Reflections - 8/21/09

Well, we've been home for a few days, and life is starting to look a little more like normal. Jenna is very tired, still pretty fussy, eating a little better, and tottering around on her own (with no falls). Just in case your wondering, these are not complaints! Thank you, Lord! Jenna IS home, she has all her fingers and toes, she is NOT on peritoneal dialysis, her kidneys continue to improve, she does NOT have a feeding tube, AND she is on NO medication! I just shake my head in amazement, and repeatedly say "Thank you, God".

While at Mass this past Sunday, I found myself repeatedly saying "Thank you, God", and thinking about things. Some of these reflections have been working on me for a while. As you can imagine there is a lot of time for reflecting when you are hanging out in a hospital for 31 days. However, while at Mass, I figured out (nudge by the Holy Spirit) it was time to share some of these thoughts with all of you.

First of all, if you're ever feeling bad or sorry for yourself, just drive over to Cincinnati Children's Hospital and just walk down the main corridor. You will only have to make 1 trip down the hall to understand why this is the best cure for feeling bad about things. We take so much for granted! I also realized during 1 of my many walks down this corridor, that there is a small city's population worth of sick children and families at Children's that the rest of the world has no clue about. So please, try to include them in your daily prayer intentions. I know I have tried to not forget them in mine. And, I try to remember to ask for special blessings and Grace for all those healthcare professionals taking care of the sick kids, and ALL the employees.

"I don't know how you're doing it" or something like this has been said several times throughout our journey, and all I can say is it is not US. Through all of you, and your prayers -- God has granted us much Grace and strength. However,we also came into this trial with a strong Faith (partially due to the growing that occurred around the time of Jenna's birth/heart failure/open heart surgery). I highly recommend investing time into your spiritual journey now (if you don't already). Don't wait for a trial to grow in Faith. Much of this journey, for me in particular has been about TRUST. It continues to be about TRUST. This journey is not over, and we continue to learn and grow...

Some other things that have kept us going are:
*Receiving the Eucharist. My dad often brought Communion to us in the hospital. After receiving Jesus, I would often put my hands on Jenna and pray, "Let my hands be Your hands, Jesus. I know and believe, that just one touch from You can heal Jenna."
*My Rosary was always in my hands or in my pocket. What comfort and strength I found in that. For all of you out there who do not understand the power of the Rosary --praying the Rosary is basically praying/meditating on the Gospels. There are 20 Mysteries and each one focuses on an aspect of Jesus' life - from Incarnation to Ascension.
*This blog was very therapeutic for Luke and I. Putting our day to words, and feeling the support and prayers of all of you was just so overwhelming. God bless you all.
*Knowing that NO MATTER WHAT, God would make GOOD come of this, and that by staying centered on Christ, this cross that we were carrying would bring us closer to Him.
*We had the Bible close at hand, and several books were handed to us as possible sources of strength and inspiration. For those of you who know anything about Padre Pio...well, let me just say, that God's hand was definitely at work in bringing that book to me during this particular trial. WOW, what a wonderful Christ centered example for all of us.

People now ask, "How is Jenna doing...How is it at home?" All I can say, with my face beaming is "God has been so good to us!" We are so blessed! Boy, what a journey it's been! Wouldn't wish it on anyone, and truly hope we don't have another journey like that, but a lot of good has come from it so far. Luke and I know that God has big plans for Jenna, and maybe for our family. We just pray that we are attentive to God's calling.

A friend who came to visit told us he relied on this verse heavily during his own trial (thanks Brian) and we cited it in one of our first posts. It continues to be very relevant...
"Trust in the Lord with all your heart, and do not trust in your own understanding. Agree with Him in all your ways and He will make your paths straight." Proverbs 3:5-6

Thank you again for all of your prayers and support. Our journey is not over, but we have certainly entered a much smoother (no roller coasters, and no bumps!) section of road. God Bless all of you and continue to EXPECT GREAT THINGS!

08/17/09-"He had a hat!"

Ok. Have you heard the one about.....
A grandmother is watching her grandchild playing on the beach when a huge wave comes and takes him out to sea.” “She pleads, ‘Please, God, save my only grandson. I beg of you, bring him back.’ With that, a big wave washes the boy back onto the beach, good as new. The grandmother looks up to heaven and says, ‘He had a hat!’ ”

Missy and I actually read that joke in a Readers Digest while sitting outside Jenna's ICU room while she was having a little operation a few weeks ago. At the time, it was funny but not meaningful. Now with a different perspective, I understand.

Just a few weeks ago she was fighting for her life. Due to lack of circulation victims of septic shock often require amputation of fingers and toes (hands and feet too). At that time, Missy and I had a conversation about how it was more important for us to just get Jenna back alive and we could deal with the loss of a few appendages if that had to be part of the deal. We wouldn't like it but we would deal with it. To put it lightly the drama was high and the future was really, really unknown.

Now we are at home and the troubles are much smaller. We are fretting about Jenna being lethargic, with a low appetite, not walking well and a bit sad. These are all issues that will resolve with time and we just need to quit worrying. In fact, Jenna had an appointment today with her kidney specialist, Dr. Jens Goebel. He is a really cool doc that proudly wears a Pumba stuffed animal on his stethoscope. Jenna's blood tests indicate her kidneys are getting back to normal!

God has brought little miss Jenna a long, long way from the depths of the ICU. We have every reason to believe that she will be 100% Original Jenna at some point and if for some reason she is not, that's Ok too. We promise to not be the unappreciative lady on the beach saying "He had a hat!"

We ask for your continued prayers for Jenna's complete recovery. We ask that you also pray for Nate Zembrodt and all the kids at Cincy Children's. Don't forget to enjoy your time in prayer. Many people have told us that this experience has allowed them to rediscover the blessing of prayer. Thank you for your time, interest and support. We will say these same prayers and some for you too. Have a great day and continue to EXPECT GREAT THINGS!

Romans 5:3-4
We are glad for our troubles also. We know that troubles help us learn not to give up. When we have learned not to give up, it shows we have stood the test. When we have stood the test, it gives us hope.

8/12/09 The Call is.......SAFE at Home

That's right sports fans, the redhead rounded third and did a Pete Rose headfirst dive right through the catcher and was called SAFE AT HOME! At about 5 pm today Jenna arrived at 5 Barbara Circle to the open arms of her grandmother, great grandmother, Ben, Kate and Jacie.

31 days in the hospital - 30 at Cincinnati Children's. NOW WE ARE HOME! THANK YOU GOD.

Jenna has won the hospital game and now has to do some "off season" type work at home to achieve full recovery. Recovery at home will involve playing with Ben, Kate, and Jacie to get strong and safe, sitting down around the dinner table and eating all the wonderful food that continues to arrive (May God Bless all of you abundantly), AND watching the sun come up and go down, and learn how patterns of sleep are related to the sun! All MINOR things compared to where we could be right now and where we've been. Again, we thank God for all of Jenna's progress.

It's been a long, good day of hurry up and wait. We have said our prayers of thanks and will do so a few more times tonight. Jenna is still very fragile. Please continue to pray for her continued progress (with no setbacks). Please continue to remember the staff and all the kids at Children's in your prayers (especially Nate Zembrodt's surgery tomorrow). Thanks to all from 5 Barbara Circle. (We will write a bit more later.) Continue to EXPECT GREAT THINGS!!

Countdown to discharge...

Jenna is doing so good they are talking about home. They have decreased her taper medicine (the ones helping her survive the withdrawal from the big ones) and so she has been more awake, like the "original jenna" Luke mentioned in the previous post. The taper medicines, originally were scheduled through next week, but today, because they've tapered them so quickly, she will get NOTHING. Pray that she handles this well!

