Tuesday, November 19, 2013

A re-cap

Keean's journey has taught me more than I ever possibly imagined.  I never in my life would think that someone so little and helpless would teach me so much, change me so much and connect me to so many people.  I have learned to appreciate life.  I have learned to not take the little things for granted.  I have come to realize how precious this life is and believe in the power of prayer.  I have experienced more anxiety than I ever want to experience again, have cried harder than I ever have cried and been happier than I have ever been.  The unknown is tough.  We still don't know what lies ahead for our little man.....but we really don't know what lies ahead for any of us.  I am content with where he is now.  It's funny how simple little things make me extremely excited now with my 7 month old.  Just the simple fact that he will eat makes me smile.  I took a picture of the first jar of baby food Keean finished.
 I still get excited when he tells me things like, "I'm hungry" or "Eat now, mommy"  We still have ups and downs with this.  There are days he doesn't want to eat anything and days I don't have enough food in the house for him.  I'm ok with this.  He is here.  I get this immediate sense of gratitude and joy when I see him playing with other kids his age and how much he loves other people.  He has a love for life not everyone has.  He is 2, but I think he gets it.  He has blessed this earth so much in his short years.  He has connected me with people that have changed my life, some I have never met (but hope to some day) and some who helped me get through the tough stuff.  He has taught me not to waste time on things that don't make me happy.  He has taught me about relationships and what really matters.  I have been taught these things before through other life experiences, but I have a new out look on the world since he has been here. 
I love my children so much it hurts.  Sometimes it scares me what this life might bring, but it also brings me joy to know that I have been blessed enough to get to be a mommy.  I thank God every day for what I have. 
When I was in the darkest place of my existence, I still knew I needed to be thankful.  I never lost sight of the importance and power of prayer and my relationship with God.  It got me through some tough stuff.  It made me stronger in my faith.  Yes, there were times I was angry and I would cry and beg and plead that I get to keep my baby with me......but I was always thankful.  I still question things with my faith.  I still wonder why such bad things can happen to such wonderful people, but it does not make me doubt.  I will just have a LOT of questions when my time comes. 
If you have never had a sick baby, count your blessings.  I have had a new light shed on me how painful it is to watch someone you love with everything you have in you hurt so much. I would have given anything to switch places with Keean.  Watching him get poked and pricked with needles, tubes coming out of his nose, stomach and neck, continues tummy pain, puking and so much watery stool his poor bottom got extremely sore, getting wheeled away to the operating room, watching him get put under while I held him......it was a lot to take in.  I know there are so many people out there that have gone through so much worse and have seen so much worse with those they love, but this was the toughest thing for ME.  This was the hardest thing I have EVER been through so I don't like to compare myself to what others have dealt with.  Everyone has their own battles and just because it could be worse doesn't mean it wasn't tough.  I have this place in my heart that means so much more to me now than it ever has for parents who have sick babies and parents who have lost their babies (regardless how old their babies are).  I wish I could do something to take away their pain, to help them or to make them feel less helpless.....but I know this is not possible.  All I can do is pray for them and to hope that some day this journey we are all on makes a little bit more sense.

We have been so grateful and so very thankful to every single one of the people in our lives that have prayed for us, send anonymous gifts, who put on and/or attended our benefit, who came to visit us in the hospital and at home, who continue to support us and ask how Keean is doing.  Sometimes it's easy to forget when you get caught up in the world happenings that there really are LOTS of really good people left in the world.  People who genuinely care about us.  People who stood by us during our toughest times and forgave us if we weren't the perfect friends or family for awhile.  We were absorbed in Keean and are so very thankful for the one's out there that understood that and loved us through every.single.step of our journey.  We couldn't have done it alone.
Our latest family picture :) 2013

A new approach

The GI doctor from Mayo called me to discuss some things and to see what our plan of action was.  He said that Keean had been tested for everything he would suggest and had another doctor looking at his case too. He decided to try putting Keean on a steroid.  We tried this for a few weeks, but Keean was starting to not tolerate it well.  Luckily, we saw our GI doctor that we had since being discharged from Children's and she had a different approach.  She said instead of the steroid we were giving Keean, we could try a different one.  2 months after we started him on it, he gained 2 pounds.  This made our GI doctor believe that Keean, in fact, does have Auto Immune Enteropathy because of his response to the steroid. 

Keean continues to take this steroid daily.  He is also on another medication that increases his appetite and calms his gut a little from being inflamed.  We have had a lot of ups/downs with his weight gain and his health in the past year and Keean remains undiagnosed besides him presenting symptoms of AIE.  We have spoken with a doctor out in Massachusetts who will be happy to see us if Keean's symptoms act up again and we are desperate for answers.  Keean still has his feeding tube as of today, 11/19/13 and we use it mostly for his medication administration.  He is 2.5 years old and almost weighs 25 pounds.  He works hard at gaining his weight.  He continues to have PT come in and work with him on physical strength and will start OT again next month to work on his strength in his hands. 

He is a complete goof ball.  He likes to make people laugh and entertain.  If he sees someone is laughing at him it only gets him going more.  He has started to get into the terrible 2's a little by pushing his limits and beating up his baby brother (who is now 7 months old).

Our plan as of right now is to keep an eye on Keean and his weight.  In the Spring we are going to do another biopsy to see how things look.  Because his steroid can cause dependency, we are going to start to try weaning him off of it after the biopsy.  We will then do another one next fall to see if things look good without him taking the steroid.  Of course it makes me nervous messing with things and having him put under 2 different times, but it will also be interesting to see how things change (or if they do) once we change his medication.

Keean did have his blood levels drawn again after having to have his immunizations re-done and his levels look significantly better......this means he is starting to respond to his shots and the doctors are thinking that his immune deficiency stuff is actually due to his malnutrition and his GI tract not functioning properly versus and immune deficiency causing his GI tract stuff.

We have been on quite the ride with this little man.  Thankfully, we are going up hill WAY more frequently than down. I feel content with where we are right now.  He is a very typical 2 year old who pushes his limits,  says the funniest stuff, is curious about EVERYTHING around him and loves to snuggle.  He is addicted to his nuk and still takes a bottle.  He won't take his formula from a cup and his formula is a HUGE calorie boost for him.  (The formula he takes is actually called Elecare Jr. and is made for kids his age).  He goes into the bathroom when he has to go, but refuses to sit on the toilet and he LOVES crackers.  There are still things we don't give him and planning a meal for him is tough, but I don't really care.  He is with us......and there were numerous times I wasn't sure we be able to say that!
I thought I would share a few of his 2 year pictures.  He LOVED posing! :) The first one is how he shows people that he's "2".

Another hospital stay

We received a phone call a few days after we left Rochester from the geneticist.  She said that some of Keean's blood work came back and she wanted us to come back to review the results.  I immediately got a pit in my stomach because they had initially told us that the only reason we would have to come back is if something in the results came back telling us something.  SO, we made an appointment for the next day (it is a 4 hour drive for us to get to Mayo) and headed back down there.  Keean was sick when we did this and threw up in the hotel the night before we went to see the Dr. In less than a week from when we had been there the first time, Keean had lost 1.5 pounds.  The geneticist told us that the blood work that came back could either point to a metabolic disorder OR it could just mean that he was dehydrated and malnourished.  Well, considering Keean was puking and losing weight when we had blood drawn, my guess was the latter of the 2. So they had to repeat the labs.  We were also sent to the pediatrician again when we were down there to review what everyone had done while we were there.  When she saw that Keean had lost so much weight, she insisted that we be admitted to the hospital down there. 

