Lovin' on Mr. Caterpillar

Jett has been lovin' on this cute caterpillar toy lately (thank you, Devin!).  This is the first time EVER that he will grab something (well, we have to place it in his arms) and hold it close to him.  He likes the fuzziness touching his face and likes to give it "kisses".  We spent the night at the ER on Saturday night and so Jett has been needing the extra cuddling.  By the way, I hate ear infections...especially double ear infections, and I'm pretty sure that Jett does too.

On a better note, our private duty nursing has begun!  We are so grateful to have qualified for nursing in our home.  From here on out, a nurse will come to our home every night from 11 p.m. to 7 a.m. so that Cody and I can get some good sleep. This will happen Sunday through Thursday.  The word that comes to my mind...MAGICAL and words can't even describe how excited I was to go to sleep last night.  Cody was trying to talk to me and I was like, "Shhhh...you are wasting my sleep time." Jett had a pretty good night and only woke up once for the nurse.  She gave him his middle-of-the-night meds and rocked him back to sleep.  I am so incredibly grateful that he is being cared for so closely throughout the night.  Sometimes I worry that even though his video monitor is right next to me while I sleep, that I won't hear him.  This definitely gives me peace of mind and will help me care for him better during the day.

This is kind of a random thought, but even though we are experiencing one of the biggest challenges we will ever face, we have been blessed to meet some really wonderful and genuine people along the way.  Not only are we surrounded by amazing friends and neighbors, but the doctors and nurses have also become our close friends.  You can tell that they truly care for Jett and want the best for him and us.

Our Friday the 13th Story

Everyone has to have a Friday the 13th story, right?  Well leave it up to me to schedule surgery for Jett on that day!  To tell you the truth, looking back, we feel like what I'm about to tell you was a blessing in disguise...but I'm going to keep you in suspense for a minute.

This week has been absolutely amazing!  Cody has summer break and is FREE for a whole month.  Can you believe it?  I have him all to myself and I love it.  Normally, we would plan a fun get-a-way or take up some flying lessons again.  Well, with Mr. Jett, we are unable to do that kind of stuff right now.  He likes to keep us on our toes and close to a hospital.  Even though we have stayed home this week, we have made the best of it.  Cody has worked on our basement theater room and I have enjoyed organizing our storage room.  By the way, I'm not kidding when I say "enjoyed". Organization makes me happy.

We have tried to take Jett out each day to run errands, but we don't go too far.  If Jett got his way, I think he would choose to stay home and cuddle with his fuzzy blanket while looking at the ceiling fan. No joke.  He loves that thing.  Anyway, one day we were feeling adventurous and bought Jett his very first swimsuit.  We took him for a "dip" in our neighbor's swimming pool.

He tolerated the not-so-warm water pretty well, but was sure to give us some mean faces every now and again.

Now for our Friday the 13th story...it began on a cold, stormy night.  Ha!  We wish.  It actually began in 105 degree weather with 100% humidity.  Yes, a true nightmare.  Anyway, as I mentioned, I scheduled a surgery for Jett.  His current feeding tube was falling apart and was just not doing the job.  The only way to change it was for him to go under anesthesia and have the gastroenterologist (who will go unnamed) place a new one. Ugh. We dislike anesthesia with a passion.  Jett has always had some sort of "reaction" to it.

We spent two hours prior to the surgery talking with the anesthesiologists and meticulously planning the procedure so that Jett would recover better than he has in the past.  They were extremely efficient and wanted to make sure that Jett was as safe as he could be.

The surgery took place at 2 p.m. and Jett recovered remarkably well.  This was a Friday the 13th miracle!  It was now 5 p.m. and the nurses were ready to discharge us...we were seriously so excited that Jett didn't have to spend the night at the hospital. 

"Let's start him on his feeds first," says Kathleen (who, by the way, was one of our favorite nurses ever), "You know, to make sure that there aren't any leaks or anything."

Well, of course.  This was definitely a wise piece of advice and so we started Jett on his feeds.

BEEP! BEEP! BEEP! The feeding pump kept alarming saying that there was "No FLOW".  What the heck?  This is a new tube and shouldn't be happening.  I grabbed a syringe, filled it with water, and began my attempt to flush the tube.  No such luck.  We had a big problem on our hands. The tube was kinked inside of Jett's body. Cody became livid and I actually kept my cool for the first time ever.

