Off to Emory Atlanta..

Monday, September 2, 2013

When we got home from the hospital stay the first week of July, Isaiah developed a fever our first night at home.

He received a half bag of albumin right as we were leaving the hospital that Saturday.. would have been a full bag, but they lost the vein in his head. Rather than he being stuck again, when they were planning to release us anyway later that day, our ped said that a half bag would suffice. He had already received 3 others during that same stay.

The fever crept up to 102 by Sunday morning but into the am hours of Monday, had climbed up to 104.2. His little body was burning up that night and I was extremely worried. 

Here we were again, had just left the hospital, showing up at the ped's office straight after. 

During the night with the fever, he developed this pimply rash on his chest and back.. started on his shoulders but within 3 days it covered him and he itched like he had never itched up to this point. His skin was super red again.

All that worried me even more. 

I did not know what was causing it.. 
..was this something he caught from the hospital?

It was a different kind of miserable for him.

Where he was at least finding peace in the baby bath before, it seemed to start making him very uncomfortable. He would barely stay for 5 minutes, where he used to soak and sleep for at least 30.

The rash continued to cover him and he stopped eating again. 
He itched day and night and it was uncontrollable.

As always, up to this point, his albumin was dropping.
He was barely urinating and having bouts of diarrhea again.

We saw our ped multiple times weekly for 2 weeks until we sat down in front of him on July 23 and he told us he was trying to make us an appointment with a GI doctor from Emory Hospital in Atlanta.   

We had exhausted our local hospital and resources and our ped wanted Isaiah scoped to see his gut function. 

At almost 8 months old he would only eat 2.5oz servings of formula and at a max only ate 4oz.
The few 4oz feedings were only eaten a handful of times.

we were in agreement that more extensive testing should be done.

We knew his little body was on the verge of shutting down again and time was running out to wait for an appointment. 

He practically stopped eating altogether and we made a decision to go ahead and drive to Atlanta since it was a 4 hour drive, to stay in a hotel for the night.. 

After our pediatrician spoke to one of the GI doctors, the plan was to go in through the ER in Scottish Rite/Emory Children's Hospital that following morning. 

That night after the drive was one I will never forget. Isaiah was in such pain and had lost so much weight, he looked like a skeleton. The rash was still all over his body after all those weeks and the itch was consuming him. He cried and moaned in misery but again, no tears - too dehydrated.

This was a picture we took of him at the hotel that night.

We barely had 30 minutes of sleep that and we were at the ER at 7am.

I rarely get sick but that night I had a low grade fever and an awful cold on top of it all. I could barely get a sentence out without blowing my nose.
When we went in, many people were trying to ask us what was going on with him, his skin, why we were there 4 hours away from home, coming in thru the ER, etc. etc..

Had to hash out 5 months of pain and suffering, as I blew my way through kleenex boxes..

When was the nightmare going to end....?

They drew blood and immediately admitted him into Ped ICU..

He was much worse than we knew.

Before we ever left our town, we had our peditrician put in Isaiah's file that ALL steriods were an ALLERGY.

Thank God he did that.. 
as crazy as it sounded to everyone we were in contact with at Emory.

The many doctors in Atlanta that we saw in the ER and the GI doctors that came in, smirked and looked puzzled when reading that and we had to explain and explain over and over again.

No one seemed to believe us, but many commented among each other that our ped in Savannah was in agreement with what we were saying and they looked puzzled about that as well.

In the ER, they still put a little red allergy band on his wrist that said 'steroids'. 

Isaiah was in renal failure and his body was shutting down like never before up to that point.

The PICU Doctor said,
"I know his skin looks awful and he is uncomfortable with that, but I am solely focusing on his internal organs at this point, as he is in worse shape on the inside.."

She was so thorough and listened to everything we said.. 
she was curious about his skin and what we had to say about TSW/RSS..

They stuck him every 4 hours for almost 32 hours and then decided to do a picc line - which he had to go into surgery for but ended up so much better for him. 

They drew all blood from it and gave all meds through it 
-- pain free.. 

I was so glad for that..