I immediately started crying.  We were now 4 hours away from home and were being admitted to another hospital.  I, at this point, was 5 months pregnant with Keean's baby brother and we had things going on with that pregnancy too.  I was beyond stressed out.  When I had my 20 week ultrasound with Keean's baby brother, he had a marker for Downs Syndrome.  Approximately 4 days prior to being admitted to Mayo with Keean the doctors at Fairview Medical Center sent off blood work to test my baby for Downs and those results were not in.  Although I was completely 100% aware that this was not the end of the world, I was scared.  I remember laying in the hospital room crying uncontrollably.  I had this sick baby who couldn't eat, couldn't gain weight and kept needing to stay in the hospital and I had no idea how I was going to take care of another baby who could possibly have medical issues too.  I felt selfish for wanting another baby, I felt selfish for not even thinking that this could happen to me and for not thinking that we should figure out Keean's stuff before we tried to have another one.  I felt bad for feeling bad because we were BLESSED to even have the opportunity to be parents again.  I was a mess.  I would like to blame the hormones, but I'm pretty sure the feelings I was having were real.  I felt like I didn't want to be pregnant anymore, that I was in over my head.  That there was no way I could be a good mom to Keean and my 14 year old as well as a baby who would also need me.  I didn't know what to do with myself and I was horrified!  I remember seeing the geneticist at Mayo and she was appalled that we would even consider getting pregnant again not knowing if what Keean had was a genetic disorder.  My justification was this:  We had no idea we would ever figure out what was going on with Keean.  They had ruled out just about anything and everything and we weren't getting any younger.  I wanted another baby and if God thought we could handle 2 special needs babies, well then GREAT!  BUT, when reality set in and it was an actual possibility that we have 2 babies that would be high medical needs it scared the crap out of me.  Thankfully, the blood test for Keean's baby brother came back normal.  But that I wouldn't know until AFTER we got out of the hospital in Rochester.

The hospital stay down at Mayo was not my favorite, but there are definitely worse things in the world.  Keean was started back up on continuous feeds and they said we could go home if he could go 24 hours without puking.  Right before we were discharged, they let Keean and I go down to the cafeteria to eat lunch.  After setting off all the alarms in the building and causing a hospital shut down (due to forgetting to remove his alarm bracelet when we left the peds unit) we went to eat.  As we were finishing up our lunch, Keean threw up all over the table at the cafeteria.  Naughty mommy took Keean back up to our hospital room to change him and didn't say a word.  I knew if they knew he had thrown up we would have to stay.  And I knew what to do from home.  I also knew that if we needed to we could be admitted to the hospital closer to home.  Thankfully, Keean ended up fine after lunch and Mayo has since been our last hospital stay (knock on wood).

 The blood tests from the geneticist ended up all being normal so the metabolic disorders were ruled out.  Little by little we were ruling out anything and everything. 
This was Keean before getting admitted to Rochester Mayo

Monday, November 18, 2013

A summary of the next few months

On November 15, approximately 2 months after Keean was discharged from Children's, I called the lab once again to get the lab results to the AIE (AutoImmune Enteropathy).  I figured I would call and get the typical...."NOT YET" response that I was so used to, but to my surprise, the results were in and they were negative!!!!!!!!!  This was great news....but when I spoke with our GI doc she said this test can have a false negative. AWESOME!  I spoke with other parents of children with AIE and some of them told me the same thing.  Their kids had all the symptoms of AIE, but tested negative....so being they were presenting as if they had it that was how they were treated.  This is exactly what our doctor decided to do too.  Treat Keean as if he had it and if he responded GREAT....if not...we try something else.
We got blood test results back  from the Immunologist and it showed us that Keean was not responding to his immunizations.  They informed us this could be because of an immune deficiency or it could be because he was so malnourished when he first got his immunizations that they didn't "take".  We would have to re-do shots again when he was 18 months and see what happens. 
The Immunologist we saw did a lot of other blood work that all came back normal and referred us to a geneticist.  The Geneticist would test Keean for any genetic abnormalities and ensure he didn't have any chromosomal disorders.  Because of his low muscle tone and big head they wanted to ensure that they weren't missing something there. Keean had blood drawn from them as well.  This blood work also came back normal and they recommended an MRI and referred us to a Neurologist to ensure we weren't missing something there. 
Keean came down with an ear infection December 19, 2011 and was given an antibiotic.  He had a horrible reaction to this and it landed us in the hospital for a few days.  He lost a bunch of weight and became extremely dehydrated.  Because of this, our GI doctor referred us to an ENT to talk about placing tubes in his ears.  She wanted to ensure that if he were to have another ear infection we had a different route to treat him instead of giving him an oral antibiotic they wanted to treat it directly to his ear drum. 
So, February 27, 2011, Keean was put under again. He had tubes placed in his ears, an MRI another endoscopy to see if there were any changes in his intestines and a bunch of blood drawn for the immunologist.  Everything went great.  His MRI came back normal and so did the other blood work for the immunologist.  This was great news, but we were still at a loss for answers.
Because Keean continued to cycle and have good months and bad months and not gain weight well, our GI doctor referred us to the Children's Hospital in Cincinnati.  Some doctors call it the "Mecca" of the GI world.  We were able to get out there July of 2012.  We originally were going to take the 14 hour road trip there, but ended up getting connected to "Angel Flight" an organization where private pilots offer to fly people for medical reasons to their appointments for free.  It was an amazing service and we got to fly in 2 private planes to Cincinnati for a few days for MORE testing. 
That trip could have it's own blog really.  It was quite the experience!  Thankfully we have awesome friends and got home in one piece and nothing new was learned from our trip out there.  I was just glad we were given the chance to get there to rule more things out and to feel confident that the team of doctors we already had weren't missing anything.  The picture on the right if a picture of one of the planes that got us to Cincinnati.
Keean had times where he would go months without gaining weight and began screaming in pain when he would stool.  He was put on a medication for this which helped for awhile thankfully.  It was really hard to watch him shake and scream and sweat every time he had to go to the bathroom.
In October of 2012, Keean had another biopsy of his intestines.  The results showed "remarkable improvement" of his villi which could possibly qualify for 2 of the best words I have ever heard anyone say.  Keean did, however, continue with his cycles of doing really well and then cycling into puking, watery stool, losing weight, and not sleeping well.......because of this, our pediatrician from home referred us to Rochester Mayo Clinic to see if they could help us with any new ideas.
We traveled down there for a few days at the end of November, 2012 and were surrounded by specialists.  We saw a neurologist, immunologist, geneticist, gastroenterologist and a pediatrician.  The geneticist was the only one who wanted to run more tests.  All of the other specialists thought the team we already had looked at everything they would have which was reassuring.  They sent us home after taking the blood for the geneticist and told us they would call us with any results.  So, we went home to do some more waiting. 

Tuesday, November 12, 2013

waiting

November 13, 2011
The 8 week mark was up and this mama was anxious....so I started my phone calls.....
I got the number to the place where his test was being done from another mom who was waiting on her daughters test as well.  I'm sure they LOVED hearing from us.  We had this idea that if we annoyed them enough maybe they would take us seriously.
Well, they must have heard about our plan and decided to take their sweet time.  This time when I called they said they were under staffed and the test hadn't even been started yet!!!!!  Are ya serious?! I was told 7-10 days which turned into 8 weeks and now you're saying they haven't started?  Well, thankfully they informed us that once the test starts the results take a week......so I guess after waiting 8 weeks what was 1 more?
In the time being....Keean was able to increase his formula intake to help increase his weight.  He did come down with a bug after he had his Mic-key placed (which by the way was the most awesome transition ever).  It was so much fun to have a baby I could pick up and carry to the other room without a huge tube coming out of his stomach and a feeding bag attached.  He was on continuous feeds, but we were allowed to shut it off at times and play with him without the nuisance of tubes hanging everywhere and a feeding tube backpack. 
The GI doctor called us to talk to us about the biopsy results.  She said the villi did not look any different from the first biopsy they did on Keean.  This was not horrible news, but it wasn't good.  We had been hoping that we just had a run of bad luck and his villi were repairing themselves, but because they hadn't changed it led the GI doc to believe something else was going on.  So, we got a referral to the immunologist at Children's.  She also requested we start PT (physical therapy) and OT (occupational therapy) because Keean struggled with low muscle tone (which he still does) , would not bare weight on his legs and would not hold up his head when he was on his tummy (and he was 5.5 months old). 
So, at 5.5 months old, Keean was 12 pounds, had low muscle tone, damaged villi, trouble gaining weight, reflux, chronic diarrhea and watery stool and a diagnosis of Failure to Thrive (which isn't really a diagnosis....it's just what they say when a baby doesn't gain weight well).  But, regardless of his struggles, Keean was happy.  He was interacting with us, smiling, grabbing things, laughing, playing as well as he could and content.  I'm not sure if I have said this before, but my husband and I used to ask how good he would have been if he wouldn't have been sick because he was sick and he was simply amazing! 