Come to find out, the gastroenterologist never checked his work once the tube was placed.  He literally just put in inside Jett and didn't take an X-Ray or anything to make sure that everything was in its proper place. We were very frustrated to say the least.

"Are you saying I have to get the sleepy medicine again? Ugh!"

Just our luck, the gastroenterologist had left for the day...heck, he probably was already on his way out of Omaha leaving on family vacation.  We called him and he did NOT want to come back into the hospital.  He tried everything he could to make it so that he wouldn't have to come back in.  Cody got even more livid.  The nurses were amazing and were right there to help us.  I'm not sure how it happened, but they got the GI doc to come back to the hospital.

Jett went under X-Ray.  Sure enough, a large kink was seen. The nurses took him right back to the operating room for a SECOND operation.

Jett is the toughest guy we know!  He went through a lot in one day and stayed strong the entire time.  We were able to take him home that night around midnight...just in time for Friday the 13th to be over.

Earlier I had referred to this mistake as a blessing in disguise and it actually was.  The original feeding tube that the GI had placed was way too long for Jett's little body and would have caused him a lot of pain.  During the second surgery, the GI decided to switch for a shorter tube.  Jett has been feeling wonderful this week.  It might be a coincidence that he hasn't experienced the tummy pain that he usually endures, but whatever it is, we are so grateful.  We love our happy, little fighter Jett.

In a nutshell...

Here is what has been going on in our neck of the woods most recently:

Grandma Sherrie came to stay for two weeks!  

She spoiled Jett with lots of kisses and songs...and boy, was she a help to me.  I was able to be "ME" every now and again.  I went shopping with friends a couple times and even started up yoga again.

Notice how shiny my teeth are??  Haha.  Dr. Boseman (there on the right) cleaned my teeth today.  I was proud to be his first patient and he did an amazing job.  Only poked me twice. 

Jett became friends with a minor league baseball team.  They sent him a baseball bat

with all of their autographs on it and renamed their team, "Jett's Angels".  So cute.

Kusaba has been enjoying spying on and barking at all of the wild creatures in our yard.  We live near the botanical gardens which are full of deer, turkeys, squirrels, and raccoons.  They like to venture onto our side of the fence and eat our tomato plants.  Not cool, Mr. Deer, not cool.

Daddy gives Jett his daily head tickles.

The last two days, the weather here has been actually bearable.  The humidity has finally gone down from 100% to 95% (or something like that) and we can actually go outside and lay under our big tree.  Jett likes looking up into the trees and smiles when the wind touches his face.

Jett has been getting longer...not fatter, just longer.  He is such a bean pole, but at least he is growing! His tummy has been giving him a lot of trouble lately.  His stomach ulcers, and who knows what else, have been acting up.  Maalox has become our best friend!

Daddy and Jett have continued their daily exercise session.  Jett likes to do tummy rolls on the side of our couch or ottoman.  Sometimes we even get some smiles out of him.  They are definitely a good distraction for when he is experiencing tummy pain...it helps get the farts out.  Seriously! And honestly, hearing him fart is like music to my ears because he has such a hard time doing it, but feels SO much better once their out.  Oh the little things in life that make me happy!

Peek-a-boo!

I have been blessed to meet some AMAZING friends here!  They are so fun and so supportive.  This picture was taken on July 4th.  Our little neighborhood had a breakfast bash.  Notice my hair??  Yeah, the humidity was already at 100% so there was no chance I was going to do anything with it that day.  Jett slept through the whole thing.  He missed out on some yummy pancakes and bacon.

Kusaba missed out on the pancakes and bacon too, but not on his own accord.  He got banished back to the house after trying to eat off of everyone's plates.  He hates missing out on all the fun...but don't feel bad for him just yet.  Kusaba has pretty much become the community dog and it's awesome.  Little neighbor kids come over every day to take him on walks and play ball.  He is in heaven!  Tonight, he spent about an hour over at our neighbors house playing with their kids. I better start giving him a curfew.  He better not think he can stay out late every night.  Haha!

I still give Jett his daily kisses.  We do our stretches and sing songs.  I am still a horrible singer, but Jett doesn't seem to care.  

