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Saturday, August 31, 2013

Baby Isaiah

(photo source unknown)

I am now at a place where I can finally speak.

Long, hard journey that is not quite over YET, but we are well on our way..

Many of you have no idea that we have been living this nightmare out and up until this point, I have not been able to give a voice to our situation because the days and nights have consumed.

[also, trying to complete this in a hurry, as I don't have much time on my hands these days.. please excuse the mistakes]

so, here goes...


2013.. New year, new baby..

We came into the year overjoyed with the birth of our son in December, and were just settling into our new life as parents of two beautiful children.. A six year old little girl and a newborn baby boy. Our daughter transitioned so beautifully into 
Big Sister and was the biggest little helper from day one.


We chose to name him Isaiah Quinn..
Isaiah meaning "God is my salvation, God is my helper"
and Quinn meaning wisdom.
I actually searched out the word "wisdom" and found names that translated. Quinn was not a favorite of my husband's but the meaning won out over the actual name.


We have found that God is our Help, our only Help, 
and the wisdom we have gained in this season is tremendous.

  My husband and I have a wonderful marriage and for that I am so thankful. Little did we know that things were soon to take a drastic turn and days of grief would soon consume.. those days then turned into weeks, and the weeks into months and we would end up in the most trying, difficult season in our lives.. 
the fact that we have a rock solid, Christ-centered marriage has helped us more than I could ever put into words.

Christ is our saving Grace, our Strength and our Joy 
in the midst of tribulation. 

Everything was going great into February. The last pictures I took of him before things changed were actually near Valentine's day. I purchased a sweet little hat and he looked so handsome in it! His skin tone was more like his daddy's and his eyes had not yet changed, a beautiful slate grey. 
He had the best little personality..

Mama's little man. 





Right after Valentine's Day, he developed this rash on his cheeks. We took him for his 3 month check up to our pediatrician, and he told us it was contact dermatitis and to change laundry powder and the like. We have always used organic and all natural products but we went unscented with everything. Changed shampoos, lotions, deodorants, you name it, we did it. 

His skin was great at home, but when we went out anywhere and someone held or touched him that had on perfume/cologne, regular makeup or clothes softener, etc., he would start screaming and immediately break out in a rash. We stopped letting people hold him or made sure there was a blanket in between..

..still his skin was super sensitive and it was hard to keep him away from everyone.



In March, we were cleaning our church one Saturday and he was around a child who had impetigo, a secondary skin infection. By Monday, a blister developed on his right cheek that became crusty with infection and seemed to spread to his shoulder and elbow. He had a scratch on his cheek from his fingernail and that is where the blister developed.


It continued to look bad, and we were worried, so we made an appointment with our ped, as well as with an allergist.
Two doctor's appointments later, we were told it looked like 'eczema' and the go to medicine for that is OTC cortisone. We had friends who also had children at the same time diagnosed with eczema and they successfully treated it with OTC Aveeno cortisone - which is considered a low dose steroid.  

Because of the secondary infection, our son was also prescribed his first ever antibiotic, cephalexin. 

 Within 4 days we were in the emergency room because it looked like the skin was melting off of his cheeks. He screamed like I had never heard him scream before and was in so much pain. 


The ER doctor and nurses had no answers and their diagnosis:
'severe eczema'.

We were prescribed an Rx steroid as well as an anti-fungal to cover all angles, I suppose. For some reason I never used the Rx steroid then and only used the anti-fungal once.

The redness started to creep all over his head.




In my family, on my mother's side, we have extreme medicinal allergies. I am allergic to penicillin as is my great grandmother. When she took certain antibiotics, her cheeks would do the same as our son's.. turn bright red and burn. My mother also has severe allergies to morphine and other medications.I used a cyclene mix for a numbing cream once and instead of putting it on a large area, as I was supposed to, I thought I would try it out first in a dime size spot.. I ended up passing out.

When I had our son in December via C-section, I begged the doctors and nurses to take me off the sedation meds because I felt like I was going crazy. My feet became so swollen and I was so loopy I could barely focus or talk. They would not take the IV out of my hand, but agreed to put a button on to push if the pain got to be too much. It was not used and I was so relieved when they finally agreed to remove the IV. I would rather deal with the pain than deal with the way the drugs were making me feel.

I can count how many times I have taken a tylenol in 5 years. I would just rather use natural means to help with any ailments I might have because of this and the side effects I get from medications. 


