Hospital Update

Evan is starting to get better by the day.  We were moved into a regular room on Saturday afternoon.  Things here a much calmer and it seems we are both getting more rest.  They have slowly been weening him off his oxygen, and he was down to 1 1/2 liters, but during the night last night he decided to pull the oxygen off his face.  His nurse decided to just watch him for a while and see how he did.  I am happy to report that almost 18 hours later he is oxygen free. It is amazing to think that just 4 short days ago he was intensive care on 4 liters of oxygen.

 As usual he is living up to his name sake "young fighter"

One of the first things that happened upon admission to the ICU was testing to find out what kind of virus/infection he had going on.  Last night we were told he has Rhinovirus, which is basically the common cold.  The doctors are very suspicious that due to severe reflux he is aspirating fluid into his lungs which made his lungs unable to fight off such a minor virus.  I got in touch with our GI doctor who has been managing Evans reflux,and other GI issues for several months now and who I have great respect for and he feels we should proceed with the surgery. I think we have come to terms that it is the right thing for him.

I am dreading another surgery but know that it is in his best interest.  There has been some debate between different doctors about whether to get the surgery done while we are here, or send us home and let him completely recover from this illness.  Each doctor has their own opinion and theory and sometimes it becomes overwhelming.Truth be told, I want to get it done now.  We are here, we are settled in a room and I don't want to have to worry about it for the next few weeks.  Like many moms do I have started going down the path of "what ifs."  What if he gets another cold, will we end up back in the emergency room again.  What if we can't get on the surgeons schedule for weeks or months, and we have to wait and worry that much longer.  What if....

He is scheduled for a swallow study tomorrow and then we are going to talk with the surgeon again and make some decisions about what needs to be done and when.  Keeping my fingers crossed for soon. 

Got a wagon ride from the PICU to the floor.  Much better than an amulance ride and he looks so much cuter too!

Intensive Care Unit

On Thursday I took Evan to the doctor for a cold.  I assumed it would be the run of the mill visit which would go someting like this: "Give him Tylenol for the fever, keep him hydrated and use a humidifier..."
I was shocked when instead the words I heard were: ambulance, low oxygen level, emergency room..."
Not what I was expecting.  So we were taken by ambulance into the Childrens Hospital Emergency Room.  After several hours of observation it was determined that he needed to be admitted, except that the hospital was full and there were no beds for him.  It breaks my heart to know that a childrens hospital is full.  That should never have to happen at a place like this.  So we spent the night in an observation room.  Early this morning I heard rumblings in the hallway outside our room discussing the ICU.  They couldn't be talking about Evan, could they?  The doctor finally came in and said they felt that the level of care that Evan needed would be best suited in the Intensive Care Unit. 

We have been in the hospital our share of times, but never in Intensive Care.  It's a whole new experience.  I felt like we were hospital pro's, but now we have entered something new.  More rules, more doctors, more tests, more wires, more intense...

All the rooms here have huge sliding glass front doors so that it is easy for the nurses to see the kids.  Our room happens to be right up front where everyone comes and goes.  I have spent the day watching families come together.  To hug, to pray, to cry.  One of the hardest rules is that  no food is allowed in the room, which proves difficult when I am alone with Evan.  As I was eating dinner in the family waiting room I overhead two girls apologize to each other and regret the last two years that they had been at odds.   This place changes people.  Brings them together, or perhaps breaks them apart.

Evan is starting to improve and we may be able to move to a regular room today.  Back to the confines of a room with privacy and calm.  I know that this will not be our last hospital stay, but I will come into future visits with a different perspective. 

What I can only hope is his first and only ride in an ambulance.

After several days of doing nothing but sleeping, he is starting to feel better!

Waiting and Wondering

Many of my fellow Spina Bifida moms have been posting about the amazing things their kids are doing. Some of their kiddos have started crawling, some are pulling up, some are even walking.  I am so proud of each of these kids and so incredibly happy for each of these moms.

I must admit though, it leaves me wondering.  Wondering when/if Evan will ever get to that point. Wondering, if I am doing enough to encourage these behaviors. I don't by any means want to push him.  He has enough to deal with.  Where do I draw the line between encouragement and pushing? 

Evan sits by himself which in itself is a huge accomplishment.  He has no interest at all in crawling.  When we lay him on his stomach he immediately rolls onto his back.  How do you explain to a one year old, that they can get from here to there if they lay on their tummy and scoot.  He isn't a very curious baby.  He doesn't put things in this mouth the way other babies do.  He is just content.  Content to just sit and take things in. Content to just observe. I suppose a lot of mothers would be grateful for this attribute.  I am too, for the most part.  I couldn't be any more grateful for his sweet, calm personality. Part of me though wishes he had the drive to get into stuff.  Curious to know what was around the corner.   I know that the time will come.  The time when it is our turn to announce Evan's next big accomplishment.  I just wonder, when...

More Questions than Answers...

Yesterday Evan underwent an Upper GI study with a small bowel follow through.  This test was done to rule out any hernias or obstructions he may have, which may be contributing to his weight loss and reflux issues.  We received the results today and they were...normal.  When we have medical tests done, aren't we always hoping for normal results?  Typically I would say this is the case, but in this instance it left me and the doctors with more questions than answers.  It leaves me wondering what is causing this invisible reflux?  How can this severe problem be going on yet we don't see any of it's symptoms or know it's cause?  If the test had shown a haital hernia, which is what the doctors were fairly suspicious of, Evan would have had surgery and the reflux would be resolved.  If the test had shown a blockage or impaction, he would have had surgery, and the problem would be gone.  Don't get me wrong, the last thing I want is for Evan to have to undergo one more surgery, but at least it would have brought resolution for him.

