Still Here

Well, it's been 3 1/2 days since we were told Garrett had only hours, at best 2 days, to live--and they underestimated. They underestimated  the strength of Garrett's will and the Power of Prayer. On the facebook page "Prayers for Garrett Jones", there are over 5000 people signed up to pray at a specific time every night, and those are only the folks on FB.  We have heard of prayer chains and church groups, and people who are not on the computer at all, but have heard of Garrett's plight and pray for him, his family, and the staff caring for him. It's miraculous in itself, and it's very humbling.

We aren't delusional; we know his condition is still critical, and his oxygen levels still dangerously low. Besides praying for him to survive, I also ask God that he not have brain damage, because to come through all this and then to spend the rest of his days in an adult diaper, being fed, would be too awful for words. So I pray for all that I want, because God knows what's in my heart, anyway. 

Those who post on Facebook tell of their experiences of healing; how a 4-yr-old son survived the pediatric version of ARDS (Adult Respiratory Distress Syndrome); how an 80-year-old parent survived it; how a young woman survived it and wrote to tell us.  We've heard from a soldier in Kuwait and one in Afghanistan, and we pray for them in return. Survivors of the Joplin tornado  have sent their prayers. It's an amazing experience. I invite you to go and check it out, and if you feel so led, "like" the page and add your prayers to ours. Because of the sheer volume of responses and comments, I am still posting the updates on the blog for Garrett, to make it easier to sort through.  We've been told of Caring Bridge, but I can't see how that is any more informative or convenient than what we already have.

Neither Frank nor Janell have been back to work yet. So far, their jobs are still available for them, and I pray that continues.  We have set up an account for Garrett's use, for medical costs, and for supplies he will need when he comes home, and checks have been sent for Frank and Janell's use, as they pay at least $6.00/day in parking, and usually eat at the cafeteria or various fast food places around. Frank said he really misses home-cooked meals right now, and that his buns are being permanently re-shaped by the waiting room chairs. Day after day, they go up there and sit for hours, and sometimes they don't go home at night. Their faith is tested; my brother was in tears when he called me at 4:30 the other morning, but he ends almost every post with "Expecting a Miracle". 

My co-workers have been so understanding. Several have offered to work for me if I have to miss a shift, or if I feel like I need to leave. So far I've not had to take them up on it; I have my meltdowns at home. They've taken up money to send my brother, and some others, who signed their card only "from some folks who care", have also sent an envelope of cash for my family. The chaplains sent Garrett $50.00. I can't tell them all "thank you" enough, and it seems so inadequate.

I hope and pray that none of them, nor the 5000+ ever find themselves in a similar situation, but if they should, I hope they call on me for prayers and help. I have a huge debt to repay.

Notes on Garrett

If you've read more than enough about The Tornado and my nephew, and are ready for some other kinds of posts--you'll want to skip my blog altogether for a while.  Nothing else is on my mind right now, though I will say I bought some fabric today to try and make a couple of summer dresses for myself.

I wanted to write about Garrett and what we've been through the past few days, but decided you could better understand it if I copied my brother's last few facebook posts.  Here they are verbatim, no corrections in spelling or punctuation.  Raw.

Thursday, May 26 4:30 pm

We have had a day of soul searching as we know that if conditions don't improve greatly in several areas, we will be forced to make possible life changing decisions for our son. I talked at length with a chaplain here, and her words were simple but clear. Her prayers for us after knowing us for four weeks are that (a) God will do what is best for Garrett and (b) what will bring the most glory to God, whatever that may be. There is nothing wrong with praying for healing, but if His will is not to heal Garrett here on earth, then we are trying to change Gods will. Not impossible, but improbable. She suggests we pray that God will, through our prayers, bring us in line with His will. And that, to me, makes sense. With literally thousands praying for us, I would ask that all of you pray that for us. God knows whats in our heart before we pray. But my prayers will be more effective if they ARE claiming His will, and not praying against His will. Does that make sense? I'm not blessed with articulation, but hopefully I've conveyed my thoughts well enough for you to understand. I'm still believing a miracle is coming, and that is the ONLY thing, according to the Doctors, that will change my Tiny Mans condition.
I do read all comments and messages, but with so many, I can't respond to every one, but please know my appreciation and love for all of you can't be put in words!

Update Midnight Thursday

Today has been extremely challenging. I realize my earlier post was vague, but due to my middle son not knowing about a crisis we were in, and not needing to inform him of it till after he got off work, I could not say anything for fear of it getting back to him before we could talk. Here is what transpired today. When we arrived at the hospital this morning we were informed of the Trauma dept head dr's of the need to put Garrett on dialysis due to worsening chemical imbalances, and early signs of possible kidney distress. The decision was ours, and being blindsided with this life changing scenario was quite distressing. This could effect Garretts quality of life when God allows him to walk out of here. Plus putting him on it will open a whole new world of infection possibilities. After stuggling for a couple of hours and deciding to allow it, the chief kidney specialist was called in and after his study of Garretts case and current evaluation, decided that it was not neccesary today, but could be at a future date. Maybe tomorrow, next week, but not today.
Then at 8PM tonight, Garretts pulse suddenly jumped from 120 to 200 and his BP started dropping. A facebook prayer request blitz happened at that time, thanks to a friend I was talking with when the doctor came to inform us of the crisis. A couple of shots os some kind of medication, and then a jolt from the paddles put him back in stride and 30 minutes after it happened he was back to his normal settings.