From March to May, we continued to chase this 'severe eczema rash' from the top to the bottom of our son's body, a handful of times with OTC cortisone creams. The redness crept from his head to his shoulders, from his shoulders, down both arms and down his tummy and back to his legs.. we did not understand why things were getting worse, extremely worse!

He developed an odd metallic smell and his body temp could not/would not regulate.. he was beyond miserable. His skin was so hot to the touch and we would FREEZE trying to keep him comfortable. When we left the ER in March, he and I started sleeping in a recliner and the only thing I could cover him with was pillow cases.. even that made his skin blister and seep this clear fluid wherever his body came in contact with heat. I was sleeping in hooded jackets, sweatpants and boot slippers while he barely slept in a onesie. The recliner was new when we started sleeping in it and it now looks like it's 10 years old. There are holes and we have stretched the leather from living in it night and day.




 Our life began to spiral downward with no hope in sight. The symptoms kept getting worse.



  
I only time I left the house with Isaiah was to go to the doctor. Everything came to a screeching halt, only to revolve around us trying to bring some sort of relief to our son. My husband and I were at a loss and NO ONE had any answers for us. We were doing everything we could just to try and stay afloat for our family. 

People in our lives meant well, but everyone had a cream, ointment, or lotion that they knew would help and we even had conversations with those who would call us with these crazy rare diseases and sicknesses to try to label what was going on with his body. I would hang up the phone even more discouraged.

Hardly anyone knew what we were going through and to most now, I am sure, reading this is a shock. Only a handful of our church family knew and we even received some messages from people telling us we needed to build our faith to receive the healing we so desired to see manifest. Really? .. 

God and our faith were the ONLY thing we were clinging to.. 
No one seemed to understand, and honestly, we didn't either. 
We just kept calling those things that were not as though they were. 




Most people had no idea of the depth of the pain and suffering.. in the beginning of this season, I actually preferred it that way because we had no answers as to why our son's skin and health was rapidly deteriorating and why he looked radically different than any and every other child I had ever laid eyes on.

I stopped calling and talking to people. Our phone would ring and I would not answer it. Honestly though, most times I couldn't even if I wanted to.

We do have a few people in our lives that in desperation, we would send a text to that just said, "Please pray.." and thank God those people would. I thank Him for those He placed in our lives that did help carry us through on their prayers even when they did not know what to say or physically have anything that would help.
 
Isaiah cried day and night and we held him 24-7.

The torment in his body continued.

Still no answers.

We prayed.

We cried.

We prayed and cried some more.

Extreme suffering is an understatement for what our son was going through. We did not understand because my husband nor myself have ever had any skin issues or eczema.. neither did our daughter. This fell out of the sky.. 
or climbed up from the pit of hell, we would agree. 

It seemed there was no end in sight and  Isaiah's health continued to plummet. 

 

He was labeled "failure to thrive" as he stopped eating and was continually losing weight. 
He was almost 6 months old and barely weighed 10.5 lbs.
Every day I placed him in a plastic bin, wrapped lightly in a pillow case and placed it on a postal scale 
to see if he had dropped ounces. 

Almost every single time he had. 

I dreaded even laying eyes on the postal scale because if he dropped ounces, off to the doctor we were to go. 
We tried to get him to eat, but he was so lethargic, he could barely lift his head.

The only time his skin semi-cleared was when the cortisone was applied but that was short lived, only lasting a day or two and it never would fully resolve the rash or the seeping skin. I would apply it for a day and then get so angry and toss the tube. This happened only a handful of times because on the inside I did not feel like I should have been using it in the first place.

He began to be lethargic and even more sickly.



I was breastfeeding him exclusively and went on a strict elimination diet trying to figure out what was going on with him because we had tried to remove everything else we could think of in the house. I lost almost 20 pounds in the process and my milk almost dried up. People told me to put him on goat's milk formula or a sensitive commercial infant formula. Our dog was locked in her crate in the laundry room or outside in a large backyard pen at all times. A coworker of my husband's bought us an expensive air purifier to try and help. No matter what we tried, things continued to get worse. We ended up not having company altogether and even withdrew from friends and family, feeling we really had no choice. A lot of people in our lives recommended we find a new pediatrician, get a second opinion, use more potent meds/steroids.. 

"Medicine should have cured him by now.." 

What was wrong?

Life was lonely and hopeless.  

