Blog Tour and (Giveaway)

ABOUT THE BOOK:

The Last Christian
David Gregory

In the future, it’s possible to live forever—but at what cost?

A.D. 2088.

Missionary daughter Abigail Caldwell emerges from the jungle for the first time in her thirty-four years, the sole survivor of a mysterious disease that killed her village. Abby goes to America, only to discover a nation where Christianity has completely died out. A curious message from her grandfather assigns her a surprising mission: re-introduce the Christian faith in America, no matter how insurmountable the odds.

But a larger threat looms. The world's leading artificial intelligence industrialist has perfected a technique for downloading the human brain into a silicon form. Brain transplants have begun, and with them comes the potential of eliminating physical death altogether—but at what expense?

As Abby navigates a society grown more addicted to stimulating the body than nurturing the soul, she and Creighton Daniels, a historian troubled by his father's unexpected death, become unwitting targets of powerful men who will stop at nothing to further their nefarious goals. Hanging in the balance—the spiritual future of all humanity.

In this fast-paced thriller, startling near-future science collides with thought-provoking religious themes to create a spell-binding "what-if?" novel.

Read the prologue HERE.
View a quick video HERE.

ABOUT THE AUTHOR:
David Gregory is the best-selling author of Dinner with a Perfect Stranger, A Day with a Perfect Stranger, The Next Level, and the coauthor of the nonfiction The Rest of the Gospel. After a ten-year business career, he returned to school to study religion and communications, earning master's degrees from Dallas Theological Seminary and the University of North Texas. A native of Texas, he now lives in the Pacific Northwest.

MY THOUGHTS:
I thoroughly enjoyed this read. Not only were the characters true, the plot lines legit, and the story well told, I was challenged in my Christian faith. My eyes were opened to a part of the gospel that so easily and so unfortunately gets overlooked. It just makes sense. I was kind of worried when I knew that this would technically be considered a science fiction/futuristic-type of novel. I am SO GLAD that I gave it a chance. It's crazy the logical steps that our society could very well take to completely remove their need for God and how faulty evolutionary thinking is on worldviews and belief systems. It is important to remember that God made man in His image--we are not just a random cluster of atoms and particles that have no meaning, no value. Definitely a must read.

GIVEAWAY:
Leave a comment on this post (and an e-mail address to be contacted) to be entered into a drawing for your own copy of The Last Christian. A random name will be selected June 4 around 10:00 PM EST. Thanks for playing!

This book was provided for review by the WaterBrook Multnomah Publishing Group.

Trying to Rest

First off, I want to thank all of you who are praying. Please keep your prayers coming. From day one, God has answered and has been and will continue to sustain us with peace and comfort by answering those prayers in a very real way.

We decided to get away for a bit. The initial plan was to spend the week in D.C. spending our days meandering through monument after monument, historical site after historical site, museum after museum. Unfortunately, the 11-hour drive (which easily turns into 13 hours with a toddler and a pregnant lady) didn't seem very restful and the prices for flights out there weren't exactly budget-friendly. So we started looking more locally.

A 2-hour drive was much more appealing. So far we've spent our time relaxing at the hotel, swimming with Emma, shopping at a nearby outlet mall, and having a super delicious meal at PF Changs (my first time). Not bad for arriving yesterday around 4. We've still got plans for IKEA, the creation museum, and a waterpark--but mostly just "relaxing" and seeing what the days bring.

Again, thank you for your prayers. Thankful for time away with my family.

Missing Malachi

There are many things that happen throughout the day that bring Malachi to mind.

For one, my blue bracelet. A constant reminder of the earthly life, death, and heavenly life of our little man. I am so thankful for the assurance of heavenly life--perfect wholeness. This brings peace and comfort to my aching soul.

We were at an outlet mall today. It took everything inside of me to NOT venture into the boys section of the children's clothing stores. I was reminded of being at stores when Malachi was still inpatient. There were many, many cute clothes--size 12m to 3T. I remember specifically being cautious NOT to buy anything because we knew that our time with Malachi would be limited and I did not want to have a closet full of clothes for a baby who was no longer with us.

Emerson and my growing belly remind me of my other babies. I wish they were all here--all four of them. I'm thankful for the miscarriage of Jordan in that I was pregnant with Malachi before she would have been born. God used Malachi and without her death, he would not have made his arrival. However, my heart still aches for her--the baby I never physically met.

Even just the new daily routine is hard to get used to. I have much MUCH less on my plate, but the workload that came with Malachi was doable--with God and my husband, it was doable. I don't have to figure out childcare for Emma when I don't necessarily want to bring her to the hospital or balance my time between hospital and home. I can take Emma to the park or the library or the waterpark without the guilt I once felt for not being with Malachi at the hospital. Now I want to do anything to occupy my time and distract myself from the reality that Malachi is gone.

Emma's verbal reminders. When we get ready in the morning, Emerson still asks if we are going to the hospital to see baby Chi. "No sweets, baby Chi isn't sick anymore. He doesn't have to live at the hospital. He gets to be in heaven with Jesus." Or when we pray for our meals, "Jesus, thank you for my food; pray that baby chi gets better. In Jesus name, Amen." No sweety, baby Chi is ALL better."

A few of the many reminders throughout my day.

what? when?

We go on "bacation" "lasterday".

PBS viewers like you.

