The Scrapbook

Stacy e-mailed me a link that had these screen shots of the scrapbook she is trying to put together for Ira. You can click on the thumbnails above to see the picture in more detail. Just a reminder of what she is trying to do:

I'm compiling photos, prayers and notes from those of you praying for Ira. The photos will feature The Wristband, with all the people who've worn it and all the travels it's been on. Send me photos of you wearing the wristband. It's okay if you haven't taken Ira anywhere as exciting as a World Series game. Take a photo of him in your backyard, or at your church, or with your dog. Get creative and have fun taking your pictures. Then send them to me, along with the following information:

1. Your full name or the name of your group
2. Your relationship to the Hays family
3. Where the photo was taken
4. A written prayer or note, if you'd like to have it included with your photo.
5. Put all this into an e-mail with IRA as the subject and send to: cowtownstacy@charter.net

You can send printed photos or digital images, and I'll compile them for Joe, Laura, Sophia and Ira. If you don't have a wristband and would like to participate, click here. We will make the scrapbook available online, so that you can see its progress. If you're uncomfortable with your name and location being posted on the internet, make a note of that in your email and I'll make sure to blur that part out. Thank you for your participation in this project. I am blessed beyond words to be working on it.

Stacy Kocur, Ft. Worth, Texas

Out of Surgery

From Joe:

"Ira came out of surgery at 12:50. Everything went smooth. His face is beautiful. (He's always had some kind of breathing apparatus on his face.) The trach is a bit overwhelming to look at. For the next several days, they'll have Ira quite sedated with arms still tied down. I imagine it will be a week or so before we are given the okay to hold him. We're glad it's done."

Surgery Today

Ira went into surgery at 11:15am this morning...

As with everything there are positives and negatives for Ira to have a tracheostomy. There are numerous negatives the biggest one being the opportunity for an infection entering straight into the lungs from the trach. But the one positive in this is that Joe and Laura will get to end the 62 days (and counting) of not getting to hold Ira. I am sure they won't be able to hold him right away, but they will be able to do so soon after he is stable from the surgery.

Joe asked me to link to something Mike Cope wrote about on his blog today. Mike quotes Edward Fudge concerning healing, and his words are some of the most powerful and true I have ever heard on the topic. Take a few moments to check them out (Click Here).

Not So Good

Today was a hard day for Ira. He is not himself. There is a lot to explain but he won't be extubated tomorrow. The doctors want to add Nitric Oxide to the respitory mix as a preemptive move but Laura and Joe said that they wanted to confer with Dr. Stolar before they went that route. He has been off Nitric for a while and to go back on it would be considered a step backwards.

They are all emotionally spent. Laura's drained. Joe's mom is drained, and Joe feels like he is in a daze. I don't have the right words to express how discouraged they feel right now. Ira has come a long way, but every step forward seems to be met with two steps back at this point.

Ira's Big Test

Ira is doing OK

This is a big week in Ira's fight. The doctors want to extubate Ira this week, possibly as early as Wednesday. It is to the point that they need to decide if Ira needs a trach or not. However, none of them know Ira's respiratory potential unless some aggressive moves are made to find out. At last week's family meeting with the doctors they decided to do a trial extubation.

Ira will have to prove himself. If he isn't able to handle the bi-pap or c-pap once they extubate him then Ira will have a tracheostomy. We are hoping, praying, crossing our fingers, etc, that the extubation goes well. If it does, Ira's hands will be released, they'll allow him to wake up a bit more and, AND, Joe and Laura can hold him again. They haven't held him since December 24. If it doesn't go well, he'll have the tracheostomy, a major surgical procedure, that carries with it a whole new set of risks and concerns.

More of the same...

Ira is doing OK

Things with Ira are about the same, and the same is both good and not so good. His condition hasn't gotten any worse, but it hasn't improved as much as anyone had hoped. It was another very tough weekend. Ira had to be bagged and he was extubated again from throwing up. Adding to this, the 'step down' program for getting Ira detoxed from the drugs he is on is very hard on Ira and excruciating for those who stand by his bed.