My husband was trying to help me hold things together at home and working 40+ hours at his job. I prayed for his strength because without him, I would have sunk. We took turns holding Isaiah as our baby boy cried the hours away. 
Most of the time, I wept along with him.
We were visiting the doctor weekly and Isaiah was seeping so much fluid from his little body that he would soak anything he touched and his onesies would be stiff when we took them off of him.

He would fail the CMP heel prick tests miserably as everything was off in his body. His albumin was the worst of all because the seeping was so bad. Albumin is the blood protein and it was always dangerously low.

 He had been on huge amounts of vitamins and supplements daily for months, probiotics and allergy medicines - nothing seemed to help. Every hour he had a medicine dispenser stuck in his mouth.

 

I wish I would have taken a picture of all the creams and lotions before I bagged them all up and tossed them in disgust.

The suffering continued.

There were so many days I could not even take pictures because he was in so much pain. His skin was blistered and held heat like I could not believe. 

From March to July, he was in his baby bath in our kitchen sink AROUND THE CLOCK.. day and night. I could not use any soaps or body wash on him because his skin was super sensitive.. only soaked him in water.

He got to the point where he was taking 12 baths a day for at least 2 to 3 of those months.

The only time he slept was in his baby bath and I would let the water run over him for 30 or 45 minutes each time. 

When I shut the water off, he would scream and  I hated turning it off and taking him out.

I would have left him in there for months if I could because that was the only place he knew peace.



















I would sit in our kitchen, all hours during the night, when our house was quiet, all but the water running in the sink and everyone else was sleeping..

I would pray and cry and hurt, seeing my sweet baby sleeping in the sink.

Lack of sleep can really mess with your mind and it was only the grace of God that kept me from losing mine. 

The minutes drug by. The days seemed like years and the torment continued to get worse. 

Just when I thought I was at my breaking point, the Lord would breathe on me.. speak something straight to my soul and I would press on another minute, another hour, another day, another sleepless night. 
 In my flesh, I honestly wanted to give up.. 
more times than I can even count.. wave the white flag of surrender.. but He would not let me.

His strength is made perfect in my weakness.

I would just hold my sweet baby boy, sigh and cry.

We had healing scriptures all over our home.. we quoted them out loud.. we immersed ourselves in bible teaching, more so than we ever had. 

We were rebuking the enemy, using our prayer language more than ever, seeking the Lord.. 
thanking Him, praising Him, even in the midst of the storm. 
We started watching Joseph Prince and other bible teachers daily and those teachings transformed us and our way of thinking, even though my husband and I have been saved and in church ministry for more than 10 years. 

You never stop learning when it comes to the Lord and the Word.

 I began to truly seek Him in the suffering and in that, my thought process was transforming, even though it seemed like nothing was happening.

I should add that when I was pregnant with Isaiah, I started praying for a healing ministry for our children. That when they laid their hands on the sick, those people, through the power of the Holy Spirit in our children, would recover. I had never done that until Isaiah was in the womb. 
I did that for months...

I knew in my spirit, that no matter what things looked like in the flesh that God had a plan and many, many times (daily) I had to cast down the imaginations from the enemy.. I could not go by what I saw, but I had to go by what I knew.

We kept pressing on.
 




 


I quoted Psalm 91 more times than I can even count. 

Two of the many scriptures I quoted all the time are 
Jeremiah 33:6 Behold, I will bring health and cure, and I will cure them, and will reveal unto them the abundance of peace and truth.

And 1 John 4:17 ..As Christ is, so are we in this world.

Is Christ seated next to God with 'full bodied severe eczema'? No, as He is so are we in this world. Does He have itch, wounds or the inability to grow or thrive? No! Christ is the example of perfect heath. As He is, so are we - our children - in this world.


  I knew the Lord held the answer, even when no one else did, and I never once, even in my grief, blamed God. 

I did ask Him why, and in tears many times told Him I did not understand. 

I just continued to press into Him and say out loud, 
"I know You are for us, not against us"...  

"Your ways are not our ways and Your thoughts are not our thoughts.." ..

"Lord, I am hurting but I trust You.."

  We had to shut the mouth of the enemy, because he has a voice as well and he will speak loudly, if we allow him to.
 The goal of the enemy, when we go through any struggle, is to get us to take our eyes off of our Savior.

I was never suicidal although I admit, I have never in my life had depressed and anguished thoughts like I did in the beginning of this season. I felt so lost. I have experienced deaths in my life and pain before but seeing our child suffer to the degree he was was almost more than I could bear. I physically and mentally did not think I would make it through. It brought my husband to tears and he rarely ever cries. We were both so broken on the inside, just hanging on to what felt like loose strings..