This morning I told Emma that she could get her shoes on

her reply: "oh, thank you mama... thank you for supporting me"

Services

The quick details...

Saturday, May 29, 2010

Calvary Baptist Church
1290 S Center St
Plainfield, IN 46168

9:00a Family Viewing
10:00a Public Viewing
11:00a Funeral Service

Relatives are invited to attend the burial at a local cemetery
and meet back at the church for a provided lunch.


Flowers may be sent to the church.
Anything sent in lieu of flowers may be mailed to:
John & Marissa Sharbaugh
PO Box 215
Brownsburg, IN 46112

Home... for real this time

Malachi Stephen Sharbaugh went home to be with the Lord at approximately 4:30 this afternoon.

John and I are obviously deeply saddened by our loss, but rejoicing in the fact that Malachi will never again feel pain or suffering or life in a hospital bed. He will never be alone, but eternally in the loving presence of our Father.


Malachi's life was definitely NOT in vain. God had a mighty plan for his seven months and we would like to collect tangible evidence of the impact Malachi has had on the lives of those who have followed our story.

Details for Little Man:Big Impact will follow. For now, I will attempt to relax with my husband.

Pray for sleep

Please pray that John and I would be able to sleep tonight. Sleep and
actual rest for the strength needed tomorrow. Also strength for our
frequent moments of weakness when it just seems like too much.

gathering my thoughts

Clearly, this has been a hard week in the Sharbaugh household. It's extremely difficult for me to make sense of my thoughts, let alone try to convey them in writing.

Not much to really say at this point.

Please pray--sanity and peace would be much appreciated at this moment.

at peace with the next step

Without the transplant, it is extremely unlikely that Malachi could survive a major open heart reconstruction without a major infection, especially because he has two open stomas (holes) that are easy risk of infection because of his trach and his G-tube. We are out of options. So then it becomes a matter of still aggressively treating Malachi by keeping him on a ventilator and his 20+ medications a day and putting him through surgeries that he won't survive while in the meantime living day-to-day at the hospital--there is also no guarantee that he will avoid infection before he is even big enough for the heart reconstruction--or making the decision to change our plan of attack and start keeping Malachi comfortable and removing artificial life-sustaining devices.

Meeting with the doctors today only confirmed where John and I stood on Malachi's treatment. The overall opinion from the medical community is that Malachi is out of options. And the one option (that was a long shot in and of itself-transplant) is out of the question. God clearly shut the door and just reiterated where we were at from an earthly standpoint. They had basically decided to withdraw Malachi from his ventilator, but were basically giving us the parents a veto option. Clearly, what is in Malachi's best interest is that of being whole and at peace and in the direct presence of his Creator. As hard as it is to grasp all of what is going on right now, John and I are thankful.

Through the tears and pain and grief, we are thankful. We are thankful that God has given us peace about what must come next for Malachi and that we can accept the next step in His plan for our lives--as unimaginable as it may seem. We are thankful that Malachi will be hole and able to fully see and fully hear and play and not be poked or suctioned or hooked up to any monitors. Most of all, we are thankful that God allowed us seven months with our beautiful baby boy and the assurance we have in Christ that we will one day be reunited.

a heavy heart

On Friday afternoon, we were informed that Dr. Markert at Duke is unwilling to evaluate Malachi for a transplant due to his ventilator dependency. The outcome of the procedure doing what it is supposed to is like 50-75%. However, this has only been done on 60 patients AND she is the ONLY physician in the world who is working on this research. Obviously, she only wants to proceed with patients who have probable outcomes of success. Frankly, we only wanted her operating on Malachi if there was a good chance it would work. The decision was made for us. The thymus transplant is off the table for Malachi.

We meet with doctors at 9:30 this morning.

Review Time: Life, In Spite of Me

ABOUT THE BOOK:
She wanted to die. God had other plans.

Why does my life have to be so painful?
What’s wrong with me?
It’s not going to get better.
It could all be over soon, and then I won’t hurt anymore.

Kristen Anderson thought she had the picture-perfect life until strokes of gray dimmed her outlook: three friends and her grandmother died within two years. Still reeling from these losses, she was raped by a friend she thought she could trust. She soon spiraled into a seemingly bottomless depression.

One January night, the seventeen-year-old decided she no longer wanted to deal with the emotional pain that smothered her. She lay down on a set of cold railroad tracks and waited for a freight train to send her to heaven…and peace.

But Kristen's story doesn’t end there.

In Life, In Spite of Me this remarkably joyful young woman shares the miracle of her survival, the agonizing aftermath of her failed suicide attempt, and the hope that has completely transformed her life, giving her a powerful purpose for living.

Her gripping story of finding joy against all odds provides a vivid and unforgettable reminder that life is a gift to be treasured.


ABOUT THE AUTHOR:
Kristen Jane Anderson has been featured on Oprah and is a popular speaker at colleges, women’s and youth events, churches, and suicide prevention outreaches. A graduate of Moody Bible Institute and the founder of Reaching You Ministries, Kristen seeks to help those who are hurting, hopeless, lost, suicidal and depressed.


