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

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. 

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.

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 :)