We got a surprise in the mail!!  Don't we look so excited?!  This package came from Jett's friend, Rudy, who lives all the way across the pond...in England.  Little Rudy has Pontocerebellar Hypoplasia as well.  Rudy loves looking at fiber optic lights and thought that Jett would like them too...

 And he does!!

When Jett is able to focus (so basically anytime he isn't in pain), he loves looking at these lights.

Thanks Rudy!!  I will be making a special post about Rudy on Jett's blog. Stay tuned.

The rest of our week will have some UPs and some DOWNs.  The "up" is that Cody will be finished with his summer semester on Friday.  Whoop whoop!  He has been a pathology and biochemistry maniac these past few weeks.  I am so proud of him.  The fact that he can focus on school (and pretty intense school for that matter) and still take the time to help with Jett is beyond me.  I would not be able to do what he does.

The "down" for our week is that Jett goes into the hospital on Friday.  He will undergo surgery for a feeding tube replacement.  The doctor will also take some pictures of his stomach and take some biopsies.  I am also concerned that Jett may have scoliosis and something wrong with his lower intestines.  Hopefully we get some answers.  We know you always do...but keep us in your prayers!  Love you all. 

Splish Splash

Bath time has become both mine and Jett's favorite part of the day...last night was no exception.  There is something about the warm water that brings the smiles out!  This Nebraska weather can get hot and sticky so its no wonder he loves getting in the water.  I love how focused he is in the pictures below.  I have learned that when he can focus on something he is feeling good.  Yes!!  Such a welcomed relief for both him and I (and daddy who has been studying like a maniac lately and needs some peace and quiet).

Fuzzy pic, but I don't care...look how cute Jett's face is. And he is looking up at me.  Even better.

Taking My Backpack OFF!

I am pretty sure that today's lesson at church was specifically for me.  It was about FORGIVENESS.  Lately, I have been angry and bitter toward the Lord and toward myself.  I continually ask questions like, "Why me?" or "What did I do wrong?" Honestly, I should probably go back and re-read my post about anger.  It's funny how quickly you get back to that "bad" place. It is way too easy sometimes to get back to that place and then a whole lot harder to get out of it.

Anyway, in the lesson, the teacher related our burdens in life to carrying a backpack full of heavy rocks.  The only way to relieve yourself of that weight is to FORGIVE yourself and others.  So, today, I am going to attempt to take the backpack off.  However, for me, I think it is going to have to be one rock at a time. We have situations in life that hurt us.  It is okay to feel that hurt and believe me, I have felt the hurt.  However, the only way to get over that hurt is to release yourself from it by forgiving whoever may have "wronged" you.

Now, the Lord has not "wronged" me.  At the moment, I have chosen to be angry and bitter with the situation that I've been given. In reality, the Lord is providing me with this amazing spirit (Jett) to teach me a few things about life. These past couple of days, Jett has given me a glimpse of his true spirit.  He has been lucky enough to not be in a lot of pain, which makes me SO incredibly happy.  Jett is going to have a tough life.  I need to accept that and try my best to not get angry with the Lord.  Jett will, one day, have a perfect body and will come running up to me in heaven with a huge smile on his face and a lot of stories to tell!

In a FOG...

So I hope that I can look back at this post someday and be like, "Wow, I've come a long way."  I rarely complain on my blog, but I thought that I would give my husband's ears a rest this time and try to sort through these tough emotions that I have been experiencing lately.

First off, let me give you a short and sweet (or not so sweet) update on our life:

*  We LOVE our new place here in Omaha. We live in a town home development called Village Green.  It is super close to the Omaha Zoo and the Botanical Gardens.  In fact, the gardens surround the entire place...which means there are snakes, but we won't go there in this post. Gross.

The people here are absolutely wonderful.  Most of the families are in the same schooling situation as us.  I can already tell that I will have the best of friends here if Jett and I ever make it out of the house...you might think I'm joking, but I'm serious!

*  Jett was hospitalized last week at Omaha Children's Hospital.  He has been having longer and more frequent seizures to the point where he becomes incoherent and we are unable to break him of them. As it turns out, they supposedly aren't seizures, but rather part of his movement disorder, called Chorea.  Awesome.  Oh, and there's no treatment for infants his size.  Even more awesome.

