that was more than a casual embrace.

I've connected with another dad here on the PICU floor. His daughter is 15. She got sick a little over a year ago. The unknown sickness consumed her. She now needs a double lung transplant. The entire family is here spending night after night in uncomfortable lobby room chairs. Despite our age difference, the difference in the stages of life that we live in and our probable difference in outlook on life, this dad and I were able to see into each other's souls and connect in a way that transcends anything I've ever known.

I know that life does go on. I know that Baby D's dad and mom will get back up again and that their journey will continue. I know this family of the 15 year old will eventually leave this hospital and resume life. And I know that my family is already redefining what normal is so that we can press forward but in this moment, at this specific time, it's hard to understand how life can go on.

Life in the PICU and NICU is different but both share this common experience that for a time, life does in fact, not go on.

Prediction #1

My Texas Aggies - seeded 12th - will beat the red-hot, 5th seeded, Big East champions Syracuse Orangemen. Guarantee. Go ahead, mark it on your brackets. You'll thank me later.

Some questions for you to ponder:

1. So do you have any upsets you are sure about?
   
2. Will this be the year a 16th will topple a #1? A 15th a #2?
   
3. Of the #1s, who is most vulnerable?
4. Who is your pick to win it all?
5. Does anyone want to go with me to Jacksonville, FL to watch the Ags play Syracuse? A boy can dream, right?
   

Random News and Notes

Two months of being sedated has set Ira back in significant ways. Currently, Ira doesn't reach out for toys. He's unsure of the function of his mouth. And it's apparent that his muscles have weakened. Frustrating for sure but not hopeless. It will take a lot of work and much perseverance on the part of Ira, our family and his therapists to get back to where he once was.
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Laura and I had a meeting with all the docs this past Wednesday. We put a plan in motion that could have Ira out of the hospital in three to four weeks. They - the PICU docs - pushed and pushed for us to take Ira to a rehab facility before we take him home. We put our foot down and with the help of Dr. Stolar, one of Ira's surgeons, the PICU docs caved. It's not that we are against rehabs but the two reputable ones that are recommended aren't close. And personally, Laura and I are just cocky enough to think Ira's presence in our home will be just as beneficial for him than putting him in some other kind of medical facility.
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Sophia's third birthday is fast approaching. Instead of talking up a party we've been talking up the potty. If you ask Sophia what is going to happen when she turns three she responds by enthusiastically yelling, "NO MORE DIAPERS!"

In anticipation of that day we're doing some trial runs. Last night was a huge night. She poo-pooed in the potty. She was so thrilled. It was as if she discovered the Holy Grail.

Trach Care

So I've been reading quite a bit on how to care for a kid with a trach. One page devotes itselt to precautions to consider. Here's a partial list:

• Use extreme caution with baths. Use shallow water and prevent water from splashing into the trach. Isn't a rite of passage for babies to splash and splash and splash in the tub until their little hearts are content?
• For hair washing, lay the child back and pour toward the back of head, keeping trach area dry.
• No swimming. Sophia will be bummed as she is on the verge of taking her first lessons at the local Y.
• No showering.
• When holding a child with a trach, be sure the chin is up and that the tube opening is unobstructed. Have you seen Ira's chin? He's got like three of them!
• Check with doc before applying any salves or ointments near the trach.
• Avoid powder, sprays or perfumes near a child with trach.
• Prevent foreign objects from entering the trach tube such as water, sand, dust, small toy pieces, etc...
• Avoid sandboxes and beaches. Sophia will be happy about this as she is pretty sure sand is of the devil.
• Avoid chalk dust.
• Watch play with other children so that toys, fingers and food are not put into trach tube. "Little Johnny, get your pinky out of my son's throat!"
• No contact sports.
• Avoid clothing that blocks the trach tube.
• No plastic bibs.
• No necklaces.
• No fuzzy or fur clothing or stuffed toys. I guess this means I can't wear my new fur coat.
• Avoid animals with fine hair or that shed excessively. Okay, so we're going to fib on this one a bit and keep our Lab Retriever who, um, sheds excessively.
• No smoking around/near child.
• Keep the home as free from lint, dust and mold as possible. This one is just funny. Not that we have an apartment full of mold but...
• During cold weather, avoid allowing child to breathe freezing cold air directly into trach. What cold weather? In the northeast?
• No latex balloons.
• etc...