We are also praying, that now she is more awake, that she will start eating more. She still has a feeding tube through her nose, and is getting "tube feedings" through the night to make sure she is getting all the nutrition she needs to heal. The past few days we've been trying to transition her to drinking this feeding (PediaSure) so we can go home tube free. She has been wanting to drink, but still not much interested in eating. You've heard about some yogurt that she's eaten, and that's been about it until last night, she ate 2 pieces of french fries! This was the first thing she ate that she actually had to chew!

Last but not least, Jenna is working on getting stronger! PT and OT work with her once a day, and she is now able to walk with holding 1 hand (sometimes needs 2). This is great progress! When we left ICU, she was not able to sit independently. The rehab team came to look at her to see if an inpatient stay may be best for Jenna. That would be 3 hours of PT, OT, and Speech. But Luke and I, and Dr Deis thought that Jenna's best therapists would be Ben, Kate, and Jacie! So our next room change will not be to the rehab floor, but to home! Thank you, God.

So hopefully today, Jenna and I will be drinking lots, hanging out with therapists, playing in the play room, and taking rides on the cool wagon car they loaned us, because I am counting on a day of being wide awake.

God Bless your day - continue to "pray unceasingly" for all those in need - and remember to EXPECT GREAT THINGS!

"Because of this, I say to you, whatever you ask for when you pray, have faith that you will receive it. Then you will get it." Mark 11:24

8/9/09-The return of the "Original Jenna"!

Yesterday afternoon at about 2pm a change occured. Jenna (all of a sudden) was finally back to herself, back to "Original Jenna".

The docs reduced the withdrawal related medications the day before. At about 2pm yesterday it was like Original Jenna walked out of a fog into our world. Her speech was largely intact. Her smile was back. She enthusiastically greeted her brother and sisters by name with BIG hugs! What a day it was! She does not feel well this morning and is much less "herself" mentally and verbally. I suspect that adjusting to the reduced rate of medicine will be a bit of a "lumpy" process. At the very least, we are very grateful to see that "Original Jenna" is still inside. We are optimistic and hopeful that O.J. will become more common in the next few days and will stick around permanently in the not too distant future.

She got out of her room for the first time yesterday for a ride on a little car/wagon down to the cafeteria for dinner with our family. All 6 of us were reunited for the first time in a MONTH. That's right, as of today we have been in the hospital for 1 MONTH. We are unbelievably thankful for the progress Jenna has experienced, but are ready to get home. They are talking about sending us home perhaps mid to late next week. Jenna will dictate the schedule. We want to stay just as long as Jenna needs it, but not a minute more.

Just to be clear, we definitely believe Jenna was the recipient of a miracle. In looking at the list of Biblical miracles, it seems they were performed/granted for 2 reasons:

1. For the benefit of the individual & their family.
2. To deepen the understanding of this world and the next world for all those that witnessed it.

A miracle by definition is something that natural law can't explain. Some are more dramatic than others. One minute a person is can't walk, the next minute they can. Other miracles are a bit more cloaked within the folds of normal life. Jenna's miracle was cloaked in the frenzy of critcal care medicine. She was going downhill fast. Missy and I engaged in frenzied prayer for a couple of hours. While Missy and I were engage in this prayful session, the docs (somewhat in a last ditch effort) tried a certain blood pressure drug again, that previously hadn't worked. This time it worked. While recovery has been a rollercoaster ride, the news from that point forward has largely been good. Because the miracle was within SOME of the processes of medical science, doesn't make it any less of a miracle.

The miracle itself shakes people up. It gives you a glimpse into the world of the "unseen" and reaffirms there is a lot of stuff going on just out of our sight. These tangible testements to the unseen, hopefully draw us back in, closer to our Creator. I think He wants the best for us. Bringing us back in the fold with a few of these really remarkable experiences, help us reorder our lives into God's order of importance, not ours. It seems to me that the human experience is better for us and those around us when we follow the rules in the owners manual.

Jenna (and her family) are certainly the primary beneficiaries of the miracle. However, I believe Jenna's miracle (whoever is out there in Blog land reading these ramblings) is for you too. If you believe like we do that this was really a miracle, tell somebody about it. These experiences are rare. It may be jsut the thing they need to hear. I also request you contemplate how this experience has touched you and spend a few moments in silence and see if there aren't a few "whispers" in that silence that might lead you to the next part of your journey.

Thanks again for keeping us in your thoughts and prayers. Thank you for visiting. Friendly smiles and tales of life outside the hospital "bubble" make the days go faster. Thanks to those helping keep the "home fires" burning with grass cutting, gutter cleaning, meal preparation, and shuttling Ben, Kate and Jacie around. We are forever indebted and connected to each of you.

Please continue to pray for a full recovery for Jenna (and all the kids here at Cincy Children's) and patience for us as we appear to be walking towards the finish line of Jenna's exit from the hospital. She will probably need extensive rehab after leaving the hospital, but getting back home will be a HUGE milestone on the return to normalcy. We continue to EXPECT GREAT THINGS (and so should you)!

8/7/09 Not Much Going On

Jenna slept most of the day. The medicines she is on to deal with her drug withdrawal issues make her sleepy. While her kidneys are continuing to improve and the docs don't think she needs additional dialysis, her blood is not very clean due to the reduced kidney function. The toxins in her blood have taken away her appetite and also make her sleepy.

We seem to be in an "in between" time within the healing process. She can't increase her strength much until she is awake more. She can't be awake more until her medicines are tapered more and her kidneys are better. So we are in a time of slow progress and patience.

We continue to thank you and ask for your prayers for a full and speedy recovery for Ms. Jenna. We humbly request continued thoughtful prayer for all the kids at Cincy Children's and their families. Thank you again and continue to EXPECT GREAT THINGS.

8/6/09-Fins Up!

Executive Summary: Jenna ate a full cup of yogurt and a couple of Jello cups today. She had 3 therapies of different flavors with different degrees of success.

Here is the the possibly rambling commentary that goes with the progress:

For those of you that know Missy well, you know her to be a HUGE fan/follower of the often misunderstood, modern day prophet.....a Mr. James William Buffett. Rev. Buffett draws crowds that rival the Rev. Billy Graham most every Tuesday, Thursday and Saturday throughout the American Summer. This revival is complete with wine, offerings of the sort some may find a bit tasteless and an "alter call " of sorts for those Protestants in the audience.

"What in the world does this have to do with the redhead?" you might ask. Well, the misunderstood part of Rev. Buffett's ministry is that some people falsely believe it is about excess (in most of the better forms of excess available). In fact, it is about Love and carving your own way (sometimes a different way than most) in a mixed up world. I think the redhead (and our relationship with her) is a lot about Love and carving a different path in a mixed up world.

Well, truth be told (confession...see this is spiritual..kind of) I am the more reverent follower of Rev. Buffett. Better known to most just as Jimmy. In fact, St. Missy and I had tickets to the annual revival/concert this evening. (She accompanies me to fend of the evil spirits.) Instead of attending the revival I find myself in the hospital keeping the redhead company and Missy is riding herd at 5 Barbara Circle. We are both very happy in our roles. Just a few days ago it was unclear if the redhead would continue with us in our orbit around the sun. When viewed with that perspective, I am actually ECSTATIC to have the opportunity to accompany the redhead through another night at this fine hospital (bad bed, noisy pipes and all).

If you are tired of seeing song lyrics as a source of inspiration quit reading now.....Ok for those of you still with me I really like the expert from Rev. Jimmy's "Coast of Carolina":

After one or two false starts
I believe we found our stride
And the walls that won't come down
We can decorate or climb
Or find some way to get around
Cause I'm still on your side

Well, in my view that is kind of the way we handle stuff with Jenna. Basically, we and Jenna will just "find a some way to get around" the obstacles or if that is not possible, we will "decorate" them and live as comfortably as possible with the obstacles in our mist.

Through the power prayer (mostly from you and some from us) and the hard work of the docs here Jenna continues to make progress! We have heard the first hints of "when will we get her out of here?" today. The powers that be are starting to say.....the middle of next week...perhaps. For those of you keeping score that is 4+ weeks in a hospital for the redhead. Geez....1/12 of a year+! When they do send her home she will still need to work extensively on rehab and finishing her withdrawal from narcotics. So..."it ain't over till it's over", but stepping away from the hospital will be a big step forward!