 .. once he started receiving the vitamin bags, lipids and iv antibiotic he semi-stabilized, the PICU doctor wanted to look through my phone at all the pictures we had taken up to that point. 
I even pulled up Joey's blog and she saw pictures of other kids that looked like Isaiah.


We had to tell multiple doctors, over and over again during that 10 day stay that we were NOT, under ANY circumstances using steroids of ANY kind.

None of the doctors or nurses had ever heard of Topical Steroid Withdrawal or Red Skin Syndrome although they said they had treated kids there in that hospital with skin that looked worse than our sons..

Treatment for those other children? 
IV steroids and topical steroids..

Wonder how many of those kids are still out there with "full bodied severe eczema" and are slathering on the steroid creams..?

We saw a dermatologist as well as an allergist the first day in PICU.

The derm didnt say much but discussed how he thought our son might have a disease called 'Netherton's syndrome' and he wanted to take a skin biopsy as well as a hair sample because people with that syndrome have 'bamboo hair'..

We knew he did not have that and everything and every disease that was mentioned, we rebuked it and placed the name of it in my Bible under the scripture that says,
"No weapon formed against you shall prosper and every tongue that rises against you in judgement, you shall condemn."

We agreed to the biopsy on his tummy and for his first haircut to be given by the derm. 

The allergist then walked through the door - super nice guy - but he did everything he possibly could to convince us to use steroids. He looked at our son and told us that he WOULD NEVER improve without steroids. I looked at him in his face and said, 

"That is NOT the God I serve.."

He thought I was crazy.. :)

It turned into an hour+ long conversation of my husband and I saying, "No, No, No, No, No we will not use steroids of any kind.. NO!"

After we adamantly refused no matter what he said, he then asked if we would use immunosuppressants. 

"No! We will not use those either.."

He then said, "You both have tied my hands.."

"Good thing!" I said, 
and my husband agreed..

Too bad we could not tie his lips and tongue as well.. :)

We did agree to antibiotic ointment and said we would try wetwraps for the first time ever.

The PICU doctor took swabs of the ooze on his limbs and they came back positive for staph.

The itchy bumps that he had for the month of July started to clear and he seemed to do well with the antibiotic and antibiotic ointment. Tried the wetwraps for a night and his temp dropped way too low. We decided to use dry gauze wraps with tape instead with bactroban mixed with vaseline and that worked well. 

The severe itching ceased for the most part. 
Praise God!

His kidney function regulated as well as his sodium and potassium. Praise the Lord!

His skin started to clear to the allergist's surprise and he finally quit bugging us about the steroids after a few days. I think people finally realized how serious we were about not using them, everyone seemed to back off as his health was improving so much.

He received albumin and lasix and more lipids and vitamins.

He looked so lively and seemed to be doing so much better.. 

They sent us to a regular room and we stayed for 6 more days.. continuing the lipids and vitamins which is what his little body needed so badly.

We were so glad things seemed to really be turning around for the better! He laughed and smiled over and over again for the first time in MONTHS! 

We were ready to go home as Isaiah had been off the IV bags for 3 days. We talked to the pediatrician and he agreed that we could head home. We only had to meet with the GI doctors and hope they would agree.

they were not as willing..

They wanted to see Isaiah gain more weight before we left so they were refusing to let us leave. 

That was not what we wanted to hear.

We told them we were the ones who drove all the way to Atlanta for Isaiah and we would not want to leave if we did not feel he was in a comfortable place to leave.. 
We had been down this road many times.. 
We had a release on the inside to head home and everyone else except the GI docs were in agreement, but again, it was only for the weight gain, and we knew we could work on that from home.

We were away from our daughter for the first time ever and had actually missed her birthday. 
We have never done that and my heart was broken because of it.
I was so ready to get home to see her and was so relieved that Isaiah was doing so well. We had all had our fair share of hospital stays.. 
We were feeling led to go home and promised them that we would follow up with our ped the very next day. 
We were going on our 11th day and on top of it all, knew our stay was getting expensive.

The GI doctors were still refusing..