Jett's room was on the fourth floor and it had an amazing view

The hospital stay was actually quite pleasant as far as hospital stays go.  Jett didn't have to be hooked up to any monitors besides when he was undergoing an EEG and we got a hospital room all to ourselves.  Hey, you gotta celebrate the small things!  One part of the stay that maybe wasn't our favorite was Jett's 80-year-old neurologist whose bedside manner was HORRIBLE.  She was so bad, in fact, that I complained to the hospital staff, and demanded that we get neurologist that I had originally asked for.

Even Jett was mad after the visit from the 80-year-old neurologist...he tried punching his iPad

* Once Jett returned from the hospital, he had a good couple of days.  I feel the need to report these because they occur very far and few between.  Here he is sunbathing, while I painted some baseboards.

This past week has been a trying one to say the least. Thus, the need for this post.  I had to leave the house tonight and seriously debated about whether or not I wanted to come back.  (Of course I came back) Jett has been experiencing extreme amounts of pain every single day.  He gets so uncomfortable to the point where I can't even hold him.  It is so frustrating that we can't do a single thing to comfort him.  As a mom, you are supposed to be able to do that for your child.  I wish more than anything that I could slap a bandaid on everything and kiss it better.  Unfortunately, this is not the case with Jett.  His little body is dependent upon medication, which most of the time, doesn't even end up working.  Our day revolves around how he is feeling and it can be very unpredictable.  This particular picture was taken tonight.  He finally fell asleep after crying and thrashing around non-stop for six hours.  Can you say exhausted??  

We are unable to travel in the car without someone else there.  The ONE time I did this, Jett ended up thrashing around so bad in his car seat that he cut his finger.  When I finally got to him, there was blood all over him.  My dream one day would be to be able to take him in the car to simply go grocery shopping or to a park.  Each day, we are lucky if we get out to go on a walk.  Luckily, we live close to some amazing people.  I don't have to go far to be able to talk with friends, which is SUCH a blessing.  They probably don't even know how important that is to me!!

Lately, I have been in a fog.  It's a fog where you feel like you can't breathe or think.  My life now revolves around Jett and his needs.  I can no longer focus on my previous goals and ambitions.  I know what you are all thinking right now..."Of course you can, Tennille!"  Well, I'm here to tell you that I am a pretty motivated and ambitious person and it is absolutely impossible right now to even think about showering, let alone anything else.  Now I know what you are thinking again, "Oh all moms are like this."  Yes, that may be true to an extent.  However, after administering about ten doses of medication a day, changing feeding bags, venting Jett's stomach numerous times, transferring stomach acid from one port to another, suctioning out his nose and throat, making a gazillion phone calls to

doctors....I.AM.TIRED.

This sweet little man of mine is different.  His poor body isn't compatible with normal things in life that we all take for granted like being able to eat or being able to sit up.  I love him with all of my heart, but this week I think I really have come to the realization of his future.  It is hard to think that I won't be able to ride bikes with him or watch him run through the sprinklers.  To put it simply, it breaks my heart.  

Someone gave me some wise advice today.  They said that sometimes you have to mourn the person that they will never be before you can find peace and joy in the person that they are.

So I think that I am in mourning a little bit.  I yearn for Jett to be able to smile back at me or just sit on my lap comfortably while we look at books.  Instead, he fights to be out of pain all day long.  I have heard (from other PCH moms) that the first year is the hardest with a child battling this condition.  They say that after the first year, things start to look up and a lot of the pain goes away on its own.  I certainly hope this is the case.  I truly hope that Jett can find a tiny bit of peace and joy while he is here on this earth. I would be the happiest mom in the world!!

Angels Among Us

I'm not quite sure how to put into words how GRATEFUL I am at this moment. Both Cody and I have been overwhelmed with the love and support that we have received from our family, friends, celebrities (ha ha…had to add that one), and perfect strangers. Today, my sister-in-law put it perfectly. She said that when people ask her how Cody and I are doing, she usually responds with, "They are being carried through this right now."

 I hope all of you know, as I sit here with tears rolling down my cheeks, how much I appreciate and love every one of you. You TRULY are carrying us and are angels here on earth. In a few years, I think I'm going to look back at this time and wonder, how DID we make it through? I think in times of crisis, you just DO. You can't really think about it. Does that make any sense?