So now you are all up to date, and know why the earlier post wasn't more informative. Another days ride on the Garrett Coaster. We know there are more of these kinds of days ahead, and simply ask God for wisdom, strength for the journey, and the peace that passes all understanding. Good night everybody. (or good morning!)

Update Fri. 6:30 am
 Just spoke to night nurse: Garrett had a very eventful evening as we slept. His heart repeated last nights episodes another 3 times....,the cardio specialists were called in and a medication they had used on the first 3 episodes was changed and his last event was at around 4:30 AM. Since his last "shock" to achieve rhythem, his heart rate has stayed in the 90's, his O2 is coming back up in the 60's now, his CO2 is the lowest it's been in a week (almost normal) and he is, as of 6:20, resting. Unbelievable. What a story we're going to have to tell him when he wakes up. More Later

Update Noon Friday
As I write this, They are putting Garrett on dialysis, will be a 24 hr.cycle, and they hope by doing this, it will reduce the toxins that are building up. Kidney function is still at acceptable levels, but chemical imbalances are present.Cardiac Dr never showed up, so we're still in the dark on what is specifically causing it. His current heartrate is 187, and I'm sure God has his hand around his heart because that makes about 14 hours this has been going on. There's a healing coming, just hope it's on this side of Jordan. Father, nothing I can do for Tiny Man but put him totally in your strong arms. It Is Well.

Update 11:30pm Friday

I'm sorry for the late posting, but from about 2:30 till 10:15 we had a steady stream of visitors and it was just a very very busy afternoon! Garrett is on the dialysis and has tolerated it very well. The kidneys were not in crisis but were showing signs of distress, plus toxins building up were possible causes of cardiac arythmia. So he will have 24-7 dialysis until such time as the kidney's functions and creatnin (?) levels return to normal for several days in a row. No idea how long that could take, but just glad he is tolerating it. Improved blood oxygen levels in the later evening hours are a welcome relief, and CO2 levels are now normal. White count level is coming down slowly, but moving in the right direction. His cardiac team ordered a new blood pressure medicine that they feel his body will tolerate better. Several early afternoon attempts to transition him to it were met with rejection, but persistance paid off, and he is close to a complete changover. Heart had to be shocked back into rythem again around 5 pm (5th time in 21 hours), but since then, BP which had been being between 65/60 to 95/65 (yes I said 65/60), when we left was 120/75, and heart rate which had been 185-200 BPM with no rythem had dropped to 80 sinus rythem. (I know I'm not spelling "rythem" right or am I, my brain is fried) A very marked improvement in cardiac function.
I will check his stats again between 6-8 AM and hopefully post a morning report by 9:00. We are normally at the hospital from 9:30 AM till 10PM. If I can figure out a way to bring my grill in and find a deck somewhere to throw a couple of ribeyes on, I will be one happy camper!


Neither my brother nor his wife have been at work in a month. Frank's company has assured him he still has a job, but they are so small, they cannot afford to pay him while he's off. Janell's company has continued her pay so far. I lend my voice to his, if there is an Express Oil Change near you, please give them your business for supporting her during this time.

As always, thank you all for your continued prayers. I don't know how we'd all make it through the day with the love and support of friends and strangers who pray for us.

Roller Coaster

For over 4 days, Garrett was fairly stable, with no adverse events.  Then the carbon dioxide level in his blood reached a critical level and something needed to be done. Since the doctors had not done a bronchoscopy to suction fluid out of his lungs since Thursday, they did a quick in-and-out at the bedside and were successful in removing a lot of junk.  However, to do that, they must take him off the ventilator, and he did not tolerate the loss of pressure well.  He was in crisis mode again, with medication to keep his blood pressure up and a temp of 103.5.

The doctors approached my brother and his wife about what they wanted done if Garrett should go into cardiac arrest.  That is never a good sign. Basically, they said they are out of options; nothing more to offer at that point.

After talking about it, my brother and his wife and son decided the doctors could give whatever medications necessary, but they didn't want chest compressions or cardiac shocks. If his heart stopped, God could take him home, and though that's not what they wanted, they were at peace with it. Local family and friends gathered 'round to wait and pray, and the word was put out that we needed massive prayers.  Again.

Late last evening the doctors decided to switch Garrett off the "pediatric" oscillating vent that keeps a continuous pressure and gives him 3 breaths/second and place him back on the original, traditional ventilator.  He never does well with changes, and I don't think they expected him to survive it, but it was a last ditch effort.

Not only did Garrett survive the switch, he tolerated it without any setbacks, and this morning his carbon dioxide level, while still a little high, is no longer critical. His oxygen levels are still low, but his heart rate has slowed from the 140s to the 130s, and his fever dropped to 102.5.  He is hanging onto the cliff by his fingernails, but he is still with us.

Prayer is a powerful thing.