I was discouraged and tired and the tears started to fall..
I was watching Kenneth Copeland's grandson on TBN talk about patience.. of all things, that had to be the topic that day.. :)

I told the Lord I would do whatever He wanted us to do. If they came back in and still refused, I knew it was His will for us to stay and I would submit to that gladly.

I was standing at the crib as Isaiah and my husband were both sleeping and the room door opened after a light tap.
I thought it was the GI doctors again..

There was a woman who walked over to the crib and said,
"Prophet Isaiah.."

I looked up at her, tears still in my eyes and I thought to myself, "What did she just say..?"

She continued..
"What's your declaration, Man of God? ..
By His stripes, you are healed..?"

My heart jumped.. I did hear her right..

Thank You, Lord for sending this angel in our room right when I needed her!

She was our cleaning lady for the day shift and had read his name on the door as she walked in..

I could not even speak.. I just pointed to the scriptures I had posted on the head and foot of his bed.. 

She smiled and looked a bit surprised at them.. 

She started quoting more scripture and I wiped tears and began finishing her sentences..

I then told her briefly the season we had been in and how we were 4 hours away from home, hoping this was the last of the hospital stays. She said she was not even supposed to be on our floor that day, but last minute, filled in for someone else. I told her she could stay all day! She agreed that she wished she could.. :)

As we chatted, I told her how I had prayed for the healing ministry for our children and how here we were, 3 hospital stays later..

She said, "Oh, you will have that healing ministry.. 
you, your husband and your children.. 
how else would you be able to relate to those sick and suffering, unless you had been here, right where you are.."

She was so right..

..more tears fell..

We had the best conversation for the next 30 mins about the Lord and His goodness, as she, in her helps ministry, served us by cleaning up our floor, our son's bandages, our trash and refilled all of our supplies..

She not only refilled those plastic gloves and paper towels, she was helping refill my soul.. 


They tested Isaiah extensively while we were there:
blood tests, stool and urine tests, many multiple different gut tests to see if there was inflammation/leaky gut/etc and to see if he was losing albumin through stool/urine.. immunology and lymph tests and every other test they could think of for all these rare, crazy diseases were also completed. 


 Because of the gut tests being normal, they decided not to scope.

We were thrilled! 
Rejoicing.. Praising the Lord!

We knew then, after every other possible disease and syndrome was ruled out that Isaiah was definitely in TSW and we were well on our way to healing as we would soon be stepping into our 3rd month steroid free!
They finally agreed for release and we were on our way home..

As we were on our way out of the hospital, we stopped at the gift shop and purchased this canvas for Isaiah.

I love it..


After we got home, Isaiah's health has continued to get so much better!

He has laughed and smiled everyday..
We are not where we want to be, but PRAISE GOD we are not where we were!

The crazy body temp stuff has finally stopped and we can hold him close again and cover him with blankets!
That is worth more than gold! 

Most of the seeping has stopped and his flares have been few and far between. The only places that are inflamed now are the places that topical steroid was actually applied.

He is getting better every single day!

We are still sleeping in the recliner and wrapping his limbs in gauze but I know and believe that will be short-lived.

We went to the ped last Friday and received our first 

His albumin had climbed, ON ITS OWN! since we were there last week and he has gained 3 lbs in 3 weeks!

He is now almost 15 lbs! Our ped is so happy and so are we!

He is eating more than he ever has, and we are starting him on an organic goat's milk formula this week.. 
continuing to press into healing with our precious son.

Life is getting back on track and I know soon, things will be back to normal in our lives..

We have missed life in general,
our family, our church family and our friends..

We give God glory for all of the blessings he has given us..

 He has us in the palm of His hands and we are defeating the enemy by the Blood of the Lamb and the word of our testimony!

Please contact me if you have any questions about Red Skin Syndrome or know someone who has severe, worsening eczema and have been using topical steroids with no improvement..

God bless you and thanks for taking the time to read our story.. we hope it reaches those who need it, as we were sinking at one time in that sea of hopelessness and the unknown..

There is HEALING and HOPE.. 
press on and NEVER GIVE UP!


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