So, please continue to keep Jenna and all those kids here at Cincy Children's in your prayers. Please give God thanks for the remarkable progress and ask specifically ask him for a full, quick recovery for Jenna! Thank you for all the work you are doing on Jenna's (and our) behalf and we pray that God blesses each one of you! Thank you for your interest and continue to EXPECT GREAT THINGS!

Today has been a good day. I keep looking over my shoulder wondering where the roller coaster is that we had been riding while on ICU. Here on A6South, it's been more like a "walk in the park". That seems really weird to even say considering where we have been and how far we are from Jenna's baseline, but compared to ICU....

Anyway, today Jenna came off her oxygen, and they disconnected her from the continuous monitoring. Her nephrologists also told us her kidneys continue to improve and the catheter in her neck can come out. Praise God for this great news! No more dialysis!
On a fun note, despite Jenna continuing to be sleepy, I carried her down to the playroom to see if anything sparked her interest enough to wake up, but also just to get her out of the bed and out of her room! So I carried her around the playroom, pointing out all the fun things, and last but not least was the arts and crafts section. She spotted an easel and paints, and was ready to get painting. She spent about 30 minutes creating her first masterpiece (mommy knowing that it was 30 minutes of therapy), which is now hanging on the wall in her room.
So the roller coasters seem to be behind us, and the walk through the park seems like it should be smooth, with the biggest hurdles to be overcoming the sedation/withdrawal, coming off the feeding tube to full feeding by mouth, and returning to independent and safe functional mobility.

Thank you, thank you, thank you to all of you! Words can not express how moved and grateful to everyone out there offering thoughts and prayers and support of all kinds. Keep the prayers coming for Jenna and all the sick children and their families here at Children's, and continue to EXPECT GREAT THINGS! God is bigger than all this stuff, and is soooooo GOOD!

Good night and God Bless!

8/4/09 Measured Progress

Today was not a day of drama (we have had enough of those for a while). Today was a day of gradual healing and measured progress.

Jenna is tired most of the time and sleeps quite a bit. They tell us that although she was sedated and looked like she was asleep for 2 weeks, the narcotics never gave her the deep restful sleep she needed to recharge and heal. She has been doing a lot catching up on her recharging (sleeping) now.

Jenna seems a little more like "old Jenna" with each waking hour that passes. Her language is gradually returning, one word at a time. She had worked so hard to build her limited vocabulary, it is disappointing to see it disappear and know the work she will need to do too repossess her language skills. No doubt they will come in time, but we can tell it is a frustration for her now.

She is becoming more playful and less agitated. These are signs that the narcotics are slowly lessening their addictive hold on her. She even laughed a little and worked in a coloring book for a short time this evening. So, those small strides and returns to normalcy are how we measure progress right now.

On the medical front, they say her blood toxin numbers look like they are turning the corner. If her toxin numbers are down again tomorrow they will assume that she will not need dialysis! If that is the case they will pull out the catheter in her neck (that one is just painful for me to look at. Think two McDonald's straws stuck in your jugular vein.) and pull out the PICC line in her left arm. That would set her free a little more from the machines she is plugged into and mean more freedom of movement for her.

We celebrate the small victories with Jenna and await a time when she can walk out of the hospital unfettered and ready to reenter the real world.

Again and again, we thank each of you for your concern, prayers, cards and visits. Please continue earnest prayer for the complete healing of our little Jenna and all the other kids here at Cincy Children's. Thank you.

8/3/09-OUT OF ICU! Movin on up!

Using your best George Jefferson voice sing.................

Fish don't fry in the kitchen;
Beans don't burn on the grill.
Took a whole lotta tryin',
Just to get up that hill.
Now we're up in the big leagues,
Gettin' our turn at bat.
As long as we live, it's you and me baby,
There ain't nothin wrong with that.

Well we're movin on up,
To the east side.
To a deluxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie.

That's right sports fans, the redhead graduated from the ICU (5th Floor B Section) at about 9pm tonight and did a little movin' on up to the a regular room on the 6th Floor (A Section). This was a big night for the redhead as she triumphantly rode her hospital bed through the halls of Cincy Children's. She looked quite proud and just a little confused as this was her first time outside the ICU bubble in 3 weeks. She is settling in well into her new digs.

Her mom and I hated to leave the good company of her medical team. We have grown quite attached to the folks that helped save the redhead. We wished those folks could transfer right along with us to our new home, but they told us their superpowers of healing and efficient medicine changes were necessary to help new kids in need.

So tonight we leave the redhead in the care of new docs and nurses in a little more relaxed hospital setting. She is still gradually gaining kidney function and is still suffering from drug withdrawals (but to a lesser extent). The big wild card for the redhead continues to be the attainment of full kidney function. If the toxins in her blood (usually filtered by healthy kidneys) outpace her kidney recovery, she will need to go back into ICU BRIEFLY for dialysis. She has had such a bad reaction to dialysis an ICU setting is necessary to keep her safe. The docs hope and ours is that the kidney function returns faster than the toxins build and she will not require additional dialysis. That is our hope and prayer too.

We remind ourselves that God is good all the time and not just when things are going well. We ask that you continue to pray for Jenna's full recovery and give thanks for the miracle recovery she has experienced to date. Please also remember all the other sick kids and their families at Children's in your prayers. We have heard from many folks that following Jenna's progress has led them to rediscover prayer in their lives. While we are no experts, it seems like regular prayer is a whole lot like regular exercise. The more you do it, the better you get at it and it doesn't take long to see the benefits. I think it is a whole lot like exercise too in that you can easily fall off the wagon and gradually stop without really realizing it. So, if this experience has renewed your interest in prayer, please don't stop just because Jenna gets well. View this as a jump start for a longer term prayer program. If you were to do that, it would help make sense of the cosmic reason Jenna has had to endure so much in her short little, beautiful life. Thanks to all and continue to EXPECT GREAT THINGS!!!

8/1/09 Jenna and Johnny "Walking the Line"

For those of you who may not have seen the movie "Walk the Line" it is about Johnny Cash's early years (pre June Carter Cash). I have wanted to see the movie for a long time. Especially since I learned some friends of ours (hi Dan and Tracee!) were in it. As a matter of chance, I picked it out of the hospital's movie selections last night. A large part of the movie deals with Johnny Cash's addiction to drugs. I had no idea what an uncomfortable coincidence that would be.

Jenna had a relapse into drug withdrawal last night. She is sleeping now, but only got about 3 hours of fitful sleep last night. We were in consult with many of the drug dealers (aka doctors) around this opium den (aka Cincy Children's) more than a few times last night. Jenna's drug dealers allowed her to get a few little "bumps" and "fixes" throughout the night. They assured us that this is a natural part of the withdrawal process. However, withdrawal hadn't been a "front burner" issue for several days. It was surprising to us that it reemerged. The docs say it isn't necessarily a step backwards it just happens like this some times. They also assure us this that Jenna won't be staggering down to the dark streets of inner Cincy in her teen years looking for a heroin fix. So, it looks like Jenna and Johnny Cash will have the unfortunate common link of drug addition in their early years. It is a shame Johnny got to have much more fun with his than Jenna. I suspect they will also share the common trait of having wildly successful lives once they "got clean" and "quit doing the hard stuff".

On the brighter side, her kidneys continue to improve. The docs have been able to hold off doing dialysis another day. They hope her kidneys improve speedily to the point she won't have to go through dialysis again. It is a bit of a race right now. Her kidneys are getting better but her need for dialysis increases each day too. If her kidneys don't improve faster than her need for dialysis, she will need dialysis again. That would probably be tough but Ok. So we will hope and pray that her kidneys win the race, but will deal with it if she needs dialysis a few more times. These are the micro fights. The macro picture is that she is getting well. We believe it is just a matter of time.