MY THOUGHTS:
I am impressed at how real and how honest Kristen was in this account of her death to self and true life in Christ. I was encouraged and convicted to be real and transparent even in my blog posts and how I present myself to those around me. That is probably why I haven't been quick to blog about much lately. In the beginning Kristen mentions that her story probably isn't that much different from the reader and at first I really brushed that notion aside. I may not have laid down on railroad tracks ready to end my life or tried to fill a void with drinking, drugs, or partying; but there was clearly a time in my life before Christ where I attempted to fill a void in my life with activity--school, sports, extracurriculars, etc. Frankly, everyone is trying to fill that void with something. What are you trying to fill yours with? It's a void that can only be filled by Christ.

Read chapter one HERE.

This book was provided for review by the WaterBrook Multnomah Publishing Group.

care conference

Today was our "big" meeting. A lot of the info we were aware of, but there was some additional information thrown onto the table as well. John and I have very mixed emotions about everything, but for now, we know what the next step will be.

It is very clear to us that there may come a point where we have moved from doing things FOR Malachi and doing things TO Malachi. Thankfully, we are not there yet. From the doctors' perspectives, their opinion is that even if Malachi survives to 5, 10, 15, 20, he will need complete assistance for activities of daily living and emphasized what a burden it would be on us as a family. Frankly, that side of things is bunk to John and I and we will do whatever it takes to properly care for Malachi--our convenience is NOT an issue. We understand that if all of Malachi's structural physical abnormalities can be corrected, there will most likely be severe mental and developmental delays. We cannot even come close to predicting what that will look like, so that worry is for another day.

From a cardiac standpoint, Malachi is doing well functionally. The plan for him is to undergo a heart catheterization sometime this summer and then heart reconstruction in October. This is MAJOR open heart surgery. In order for it to be "safe" enough for Malachi to go through that surgery, the thymus transplant and recovery MUST take place first. John and I are in agreement that in order to make an informed decision, we must meet with Dr. Markert at Duke. Her consult and opinion will greatly impact Malachi's future care. If she thinks that Malachi is not a suitable candidate for the transplant, we pretty much have no choice but to stop the pursuit of aggressive treatment.

But, if she thinks that Malachi would greatly benefit from this transplant, then we will be required to make a decision. Do we move forward with the transplant, or not? Obviously our first response is GO FOR IT! But there are other things to keep in mind. One thing that was brought up at the meeting today that we were not aware of is that with the complete DiGeorge diagnosis comes a greater risk for lymphoma (cancer). If lymphoma were to develop in Malachi's little body, he would not be able to fight it and he would not be able to handle chemo. Scary stuff. Also even with the transplant, there is no guarantee that it will DECREASE his risk for infection. These are risks that must be weighed with the benefits.

So, we head to Duke. We don't know how quickly this will all get thrown together. Dr. Markert is in a conference all week, so we won't get an official okay from her until Monday. Then we have to get all of the paperwork cleared through private and state insurance and travel arrangements need to be made. Then Riley ICU has to work with Duke ICU to get a room available and transfer orders in place and medical transportation must be arranged for Malachi to be flown to Duke. The delay is fine with me as we have planned to have my brother come visit next week and I'd like for that to still take place! Thankfully, they have a Ronald McDonald house close to the hospital and our Riley social worker has secured three roundtrip tickets for us to fly out for the consult. So at least we can be out there as a family. That's something.

animal sounds

doing animal sounds with emma...

me: i'm a snake! sssssssss....

emma: i'm a fish! fff----shhhhh....

still at riley

Nothing really new is happening with Malachi. Still has a cough and some yellow junk coming out of his trach. For this, they have started an antibiotic through his vent tubing by way of a nebulizer. All of his other antibiotics had stopped. He is still super irritable and you can tell that he's just in pain.

We were supposed to have a followup outpatient visit with cardiology today. I was able to get the echo and consult done even though we are inpatient-woo hoo! (I have found that not all specialties will do this). From a cardiac standpoint, his heart is doing okay. His atria, his ventricles, his main arteries, and his shunts are doing fine. This is good news. The plan would be for a heart catheterization sometime this summer and then a heart repair (Rastelli procedure) at age one (October 2010). Granted, all of this is based upon the possible thymus transplant as well as just being in a condition stable enough for major major surgery. Please pray.

Also, Wednesday will be our care conference where we meet with many specialties in the same room and watch them discuss Malachi and where it is basically an open forum so that we can ask questions and see where we are and where we can go from here. Again, pray. We have no idea where a lot of doctors stand on Malachi's overall prognosis. This will be a no holds barred/in your face type of meeting. We will need grace and LOTS of it as we get a clearer picture of Malachi's condition!

12 weeks

Had my 12-week appointment today. Super quick! I was in and out of there in no time. So far, so good. By God's grace I haven't felt nearly as sick as I had with my other THREE pregnancies (crazy to think that this is already baby 4) and have been able to provide for Malachi without the constant state of queasiness that usually accompanies me during this time.

Quick stats:
Weight: 158 (with full sweats and shoes on *wink*)
Blood pressure: 112/68 (amazing considering Malachi stuff)

However, the doctor was unable to find a heartbeat. With her little gadget, she was only picking up my heartbeat. SO, off to ultrasound we went (especially since my miscarriage happened just after 12 weeks). Sure enough, baby was there looking super active and sticking its tongue out at me and Emma. What a relief! A healthy heartbeat of 158 and an anterior placenta which is why we couldn't find baby in the first place.

and the winner is....

Rachel Brindley!!

