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!