As Bob the Builder and crew would say: Can we do it? YES WE CAN!

The Season of Lent

More and more American born, protestant churches are starting to realize the beauty and benefit of the Christian liturgical calendar. The purpose of the liturgical calendar is to relive events in Jesus' life in real time. The Christian year starts with the season of Advent in late November or early December and ends with a special Thanksgiving Day service.

As many of you know, we are in the midst of Lent. Lent consists of 40 days and if observed, it is an attempt to imagine what it must have been like for Jesus to withdraw into the wilderness. It is a season of soul-searching and a time of repentance. It is a time to reflect and a time to evaluate. Lent prepares us for the celebration of Easter so that we can fully participate in the Good News of the risen Lord.

I started practicing Lent while in seminary. During my first Lent I decided to give up watching TV. I totally forgot that March Madness was just around the corner. D'oh! It was then that my fasting from TV took on more depth. I was glad to realize that most western churches believe that Sundays are inappropriate days to fast and are thus not counted in the 40 days of Lent. In other words, I watched a lot of b-ball on Sundays during that first Lent.

Last year I fasted from lunches and spent that time praying for our unborn son, Ira. I remember vividly those quite moments spent in a nearby church's sanctuary begging God to allow Ira to live.

This year I'm not practicing Lent as an individual. But as a community, Christ's Church for Brooklyn is. We, as a community, have decided to give up a meal at a restaurant or a movie or a play or some non-necessity that we would generally spend money on and instead pool our resources and buy travel size toiletries for a nearby, Brooklyn shelter. The Sunday after Easter, instead of meeting for a worship service, we'll hike over to the shelter and deliver the fruits of our communal Lenten exercise and in so doing, we will worship God.

Have any of you practiced the discipline of Lent? What was your experience like? And, if you were to give yourself to the practice of Lent, what would be hard for you to give up?

Good News

The break from blogging was good. The past month was pretty hard as we were hoping for positive steps forward but instead had to resort to a tracheotomy which seemed to us, several steps backward. This was a huge blow to us but we knew it was best for Ira in the long-run.

While the last month was hard I'm glad to be posting good news this morning. This past Saturday marked Ira's tenth week in the PICU. It also marked the tenth week that we have been unable to hold Ira due to his labile condition. Well on Saturday we finally got to hold him again. It was a monumental task to make it happen but well worth the work. The MasterCard commercial would go something like this:

making sure the vent's settings are good to go: 1 respiratory therapist
checking all the IV lines, the G-tube, the probes: 2 nurses
picking Ira up from the bed with everything in place: 1 respiratory therapist, 2 nurses and 2 parents
holding Ira for the first time in 10 weeks: priceless


smile from Ira: priceless
Originally uploaded by joechays.

what a beautiful day
Originally uploaded by joechays.

And Saturday also marked the first time Ira's worn clothes in ten weeks. He looked so darn cute and Laura loved that he and I were wearing matching navy colors.


the Hays boys
Originally uploaded by joechays.

We still have a way to go with Ira. He still goes through withdrawl from his sedation meds (they turned off two more meds last night -- pentobarb and morphine) and that's a scary thing to witness. His nights are the worst. The past few nights we have been up with him trying to console him as he shakes violently and cries. There are more tests to be done (CAT scan and MRI) and we still need to attempt to wean Ira from the vent.

But, and this is huge, Ira looks the best he's looked since being in the hospital and for that we are excited, hopeful and forward looking.