Thanks to all those who entered ;)
Better luck next time!
(coming up in a few weeks)

last chance: book giveaway

Last chance to get in on the drawing for the free book giveaway "Indivisible". Simply click below on the "# comments" link and leave your email address! The winner will be chosen at random and contacted via email for a mailing address.

progress

Malachi seemed to have yet again a better day. From a respiratory standpoint, he's almost back to his home ventilator settings, just one more adjustment to be made which will probably take place this weekend. He was getting albuterol breathing treatments every four hours; these have now been spread out to every six hours. They are still working on adjusting his immunosuppressants to maintain a therapeutic level. On the surface of his skin, it seems like we can visibly see that his body is once again waging war within itself. Another rash is starting to appear.

Praying for the ability to organize a care conference with all of our main specialties. Malachi is a complex kid (how about that for understatement of the year!). It would be nice to listen to all of the different doctors who take part in his care converse while John and I are in the room. I don't know really how to prepare myself for that meeting or even what to expect. I just want to be on the same page as everyone else.

Pray that I don't become a sobbing fool in the midst of the meeting, and that I can at least save it for after when John and I are alone. I hate crying in front of the doctors. It's easier for me to process information and ask questions with clarity when I'm not blubbering.

help bring some color to Chi's room!

Click HERE to send a postcard to Malachi while inpatient at Riley!

(Can't believe I didn't check this out earlier!)

helpless but not hopeless

I have sat many times trying to find the words to express how I am right now. My thoughts have been so incoherent that I have yet to be successful. I don't think that I can do much better at this time as far as organizing my thoughts, but I need to get this out of my head. The last couple months (okay, well the last six months) have been the biggest rollercoaster of my life. If I did not have the Holy Spirit living and active within me, I can most assuredly say that I would have been in a deep depression--especially during Chi's three-week hospitalization the last half of April.

I am so thankful for the servanthood of my husband who day in and day out picked up my slack with regard to all my duties as wife and mother. In a matter of speaking, I was apathetic. I was unmotivated. I was at a standstill. Not only was I at a standstill, but life trudged on around me. My world was spinning. I had lost my footing. John most certainly did his best to hold my pieces together. To say the least, he is amazing.

I am also very thankful for the extra acts of encouragement that I personally received during that time. Cards, letters, a listening ear, a gift basket, prayers, and meals to name a few. The littlest acts of kindness and support and encouragement mean more to our family during this time than you could imagine.

Most of the time we feel helpless. I want to be there for Malachi. I want to know what questions need to be asked. I want to be able to take care of my baby. I hate that we can't do it on our own. I know that John just wants to protect his baby and his family. And right now, we just can't. We can't do those things. We can't and we hate it.

We are also quickly reminded that the times Malachi does make it home, he will also very quickly be back in the hospital. With each hospitalization comes the risk of infection. Infection that his body simply can't fight. Each hospitalization, infection, illness has the potential to bring about the conversation regarding how aggressively do we want to pursue treatment--conversation that we loathe.

Not only that, but at times I feel like God is preparing me for Malachi's death. I am reminded over and over again how short his life most likely will be. I have dreams where I am sitting at his funeral. I hear songs regarding missing loved ones who have passed. At times I feel like I am ready to face this, knowing he will be in heaven. Knowing that he will be whole. Knowing that he will not be feeling any more pain. But I am not ready to say goodbye. We are walking a fine line between hoping for a miracle, hoping for heaven, and facing the very real reality of Malachi's situation.

(on a bright note, Malachi had a better day than yesterday--we'll take it)

PICU rounds

So here's where we are...

Respiratory:
Chi's chest x-ray is still pretty cloudy, but clinically he is doing better, so that is good. He is still being treated for pneumonia. Crazy that after six months mostly spent in the hospital, this is his first respiratory infection. The plan is to keep him on antibiotics and start weaning his vent back to his normal home settings.

Cardiovascular:
Heart rate has been good. Blood pressure has been good. The blood transfusion immensely helped with his blood oxygen levels. Today he is on an oxygen support of 35% and sating 80%--perfect! The only other change is that with the long-term port in his chest along with the two shunts he has in his heart to help with bloodflow there is an increased risk for a blood clot to form. For this, he will be adding lovenox (a prophylactic anticoagulant) to our already massive list of medications. With the antibiotics he's current on while inpatient, this brings the grand total to just under 30--actually closer to 35 with all the one time doses of supplements, pain meds, and sedatives.

Nutrition:
Through the night, Chi stopped tolerating his feeds. He was puking most of it up. So, they are switching from 140ml over 1.5hrs every 4 hours to a continuous drip of 35ml/hr. Poor guy. I don't think his little belly will ever feel full :(.

Infectious Disease/Immunology:
His blood cultures and things have come back negative for growth at least 24 hours. If they are still negative tomorrow, then one of his antibiotics will be stopped. Also, his cyclosporine (an immunosuppressant) level is SUPER low. Dr. N wants his level to be around 200. Yesterday, it was at 80 or 90 (low) and today it was 20 (SUPER LOW). So it will be important to also get this corrected before going home. Malachi is super agitated and I have NEVER heard him cry this much or for this long. He's hurting and NOT happy whatsoever. Nothing I do is consoling for him. Poor thing. The pain and agitation could be do to his immunosuppressants not being at an appropriate level for his condition.