I would tell the Lord, 
"I know You are here.. even though I don't sense You, hear You or feel You most moments through my day right now.. 
I know you are everywhere.. 

..if I make my bed in the depths.."

........

My husband and I both felt so alone.

 Isaiah began to lose all of his hair and he stopped meeting his milestones. He was held all the time because we could not put him in his cradle or on a blanket on the floor because of the blistering. His body temp was still all out of whack.



In May we went to the doctor for one of our weekly visits and Isaiah's health had declined so much that they wanted to give him a bolus IV bag in the office. They stuck him multiple times but could not get a vein anywhere. I was screaming on the inside holding his precious little body in my arms. He was so dehydrated and his health was severely failing. Our ped wrote up papers to have us admitted immediately to one of the large local hospitals in our town. This would end up being the first of 3 extended hospital stays....

We got into the truck and drove straight to the hospital. I did not even put him in his carseat, just held him all the way, crying and speaking life over him. He could barely lift his head.

It was all I could do to keep from falling completely apart.

When we got to the children's floor, again a vein could not be found and they had the nurses from picc come and place an IV in his head.

My husband overheard a nurse in the hall call to another and say, "Oh my gosh, you have got to come see this kid.."

Really...?

Many admitted they had never seen skin as broken down or as red as his..







I felt horrible.. dying on the inside.. 
wishing I could just open my eyes from this nightmare..

Many doctors came in and out of our room. We saw a GI doctor who told me I was poisoning my son with my breastmilk and I needed to stop immediately. That devastated me even further. On the inside I did not believe it, but everyone, including those in my family agreed with him, telling me the same, because we had tried everything else. I know they only wanted to help Isaiah but I know now, I should have went with my gut.. they inserted a Gtube and started him on Neocate - an amino-acid formula, which the GI doc said would be the 'cure all'..

..more about that later..



An allergist then walked in and told us that our son needed his first rounds of Rx steroids, that the OTC we had been using from March to May was not enough. He needed to be "blasted" with high dose IV steroids as well as Rx topicals to "make his skin clear". The allergist told us that Isaiah "might rebound" and when we asked what that meant, he said after the steroids wore off it could go into the worst "flare" he has ever had. I told him I did not want to do that then because there is no way I wanted to watch him get worse than he already had been. 

Was this man absolutely crazy? 
How could things "maybe" actually get worse?

He said over and over that it "might" happen but told us because of the condition of his skin we really had no choice. He would get better after that flare if it happened. 

 We were at a loss. Not understanding what to do and feeling totally helpless seeing our son's body continue to get more red and more hot when we did not even think that was humanly possible. Our ped, who was against steroids throughout the entire ordeal, gave his permission to the allergist for them to be used because he was at a loss as well.

The allergist ended up prescribing four rounds of IV steroids, DermaSmoothe oil, as well as 2 other Rx topicals (requesting his records now to see exactly what those were..) over a 4 day period. Isaiah screamed during the application of them and they did not seem to work at all, especially during the first 24 hours. He itched like crazy and at one point seemed to choke and almost stopped breathing. I panicked, pushing the nurse button and screaming and the nurses rushed in to give him oxygen.

He also received 4 bags of albumin and rounds of lasix to help him pass the fluid because he would not urinate and the fluid was going into third space. His body was so swollen that his skin started splitting, especially on his shins and the places where the topical steroids were applied. His body poured fluid and he screamed and screamed.
  Every 4 hours they were coming in to stick him for blood work and they never could get veins. I could not bear to see the suffering continue. He was a human pincushion. It got to the point where I would have to leave the room or my husband would have to go alone to have it done because I was so mentally drained, I could not take anymore of hearing him scream or seeing him tortured.





After the third round of IV steroids, his skin was less red but became pasty white and even more sickly looking. The crazy body temp stuff was still going on and he was still itching like crazy.. the day before we left, my husband left early from the hospital to the nearest CVS and purchased Cortisone 10, brought it back and we applied that to no avail.



With all those steroids in his little body, this was the clearest his skin was during this hospital stay.




We were there for 7 days. The steroids had caused him to semi clear and he had gained some weight from the G-tube being inserted.

When we left he was smiling for the first time in months. We had not even heard his laugh since he was a tiny baby and we thought maybe we were on our way to healing.




Little did we know that all hell was truly about to break loose..

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Home from the First Hospital Stay...