Thank you for your continued support and interest. Many folks continue to tell us that Jenna's adventure has led them to reconnect with their faith. We think that is pretty cool. We ask that you spend a little more time in prayer for our Jenna and the other kids here at Children's. Please continue to give thanks for Jenna's progress and pray for the speedy return of full kidney function and an overall complete recovery. If you have a few more minutes pray for strength for the families with sick kids. Have a great day and continue to EXPECT GREAT THINGS!

7/30/09 Band-aid Day

Yesterday was a day of battle and today was a day of rest for Jenna. It was a Band-aid Day. A recap of yesterday goes something like this:

6:00 am 1st "tinkle" diaper-(EUPHORIA...her kidneys aren't dead!)
1:00pm start dialysis
1:20 Jenna spikes a fever (So much for that surgery yesterday to replace a catheter that was supposedly the cause. darn it.)
1:45 Full doses of dopamine necessary to maintain adequate blood pressure (that's not a good start..hang on)
2:00 Additional oxygen in the form of one of those scary bag and mask things to bring her oxygen up to minimal levels (here we go again!)
2:30 A Massive dirty diaper and subsequent bed change (yuk...poor kid).
2:45 Vomit 2X (That's new..not in a good way)
3:00 Doctors consult and decide dialysis is not going well and should be discontinued.
3:15 Jenna's blood is clean but total liquid output is only 200ml, far short of the goal of 500ml. (disappointment with adrenaline still surging from the process)
5:00 Getting ready to leave to attend Kate's party and discover little Jenna is sitting in a BIG pool of blood. Docs are called, fast. The needle/line stuck in her forearm came out. Because of the way she was sitting nobody could see the blood leaking out under her. They stopped the bleeding and cleaned up her bed once again. (we will call that the "cherry on top" of a rough day)

Yesterday left us all on a down note (docs included). The unexpected severity of the reaction to dialysis was a real blow to the progress she had made on other fronts.

So, with strength provided only by God and the support of our family, friends and a top medical staff we picked ourselves up and dusted ourselves off to ready for the fight today. Only there really was NO FIGHT TODAY. (I guess it had been called off and nobody bothered to tell us.) Today was largely uneventful and not blighted by an incidence or two of panic that have become too commonplace. It was a day to regroup, heal and calm down. Today was essentially a Band-aid to wounds and panic of yesterday.

Without the challenge of dialysis, Jenna just looks better. She has more energy and has a chance to be a little get back to "herself". She produced about 5 "tinkle" diapers today with roughly twice the total liquid produced by the dialysis process yesterday. That is great! Her kidneys are waking up, and starting to clear her system of liquid. They are not yet "smart" in the sense they are not cleaning her blood. The docs tell us that could take days, weeks or months. My bet, hope and prayer is that her kidneys will recover sooner than later.

So, as I try to extract a little clarity from the past couple of days, the best I can come up with is that we all have "crosses". The "crosses" are heavier or lighter from time to time. When you fall (and we all do), ask for strength, spit the dirt out of your mouth and get back up. The strength to move forward with hope will come from outside you.

We have now heard at least 2 doctors refer to her as a "miracle". Scientific types in an ICU don't throw these terms around lightly. We know this to be true and are humbled by the experience and so happy for Jenna.

We humbly ask that you continue to give thanks for her progress and pray for an unexplainable, grand recovery for her kidneys. Please pray for the recovery all those little people that are in the care of the special medical staff of Cincy Children's.

Stay tuned and EXPECT GREAT THINGS!

Emerging Butterfly

This morning as I was writing in my journal, catching up with the occurrences of yesterday and thinking about the day ahead, the thought of a cocoon and an emerging butterfly came to mind. Each day we seem to get a little more of our Jenna back. Sometimes she pokes her head out, but goes completely back in, and sometimes we see just a little of her, and that little may stay or go. As I said earlier, each day she's a little better, and we seem to get more and better glimpses of the emerging butterfly. For example, last night she woke briefly and gave me a very sad face and was whimpering, so I climbed up in bed with her, got in her face and was telling her all good things. "What's wrong...you're doing so good...I'm so proud of you" and so on. Well she reached her little (elbow splinted) arms up to me, and pulled me closer, and gave me a kiss!!! Is that not the sweetest thing ever!! Come on little butterfly!!
Well, today we had tinkle! but we also had dialysis :-( Despite the switch in catheter last night she still did not tolerate dialysis (ie: low blood pressure with need for medicine, diarrhea, vomiting, and fever). After dialysis, she had problems with bleeding from one of her lines, and needing dressing changes. It was quite a ride for all of us, and I think the docs might be stumped as to why Jenna does not like dialysis.
Luke and I got to both go home for a little while for cake and ice cream. Our Kate turned 7 today! That was great for all and Kate got some cool stuff, too.
Jenna is resting comfortably now, the lights are dim, and there are many different "white noises" to fall asleep to, so I am headed in that direction.
Please continue to pray for a speedy and complete recovery, and specifically pray for more TINKLE...and pray for the doctors.

"The humility of prayer is better than the might of all human preparation." Saint Thomas of Villanova

Good night and God Bless!

Praise God

We have TINKLE! That's right, Jenna produced a diaper heavy with tinkle! More news later, but just wanted to share this BIG news. If nothing else it shows that the kidneys are trying really hard. Keep those prayers of praise and thanksgiving and petition coming! More to come later.
God Bless!!

Carrying our Cross

Today has been more of the same. When visitors come in who haven't seen Jenna for a couple of days, they comment on the huge progress. Luke and I are in the trenches everyday, and we know the big picture of how far she has come and how far she has to go, but also feel every bump that all of you have heard so much about. So today, dialysis was a little smoother, but not without it's drama. She found her groove and they got the fluid off that they wanted, but afterward the fever was back. They decided to change the catheter in her neck, thinking some bacteria may be "hiding" in the catheter (they've cultured it everyday and have found nothing), and that was a small "operation" in her room with 2 docs and 2 nurses,and some just in case personnel and medicines.



So, Jenna continues to carry her cross, and Luke and I continue to carry ours. We often wonder how much harder this must be for those who have little to no faith in God, because we know that that is where our strength comes from. It is not our own.

Please continue to pray for Jenna and our other ICU friends: baby Gunner, Colby, William, and Sarah.

Short post tonight because I'm going to excuse myself from the room due to a dressing change. It's too hard for mommy.

God Bless you all and continue to EXPECT GREAT THINGS.

Good Night from Missy and Jenna

Confession Time

It's confession time. Just in case people are wondering, I need to set the record straight. The majority of the updates are written by Luke!! Even I have been amazed by the creative genius of some of the posts of my husband. I have it in me, but what takes Luke about 10-20 minutes would take me 1-2 hours (I have a "mom of 4 kids brain" - some of you know what I'm talking about). Anyway, thank you for all your comments. Like Luke said, we check the computer often to "check in".

Love to all and God's Blessings!

Missy

9/27/09 Bullies

The little redhead lives in a tough neighborhood these days. There is this guy called a fever that steals her lunch money every day. He is quite elusive. When Jenna goes to tell her parents about the extortion, he runs and hides. Coward.

There is also this really tough guy that beats Jenna up almost everyday. He is known around the neighborhood as intermittent dialysis. This guy is big and bad and kicks the crap out of the little redhead at recess. Their bouts last about 3 hours each day. The little redhead's parents have a ring-side seat for these bouts. It usually starts out Ok and the little redhead holds her own for a while. Then dialysis lands one in the her bread basket and literally knocks the air out of her. Today these body blows resulted in her oxygen saturation count dropping from about 100% to about 74%. This sent the nurses in docs into a frenzy (and her parents too). The fight doctor threw a big ole oxygen mask on her, gave her a standing 8 count and allowed the fight to continue.