 During this time, we have had the opportunity to meet some very compassionate people. There are good people in this world! What is really interesting is that a lot of these individuals have experienced some tough things in life as well. They KNOW the feelings that we have and the trials that we face. I only hope to one day be as compassionate to someone else as they have been toward us.

 I wish I could send out a thank you note and maybe some Omaha steaks (mmmm….) to everyone who has ever left a comment on my Facebook or blog, made us dinner, ordered a t-shirt, sent us money, come over to visit, said a prayer on our behalf, or even just thought about us.  We have been so blessed during this time. Even though you may not think it, you are all angels and have come to us when we have needed it most.

 

Jett wanted to say THANK YOU too!

(This pic was taken before his appearance on Glenn Beck)

Even though we are in Nebraska...

Jett will always be an AGGIE!!

Utah State, hey, Aggies all the way…go Aggies, go Aggies, hey hey hey!

We have been cheering all day long.  Thanks to Hadley Mae (one of Jett's girlfriends) for sending us this cute outfit.  She wanted to make sure that Jett stays loyal to Utah State…and he will, don't you worry!

Jett was cheering so much that he slobbered all over his outfit…cheering is HARD work. 

Breakthrough

We have had a couple breakthroughs this past week at the Boseman household!  First off, we have had NO trips to the ER this week...and yes, I'm now knocking on wood.  Jett has had an amazing week.  He is now over his cold.  HALLELUJAH!

Side note: I am now going to be that annoying mom that makes you put sanitizer on when you come near us.  No, just kidding...but seriously.

Back to Jett's amazing week.  I know this sounds dumb to most people, but I was able to take Jett on an outing in his stroller, and I was SO excited about it.  My friend, Kayli, and I ventured down to the Omaha Botanical Gardens the other day.  The gardens are literally down the street from where we live and so we were able to walk there.  We should have taken pictures, but I think the heat and humidity got the best of us!  Jett was a gem the entire time.  I couldn't believe it.  We came back to the house and celebrated by popping some popcorn...haha!  I think I will find ANY excuse to pop some popcorn. I'm a little obsessed with my Mother's Day present.

Anyway, to make some longer stories short, I really have come to enjoy taking care of Jett everyday.  He seems to be out of pain most of the time now.  For that, I am SO grateful.  Other mom's will understand.  It is so difficult to see your child suffer.  Jett's "good" days are usually far and few between.  I feel so blessed that he has been happy these past few days.

Now on to some more breakthroughs!  Jett loves his new iPad app called Baby Bright.  It is a visual stimulation "game" for infants.  As I have mentioned before, we (along with the doctors) don't know how well Jett can see.  However, we know that he can see light really well and we also know that he can see black/white really well.  It is fun to see Jett's eyes actually engage in these pictures...and he might even like it! Wahoo!

At this stage in life, Jett should be reaching for toys, pushing himself up, and eating rice cereal.  Unfortunately, Jett will never be able to do these things.  However, Cody and I don't really dwell on that. We CAN'T dwell on that.  Here is what we DO dwell on:

1)  We have come to LOVE Jett with the utmost unconditional love.
2)  He does things that amaze us each day...they aren't things that typical parents would be proud of, but dang it, we're proud!!
3) His spirit is felt by EVERYONE that has the chance to meet him.
4)  He knows who WE are...he may never be able to say our names, but he doesn't need to.  His smiles and coos tell us everything that we need to know!

Headed to church! Yes, we actually have been to church TWO weeks in a row.

A lot of people have asked me, "Don't you just cry every single day?"  The answer to that is NO, I don't.  I'm not offended in any way by people asking me this.  From the outside looking in, I could see that our situation might make someone want to cry.  Sometimes I have my meltdowns, but in all honestly, I feel privileged to be taking care of such a sweet baby boy.  Yes, I get tired and yes, I get frustrated like any parent, but I don't cry about our situation anymore.  Things are becoming more routine for me and I am beginning to live my life again!  When we first got news of Jett's diagnosis, my world came crashing down.  I had never really pictured what my family would look or be like, but I was totally thrown a curve ball with this one!  How would I cope?  How would people treat us? All of these questions entered my mind and it was really difficult to deal with at first, but now I feel like a changed person.  I feel like each day is getting better and better.  Jett has taught me how to be strong.  He is such a stud and I'm so grateful that he's mine!