So before we can go home, he needs to be back to his home vent settings, off the antibiotics (they are given IV), and his cyclosporine needs to be at an appropriate level. Also, we are hoping to have a care conference with docs from the following specialties in attendance so that we can hopefully get on the same page with what direction we are moving with Malachi's care: Cardiology, Immunology, Developmental Pediatrics, Pulmonology, and ICU.

another day

I don't really have any updates. The one thing I forgot to mention yesterday was that Chi had his first IVIG infusion. Basically when people donate their plasma, it gets used for this type of thing. I believe Chi will continue to get these on a monthly basis. I did a little research online. I'm not sure how old the site was that I was looking, but at that time, one little bottle of that stuff (of which Chi received the whole thing) costs around $3,000! Isn't that crazy?

I spoke with Dr. N (immunology) yesterday. He said that he was just going to increase the cyclosporine that he is on as his levels were low and this lymph nodes are no longer shrinking. He also said that from his standpoint, he clears Chi for home again once this respiratory issue is resolved. We'll see what the ICU docs think today. Speaking of which, I better get going and head up to the hospital.

quick update - transfusion

I've been running around all over the place it seems today! Emma and I made it up to rounds this morning on the PICU floor, so that was good. You should have seen Emma all decked out in her adult size gloves and isolation gown and mask. I'd show you, but I forgot to take my camera. You'll just have to take my word for it. After rounds, we headed to John's office for a quick bite to eat. I'm updating quickly while I'm at my in-laws as they will be watching miss emerson this afternoon. Then back up to the hospital for mama.

So they dont' REALLY know why Malachi is requiring so much oxygen support. When I left the hospital earlier, he was still requiring an FiO2 support of 80%. Even with the 80% support, he was still many times NOT maintaining his saturations about 75% (okay range for him is 75-85%). It doesn't seem to be a secretion issue as his sats do not improve after suctioning. They are thinking (after reviewing his chest x-ray) that it is most likely a pneumonia-type problem and have begun him on a couple courses of antibiotics for treatment. His lungs showed to be pretty wet and there may have been a slight collapse on one side. They may try to increase some of his ventilator settings, or they may switch him to a different ventilator altogether so that they have more control over more settings. They also may try an extra dose of lasix to get rid of some of the extra fluid in his little body.

The PICU resident just called and asked for consent regarding a blood transfusion. His hematocrit level was only 30. For his heart condition, a safe hematocrit level is 36. Hopefully the transfusion will allow him to easier circulate oxygen throughout his body.

That's all I've got for now. Headed back up to the hospital to keep and eye on things and talk to a few more doctors.

Staying in the PICU

When I called pulmonology today to let them know of Malachi's recent increased O2 requirements, we were asked to bring him in to the ER. Of course, when we arrived he was awake and sating just fine. He had a bit of a fever when we arrived, but that quickly resolved. A bunch of labs were drawn from his port and sent off. I was happy to hear that his white count was down to 22,000. This is still very elevated, but much better from the 40,000 he had last week!

Dr. N also stopped by to check in on Malachi and actually shook my hand because of the care he knows John and I are providing at home. He was very impressed that we lasted a full week (okay, almost a full week) at home and considered it quite an achievement. It's nice to hear some third-party affirmation from a respected physician that all of our hard work and love is really benefiting the health of our child. He was not too worried about Malachi's current state, but he would check in on some things and get back with us when we are at the hospital tomorrow.

Along with labs, they also took a chest x-ray and sent off a blood culture and viral swab. Chi will be in isolation for either the next 24 or 48 hours until the cultures come back negative. This means gowns, gloves, and masks for all who enter his room. Chi's lungs looked "fuzzy" on x-ray. Basically this is questionable for pneumonia, so they are going to start him on an antibiotic just in case. His lymph nodes are also a bit bigger than they've been the past few days, so they may increase the amount of steroids he is on as well.

I don't think they were really going to do a whole lot with him this evening. I know they wanted to get an arterial blood gas (which means a needlestick, even though they have port access). At least they had put a numbing agent on the area before they started finding an artery. I think he will pretty much be in observation status until they can get some results from the blood work that was sent.

What I've Been Reading... Indivisible

ABOUT THE BOOK:
An inseparable bond.
An insatiable force.

Battling his own personal demons, Police Chief Jonah Westfall knows the dark side of life and has committed himself to eradicating it. When a pair of raccoons are found mutilated in Redford, Colorado, Jonah investigates the gruesome act, knowing the strange event could escalate and destroy the tranquility of his small mountain town. With a rising drug threat and never-ending conflict with Tia Manning, a formidable childhood friend with whom he has more than a passing history, Jonah fights for answers—and his fragile sobriety.

But he can’t penetrate every wound or secret—especially one fueled by a love and guilt teetering on madness.

From best-selling author Kristen Heitzmann comes a spellbinding tale of severed connections and the consequences of life lived alone.

Download Chapter One HERE.
This book was provided for review by the WaterBrook Multnomah Publishing Group

ABOUT THE AUTHOR:
Follow Kristen Heitzmann online at www.KristenHeitzmann.net.

While homeschooling her four kids, Kristen wrote her first novel, and it grew into a five-book historical series. Since then, she has written more historical novels and several contemporary romantic and psychological suspense novels. She lives in Colorado with her husband, Jim, and sundry family members and pets.