The months following Children's

Like I have mentioned before, I have had to reference my caringbridge site for the more detailed information regarding our journey with Mr. Keean.  It's funny when you are in the moment and living something it seems like things drag on.  I remember thinking clearly that there were many things I would never forget........but like everything else.....time heals, we move on and we do forget SOME of it.  Keean had a weight rollercoaster for quite some time after discharge.  He would average about 1/2 an ounce a day and then would get sick and instantly lose 5-6 ounces. We were required to drive to St. Paul to see our GI doc once a week after discharge to do weight checks and to let her see how things were going.
I remember being extremely anxious for the first appointment because I was under the assumption that we would get the test results back for his test at this appointment.  I couldn't wait to get there so we knew what we were dealing with.......but at this appointment we found out that the test they told us took 7-10 days, in fact, took 8 weeks.  HA!  Are ya kidding me???? That's a bit of a difference.  When you go to the doctor and they tell you 7 days, in reality we are all hoping that the test results come back early....so it was a huge let down when we got there and heard 8 weeks.  BUT at least we were that much closer to hearing the results.....
On October 9, 2011, our friends had a benefit for us to help us cover expenses.  Keean's medical stuff was actually covered by his insurance, however, it was a life saver considering I had to quit my $30,000 a year job, travel expenses to and from Minneapolis, my husband's expenses driving back and fourth to get to work, the work he missed while we were there, eating out and so on.  Whenever we would see our big kids we liked to take them out of the hospital to give them some "normal" and that always costs money too.  So, the benefit was a God send.  We are still so very thankful to the friends/family who organized the entire thing, made flyers, got donations, made things, etc.  And so very thankful to the people who came. 
Things were pretty quiet....just dealing with the stress of Keean not consistently gaining weight.  On November 2, 2011, Keean's 5 month birthday, we got to bring him back down to Children's so they could put him under for another biopsy of his intestines and replace his PEG tube with a more permanent option called the Mic-Key.  This would allow us to take Keean off his feeds and not have a tube hanging out of his stomach.  It was a blessing to finally get it put in because if for some reason it would come out it is something my husband or I (or anyone really) can just put back in versus the PEG which would require a trip to ER.  It was also very painful for Keean with the PEG if it was pulled or messed with.  The Mic-key allowed for more "wiggle room". 
They wanted to do another biopsy while he was under to see if his villi looked like they were repairing themselves or changing in any other way.  SO, Happy 5 month birthday, baby boy!!!! Another trip to the operating room.....but thankfully it was a simple procedure and it was a positive change. 
This picture was taken right before surgery to have his Mic-key placed.

 This picture of Keean was taken at home after surgery and you can see what the mic-key looks like.

Monday, November 4, 2013

FREEDOM

September 16, 2011

This was one of the very best days of my LIFE.  Seriously!  I have had a lot of fantastic things happen to me in my life, but busting out of the hospital after 6 weeks and 1 day was the BEST.FEELING.EVER.  Yes, I said 6 weeks and 1 day.  I don't dis credit the 1 day.....I don't round it down to 6 weeks, because that 1 day was the best day out of all of them.......and if you have ever been in the hospital....EVERY day should count, right???

I remember when they came in.  They told me if he gained weight we could go home and wait for the AIE test to come back from there.  You could about imagine my anxiety when the wheeled scale #1 into our room.  I took Keean's clothes off and acted like a small child playing hide and seek.  I stood there with my eyes covered.......peeking through my fingers......anxiously waiting to see what the numbers told us.  And, when the scale finally beeped I thought I was going to scream with excitement!!! We were going home!!!!!!! They said it might be awhile because they had to draw up discharge papers, get his special formula ready, have the dietician come show me how to make his formula and get all the "orders" from all our doctors, but I didn't care.  They said the words...."You're going home" and it really didn't matter to me if it was right then and there or if it was at supper time.....I was going home!!!!! And I got to bring my baby with me.  Finally, all of us under the same roof.  Finally, I could be with my baby, my husband and my Mason at the same time.  Please, do me a favor and NEVER take that for granite. 

Trevor was back home working so I got everything all packed up and loaded and waited for the discharge summary to come. 

When we were in the hospital, Trevor and I dreamt of the day when we could both sit on our porch swings, grill out and enjoy the beautiful weather outside with our ENTIRE family under our roof.  And I was moments away from doing just that :)

I remember the feeling of getting to leave with Keean with me.  It was the BEST feeling EVER.  I got to leave the hospital with no anxiety about leaving him behind....because he was right there with me.  We said our good-bye's to our favorite nurses and doctors....we told them "thank you" for all they had done for us and we packed up and left.

The drive home took FOREVER.  But, again, I didn't care....because I knew in 2 hours I would be under my roof, with my baby and I was extremely thankful.

When we got home, we were greeted with a HUGE "Welcome Home" sign and perfect weather.  I threw everything in the house, I put Keean in his stroller and Trevor and I sat in our chairs.  The one's we had dreamt about the whole time we sat in the hospital.  We kicked up our feet and sat in silence.  There was nothing to say.  We were both smiling and thankful and happy and relaxed. 

There's no place like home!

Our doggy was excited to have us home too :)

Doctors

September 14, 2011

They removed the neckline from Keean that was the supply for the TPN (IV nutrition).  They told us being he hadn't used it for awhile they wanted to reduce the risk of infection and get rid of it.  I was completely 100% ok with this.  They informed me if he would need to go back on the TPN that they would put a more permanent port in anyway.  So, our goal was to sit and watch Keean gain weight and wait for the other test results to come in. 

I have to fill everyone in.  When the first doctor spoke with Trevor on the 2 more serious things they were testing him for, he made it sound like both Auto Immune Enteropathy and Microvillus Inclusion were fatal.  Trevor and I did not care for this GI doctor much because he was so negative and serious all the time.  Every time he walked into the room I would get a pit in my stomach because I thought something was wrong.  I didn't like it.  After the first test results came back negative of the Microvillus Inclusion, it was a relief.  I knew it was the lesser of 2 evils, but the GI doctor had led us to believe that the other one wasn't too far behind in how critical it was. 

I had hoped that the test for the Auto Immune Enteropathy would come back a few short days after the first test for MVI.  But, this was not the case.  I was sleep deprived and anxious, but that was when the GI doctors did their rotating and we were again with our favorite GI doctor we worked with while we were there (we actually still see her today). 

I remember when she came in to evaluate Keean after they removed his neck line.  She came in and I immediately started asking her questions about what it would mean if Keean had AIE.  She told me that AIE was treatable.  It would most likely mean that we would have to suppress his immune system which would increase his risk for infection, but it wasn't as complicated as MVI. 