*This picture seriously melts my heart...it was taken after one of Jett's seizures.  

Two Emergency Room Visits in Two Days

We told the hospital personnel at the Omaha Children's Hospital to go ahead and reserve us a permanent spot in their emergency room.  They laughed at us thinking we were making jokes (which we are known to do), but this time we were kind of serious.  Jett and I had only been in Omaha for three days when we had our first scare.

Visit #1  

 

Jett has been recovering from a bad cold and ear infection.  He has been on antibiotics, but when we got to Omaha, it just seemed like something wasn't quite right.  His breathing became labored and he was gagging/choking more than usual.  I woke Cody up at 5:45 a.m. on Memorial Day because I had been up with Jett for three hours and just couldn't get him comfortable.  I could tell that he wanted to sleep so badly, but for some reason, had trouble doing so.  Cody came in Jett's bedroom and we did everything we could to help him.  We suctioned his nose and throat out, we vented his feeding tube, we held him and kissed him.  NOTHING.  That is when the wheezing started.  We usually don't take Jett to the hospital if we can help it.  Our house has become a mini hospital...all of the equipment could probably use its own living space.  Seriously.  However, when the wheezing started we knew that even our oxygen tank would probably prove worthless at this point.  

A breathing treatment, chest x-ray, and blood work were performed.  As we waited for results,  Jett was put on oxygen because his saturation levels were dipping too low.  The doc came back and informed us that Jett's x-ray showed some pulmonary edema...aka fluid in his lung.  AWESOME.  All I kept thinking is that Jett CANNOT get pneumonia.  If a PCH child gets pneumonia, it can be fatal.  We were told that we were going to have to be admitted to the hospital.

Cute little dinosaur breathing mask

Jett must have heard the docs talking about keeping him overnight.  He started to breathe better...he obviously didn't want to stay at the hospital!  The doctor said that the fluid in his lung was minimal and would probably be absorbed.  (I had no idea fluid could be absorbed into the lung...hmmm)

Anyway, we were sent home to enjoy the rest of our Memorial Day.  Jett celebrated by taking a four hour nap.  We celebrated by getting stuff done while Jett took a four hour nap.

Oh, and we now have an additional piece of equipment.  A nebulizer.  We can now do our own breathing treatments on Jett.

Visit #2

Fast forward to the day after Memorial Day.  Jett was having a pretty good day and just chilling on his little pad when all of a sudden, he let out the most painful shriek I have ever heard.  He got more rigid than usual and was shaking because he was in so much pain.  I immediately vented his tube because I could tell this was stomach pain that we were dealing with.  That didn't help.  Cody picked Jett up and took him for a walk.  That ALWAYS helps...well this time it didn't.  Cody returned and Jett was still in extreme amounts of pain.  I pulled out some tylenol and put it in a syringe.  Right as I opened Jett's port on his feeding tube, BLOOD comes spilling out.  Cody and I (obviously) freaked out.  We ran outside to get into our car.  It was gone.  That was when I remember that my parents had just barely left to run some errands.  AWESOME.  

My new neighbor is amazing.  I ran up to her door and frantically asked if I could borrow her car.  She quickly got the keys for me and we were off to the emergency room again.  Luckily we knew where we were going this time.  

We got to the ER and they all remembered us from the day before.  They began running tests and x-rays on Jett.  Four hours later, they determined that it was an ulcer that had caused the bleeding.  AND...we didn't have to stay at the hospital.  I thought, for sure, we would be staying overnight.  We now have some antacid medicine to help Jett when his tummy gets sore, but unfortunately the tummy pain will never really go away.  A lot of other kids with feeding tubes experience this similar pain.  Poor kiddos!

Nothing like two visits to the hospital to get your adrenaline going!  The last few days have been peaceful and quiet.  Just how we like it!!

SMILES

These pictures right here make all of our stress, fear, anxiety, worry, and sadness about Jett melt away. 

To put things into perspective, the pictures below were taken AT HOME after our first emergency room visit and before the next visit the following day.  We are so happy to have moments like this...I was tickling Jett's face with my hair as Cody played the guitar in the background.  Best ten minutes ever!!