MY THOUGHTS:
Fiction is not my forte. But I would definitely recommend this book to those who enjoy a fairly quick read. In my overanalytical mind, I kept trying to theorize what was really going on? who was really behind the happenings of these seemingly animal mutilations? how are things going to play out? I was not disappointed. There were a couple relationships that seemed to develop quickly that could have used a little more build up/background to go along with the story, but realistic nonetheless. The author also did a good job at defining the characters: who they were, where they came from, what haunts them, etc. In my "spare time" I would like read a few of her other books as well.

GIVEAWAY:
WaterbrookMultnomah has graciously given me an extra copy of this book to pass along to one of you. To enter, please leave a comment and an e-mail address where you can be reached. A winner will randomly be selected and I can send a copy of Indivisible your way!

Staying in ICU

PICU south, here we come. Update later.

back to the ER

hopefully it's nothing and pulmonology just wants to take a look at him to make sure all is well. pray that this is the case. we like having baby home. we're on our way to the ER here shortly once I get all of our stuff together and help arrives! pray for malachi and that it's really just nothing. his oxygen requirements will probably have to come down in order for them to send him home today. not for certain, but i guess we will find out.

Neurology Follow Up

Well, we finally made it to our second follow up appointment (the first being immunology where we were admitted to the hospital this last time). I wasn't exactly sure what we should be expecting at this appointment. They did a head measurement and I verbally rattled off Malachi's medical history (which I think in and of itself gave me a headache). All in all, we will begin weaning the phenobarbital. WOO HOO! That was my goal for this appointment. It is a narcotic, so we can't just quit it cold turkey without there being withdrawal and that sort of thing, so it will take about 3 months to be completely off of it. I really liked the doctor that we met with as well. The plan is to get some labs drawn for a phenobarb level to see where we are starting from and get an EEG (measures brain activity) a few months down the road to see if there is any seizure-like activity.

The only other thing that is interesting (for lack of a better word) regarding our last two visits to the hospital, both the cardiology fellow as well as the neurologist today asked if anyone had spoken with us in the past regarding the size and position of Chi's liver. If I remember correctly, I believe they said it was enlarged and lower in position than it should be. Up until Saturday, I had never heard any doctor mention this. Also, I was told that his liver enzymes were elevated during the labs that were drawn on Saturday in the ER.

For some reason, Malachi has been requiring more oxygen support today than usual. He was up to even 55% at one point this afternoon. Not sure why, but he is beginning to desat a little more while he sleeps. We have decided to try turning his rate up from 10 to 15 while he sleeps just to make sure he gets at LEAST 15 good breaths a minute. So far it seems to help.

With the liver issue, increased oxygen support, and increased fatigue, I will give Dr. N our immunologist a call tomorrow just to see what he thinks.

11:00 update

We're HOME. Thankfully, the cardiology fellow who is on this weekend is "pretty" familiar with the complexities of Malachi's heart issues. Although, there aren't many at Riley in the cardiology department that we have yet to work with. On two separate occasions today Malachi was sustaining a heart rate from 180-230 bpm. A kid with a normally structured heart could tolerate this for over 24 hours, but it's not so good for our little man. At the hospital, he was still jumping all over the place from 110-210 bpm, but he was not sustaining the high heart rates. After a few more hours of waiting for results from blood work and things, the rate finally began to even out around 130-150 bpm. The fellow left to go speak with an electrophysiologist (the kind of specialized doctor who is more familiar with drugs like flecainide) to see about weight-adjusting his dose and sending us home. And that's what we ended up doing. He was still having spurts into the 170's-180's range, but only when he was ticked. Normally, Malachi doesn't get too ticked, but tonight something as little as suctioning his trach would set him off. John decided to pick him up and hold him tight for a little while and his rate didn't necessarily calm down right away, but his demeanor was MUCH improved and he quickly fell asleep. We are thankful to be home, but we won't be shy about calling the cardiologist on call tonight either if something seems fishy! No night nursing help tonight, so John gets first shift and I get the early morning shift. Pray for strength and sanity!

First ER visit

Chi's heart rate has been all over the place since about 10am this
morning. His pulse oximeter has read as high as 230 and as low as 56.
After speaking with cardiology throughout the day, we finally came in
to the ER. His rate is still all over, just not as wide of a scope.
100 to 180 is still irregular to me. His port was accessed, labs were
drawn, chest xray taken, and 12-lead EKG complete. We should get lab
results back soon and THEN cardiology will be consulted. Why they are
the last to get involved, no clue. Update to come later.

11 weeks...

You should have seen it right after dinner!

Some lovin' with my babe!
Trying something new. I took a little bit off the back and just tried to tame the bedhead. Not bad, eh?

Guess who's happy to be home?

I personally didn't see a smile from our little man the entire three weeks he was in the hospital. Now that he's home, it's a different story. He hasn't been awake during the day a TON, but when he is, he's usually in a pretty good mood. You can tell his bum is still super uncomfortable both in its appearance and his reaction to it. And he's still super susceptible to any sort of infection due to his immunosuppressants, but he's just much happier and comfortable at home. Can you blame him?


Look at that face! He was all smiles the other afternoon through the time John got home from work, so he got to take part in the smiles too. He definitely wears us out--physically and emotionally, but he's well worth the extra effort required.