Dialysis being the sneaky, unfair player he is threw a sucker punch from "way down south" and knocked the redhead's blood pressure from a comfortable 70-80 down to about 41. The fight doc yet again interceded and gave the redhead some blood pressure medicine and allowed the fight to continue. All the while the redhead's parents are taking shifts actually being in bed with her to provide some measure of comfort through this awful trial. Mid way through the bout Sister Janet, a chaplain at Cincy Children's showed up and provided a little peace to the chaotic situation. A nice blessing was provided and the redhead seemed to soak it up. She rallied to beat the big dialysis bully in 12 rounds. The redhead was able to make the dialysis bully take a little over 1 liter of urine equivalent. I can't imagine a greater victory and worse insult for the loser to be stuck with a liter of urine! The redhead prevailed but was exhausted as were all the folks in her corner: her parents, a couple of docs, 2 dialysis nurses, 1 regular nurse and a special nun to boot.

Unfortunately for the redhead, she has to put her title on the line with Mr. dialysis everyday for 3 hours until her kidneys fire up. She is bloodied and bruised, but with the help of her personal trainers and a few butterfly bandages they say she will be ready for the fight tomorrow.

So, please continue to pray for the Jenna and all those in her corner that she continues to make Mr. dialysis go home with his lowly parting gift. Please pray for her complete and speedy recovery from this battle she has waged so valiantly for the past 15 days.

We thank you all for your notes, cards, posts of encouragement to the blog. We check the posts several times a day and receive great encouragement from your writings. We also want to thank our friends and family for all the dinners for our family at home and all the great care they have provided to us and our kids.

Pray, pray, pray. We trust in the Lord that it will all work out and continue to EXPECT GREAT THINGS!

7/26/09 Due to Technical Difficulties (and a long day) post will be delayed

In short...rough morning...good afternoon for the red head. The roller coaster continues. More later. Thanks for checking!

7/25/09 11:10pm Sir Paul Ministers to the Masses

Today was a tough day for our little red head. She continues to battle through drug withdrawal. I won't go into a lot of detail here. Let's just say I imagine it is one of the toughest things a parent could ever witness. Additionally, Jenna had her first run on the intermittent dialysis machine. That was largely unsuccessful too. Jenna spiked a 104 fever shortly after starting dialysis. The docs suspect there was some bacteria on the catheter used for dialysis and this gave her an infection. They started her back on some antibiotics that she has previously left behind. The docs also decided to sign Jenna up for a PICC line (peripherally inserted central catheter for all you out there playing along with the medical acronyms game.) That required something short of a surgery but more involved than a bedside needle stick. Jenna came through fine, but it left her parents searching for the tums.

So, at best this was a lateral day for Jenna. At worst we took a couple of steps back.

All this left Jenna and her parents drained. I will also admit to being somewhat....what's the word I am looking for....um..pissed, yeah that's the appropriate word.....that the roller coaster ride continues. It was just another day when you realize you aren't driving the train you are on.

So, in an effort to find some inspiration I turned to all the usual sources. Bible..check. A book about a miracle man and modern day saint, Padre Pio....check. But today those were "dry holes" for me. So I went deep into the thoughtful realm to find today's inspiration to calm the ICU storms. Where did I go? I went to the modern mountain, our popular reservoir of knowledge, You Tube!

While there is an admitted amount of garbage on You Tube, believe it or not there are some decent offerings for those looking for inspiration. I found a 2008 concert by Paul McCartney that "filled the bill" for me. Specifically, a great rendition of "Let It Be".

Here is a link for all those with a few minutes an interest: http://www.youtube.com/watch?v=kpnI9j28RPM

I love the whole song but thought this was particularly appropriate for our situation as parents:

When I find myself in times of trouble, mother Mary comes to me,
speaking words of wisdom, let it be.
And in my hour of darkness she is standing right in front of me,
speaking words of wisdom, let it be.

Let it be, let it be, let it be, let it be.
Whisper words of wisdom, let it be.

Actually my little study of Padre Pio also said something about don't worry about stuff and trust in the Lord. I'll give the old Italian priest credit, but from my perspective Sir Paul McCartney said it better. We just need to "LET IT BE".

Please continue to say prayers of thanks for our little Jenna's progress and pray for her full and speedy recovery. I suggest that we all pray that we will learn to trust in the Lord all the time, not just in pressure situations.

Please also remember our special buddies from ICU land; Sarah Bressler, William B. and Baby Gunner.

(insert from Missy: Padre Pio's words are very beautiful, too..."Do not worry over things that generate preoccupation, derangement and anxiety. One thing only is necessary: to lift up your spirit and love God")

Have a great Sunday, and remember EXPECT GREAT THINGS!!

7/24/09 10:30pm Jenna's Climb Towards the Summit

In the slow moments in the ICU I have been reading about the adventures of John Muir. John Muir was one of America's first conservationists. He was an experienced mountaineer that spent most of his life exploring and recording data in and around Yosemite. It strikes me that Jenna's climb to health resembles many of Muir's mountain climbs. In climbing, you start in a valley and look up at the distant summitt. You develop a rough plan that you think will get you from here to there, but the plan can't be so tightly coordinated that it doesn't allow for unexpected things to happen along the way. Mountain climbing involves a lot of walking up steep slopes. At times, sheer walls are encountered that require higher dangers and intensity. There are also things known as "false summits". These are areas that if seen from a point below appear to be the summit. As the false summit is scaled, the climber now has a different perspective and realizes that there is a another valley and yet another steep climb before actually conquering the "true summit".

"OK. Enough with the mountain climber stuff" you might say I logged on to see how my favorite little red headed 4 year old is doing. I hear you. Just hang with me.

Today was a GREAT day! At 11:07 this morning the docs pulled Jenna's breathing tube and took her off the ventilator! That is a real milestone for this little climber. She has tolerated real air quite well and is being assisted only with some oxygen through her nose. To get to see Jenna awake and without a tube and all that tape on her face was great. She breathes with a heavy wheeze due to the inflammation the tube has caused within her throat, but from technical breathing perspective (blood gas counts are good) she is doing great!

OK, back to the mountain climbing comparison. While the successful removal of Jenna's ventilation equipment is a BIG TIME milestone it was a bit of a "false summit". Don't get me wrong, we knew that this wasn't a true summit, butwe may have underestimated how big the next challenge will be before continuing towards the true summit. What is the next challenge? NARCOTIC DEPENDENCY. In order to save little Jenna's life, it was necessary to provide Jenna with enough drugs to keep her sedated for almost 2 weeks. Those drugs include morphine and fentanyl which are great sedatives but highly addictive.

The excitement of Jenna achieving the milestone of "extubation" was quickly offset (at least partly) with the realization that our little baby was nearly immediately experiencing drug withdrawal. The docs do their best to deal with withdrawal via the introduction of other drugs like Methadone (ever heard of a methadone clinic in NY City for heroin addicts?), but it is still really hard for little Jenna. She has had a fever, sweats, diarrhea and tremors in her hands and feet. She has shed a few tears as she tries to understand what is happening to her. She moves her mouth like she wants to say something, but nothing comes out. This is yet another climb that Jenna has to make on her own with the parents left on the sidelines to only whisper words of encouragement. They tell us that she will fight the majority of the drug withdrawal battle over the next 2-4 days. It will take about 2 weeks for all the sedatives to clear her system.

As we look over our "false summit" into the next valley of drug withdrawals and the fight toward the resumption of kidney function, we can see the true summit in the distance. While this was a false summit in some respects, it is no less of an accomplishment for her. She has fought long and hard to get to this point. She has and continues to be supported in her climb by our prayers and yours. At this moment her little blue eyes look right through mommy and daddy. The narcotic haze is present and we realize she is partly with us and not with us. We are hopeful that she has her eyes on the path before her with Jesus, her Guardian Angel and Mary holding her hand through this very difficult part of her journey.