WOW!  Really?  This would have been great information to know.....like from the beginning of this testing experience.  That was when I decided I wasn't going to see the other doctor again.  He was too negative for me.  Yes, I know some doctors are just straight forward and honest, but this doctor was more than that. He had me feeling hopeless and it was absolutely devastating to listen to the things he would say.  He was worse than Dr. Google in my book.  I had the nurses erase all the negative words off the white board in our room and decided we wouldn't talk about anything but weight gain and happy thoughts.  I couldn't do negative anymore.  It wasn't helping anyone and I was so thankful to be done with the doctor I just didn't "click" with. 

I do need to say.....he probably is an excellent doctor.  He probably does great and wonderful things and has probably figured out many mystery patients in his time, but one thing I learned on my journey is to stick with your gut and go with the doctors you feel most comfortable with.  Everyone has their own style.  And mine was trying to stay positive......not only for myself, but for everyone around me.....especially Keean.

Monday, October 28, 2013

Some tough stuff

I will never forget the day my husband called me from the hospital.  I had gone home for a few days to spend some time with Mason.  I was at his football game when the phone rang.  Every time someone called me from the hospital I would get a pit in my stomach.  I can still feel it when I think back to that day over 2 years ago.  I could tell by the sound of Trevor's voice it wasn't good.  He told me the doctor who had done Keean's PEG surgery came to talk to him about some of the tests they were running on Keean's GI tract.  For a long time I honestly thought they had ruled out any of the serious causes of Keean not being able to absorb nutrients and being so sick (we had been there for 5 weeks so I thought we ruled out everything bad), so the news I received from my husband that day hit me hard.  The doctor told Trevor that he believed Keean had one of 3 things going on.  1. We were just dealing with severe allergies and reflux, 2. Micro villus inclusion or 3. Auto Immune Enteropathy. 
The last 2 words probably don't mean much to those of you who have never had to know what they mean.  And if you haven't, be very thankful!  These are things that I had NO CLUE even existed until the day my husband called me.  I had never in my life heard of these words.  They were foreign to me and if I had it my way, I would have kept it that way.  I didn't want to learn about all these things, but here I was.......sitting on the sidelines at my sons football game learning things I still don't want to know about.  I immediately started bawling and I didn't even know why.  I hadn't researched what they meant yet.  I just remember asking Trevor, "What does this mean?" And Trevor responding, "I don't know, but it doesn't sound good." 
My plan to spend a few days with Mason were quickly put on hold and I was on my way back to the cities as soon as his game was over.  I had to get back to the hospital and I had to learn more.  One of my favorite GI doctors told me he was going to quit telling me what anything was called because he didn't want me to do my own research.  He would say, "Dr. Google is not your friend."  He was so very right, but I couldn't help myself.  I wanted to know everything.  I wanted to know what we were possibly dealing with and I wanted to know NOW.  We had been waiting for approximately 3 months to figure out what was going on with my baby and the fact that they were testing him for things I had never heard of, I had to learn more.  It's funny how for so long I prayed and prayed for answers, for something....anything...to give me answers so we could help him.  I wanted to know what it was called and I wanted to know how to fix it.  BUT when I heard these things, I didn't want to know anymore.  I wanted to continue our journey having no clue what was wrong with the hopes that he could eventually grow out of it.  I hoped and prayed with everything I had in me that it was as simple as allergies.  This was still an option.  And I was trying really really really hard to stay positive, but my mind couldn't help but travel to the dark places that could be our reality.
Microvillus Inclusion (for those of you who prefer not to visit Dr. Google) in a very non-scientific kind of way means your GI tract does not work at all.  Your intestines don't and can't absorb nutrients on their own and requires TPN (IV nutrition) for life.  Like I mentioned before TPN is very hard on the liver.  The life expectancy of this when I researched 2 years ago was approximately 3 years old. 
Auto immune enteropathy is where your immune system thinks your GI tract is foreign and attacks it which causes it to not function properly.  This is the lesser of the 2 evils, but is a very challenging disease.  Children who have this spend a lot of time missing school and in the hospital because, in order to keep it under control, they use immune suppressants.  Because of this, your immune system is down and makes a child more susceptible to getting sick......really sick.  These kids don't grow well and depending on the severity of it some may also be dependent on TPN (IV nutrition). Auto Immune Enteropathy is very rare....or appears rare...maybe because the testing for it is complicated.  It's a blood test, but can come back a false negative, a false positive or can be inconclusive.  It's prognosis is dependent on how severe the presentation of the disease.

I hope this all makes sense.  I'm trying to explain it in a way that was easier for me to understand.  IT was a lot to wrap my head around.   All I really heard and read was the prognosis of these diseases, the possible TPN dependency and how sick some of the kids were that already had a diagnosis.  I remember laying in Keean's hospital room sick to my stomach and crying .....a lot.  I felt alone and confused and lost and scared.  I didn't want to talk to anyone because I didn't know what to say.  I just wanted to hold my baby and pray and hope that these tests came back negative.  Call me a pessimist, but I couldn't escape the dark place my mind would wander to.  I had only had Keean in my life for 3 short months and I couldn't imagine life without him. 
I remember when we told the kids about the tests we were waiting for.  They told us the tests would take 5-7 days, so we thought we should fill the kids in on some of the things that we were waiting for so they could ask questions and not be so confused about my random emotional break downs.  I remember Trevor made reservations at a local water park about 30 minutes from Children's Hospital.  We were going to get away from the hospital and spend some time with the big kids.  I also remember going up to our hotel room and throwing myself on the bed and having a complete break down.  I cried so hard I thought I was going to quit breathing. I remember my husband holding me and telling me that we would get through whatever we had thrown at us.  That there was a purpose and that we still had the ability to hope.  I remember him telling me that we would have to make the best out of whatever was thrown at us.  I remember wishing I could be as positive as him....as hopeful....as calm and as strong.  I couldn't stop crying.  I couldn't get the sick feeling out of my stomach and I couldn't stop thinking about the "what-ifs".  I had so many conflicting thoughts going on.  I wanted to remain strong and positive, I wanted to put on a happy face and put on a show for the big kids pretending that everything was fine, but I couldn't.  No matter how hard I tried, I just couldn't do anything.  I didn't want to be anywhere but with my baby and I didn't want to talk to anyone until those test results came back.  I was traveling to a dark place.  It was almost like I didn't want to be happy until I knew everything was going to be ok.  I can't explain how hard it is to have these out of control feelings.....I know I could have handled things differently, but in the moment there was no other way for me to cope.  It was hard for me to talk to people who had no idea what it felt like to be waiting on such life changing news.  I wanted to find people who understood.  It wasn't that I didn't appreciate everyone around me reaching out, sending notes, messages, coming to visit, etc.  it was that I needed to know I wasn't alone.  I wanted to find people out there that had kids going through similar things.  (Not that I want other people to go through what I was, but I knew there had to be).  I started researching things online.  I connected with other parents who had children with both Microvillus Inclusion and Auto Immune Enteropathy.  I actually was able to connect with a mom who was also waiting the results of her daughters AIE (Auto Immune Enteropathy) test. (apparently her daughter and Keean's tests were batched together and we got our results at the same time).  I started to feel a little better knowing that I had people to talk to, people who understood where I was, who could tell me what to expect and to tell me more of the truths of what we could be dealing with versus Dr. Google who chooses to point out all the bad stuff. It was nice to connect with people who I could vent to and who I knew just "got it".  I love my family and friends with all my heart, but at this point in my life I needed those people.  I needed these complete strangers to help me through one of the toughest times of my life. 
Along with these perfect strangers, I relied on the nurses who worked with Keean to keep my emotions in check.  I remember one of my favorite nurses up there telling me not to worry.  She was so determined that Keean wasn't a sick baby.  She said she knew it sounded funny, because she knows he is sick, but she said he isn't sick like some of the other babies she sees.  She said she would be shocked if he had something serious, and really thought he had something that he would get over and grow out of.  Although, she probably shouldn't have gotten my hopes up, she sure made me feel better.  Her words allowed me to sleep better at night.  She had been a nurse longer than I had been alive so I trusted her.  There was something about her that just made me feel better.  I'm pretty sure some of the nurses who work up there had some kind of major in psychology too.  They should have been paid extra to be my therapist.  I promise there were days I felt like I belonged in the mental health unit.  There were days I had no idea what to do with myself and the nurses helped me through those.....and so did those complete strangers I have yet to meet. 
They told us the test results would take 5-7 days.  Well.....they forgot to mention that the Microvillus Inclusion test took 5-7 days.....the AIE test took 8-10 weeks.  That's a huge difference...especially when you are waiting for something so important.  I remember wanting to fly to Philadelphia and wait patiently next to the lab techs as they waited for the results to come back.  I think I may have threatened it a few times. 
Thankfully the lesser of the 2 evils was the one that took longer.....we got the results of the Microvillus Inclusion test on September 14.  This is the one that if it was positive, Keean would most likely need a intestinal transplant.  This was the one with the 3 year life expectancy.  I remember our favorite Hospitalist at Children's stopped in to say hello.  She actually wasn't even working with Keean that week, but saw the results and came to talk to us.  No one had actually told us the news until she stopped in.  Apparently, each doctor assumed someone else told us....so she broke the news to us that his test came back NEGATIVE!!!!  I remember sitting next to Trevor on the couch in our room, our favorite hospitalist was sitting on the rocking chair shocked that no one had said anything to us yet and we both started tearing up.  Trevor and I hugged each other and then the hospitalist.  I'm pretty sure we hugged everyone that came into our room.  We were so extremely happy, we had to share the love with everyone involved in Keean's care.  Yes, there was still a test result waiting out there, but the fact that this one came back negative made it easier to breathe.