He has been getting high calorie formula through his NG (naso-gastric) tube for over a month now.  He has gained some much needed weight and I am thrilled about that.  But where does this leave us?  The medications alone don't seem to be curing the reflux, so what other options do we have?  How long will we have to continue these feeds?  What is the next step? So, today normal means we are back to the drawing board for answers.  I know that there is a good chance we will never get an answer as to what is causing his reflux and his weight loss, but I feel that before I can accept that, I have to explore every possibility. 

Two Steps Forward, One Step Back

We are continuing to struggle with Evan's GI issues.  We met with his doctor last week and he had gained a pound over the last month which was fantastic news.  Previously it was taking multiple months for him to gain a pound a keep it on.  I felt like now that we know his severe asymptomatic reflux was causing the majority of his problems and he was beginning to put on some weight, we were heading towards some resolution.  While meeting with his doctor though  the doctor also wanted to have Evan get an abdominal x-ray to confirm that he wasn't dealing with severe constipation again since his belly was very distended.  We finally were able to get the x-ray on Wednesday and today we got the call that we are right back to where we started before our previous hospitalization.  He is constipated, very constipated.  The frustrating part about this is that he has constant diarrhea.  Sorry for so much poop talk, I know my fellow SB moms will understand.  Anyway, often times when there is constipation, loose stool will move around the blockage and cause diarrhea.  Who would've thought?  So we are changing diapers and often outfits more than I care to even try to count.

We are going to attempt a "clean out" again.  Hopefully we will be able to accomplish this at home this time.  Now that he has the NG tube in place, there isn't such a concern about dehydration which gives us a lot more flexibility with what we are able to accomplish at home.  This is not a fun process, but I am hoping it works.  If we can get him cleaned out then we will head back to the drawing board with our doctors to create a bowel program to keep him regular.  Our regular doctor was out of town today when we got the results of the x-ray, but the doctor who called to go over the results with me, brought up the possibility of daily enemas.  It saddens me to think how much my poor baby has already gone through and what still lies ahead.  Yet, despite this all he is always so content and happy.  So many people in this world would benefit if we just knew his little secret to choosing not to let Spina Bifida get the best of him.

We go on Monday for an Upper GI study with a small bowel follow through.  The doctors are looking for anything structurally which is contributing to his GI problems.  Almost all people with Spina Bifida have bowel issues, ours just seems to be the complete focus of my time right now.  I spend hours a day talking to different people about his poop.  I am thankful that we have great doctors and nurses who always return my phone calls and emails.  We are blessed to live in Denver and have an incredible Children's Hospital less than 10 miles from where we live. 

Praying for some answers with this testing coming up on Monday and that this "clean out" works and doesn't earn us another hospital visit. 

15 months and an homage to fellow SB moms

October 9, 2009.  This happened just yesterday, didn't it.  Today Evan is 15 months old.  It has absolutely flown by.  I could not possibly have imagined the road that we have been led on over the past 15 months.  When we found out about Evan's Spina Bidida we were devastated.  We felt scared and alone.  The doctors gave us a grim outlook and a lot of "we just don't know".  What I do  know today is that Evan is an amazing little boy and Spina Bifida has brought much happiness into our life.  Early on in the pregnancy, I met a few parents whose kids had Spina Bifida as well an adult who had lived his life with Spina Bifida.  He had a great outlook on life and made me constantly feel good about what was coming.  15 months later, I am in contact with families across the country, well really around the world, whose lives are also affected by Spina Bifida.  This has been such an amazing gift.  I have learned so much from these other moms and families.  As much respect as I have for our doctors, they don't live Spina Bifida everyday like we do.  They can provide us with their professional opinion and knowledge, but it's the other moms who know, who truly understand what you are going through.  They understand the struggles, the constant doctors appointments, the fears, the frustrations, the happiness, the joy.  When one of our kids takes its first steps it's a celebration for all of us.  When one of our kids has to go to the hospital for another shunt revision it tears at each of our heart strings.  I have never met most of these women, but they are my friends and many days my strength.  When  I am struggling or I am having one of those days where Spina Bifida has gotten the best of me, I simply put a post on Facebook and in a matter of time there are my fellow moms, sending prayers, wishes, good thoughts  and support to us and it brings me the resolve I need.  I am forever grateful to have this amazing support system. 

Taking a Stand!

I am a proud mama tonight.  As soon as we put Evan in the stander he took to it right away and started pushing the wheels.  Although he has had some practice in his wheelchair, he has never pushed his chair like this.  I think he is going to love this mobility thing!!

A New Year!

2011!  A new year!  We spent the new year in Kansas with my in-laws and had a great time.  We all really needed the time away.  Once we got home I opened our new calendar and started transferring birthdays, anniversaries, etc.  It struck me how bare our 2011 calendar looks compared to 2010.  SOOO many entries.  Doctors appointments, tests, xrays, therapies, surgeries, and a few fun things like dinners and parties with friends. It's amazing to visually see how much we really did during last year.   Then I look to this years calendar.  BLANK.  The possibilities are endless.  Maybe this year our calendar will be filled with first.  First time Evan crawled, stood, took a step, first loose tooth for Lauren. 

Our 1st first will happen tomorrow.  After much struggling, fighting and crying we are getting a stander for Evan.  We were fortunate enough to be able to borrow one for a while since our insurance would not cover it and we are still years away from getting Medicaid.

Tomorrow, Evan will stand.  Standing is the first step in actually taking steps!!

I am trying hard not to have any expectations or time frames in my head.  I am just grateful to be able to have access to a stander and we will see where it all goes from there.

Hope you all had a Happy New Year and wishing you a 2011 full of possibilities.