Please continue to pray for Jenna's full recovery. Please also include in your prayers , Sarah Bessler, Baby Gunner (7 mo.) and William B. a 9 year old who recently arrived with meningitis. Thank you for your continuing support for Jenna and our family. We continue to EXPECT GREAT THINGS!

July 23 - 10 days in ICU

We've come a LONG way!!! Today, Luke and I, have taken time to go back through the blog updates, and feel so blessed to be here, today. We've come so far! FROM the emergency room at Lake Cumberland Regional, helicopter ride to Cincinnati Children's, life saving scene like what you'd see on "ER", intubated (put on vent), chest tubes, 4 IV poles full of meds, lots and lots and lots of sedation medicine, and continuous hemodialysis due to failing kidneys...TO -- drum roll please...they are taking her off the vent tomorrow!!! This is one of the BIG things we've been waiting for, and we are very excited. What this means is: tonight they will transition her to a different type of sedation, and allow some of the other sedation to get out of her system, and then pull the tube out when she is awake/starting to awaken tomorrow "mid-morning" or so. (I told one of the nurses, I feel like I need to go home and get some "dress clothes" because it's such a big occasion.) This also means they will transition her to "intermittent" dialysis, and she will get rid of a lot of the lines that are running to her. But most of all, it means that I will be able to hold my Jenna!! I've missed her so!!

We have a long way to go...

Once off the sedation medicine, she will experience withdrawal symptoms for several days, which they will assist her through with medication. Her kidneys are still not functioning normally, so will need to continue dialysis for "a while", but not expected to be permanent. And we are not sure how weak she'll be from this whole process, so therapy is in her future as well, to get her strong enough to go home. We know that we will be in ICU for several more days, but beyond that, we do not have a good grasp of when we will be heading home. However, we continue to EXPECT GREAT THINGS, and believe God has already brought much good out of this time of suffering. Please remember to thank God tonight in your prayers, and ask for a speedy recovery for Jenna. And please, about mid-morning tomorrow, pause to ask God for a smooth transition off the ventilator.

May God Bless each of you for all the love and support you've shown to our family!

Love to all, Missy, Luke, and Jenna

"Jesus said to him, 'Everything is possible to one who has faith.'" Mark 9:23

7/22/09 11:45 pm "It's All Good"

When people have asked us about the Jenna news for today our response has been "It's all Good!"


Jenna continues to improve. Improvement is measured by the reduction of medical support for her. Today, the docs put a few more drugs back in their toolboxes. They have reduced the fluid inside Jenna, by about 3/4 of a liter today. Jenna needed this fluid to prop up her blood pressure when things were dire. Now, they are working furiously to put that fluid back int toolbox. The docs call refer to this stage of the process as the time to "pay the water bill".

The most immediate challenge Jenna is presenting to the medical staff is the level of drugs she needs to keep her sedated. We have been told they have given her enough sedative to stop a "small elephant in its tracks". There are actually some studies that indicate red heads require more sedatives than the average bear. Who knew? The docs tell us that little Jenna will have to deal with some drug withdrawal issues later in the process. Poor kid. Just breaks your heart.

If they are able to "pay the water bill" at current reduction rates, and Jenna doesn't step on any more "banana peels" it is possible that Jenna might come off the ventilator on Friday. THAT WOULD BE HUGE!

To switch gears a bit, we want to say thank you to the many people that are providing to support in the form of prayers for Jenna and for those that have provided physical support for the kids at home. This won't turn into one of those Oscar thank you speeches, simply because of we could never name all the people helping in both regards. With regards to prayer, there are so many people remembering little Jenna, we really don't have a good handle on how many their are. If prayers are answered as a function of QUANTITY, I think Jenna should be in good shape.

If prayers are answered as a function of QUALITY, I think Jenna should be in good shape too. In addition to many local and regional prayer lists that Jenna is on, we understand that the Trappist Monks, the Sisters of Notre Dame and the Passionist Nuns have taken up her cause. That is kind of like having Babe Ruth, Mickey Mantle and Joe DiMaggio as the first 3 batters on your team. You don't know if your are going to win, but anyone of these guys working alone could probably put your team in the World Series. To have all 3 on the same team is incredible. With humble hearts, we thank these groups and each of you individually that have taken time out of your busy lives to spend a little time with in prayer on Jenna's behalf. I suspect that your time in prayer will pay dividends for you and for Jenna.

It is time to wrap this post from the ICU up. To set the scene at this time of night, the lights are dimmed in Jenna's room. The pace of hospital has moved from hard charging feel of daytime to the more measured pace of night. Jenna lays quietly and small in her bed. She is enveloped in a electronic cocoon of medical technology; sharply glowing LCD screens of ever changing red and green data streams, 9 different syringes delivering potions of different sorts, 5 bags of various serums dripping at thoughtful rates and a ventilator that fills the room with the sound of bubbles. The bubble sounds seem to be cross between the bubbles that a kid blows in his milk and the bubble sounds of a mad scientist's cavern. All the while the dialysis machine spins quietly at the back of stage like a under appreciated drummer backing up the band. It's surreal and vertigo inducing. I will close the post with one of the great poets of our time. Wordsworth...no. Frost....not a chance. Who you might ask....why Bono from the band U2 of course!

From the song titled "Vertigo"

Hello, Hello I'm at a place called Vertigo
It's everything I wish I didn't know
You give me something I can feel
Your love is teaching me how to kneel


We humbly ask that you don't let off the "gas pedal" with regard to your prayers for Jenna. We continue to EXPECT EXTRAORDINARY THINGS!

Morning Prayer

Good Morning! Just wanted to share something from my morning prayer. Before I get out of bed, I like to offer my day to the Lord, and this morning, I was thanking God for all the good things, all the many blessings. I was thanking Him for Jenna's progress, my kids, this cross that we are carrying...and in that thought, I prayed that although I know the benefits of suffering, I prayed that God would please keep my children safe from the next cross I may need to take up, because it is so hard to watch your child suffer so much! AH HAH!! At that moment, I felt a rush of God's LOVE so deeply! Tears came to my eyes, and joy to my heart. HOW MUCH GOD MUST LOVE ALL OF US! He endured watching His own Son suffer so much more, out of Love for us. It was a really beautiful moment, a consolation, that I just wanted to share.

Just a few thoughts. May God bless your day.

This post is from Missy, sending out love to all!

The BIG Picture - Tuesday, July 21, 2009

"Those who know your name will put their trust in you. For you, O Lord, have never lift alone those who look for you." Pslam 9:10

The big picture: Jenna is doing great! The docs are "exstatic" about her progress.

The details of the picture:
*They found the probable source of the fever. It was a yeast infection not a bacterial source...fevers are gone, and the yeast infection has been treated!
*blood transfusion, due to slightly anemic
*the arterial line in the left wrist had had enough so they put a new one in on the right
*Our nurse decided it was time to go from 4 IV poles to just 1!
*the attending doc is encouraging one of us to go home and hang out with the rest of the family at least for a little while or overnight
*the highlight was Ben and Kate came in to visit with Mrs Kluemper (Child Life Specialist - and dear friend) AND with Jenna. They helped decorate her room and had a good time. They can't wait to come back again!

So BIG picture: *Keep the prayers coming
*Thank God for all the good progress Jenna has experienced so far
*continue to EXPECT GREAT THINGS, because God is Good!!!

7/20/09 12:00pm Speedbumps and Rollercoasters

We are learning the difference between speed bumps and roller coasters. With a roller coaster you have terrifying drops, exhilarating uphill climbs, disorienting loops and an ending exactly where you started. Speed bumps are jarring, unexpected and cause you to slow down for a period of time, but do not interrupt overall forward momentum. As challenges are presented parents experience them as roller coasters, the medical staff usually view them as speed bumps.

So the progress report is that Jenna is a little better today than yesterday. The blood pressure thing seems to be controled. The fever is still there. They haven't figured out the source and have expanded her medication to hopefully kill whatever is doing this to her.