The PEG tube

September 6, 2011
We sent Mr. Keean down for surgery the morning of September 6 to have his PEG tube placed.  This is the tube I was talking about earlier that would go directly into his stomach in stead of using the tube that went up his nose and down his throat.  This was a more permanent option and I felt that it was in Keean's best interest to have it.  PEG stands for
Percutaneous endoscopic gastrostomy and the actual wikpedia definition is as follows (if you aren't interested you can skip the bold and continue reading the story):

Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation). This provides enteral nutrition (making use of the natural digestion process of the gastrointestinal tract) despite bypassing the mouth; enteral nutrition is generally preferable to parenteral nutrition (which is only used when the GI tract must be avoided). The PEG procedure is an alternative to open surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used. PEG tubes may also be extended into the small intestine by passing a jejunal extension tube (PEG-J tube) through the PEG tube and into the jejunum via the pylorus.[1]

PEG administration of enteral feeds is the most commonly used method of nutritional support for patients in the community. Many stroke patients, for example, are at risk of aspiration pneumonia due to poor control over the swallowing muscles; some will benefit from a PEG performed to maintain nutrition. PEGs may also be inserted to decompress the stomach in cases of gastric volvulus.[2]

Well surgery went quick and really well.  Keean tolerated the whole process like the rock star he is and only needed morphine at 5:30pm and once in the middle of the night, which isn't always typical of kids who get these tubes placed.  It was so nice to see Keean's whole face again versus the NJ tube that was taped to his face.  The only thing he wasn't excited about was being snuggled after the surgery, which I don't blame him.  I wouldn't want to snuggle after a surgery like that either.  This was an exciting surgery for us because we knew Keean needed it.  We also knew that it would help him stop puking so much without the other tube tickling his throat all the time.  We were also glad that we were already in the hospital so we were settled and had our nice big room to sit back and learn all about Keean's new tube.  We could have the doctors and nurses support throughout the learning process and that made me feel so much more comfortable.  The PEG tube is actually what they put in first and has to be in for 6 weeks before they put in a tube called the Mic-Key button (which I'll talk more about after I get to that part of our journey).  Below is a picture of Keean right after his PEG placement.  The yellow tube is taped down so the tube doesn't move around.  Because they already had Keean under for the PEG placement, they decided to take more biopsies of his intestines to run more in depth tests.  And this, my friends, is when things got a little interesting........

Tuesday, October 22, 2013

Weaning off the TPN and talk of a PEG tube

September 1, 2011

This was the day that I had a conversation with the doctor that apparently not many moms have.  I decided that Keean should get a more permanent feeding tube placed.  This would mean Keean would have a hole put in his stomach and a tube going directly into his stomach instead of up his nose and down his throat.  Keean threw up a lot with the tube in his throat all the time.  I don't blame him.  I would gag and throw up too if something was continuously tickling my throat.  So, when I brought this up with the nurse she was a little surprised.  She said she has never had a mom come to her and request one before (and she had been a nurse for longer than I had been alive).  She said moms are typically hesitant and scared.
Well.  I'm not going to lie.  I was a little nervous, but I had nothing to be scared about.  I was actually excited.  The only thing I was scared for was the procedure itself.  I hate when they put him under.  I knew that Keean was going to need a feeding tube for a longer period of time than a few weeks.  I knew that the one he had down his throat wasn't working well at all and I knew that it was in his best interest to get one. I wanted to have it done while we were still there so we could learn how to use it and adjust to life with a tubie (this is what we call our kids with feeding tubes)!  Having a PEG tube placed meant they wanted to keep Keean on his TPN  (IV nutrition) line in longer because after you have this procedure done, you can't use the tube for 24 hours.  They were in the process of weaning Keean off the TPN which they continued to do, but kept the line there so when he went with no food, he could continue to get calories.  The doctor was excited that we were so open to doing all of this.  I was too.  They said that it would most likely mean that home was in our near future if everything went well. At this point, Keean was completely off TPN and was tolerating full feeds through his tube.  This was more than exciting for us.  He hadn't tolerated full feeds since we were admitted.  He was gaining weight without the TPN and strictly by formula!  This was actually more than exciting.  This was HUGE!  We were finally able to have a little hope again.  PEG tube placement surgery was scheduled for 1030am on September 6, 2011.

Gaining a little weight......

August 24, 2011
Keean started to gain weight well after getting the IV nutrition pumping in his body.  They continued to feed him formula through his NJ tube (which is the tube that goes up his nose and has a tube that goes into his stomach and one that goes directly into his intestines).  Keean had gained 6.5 lbs in 4 days from the IV nutrition and was starting to look so much better.  He was still obviously tiny for his age, but not looking so malnourished.  Praise the Lord.
The questions at this point were; How damaged are his intestines, how long will it take for them to heal, and what / how much formula can he handle? 
Our plan at this point was to watch his weight gain and let him sit on the IV nutrition (TPN) for 4-5 days. 
They wanted to get him tolerating sugar in his formula again which was proving to be a more difficult task than one would think.  Keean was supposed to get to a sugar of 6% and as soon as we reached 5% he started throwing up and getting uncomfortable.  He was bloated, uncomfortable, cranky and was back to having watery mucus in his stool :(  It got to be frustrating.  We were so encouraged after his weight gain with the TPN, it was hard to see him start going backwards.  This backwards stuff went on for a bit and by August 27, Keean was back to gaining weight a little better. He was almost 3 months old and was 9lbs 6oz.  He had officially gained a pound since we were admitted to Children's Hospital 3 weeks before.  Keean was not bottling much at this point.  He seemed to throw up more frequently when he did bottle, but they encouraged us to keep on trying.
There was some talk about sending us to a hospital closer to home, but the GI doctor said that they wouldn't consider it until he was stable and on a formula that he was tolerating and they wanted to get him off of TPN if possible before sending him home.  The TPN lines have a greater risk for infection than his feeding tube and it is a lot more dangerous to work with at home.  
I was ok with everything going on because they were trying things, changing things and working on getting Keean stable enough to be discharged.  
I was just happy that Keean was gaining weight.  It's crazy how it was never something I paid close attention to with my oldest son.  He was always big for his age.  He graced this world at 9lbs 13oz so having a tiny baby and watching those numbers was new.  Every morning they would wheel the scale in the room and every morning we would wait ever so impatiently to see what numbers were there.  Did he gain weight? Stay the same? Or lose?  I was honestly fine as long as they didn't go down.  And at this point, he was heading in the right direction.