One more thing I want to document so that I don't forget (not that this memory will escape my mind for a very long time, if ever) is on Wednesday the first night he was home, I leaned in close to give him a kiss before heading to bed. He looked over toward me, reached up his little hand, and started just feeling my face. As if to say, I know who you are. I know you love me. I trust you. I know my mama.

CHEESE!!!

dreaming?

This morning at around 5:00 a.m. John woke up to find Emerson sitting on the floor near my side of the bed. Her head was down. Creepy. John asked, "Emma, what are you doing and how long have you been sitting there?" She slowly stood to her feet and just started at us. Even creepier! Wanting to verify that it wasn't some creepy demon, I asked, "Are you really Emma?" (She said something in reply, but John and I were too out of it to remember exactly what it was.) Then, she crawled up into bed with me for the next couple hours.

When John's alarm went off for him to get up and get ready for work, Emma stated matter-of-factly, "I need to get my socks and shoes on." John said, "Um, why do you need your socks and shoes?" Emma's response: "So we can go get tacos."

Random.

pay the bills (part II)

John ran our rent check to the apartment office. Emma didn't realize he had left. She was running around our home "Where'd daddy go??" I replied, "He went to go pay the bills." Without skipping a beat, "Oh, he go to work."

Close, Emma. Close.

pretty mama

As I was getting ready in front of the bathroom mirror, Emma came in to offer her two cents...

"You're pretty mama. That shirt is SO pretty. You are pretty too. And fluffy. And smelly... And yucky..."

Thanks, Punkin'

home again

After a three-week hospitalization, we are finally home again. Throughout his stay, he had three PICC lines placed (one was pulled the first day we were supposed to come back home, but he started acting up again and ended up staying; the second got infected; and the third was pulled the morning of our actual discharge). Also, within the last couple of days he had a portacath placed and his PEG tube was switched out for a MIC-key button. We had started conversation about switching out his feeding tube device about a week ago and we were told they would need to speak with the general surgeon who placed the PEG tube. By Tuesday, nothing had been done about it. I brought it up in rounds Tuesday afternoon and was told "Well, Dr. R should have been contacted..." but maybe no one followed through with this? Anywho, so it was done like an hour before we walked out the door.

Let me tell you, I was NOT prepared for how they changed these out. I was warned that there might be a little bit of bleeding and discomfort. I should have known better when the nurse started apologizing to Malachi before she even began. So when enough force is applied from pulling the PEG tube, the balloon or whatever on the inside collapses so that it can come out. Well, his balloon did NOT want to collapse. After a couple tries of the g-tube nurse pulling her hardest, she took a quick break and then wrapped the PEG tube around her fingers and tugged a few more times before it finally popped through. I should not have watched her tugging. I should not have looked at the bloody rag after it was removed from his belly. Gross. Gross. More gross. I tried to stand up and look interested in what the nurse was trying to tell me. Instant dizziness. Instant loss of color in my face. I was not in good shape. Not in good shape at all.

I had to leave the room to find a cooler place and drink some ice water and try to get my mind of things. After I regained my composure, I went back in to start getting him ready for home. I couldn't even look at the little guy without feeling queasy. The semi-dried blood on his belly wasn't exactly helping matters. Well within the next couple hours, he ate (which takes 1.5 hrs) and then we packed up his stuff and got his meds from pharmacy. Got him all loaded up into his stroller and switched to his home ventilator. As we were all walking out, he started puking up blood. Yeah, that would be from the internal trauma of switching out to the button and the blood that had just pooled in his little belly. Nasty. He was gagging and puking it out his mouth and his nose. It looked awful. I'm sure it didn't feel well from where he was sitting.

When we finally got home and John helped me get him all settled in to his room (well, it was more like me helping John--he's a stud at getting Chi's stuff set up). But it came time for him to eat and I couldn't remember what they taught me with how the button was supposed to work and all that. I didn't want to mess it up! I called in to the Infant ICU and ended up in tears because I just wanted to do it right. At least I can blame it on pregnancy hormones, right?

Thankfully we had a night nurse last night and will have one tonight. Unfortunately, we don't have anyone for Fridays or Saturdays. Not too thrilled about this obviously, but we'll do what we need to do. I'm going to be VERY tired when the weekend is through though, I can tell you that much!

Chi has been stable and content at home. He's been sleeping a LOT, but I think some of his new meds make him drowsy. Also, not counting the diaper creams he gets for his yeast infection, Malachi gets 41 scheduled doses of medication a day. He also has a few prn medications that I can give if he looks like he's really uncomfortable (like Tylenol). Thankfully we don't need to show up for any appointments for another week. We will be meeting with immunology on a weekly basis to wean some of his steroids and things that were started for his lymph node reduction.

tonight's date is brought to you by...

dinner at...

and window shopping at...

and "drinks" at...

while perusing the shelves of...
It was great to have a guilt-free night out with my amazing husband--just the two of us. We spent exactly the amount of cash we had received just for this purpose. It was a wonderful night out. Our last night of "freedom" until Chi's next hospitalization. But we'll cross that bridge when we get there.

discharge: TOMORROW

So the plan is for Malachi to be coming home TOMORROW!! Surgery went well this morning and he's "stable enough" in all aspects to come home. He just has to behave himself through the evening and we'll be set! It will be nice to be back under the same roof again, that's for sure. He was pretty sleepy still from the drugs in his system from surgery, but God was definitely giving him peace and comfort--he was smiling! Maybe he was dreaming about home... Either way, it was nice to see as I hadn't seen a smile in at least three weeks!