With the additions of unexpected challenges to Jenna's situation, we as parents have the same feeling as cresting the top of the largest hill of the roller coaster and then experience that stomach-in-your-throat feeling of the near 90 degree drop. With the scary over the top feeling in our experience set, we are left wondering, no matter what the docs say, when will we yet again experience that free fall with no apparent bottom sensation??

Yesterday was one of those roller coaster/speed bump days depending on your perspective. As was mentioned Jenna has a fever from an unknown source. They work to identify the source, but ultimately the docs say it really doesn't matter. They will treat it with a broad range of antibiotics no matter the source. The fever and the management of it, we believe impacted her blood pressure yesterday. At one point the drama was high. The doc and about 5 nurses worked for about five minutes to stop her blood pressure from a seeming free fall. 5 minutes is a long time if your are watching a red blinking light change second to second. The doc and nurses were solid players and went about this adrenaline session with a business as usual attitude. They became progressively more focused as time passed, but never appeared shaken. I really don't think you could shake these guys in the most dramatic of circumstances. This is good and bad. You want a solid player on your team, but if I am watching the pilot of a plane in a nose dive, I would appreciate at least a blink so we can "brace for impact". I don't think these guys ever blink.

OK enough of the scary minute to minute, ICU, parent perspective. From the docs perspective, they are pleased with Jenna's progress. As of today, Jenna has been in here a week. The docs are pushing fluid removal from Jenna as fast as Jenna will let them. They know that ICUs are great for providing critical short term care, but are progressively more risky the longer you stay. Infections and other yucky stuff related to all the tubes and stuff they stuck in Jenna to provide her lifesaving fluids, etc. start to become liabilities over the longer term. A hospital acquired infection is probably what is working on Jenna now. The quicker they can get her out of here the better. Those are our goals too. So, we are on the same page. We love the docs and nurses here, but do not want the opportunity to develop a long term professional relationships with any of them.

Our visitors continue to tell us that concern for Jenna (and for our family) has increased their time in prayer. We have also heard from more than a few folks who do not usually pray that Jenna's situation has initiated prayer in their lives. With all the nasty stuff that goes with this process, we are pleased and not too surprised that Jenna is having a positive effect on people outside our walls.

So, we leave you with a few prayer requests. Please give thanks for her progress. Please pray for the elimination of her fever and the full recovery of her kidneys. Please also keep in your prayers some folks we have met here; Sarah Bessler, Michael Robinson and baby Gunner.

Thanks for your attention. We continue to EXPECT GREAT THINGS!

7/19/09 10:00am Banana Peels & Balance

Jenna stepped on a banana peel last night. She spiked a big fever. That probably means another germ of some variety is working on her. We continue to be encouraged but, this type of thing throws us off balance. She is so fragile right now that the steps forward she has taken could be easily erased by the wrong sets of circumstances. So we and Jenna struggle to find our balance. The docs approach is to bring back some of the antibiotics she was on previously and throw a few more into the mix that would address hospital acquired germs.

As a parent, the helplessness in this type of situation is tough to deal with. It seems that the 2 avenues we have available to us to actually help Jenna both have to do with faith. First, we have faith that Jenna is receiving remarkable care from a remarkable group of dedicated professionals. We spend our days asking questions of the docs and nurses to try to increase our knowledge of the challenges Jenna faces. Somehow believing the acquisition of this knowledge will help our little girl. In reality, it probably won't. At most it might help us answer a few more questions on Jeopardy! I suspect our professional team would do the same things with or without our presence or questions. We have faith in these folks and their dedication to caring for little Jenna.

The second area of faith is one that we do believe we can be additive to the process. Clearly that is faith in God and that He hears our prayers. Nobody can pray for a child like a parent and we are putting forth great effort to let God know what we want and that we have faith that He will provide. The troubling questions for probably any parent in this situation where you have limited control "Are we doing enough? Praying enough? Are we really doing are best?" Our prayer and hope is that we have the wisdom and strength to do what we need to do. Our prayer is that through faith that we can help Jenna find her balance and find our own as we step on the banana peels that seem to be a part of this path she/we walk.

For those that are willing please steal a few solitary moments from your day and continue to give thanks for the healing Jenna has experienced to date. Please pray specifically for our medical team to have the wisdom to kill any infections that Jenna may be fighting and that her kidneys have a fast and full recovery. We know the Jenna herself is being held and comforted by Jesus and her Mother Mary. We continue to remain positive and thankful for all your support. We continue to devlop our patience with the process and EXPECT GREAT THINGS!

"For I am the Lord your God Who holds your right hand, and Who says to you, 'Do not be afraid. I will help you.' " Isaiah41:13

7/18/09 6:25pm

So far our day has been about slow progress, patience and using the time that this event has created away from everyday life wisely. Jenna continues to make slow, incremental progress. Yesterday the docs goal was to drain about 1 liter of fluid from Jenna via dialysis. Our lead doc Lesley said that Jenna "slapped their hands a bit yesterday" and they had to back off the 1 liter goal and settle for a half liter of reduction. Basically, Jenna's feet and hands became cold due to loss of fluid and the coldness was appearing to seek progressively up her legs as the day wore on. While little Jenna is constantly monitored by a very high tech bank of computers, really you can tell an awful lot about someones health via common sense. In the space in which we are currently operating the key common sense rules are "pink & warm" The docs want all of Jenna to be "pink & warm". The level of fluid they had taken started to make Jenna cold. So, cold is bad and they reduced the fluid draw.

Our day stared nicely with our first trip away from Jenna's bedside since this started. Our parish, St. Agnes held a Mass in honor of Jenna. It was really special to see many of our friends and neighbors taking time out of their normal busy Saturday morning schedule to pray for our little Jenna.

Jenna's dialysis machine kicked off in the middle of the night last night and required a restart after we got back from church. As has been mentioned before the restart always has the chance to cause her blood pressure to drop significantly. Thankfully, Jenna is less sick now than the first time they did the dialysis starting procedure and would not be as affected by blood pressure drops. Long and short..it went off without a hitch..again. It really is the little victories that are the bright spots of the medical day.

The gospel for today had something to do with (I should have listened better) keeping vigil, having patience and using our time during the waiting period wisely. It is not hard to see how that is applicable in our situation. As we move from the critical care part of our journey into the healing part of our journey patience and pace will become more important. We have been told that Jenna is probably looking at another 7 days in ICU if things go well...patience and pace...then probably 2 weeks in a regular room...patience and pace. We are not real good at patience or pace. I guess Jenna will teach us how to be.

Please continue to give thanks for Jenna's continued recovery. Please continue to pray for a rapid healing for Jenna's kidneys. We will learn patience and pace if we need to....but we have seen the syllabus and won't take that class unless we have to.

Thought for the day...Proverbs 3:5-6 Trust in the Lord with all your heart, and do not trust in your own understanding. Agree with Him in all your ways, and He will make your paths straight.

Friday night - 7/17/09 - 10:45pm

Well, we are happy to report another good day! They tried to be aggressive with removing fluid and had to back off a little, but that just shows how good they think she is doing. However, do not mistakenly think that we are out of the woods. We still have a very sick little girl, but because she was soooooo sick, we -- and the docs -- get excited about little milestones. So we are deep in the woods, but definitely inching our way back to the edge of the woods.

So, still on vent, still have about 8-10 lbs of fluid to lose, still praying for kidney function return and still on the continuous dialysis...and still fully sedated.

EXPECT GREAT THINGS, because God has big plans for Jenna.

7/17/09 9:50am

Hello sports fans! The Jenna report continues to improve. In yesterday's doctors comments our lead doc said that "I think Jenna is ready to get well and we just need to get out of her way." Today that docs analogy was of a third base coach sending the runner home. Her illustration was complete with the one armed windmill sign used by third base coaches. This was fun stuff to hear and see in a generally serious ICU setting from the normally stoic doc!!