Wednesday, October 16, 2013

The PICC line placement

Keean's PICC line (the line that is placed for TPN I mentioned in my last post) was scheduled to be placed at 9:30am on August 20. 

Here we go again!  Super anxious mama and another night of nothing by mouth for Keean.  I hated doing that because he was in there for not gaining weight and at this point weighed less than he did when we were first admitted 3 weeks before.  BUT, ya do what ya gotta do and gave him IV fluid only starting at 1am and cut off all his feedings.  They are supposed to go 6 hours with nothing by mouth or any food before a procedure. 

This was tough enough to do, but when they had not come to get him for his 9am procedure by 1pm this anxious and over tired mama was about to lose it.  The nurses on our floor were completely confused and finally heard that there was an emergency surgery so ours was pushed back.  It was going to happen at 1.  At 2pm, the doctor came to see how things were going, assuming he had his line placed and I was on the verge of screaming.  I had called my husband who called the hospital and they told him surgery was re-scheduled for 10am the next morning.  NO one had communicated this with us or our nurses so we were just sitting there with my starving failure to thrive baby, waiting to get wheeled to surgery.  I kindly (ok not really but I was as kind as I could be at this point) told the doctor that Keean had not had anything by mouth for over 12 hours and they needed to figure out something.  I was not going to do it again 2 nights in a row.  So, they needed to find someone, somewhere that knew what they were doing and they needed to do it NOW.

The doctor was very helpful.  He called up to the NICU and PICU to see if any of the doctors could do it there.  There was a procedure room open and a doctor in the PICU was able to do the line placement.  FINALLY!!!

I went through the same motions of wheeling him down, sick to my stomach, kissed him and told him I loved him and went to my place in the waiting room.  This procedure took awhile longer than the endoscopy, so it was tough. I did what I had to do to keep my mind busy, but there was always nervous icky feeling present.  My mind could never fully focus on what I was doing or who I was talking to until they told me everything was fine. It's funny how those feelings don't get better after numerous procedures.  BUT, again the doctors were awesome and we got through :)  The line was placed with no major problems and we brought our boy back to his room in ICC to wait and see if this would help jump start some weight gain!

Formula changes and weight loss

Well because of the virus I mentioned in an earlier post and switching to a carb free formula, Keean actually lost so much weight he weighed less than he did when we were admitted.  It was now August 17, we had been in the hospital since August 4 and we were moving backwards in the weight department.  The doctors finally told me we weren't going to pay attention to his weight for awhile because they, instead, wanted to figure out what formula Keean tolerated best.  So, that's what we did.  Because he was on a carb free formula, they had to do heel pricks every 4 hours to check his blood sugar and he had to get a different form of sugar going through his IV to prevent any blood sugar issues.  It was tough to see.  He, of course, was a trooper.  Taking on the heel pricks like they were taking his temperature.  He was quite tolerant of all the labs being drawn and people surrounding him.

By August 19, it was decided that we had to come up with a new plan.  Regardless of the fact that they had started a new formula and were increasing calories, Keean continued to lose weight.  He was throwing up more, his stools started to increase again and he was starting to act a little uncomfortable.  The GI doctor and the pediatrician came in and told us that they wanted to start Keean on TPN (Total Parenteral Nutrition).  In other words (or words I understood best), Keean would be put under and they would place an IV in his neck which would pump all the nutrients we need through his blood. They wanted to give his GI tract a little break and ensure he was getting all the nutrients he needed.  They told us more about it and wanted to just play it by ear as to how long he would need this for.

Here is a definition I found online: Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes. It may be called peripheral parenteral nutrition (PPN) when administered through vein access in a limb, rather than through a central vein.

This sounded fine and dandy to me in a stand point of gaining weight.  It would be nice to have him getting all the nutrients he needed (not knowing what he was absorbing and what he wasn't from formula), but at the same time it was scary not knowing how long he would need it. 

TPN is kind of a bitter sweet kind of thing.  It guarantees nutrients, but it is dangerous.  Being TPN is given through an IV, it runs the risk of the IV line getting infected which can make your body toxic and the TPN itself can be very damaging to the liver.  This was scary.  We were unsure how Keean would respond to it, if his line would remain infection free while we needed it and if we would ever be able to wean him off of it.  There are many things that could require Keean to be on TPN long term or for life and this was horrifying to me.  BUT I also couldn't watch him lose any more weight and knew we had to do it!  So, they scheduled the procedure.

Monday, October 7, 2013

The first endoscopy

August 16, 2011, Keean's fevers went down and we were given permission to do his first endoscopy.  This was Keean's first experience getting put under.  He had to fast for 13 hours before they took him down for the procedure.  I'm not going to lie.....it was super hard for me to not feed him for 13 hours when the reason we were there was because he wasn't gaining weight.

Anyway....Keean was a rock star.  You could not tell that he hadn't eaten for 13 hours.  Maybe it's a perk of having a child who doesn't like food. When they have to have nothing by mouth, it's almost a treat! 

I would love to tell you all that I was also a rock star.  That I was this strong, put together mommy who just sent her baby away with no problems. You know, the mom who puts their baby on the operating table, smiles and waves and then goes out to eat with her friends like they just dropped their kid off at daycare.  OH, how I wish that was me.  It's safe to say I was the complete opposite.   I was a nervous piece of work.  I think they should have put me under first and then Keean.  Or they could possibly just admit me to the Mental Health Unit and let me sit until they could tell me everything was ok.  I don't know what it is with watching Keean get sent back to get put under, but it never got easier.  I can't imagine what parents go through when they send their babies off to have heart surgery or anything other kind of invasive surgery.  My heart goes out to them and I have more of an appreciation for those mamas now than I ever had before Keean.  I am completely aware that Keean was just having a tube with a camera go down his throat and into his stomach and intestine to see what was up, but I was a mess.  I think you could say I felt as if it was a risky invasive surgery, when I knew very well that it wasn't a big deal.  And I wish I could say it doesn't bother me.  It probably shouldn't have.  He didn't seem to care.  He just looked at me with his big eyes and smiled as they wheeled him away.  I'm pretty sure I couldn't relax until they came out to say he was out of surgery and was waking up.

The procedure didn't take very long.  I don't remember exactly how long it took, but I don't think it took more than 45 minutes.  Again, I don't know how people do it for those long procedures.  I do believe I would need medication to get me through it.  Something that would knock me out.  BUT anyway, our GI doctor came out and showed us pictures.  She told us everything looked normal from the naked eye and it would be a few days before we had any news.  Some of the tests took days, some took a few weeks.  In the meantime, we were asked to do what we were learning to do best.  Wait.  Wait for test results, wait to see if the new formula would help him gain weight and wait to go home!