His white count is still high and he will continue on a high dose of steroids. We will be in clinic with the immunologist once a week for a while to monitor this dosing. Praying for the energy John and I will need as we bring baby home!

Cleaning help

We are praying Malachi gets to come home this week. If I get all of
our stuff picked up and out of the way, would there be any interest in
helping me out by really deep cleaning our apartment while I'm out at
the hospital tomorrow (Tuesday). It would mainly be our kitchen and
two baths. Let me know! It would be GREATLY appreciated.

a better day

This is how Malachi was for most of his morning! He has a horrible yeast infection on his bum (most likely due to the antibiotics he was previously on). Our nurse today left him open to air. You can see at the bottom of the picture a little blue tube, this is some oxygen blow-by. He was a much happier baby without a diaper irritating him...
It was nice to see him at least content. I think he "almost" smiled... not quite, he's still pretty uncomfortable, but the rash is at least better, his color is better, the lymph nodes aren't nearly as hard, and his skin feels like the proverbial baby's bottom (which is much better than the state of Chi's current bottom).

A quick shot of his PICC line on the left leg and his "mankini" (as the nurse called it) to keep him from peeing all over the place.

AND, last but not least, just before his six-month birthday this popped through! He loves gnawing on daddy's fingers!

Oh, and the current update:
Malachi's white cell count is still super high. Yesterday, his white count was up to 42,000--crazy high. So they rechecked his blood count again today and it was down to 34,000. This is still really high, but at least it's not still rising. Also, it has been suggested that we should consider a Port-A-Cath for Malachi due to his lack of access. They do not want to send him home with the PICC line still in due to how much of a risk for infection he is. Basically, he would need to be scheduled for surgery and this device would be implanted under his skin. Gross. The only problem is that Malachi is running out of areas to place a line and in the case of an emergency, he NEEDS access--and fast.

caught red-handed

This is what I found when I ran into Emma's room to check on her after I finished my shower the other morning...

torn--rambling

How do I keep things "normal" for Emerson when my heart is torn to pieces? Why must we carry on with life as usual? John still has to work. The chores still need to be done. Emma still needs consistency in her toddler life. She needs stability. I want life to just be put on hold for a while. Besides going back and reading past posts, I hardly remember the last 6 months of my life. I'm just torn. I'm finding it hard today to call the hospital and see how Malachi is doing. I'm finding it hard to enjoy my time with Emerson doing "normal" kid things without feelings of guilt creeping in. I feel like I don't even know what the word "relax" means anymore. I hate not knowing what the next few months will bring, but I'm pretty sure knowing wouldn't provide me much comfort either.

The only thing that might help Malachi is a transplant at Duke. This surgery has only been done on 61 patients with the current staff in the past few decades. In reading another mom's blog of her son with both CHARGE and DiGeorge, they signed consent for the procedure in February (2007), were transferred to Duke in April the same year. They waited for months for a compatible thymus. Then there was a couple month recovery at Duke before being transferred back to their original children's hospital that November. Besides the timing of all this with the new baby's arrival in November, the procedure and hospital stay alone (at least for this other family) was over $1 million. We have three forms of insurance for Malachi, one is private insurance and the other two are programs through the state. It is probably safe to assume that the Indiana programs won't cover medical costs accrued in North Carolina. Our private insurance has a $5 million lifetime maximum for Malachi. As of 12/31/09, Malachi's total medical expenses paid out by private insurance was already $1.2 million. We make well under $20/hour; we can't even wrap our heads around MILLIONS of dollars. And on top of all that, John can't just take months off of work. Can I handle three kids in North Carolina?

See... this is why I can't let my mind wander. Just wanted you all to get a glimpse. Not to mention it helps me stop dwelling on some of these questions to which there are no answers.

with hesitancy

I've been hesitant to write anything over the course of this past week because frankly, my mind is mush. I've been on a rollercoaster of emotions and completely exhausted. There were many moments where I would have a profound thought or want to remember what I was feeling at that time and be like, "I should write this down." Of course, I never did and thankfully I don't really remember much. There were and still are moments of hope in an unfailing God, but when I am weak and my defenses are down I become mad, frustrated, and just in despair.

John has been amazing throughout this whole ordeal. He has gone above and beyond picking up the slack that has resulted from my apathy. He has taken care of meals on the days when nothing is scheduled to be delivered, he has done the dishes, he has tidied up our place, he has given too many back rubs to count, he's allowed me to rest so as to take care of the new life growing within me, and overall he's been a stronghold for our family. I would not be functioning without my husband.

The biggest blow we received this week was when we were presented with the information regarding Malachi's inability to create his own T-cells required in the development of a functioning immune system. Most of the time, I feel like we are just waiting for Malachi to get sick--so sick that we have to decide to turn off his ventilator and stop most of his medications and just keep him from feeling the pain until he passes. When I allow myself to get that far, my mind then ventures even further. How much medical technology is too much? What will the long-term effects be of all this medication we're pumping into his little body? Am I ready to say good-bye? Funeral preparations? A scary road to go down.