So, in medical terms we are talking about taking a bunch of liquid out of Jenna via dialysis that was added throughout the lifesaving procedures that were performed over the last 2-3 days. The aggressive removal of fluid throughout today and tomorrow will let the docs see the extent of damage to many of her internal systems that were stressed throughout this process. As parents our bet is that there is a lot less damage that the docs suspect. Jenna clearly has the divine healer in her corner and I suspect that when you have the Big Guy at work normal expectations are shattered. We will wait and see, but I can't wait for these guys to be amazed at Jenna's progress. As was previously mentioned, for those among you who are prayerful sorts, please give thanks for all the progress to date and pray targeted prayers that Jenna's kidneys experience remarkable improvements. We would also ask for your prayers for our friend Sarah (age 15) in ICU that is battling brain cancer. EXPECT GREAT THINGS!

Thanks to all. We are humbled by the outpouring of support for our little Jenna and our family. Thank you. Thank you. Thank you.

Signing off from the world of ventilators, chest tubes, blinking line graphs, dialysis machines and bags of medicine. Have a great day.---Luke, Missy & Jenna

Leaving Comments

Hello, everyone. It's Jenna's Aunt Christina here. Missy and Luke mentioned that some people were not sure how to leave a comment for them here on the blog, so I'm going to try to help with that!

At the bottom of each post is a link to the comments. It will say "0 comments" or "12 comments" or however many comments have been left so far. Click on that link, and a comment box will pop up for you. After leaving your comment, you will type in a word verification (this prevents automated robots from posting anything). Following that, you will choose an Identity. If you have a Google account, you can type in your information. Creating a Google account is easy and is nothing more than creating a username and password -- you will be able to use it anytime you visit a Google blog (Blogger), and your name will post with your comment. You can also choose one of the other options and follow the prompts. If you choose the Anonymous identity, just be sure to sign your name, since no name will post with the comment.

I hope that helps! Thanks again to everyone for all the prayers and support!

Christina

7/16/09 10:30pm

It's been a long but good day. We had 2 significant medical milestones today. First was the restart of the dialysis machine. As we mentioned that again went off without a hitch. Second was that Jenna was moved from a ventilator for super duper sick kids to a ventilator for really sick kids. That too went well. Both were somewhat tense to watch for parents, but the pros here just put their gameface on and do their jobs. They have also been able to reduce some medicines. These transitions indicate Jenna's body continues to improve in small ways. Jenna's body is taking baby steps toward retaking the workload from the machines and medicine.

Jenna's kidneys have basically shut down at this point. Some of that has to do with the use of dialysis and some of that is simply that they have been damaged. The docs tell us that over the longer term Jenna should regain adequate kidney function, but the length of time to get from here to there (and what there really looks like) won't be known until it actually happens. So, if you are a prayerful person, we request you say prayers of thanks for the healing that she is currently experiencing and targeted prayers for the return of normal kidney function. We look forward to reporting that the kidney have fired back up much faster that the docs anticipate or can fully explain. EXPECT GREAT THINGS! Over and out from Jenna's ICU room.
Many Thanks!! ---Luke, Missy & Jenna

7/16/09 10:15am

A new day. The night was thankfully largely uneventful with the exception of a problem with the dialysis machine. Basically the machine started detecting a clotting environment within the machine itself (not in Jenna) and had to be shut down. That's ok and sometimes part of the process we are told. They did a restart of the machine this morning, but didn't expect problems. While they didn't expect problems it was another "all hands on deck" situation as they waited through the machine start process, and monitored Jenna closely. To paint a visual on this, imagine stuffing 16 people in a small room with a large bed and a little sick girl in the middle with lots of blinking lights and things constantly going beep or alarming. Anyway all went well. We are yet again thankful for the little and not so little victories Jenna is accumulating.

The attending physician who is usually a reserved type super doc, declared this morning she thought that Jenna was "ready to get better and we just need to get out of her way". From a doc's perspective this means they will start reducing the medications that are currently supporting Jenna to the extent Jenna will let them. They will also start giving Jenna some nutrition in the form of liquid supplements through the IV. These are all good signs.

Prayer has been and continues to a big part of this experience. We really do trace the apparent turning point to our prayerful vigil 2 nights ago. In fact, seeing improvement from our perspective is expected because we sense the powerful forces at work.

So, we move forward expecting to see great things. While some new found optimism seems to be creeping into the physicians lingo, we are very aware that Jenna is still very fragile. We are still in ICU. Jenna still needs your prayers.

Thanks for all the support here and at home. Thanks for all the comments, posts, emails, text messages and calls. God bless you all.----Luke, Missy & Jenna

jenna update 7/15/09 9:50pm

This has been a big 24 hour period for Jenna. At about 1am last night things looked pretty grim. The docs were struggling to get her blood pressure up and were "up against a wall". Missy and I engaged in a period of prayer like we have never done before. Intense stuff to say the least. Our great friend and spiritual heavyweight, Chris Neikirk literally paced the floor of the lobby of the hospital all night, praying for Jenna and our family.

In the mean time, our docs came up with a concoction of different blood pressure meds that started to work for Jenna. Coincidence?? Not a chance. Obviously, God at work. By about 3am we were starting to see a halt to negative progress. By 7am things seemed to be stabilizing more broadly. It seemed we had been rapidly heading for the abyss and clawed our way back from the edge...just a bit.

Jenna's kidneys quit working. The docs are really concerned about this. They started dialysis today. This was a potentially lethal procedure for kids as fragile as Jenna. We knew there was a a good chance that when Jenna started dialysis, she would go into distress to the extent lifesaving measures would be necessary. Some portion of kids that start this process don't make it. We wouldn't know what would happen to Jenna until she actually started. There were about 16 folks in our room ready to jump to Jenna's aide if she fell into distress. (think ER on steroids). Jenna surprised everybody and smoothly went onto dialysis with no problems. All the adrenalinjunkie ER docs and nurses were stunned and left the room with smiles on their faces (the first genuinely happy smiles of our stay). So we leave today having come through a hurricane of emotion and changing vital signs. They are pleased with the progress Jenna has made today. Her reward was a move from "SEVERELY CRITICAL" to "CRITICALLY STABLE". Jenna is still a very sick little girl. Please continue to pray for her, our family and her caregivers. We don't mean weak kneed dinner time prayers. She needs thoughtful, purposefull on your knees level of prayers!! Thanks for your love and support. Off to curl up between the noisy ventilator and the IV pole with 13 things hanging from it. ----Luke, Missy & Jenna

Our Newest Journey

Hello All! We never imagined we would be here...in this place, sending out "posts" on our sweet little angel, Jenna. But here we are and here goes...


Luke and Missy post - friends and family this post will be fast and furious. short and sweet....we have a very sick little 4 (almost 5) year old. We are talking very sick. We are in the intesive care unit of ciny childrens, one of the premier childrens hospitals in the world. Even here, they are saying our little girl is severely sick. Ok now you have a little pespective on the situation. So what's up. Jenna developed a fever, then a high fever, then vomitting...a visit to the ER in Somerset, admission to the hospital, developed diarrhea (a lot) -- really really sick, blood work changed, helicopter ride to Cincinnati (boy, that was surreal). We arrived in ICU, and it felt like a scene out of "ER". 3 Docs, 3 RNs, several techs, and the news she was in "septic shock". Severe septic shock...and the work began. And for Luke and I, another BIG roller coaster ride. Jenna has fought hard and continues to fight hard. The infection (group A strep) may well be gone due to multiple antibiotics, but now working on the overwhelming reaction from the body. She is on a ventilator and many meds and just fighting for her life. So, what we need from you is your prayers for healing for jenna, strength for jenna and for us. We don't know why Jenna/our family has been asked to walk this walk, but with God's grace we will do our best.
We love all of you. Do not despair...HOPE, FAITH, TRUST. God is GOOD!

From Jenna's Family

This blog has been set up by the family of Jenna Hail to keep her family and friends updated on her progress. Please subscribe to this blog so you can be notified of updates. Thank you all for your love, prayers and support!