Tests, tests and more tests

Being the mystery baby, the doctors had their work cut out for them.  Someone had to figure out what was going on.  Unfortunately, to do this, they had to take blood ....TONS of blood and stool samples to see if someone could find something someone missed before.  One of the blood tests they did tested Keean for was a virus that mimics the roto virus called the enterovirus (watery stool, puking, fevers).  This test came back positive as Keean was starting to experience fevers and more frequent watery stool.  This, of course, is not good for someone like Keean and we were immediately quarantined to our room to prevent other babies on the floor from catching it.  It is very contagious.  Some of the doctors questioned if Keean caught it while at the hospital, while others questioned if he was starting to show symptoms of it before we were even admitted.  Apparently this virus can hang on for awhile. 
This, of course, had me a little hopeful that Keean was on the wrong formula when he was first born which caused the puking and trouble stooling.  I thought MAYBE we actually did have him on the right formula, but he caught this virus which caused him to go backwards and it was as simple as that.  It was a HUGE run of bad luck and once the virus passed we could go home!  A girl can hope, right?
Along with this virus, one of the stool samples showed that Keean was malabsorbing sugar.  This made sense because he was having watery stools, was gassy and had a distended stomach.  Because of this, we had to switch formulas yet again.  We started giving him a formula called 3232A.  This formula does not have sugar and is made so different types of sugars can be added in according to what the patient can tolerate.
This was not an easy task, figuring out what Keean needed was complicated.  We worked with a dietician who concocted a formula that was "just right" for Keean. You would actually be amazed if you saw what went into make up this formula.  It wasn't the typical "6 ounces of water 3 scoops of formula, put it in a bottle and shake it up" directions.  This concoction was made up of 3232A, polycose and microlipids. We used gram scales, huge jugs, droppers and scoops just to make him a bottle.  It was interesting.  It is extremely safe to say I was happy they mixed it up for us when we were at the hospital. 
Because of the malabsorption and the virus we were unsure if Keean would get to have his biopsy.  It was August 14.  We were switching formulas, yet again, we had a baby who was losing weight, yet again and we wanted answers.  The only way to do this was to have a biopsy done, but in order to do the biopsy he had to be fever free and feeling well enough to get put under.  I did the only thing I could do and I asked for prayers.....lots and lots of prayers. 

Tuesday, October 1, 2013

Where do we go from here?

August 13, 2011 was a frustrating day.  See, they did Keean's weight checks every morning at the same time every day.  They brought in scale #1 (all their scales are numbered and when a baby has weight issues they ensure they weight the baby at the same time with the same scale to avoid any difference) so his weight was as accurate as it could have been and he had LOST weight :(  Seriously?  We got to the point where we lived for these weigh in's.  In fact, some of his nurses would stay a little late after their over night shift to see this number.  Our heads would all meet in the middle above the scale and wait patiently as the red light would blink until it was ready to tell us the number.  Keean had been doing fairly well with weight gain since his feeding tube was placed, but something changed.  We weighed him in grams (and still did up until a few months ago) and one day he was 4.04, the next 4.01.  This was almost an ounce in the WRONG direction.  I wanted to cry.  I asked them to do it again.....and again......and still nothing changed.  He had lost weight and no one knew what to do.

This was frustrating, but the doctor talked with us and ensured us she would be back later with the GI doctor to discuss a plan.  They were going to have a meeting and figure out what our next steps were.  How long did we let him lose weight before intervening or trying something new?  What was causing him to not absorb nutrients?  Why, even if he's not puking as much is he not able to gain?  It was confusing and frustrating and I felt defeated.

Well, when the GI doc and the regular pediatrician came in to talk to us they told us that Keean was one of the mystery babies.  They didn't know what was going on.  Great.  Now, there are times this is funny when your child (or yourself) is completely different and confusing.  I take pride in being a complete mystery to people at times.  I think it's great when my kids are who they are and don't follow the norm, but not in this case.  It was a terrifying feeling to hear that the most educated doctors in the state and some of the country had no clue what was going on with Keean.  And because they didn't know what was going on, they really couldn't do much to help him.  UGH.  I remember crying.  I didn't want to hear we had a mystery baby.  I wanted to know exactly what was wrong and I wanted to do something NOW to fix it. 

They discussed doing an upper endoscopy.  They would put Keean under and go up his nose, down his throat and into his stomach and upper intestines with a camera and take a biopsy of his stomach and intestines to test for different things.  Now, they said they weren't sure what they would find with this because the things they would think of testing him for should have been ruled out in blood work, but it was something to try. 

They also wanted to change his formula to see if it would help with anything, which they did, but his watery stools continued and his weight gain didn't improve....so we were put on the schedule to do the endoscopy and pray for answers.  In my caring bridge post on this day, I can still feel the frustration and sadness, the comfort of being in the hospital and the aching to be home.  It was a rollercoaster.....and that ride was just beginning.

Monday, September 30, 2013

A new room

August 12, 2011

The doctors started having us feed Keean strictly by tube and only wanted us to give him 5-10ml's by mouth for comfort. 

A scary thing stopping a baby from eating by mouth is that they potentially could lose their ability to suck, which in turn could cause them to have to re-learn how to eat.  We didn't want this to happen, obviously, so we really forced the nuk on Keean as well as allowed him to eat some by mouth.

At this point, Keean had only thrown up once (instead of the numerous, can't even count it all on 2 hands kind of puking he was doing before).  Being the feeding tube was passing through his stomach and into his intestines, Keean did experience some cramping at first from the feeding tube, but that also seemed to be getting better.  He was getting outside and we were just waiting around monitoring his weight every morning and crossing our fingers we were on the right path. Keean was getting 24 calories/ounce at this point (again the standard is 20cal/ounce). 

Like I said before, we were doing pretty good.  It was day 8 in the hospital and we were told 5-7 more days just to keep an eye on things.  It wasn't going to be too bad.  I would be home by the time school started and could be there for Mason when he started 6th grade.  I was offered a position at the school working 4 hours a day as a para which would be perfect and I wouldn't even have to call and tell them I wouldn't be there!  Awesome!  Things were good.  And I was counting down those 5-7 days like a child does counting down for Christmas. 

We were also offered to move rooms.  We had been in the small room with no bathroom and barely any room for 3 people and a chair for 8 days.  When we had visitors we would go in the family lounge so everyone could fit. This room would have a bathroom and was about twice the size of the one we were in. They told us the only stipulation with the room is we wouldn't have a window.  WOOP-TE-DO.  I didn't care.  I would take no window over 3am walks down the long hallway to use a restroom and to have twice the space.  The window view from Children's Hospital in Minneapolis was nothing to brag about anyway.  Not sure if any of you have been there, but let's just say I'm not sure who thought up the location of a beautiful new Children's Hospital, but I would love to talk to him/her and hear the logic behind the place they decided to build.  It makes no sense. Let's just say I was scared to leave.  It was an ok thing that I couldn't see outside.

So, we moved to a bigger room and with this move came new nurses.  We were still in the Infant Care Center, but it was a completely different wing.  This was ok with me, but it is always a little scary letting new people learn Keean and us and our routine.  Now, I obviously know that I had nothing to worry about, but then it was just something else to stress over: new faces, new personalities, who I could trust, who I didn't want in our room and getting to know our "neighbors" and their stories.

We all moved, we settled in and we kept on counting 5-7 days and we could escape and start our life back home again!  I couldn't wait....

This picture was taken in the hall right outside our new room.  Keean and daddy were taking a walk while we were able to get out in the halls and go outside :)

Thursday, September 26, 2013

The Ronald McDonald House

I figured I should take a break from Keean's story for a moment and talk about one of the BEST things we had offered to us at Children's Hospital in Minneapolis.......The Ronald McDonald House.

I had visions in my head of what the Ronald McDonald House was and looked like, but I never really understood it until I was there.  They offered me a room the very first night I was there.  Of course I refused.  I was the crazy mom who wouldn't leave her baby alone with those nurses who knew nothing. (of course I don't really feel this way now, but at the time no one knew anything about Keean besides me and his dad).

