Save Jace

For those of you that don’t know and those of you that have been there for us for the last two weeks a HUGE thank you from the bottom of my soul!

Two weeks ago Jace got really sick and began throwing up.  We went through Drs appts and calls like crazy trying to find out what was wrong with our baby!!  11 days for a baby throwing up randomly and we couldnt pinpoint the problem.

After 6 days of getting sick and at home meds and strict diet not working we took him to the Dr.  At first they thought it was drainage from his nose…two days later and still getting sick they put him on some medicine for naseau…two more days and they put him on meds for acid reflux and also an infection…still sick.  We switched pediatricians after not getting any results, help or hope and took him in to another Dr.  After examining him he gave us the option of admitting him into the hospital for some tests or setting up appts that could take a couple of weeks.  We chose to admit him and have all the tests and Drs come to us. 

Monday night they did X-Rays on his chest and they came back negative.. They took him off all solids and gave him a liquid diet…still throwing up.  Tuesday night they did an upper GI to scope the reflux and check his esophagus and that came back negative…still throwing up. They took him off liquids and were only giving him the IV.   Wednesday they did an intestinal sonogram and checked all his organs to see if maybe something was wrong there…nothing.  They determined that he had a viral infection and were going to put him back on a regular diet Thursday morning and send us home.

Since he hadn’t been eating anything there was nothing to go through his system and they gave him a suposotory to help him move stuff through his little body.  An hour after that he started having random rashes appear and disappear across him.  THey thought it was a reaction to the supposotory and wanted to just watch it.  After the third time the rash appeared, he looked like he was going to get sick again so Josh and I sat him up.  His little body went limp and so we laid him down.  The rash flooded his body, his tongue was out and his eyes were huge…he was having a seizure. His arms flailed and his body was tense…all of a sudden we were warped into fast paced.  Doctors filled the room and monitors were hooked up.  There was a nurse taking blood from his fingertips and another hooking up the blood pressure to his tiny ankle, a third was attaching heart rate monitors to his chest and Drs were asking all the questions all over again.  My mind was there and I was answering questions as quickly as they were asking them…what seemed like hours was actually only minutes and they had an Intensive Care Doctor in our room. 

His body was lifeless as they checked his eyes…they were shining the flashlight and he was just staring.  I was calling his name and he was not responding.  They were pumping his legs and they were limp as noodles.  The Intensive Care Doctor began CPR and as quickly as he was gone he was back.  Bright eyed and wondering what everyone was doing there.  That only lasted a minute.  He was gone again. 

They hooked the monitors to mobile units and the IC Doctor sent immediate orders for a CT (cat??) scan. They sent us ahead of Jace and began strapping him down.  We watched as he laid locked down in the scanner.  It made him look so tiny and we all felt completely helpless.  I can’t tell you how long we waited for the results but it felt like a month.  I know that immediate family and friends were there in a matter of an hour.  The Dr finally called us back and gave us the results.

It was a brain tumor.  It was the size of the baseball and probably had been growing since he was born.  It looked aggressive and they would perform brain surgery to remove the tumor in less than 24 hours.  He was sent to PICU were he laid lethargic and groggy.  The idea was to dehydrate his body to reduce the swelling around the tumor. 

With the friends and family we had there with us, we had already with less than an hour of knowledge the support of everyone that loved us and Jace as much as possible.  Prayer chains were started all over the city and within hours had reached other states and even countries.  Wednesday night around 12:30 we began the waiting.

Tuesday morning we were supposed to meet with the Dr at 8 am.  When Josh and I got there at 7 we stayed with Jace and just stared at him wondering all the questions that you do wonder when something like this infests your family.  We met with many nurses.  The pediatricians from the beginning of the week all came down and talked to us…though they seemed apologetic, there was nothing better they could have done and were only trying to find the problem.  No one, not them nor us would have thought this in a million years!!!  Anyone who knows Jace agrees.

We finally got word that we would get to meet our Dr around 1PM.  Soon after that they told us that it woudl be closer to 3:30.  Around 1:30 sometime the nurse unexpectedly came and got Josh and I and took us back to meet the Dr. He told us everything he could about the risks, worsts, and problems that this could be.  He told us that this could be over multiple surgeries depending on how he reacted to the meds, the way his brain reacted to the surgery and the pressure from the tumor.  From the results of the CT scan it was leaning more on the malignant side and was causing deep pressure into his tiny growing brain.  The good news: it was on the outer frontal lobe and could be removed without having to go inside his brain too far.  The good news.

They told us he would go for an MRI around 3:30 and go directly from there to surgery which could possible take 4-5 hours.  They would let us know what they could when they could.  With the same support team of immediate family and friends considered family we all held strong.  Mulitple prayers over Jace, over us, and over the Doctors and nurses that performed the surgery…in small groups, large groups and circle prayers we were able to stay strong and focused.  At 1:10 they came out and said they were ready for Jace.  They took him in for the MRI and he was in surgery by 2:15.  When they called us around 4:30 and told us that he was already out of surgery - panic set in…that was only two hours…it was supposed to be 4-5…something went wrong…they are going to have to go back in….Josh and I went back into the PICU were we could only hold each other and wait while they stabilized Jace. 

The DR came to talk us and told us that the surgery went VERY well.  Jace was a strong baby and had done great.  He had removed the entire tumor and they were sending it to Boston to be examined and dissected at the Hopkins center (I don’t know the entire correct name).   The only concern was that the tumor had surrounded a major artery that controlled Jaces legs.  It had sucked blood out of the artery and the Dr said there was no other choice but to remove it.  He told us that it would take 7-10 days before we knew any news…good or bad…whether the tumor was cancerous or not.  He wanted to check his vitals and make sure he was ok before we went in.  Josh and I waited another few minutes only to have the Dr come out and say…”Ya..the whole leg thing, he’s already kicking and wanting out of his bed so no damage there…” (You have to know the Dr).

When Josh and I walked into the room and the second he heard our voices Jace began yelling….”all done, all done, all done…”  as his legs and arms flailed about….Apparently because he had the tumor since he was born, his brain learned to get blood elsewhere and there was no loss from removing that large artery…in fact…the ONLY difference in our little ANGEL was the bandage on his head.  They even told us that they didnt shave his head, just separated his hair and made a clean cut…

He took one look and me and said “Momma.” He took one look at Josh and said “Dada.”  He made it!!!

The power of prayer is an amazing, AMAZING entity of its own.

I want to thank each and every single individual that was there with us throughout the last two days, two weeks…I want to thank each and every person that took any time to pray for us and the many that kept us in their prayers throughout this.

He is in ICU tonight resting FINALLY and Josh and I will return to the hospital tomorrow morning where they will perform another MRI on his brain and his spine to check for results.  We’re only hopeful that everything was removed and he will recover from the surgery quickly. 

The only thing we are waiting on is the results from the tumor.  Please keep Jace in your thoughts and prayers.  He is an AMAZINGLY strong baby!  We are SO thankful and open hearted for everything everyone has done for us.

I will update as soon as I hear anything, as soon as I get another free minute to get back online.

Again thank you all from the bottom of my heart and soul!!!  We are faithful, hopeful and now even more so since our baby proved his strength to us.

God Bless!!

Jamie

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