One of the families the Hayses got to know in the PICU lost there son early Wednesday morning. It was extremely hard on them, especially Joe's mom and Laura. The similarities between this 11 year old boy and Ira were eery to say the least. This boy's problems weren't a result of a CDH but he had the same lung/heart/pulmonary issues that Ira is dealing with. This boy came in the day before Ira and they had similar journies in the PICU. As this boy was dying on Tuesday night/Wednesday morning, Ira began to decline as well, and ended up having a very hard night. He started de-satting at midnight and they had a hard time stabilzing him. He was bagged several times. Unfortunately this is nothing new really which illustrates the first sentence of this post.

Ira Update

= Good = OK = Poor



Ira is doing OK
I spent Tuesday night with Joe and Ira at the hospital. When I arrived the doctors and nurses (about 7 of them) were busy "putting Ira back together" after he had extubated himself. Joe was looking on the whole scene understandably concerned, but also with a look of "been here before."

Joe and I had a good few hours talking, watching basketball (Duke vs. NC), and eating taco soup. At about 9:30pm Ira started to wake up, and for the next seven hours struggled to calm down and fall asleep. I only stayed until about 12:30am, but Joe was by Ira's bed until 4:30am when the next round of his methadone treatment was administered; Ira succumbed to exhaustion only after he received the medicine that would allow him to finally rest easy.

Personally, it was one of the most difficult and heartbreaking things I have ever seen, and I found myself weak and scared standing by Ira's bedside. I cannot comprehend how Joe, Laura, and their mothers are able to stand by him hour after hour and in moments like this. I guess only the fierce love of a parent and some special indwelling of God empowers them to stand.

To my knowledge Ira had a good evening last night (Allison visited Laura), but still struggled at times in-between his methadone treatments. Thank you for your prayers, support, and grace.

Jason

Taking a break

the fam in PICU
Originally uploaded by joechays.

Please excuse the awkwardness of this photo. There's really no way of getting a good shot in a hospital room. Ira and I look a little whipped from the restless night before. Laura, as always, looks simply amazing. And Sophia doesn't hide the fact that she, along with the rest of us, would rather be somewhere else.

For over a year I have reported on the journey that we have lived. Laura and I have shared some - not all - of our deepest emotions, kept you up-to-date on the latest word(s) from the doctors and given you a look into our theological wanderings. In return, you have prayed for us, thought of us, and given to us. We couldn't be more grateful for the outpouring of love we have received over the past year.

But I need a break. Ira's progress - when there is progress - is in such small increments that having the patience to witness it all is excruciating. As of late what hasn't helped is the thought of, "What can I post on the blog?" If a few days go by and there has been no change with Ira then I start to feel anxious not just for improvement with Ira but also with the knowledge that I haven't posted anything about Ira in those few days.

In light of that extra stress, I need to take a break, but I ask - I beg - you not to break from praying for Ira and my family.

There won't be a total absence of news concerning Ira's progress. My friend, Jason, will post a couple of times a week giving you brief updates along with a thumbs up, thumbs sideways or thumbs down (or something like that) as to how things are goning with Ira and I'm hoping to start posting again in March.

Maybe I'm making this a much bigger deal than it is but, as I mentioned earlier, you have given us so much support that I feel I owe you this explanation.

Our family has prayed this simple prayer over the past year: "Holy Father, grant us peace." I'm hoping to rediscover God's peace this month.

Struggling

Ira spent a lot of his Wednesday awake. Still sloshed a bit but awake. His eyes were open and he followed us as much as possible. And the good news is that he tolerated being awake. No de-satting or anything...until last night. He had a pretty hard night. He is in no kind of diurnal rhythm so last night he thrashed about which eventually led to a couple of de-satting episodes. He struggled much of the night. It all comes back to his dependence on those sedation meds. Addiction is an ugly thing.

They took him for an upper g.i. yesterday as well. The preliminary results show that there is no reherniation. Yeah, the placement of things (intestines, stomach, diaphragm, etc) is pretty screwed but we already knew that. No reherniation? That's some good news.
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I appreciate the conversation the past couple of days. You won't believe what happened to me last night. Ira's respiratory therapist (r.t.) was in the room last night. It was late and I was trying to get some reading done. The r.t. asked, "What are you reading?" I said, "Struggling with Scripture." He looked at me oddly. I then, with much confidence and without a disclaimer said, "I'm a pastor." His reply? "I knew there was a reason I didn't like you."

He was joking, I think...