The Ronald McDonald House was new to the hospital.  Unlike other hospitals, this one was attached to Children's and you could access it from the 3rd floor of the hospital.  This was AWESOME because that's where Keean was.  The Infant Care Center (or ICC) was on the 3rd floor along with the NICU.  To be honest, I'm not sure how long it would have taken me to utilize the RMH if it weren't on the same floor as Keean.  But it was.  So, I was right there.  In case anything happened.  I didn't have to travel up elevators or stairs.  I could just walk down the hall.  I can't imagine how I would have handled it if I would have had to leave the hospital to stay.

I will never be able to describe exactly what this place was like, but it was beautiful.  If they were trying to make a "at home" atmosphere, they completely out did themselves.  It was perfect.  The pantry was open to all, there was a huge kitchen, nice comfy furniture, an exercise room, a patio so you could sit outside and a big screen television.  This part of the RMH was accessible to families and friends every day until 10pm. The rooms were behind a door you needed a key for.  In the morning you sign up to be on a list to get a room.  The rooms are first available for the emergencies and the parents that have critical babies.  If they aren't used up by these parents, then you are notified that you get a room to stay in for the night.  You would go check in and get your key. Check out was by 10am the next morning.  You would then be put on the list again and await the day hoping to get a room for the next night.  It was not an option to just get a room for the entire time, so every night you would check in and every morning you would check out.   I wish I had taken a picture inside one of the bedrooms, but I did get a picture of the living area.  The rooms had a nice queen size bed, a tv, and a beautiful bathroom with a shower.  It was awesome to go somewhere away from the beeps, the chatter, the machines and the lights of the ICC and to feel a little normal.  There were showers in the hospital restrooms, but it was more like a locker room shower.  At the RMH it felt more like home.  It was refreshing and relaxing.

There were people who volunteered their time to come serve a meal for supper.  Sometimes these people had never set foot on Children's campus, while others had spend months there with their children and wanted to give back.  It was amazing to see all the volunteers come feed complete strangers going through a tough time.  We have talked to our kids and want to go back and do the volunteer thing and give back like so many others do.

I am so very thankful for the RMH.  And so very thankful it was right inside the hospital so I didn't have to take a bus or a cab to sleep.  It was right there. Right down the hall from my baby.  And that was the only way I would leave.


Here is one of the only pictures I got of the RMH.  This is the view from the patio side looking toward the living room and dining room.  The girl in the picture is standing partially in the kitchen.

After given permission to take Keean out of his room, we thought it would be fun to sit with him at the RMH and watch some television.  Little did we know that this was not allowed.  OOPS.  The person from the front desk felt horrible, but asked us to leave and use the family room that was within the hospital.  The family room was right around the corning from the RMH and had couches, toys, a television and a kitchen.  We spend lots of time in there when we could.  BUT, our time with Keean being out and about outside his room didn't last too long.

One more week

It was now August 11, 2011.  One week after we had been admitted to the hospital.  We had packed up to leave twice and had our hopes up that after this feeding tube we would get to go home.  
I'm not sure if everyone is familiar with how Children's Hospital works, but they have Dr's who round for up to 1 week and then they rotate out and a new doctor would come in for anywhere from 3-7 days.  So, the doctor we had when we were admitted was not the doctor we had 2 days after we got there because we came in the middle of the rotation.  This is true with the pediatricians, the hospitalists, the GI doctors, etc.  
The pediatrician we had during the week of August 11 was one of our favorites.  When she came in to talk to us the morning of August 11 she was very comforting and talked about numerous things going on.  She said she noticed that Keean was really good at starting strong with something new and then he starts to show similar symptoms he was experiencing when he was admitted.  Because of this, she asked that we strictly tube feed him for 24 hours and only feed him by mouth for comfort.  She believed that Keean had begun associating food with pain and because of this was lacking nutrition to grow and feel better.  
At this point, the tests that were run had all came back negative.  His diagnosis was a "super-fluxer", Failure to Thrive and a stomach that was slow to empty.  Keean was puking up to 2-3 hours after he ate.  This was frustrating and discouraging.  Just when we thought we had gotten him to keep a bottle down, he would throw it up.  
Because of this, the doctor said she wanted us to stay for 5-7 more days to see how he did.  Our plan was to add back more through his bottle little by little with hopes to keep it down to grow and gain weight so he could strengthen the muscle that kept his formula down.  
At this point, we had adjusted to the idea of staying in the hospital.  We were in a routine.  We would take turns getting a good nights sleep in the Ronald McDonald House while the other stayed with Keean. Up to this point, we were not allowed to leave the room with Keean, so when we would go eat or anything we had to leave him alone.  When the pediatrician spoke with us, she said we had permission to leave with him!  This was so exciting!  To think that something so little as leaving the hospital room WITH my boy could make me so extremely happy. They only asked that we come back every 4 hours for vitals and to change out the feeding bag. Life was good.  Keean was happy.  We got to walk out of the hospitals 4 walls and take him outside.  And in our minds the end of our hospital stay would be over in 5-7 short days!!!!  The only thing missing was having our big kids with us.

Thursday, September 19, 2013

The first feeding tube

I am using my caring bridge site as a reference to write some of these posts.  I don't want to forget any crucial information that may help someone else out and I want to make sure I include as much of his story as I can.

August 9 they told us that up to this point Keean's only diagnosis (which isn't really a diagnosis) was failure to thrive due to severe acid reflux and protein intolerance.  I was to the point where I really didn't care what you call it, I just wanted him fixed.  I wanted him to thrive, I wanted him to feel good and not be in pain, I wanted him to quit puking and I wanted to get out of that hospital. 

I remember when they first talked to us about a feeding tube.  They explained that it was a tube that would go up his nose, down his throat, past his stomach and into his intestines.  They wanted to surpass his stomach to avoid any reflux.  They told us it would be temporary.  Probably 3-4 weeks just to get him caught up and then they could take it out.  We didn't have to worry if he pulled it out because it wouldn't hurt him and it was easy to put back in. 

I remember clearly how excited I was for this.  Keean was going to have an upper GI done and then have a feeding tube put in. This tube was going to help his severe reflux and was going to help him gain weight and we were going to get outta that place!!!!  WOHOO!!  The procedure was at 3 and I think I was pretty much packed and ready to go home because I thought it was the answer to all the problems.  He just needed a little boost!!!



The above picture is Keean's daddy taking Keean down to his Upper GI and feeding tube placement.  Love that sweet face!!!  Below is after the procedure.  The tube is actually taped to his face so he couldn't pull it off.  It was hard to see all that tape on him covering up his cuteness, but if it helped I was ok with it!!!  He was exhausted!!!! 


Trevor and I got to be in the room with Keean through the whole procedure.  Everything on the Upper GI looked normal the tube went in perfectly!!!!  The whole procedure took about 20 minutes. The doctors started him out slowly getting feeds, but increased him to an ounce an hour.  We were told to bottle feed him during the day and tube feed him at night.

We were also told to give him a bottle when he acted hungry.  The first night he did not keep his bottles down.  The Dr. came to talk to us the next morning and said being he was still throwing up she would like us to stay at the hospital.  I was ok with that because when I went home I wanted to stay there, I did NOT want to turn around and go right back.  So, we planned to stay another night to keep an eye on his feedings, to make the doctor happy and to just be sure!

Looking back at my 2nd caringbridge entry I had to laugh.  Not because it was funny, but because of what I said.  It was August 9, 2011 and my post said, "If all goes well we should be out of here by tomorrow" referring to Children's Hospital.  BAHAHAHAHA!  If only I knew then what I know now!  I will just clarify....we did not get out of the hospital August 10.