The Bumpy Road

I can remember the beginning of all of this...Beckett's journey.  I remember feeding him at the hospital before we left to go home, and my sweet baby screaming instead of eating.  And I remember the nurses telling me they were still waiting on his first BM...and not to be surprised if he spit up a lot because they were kind of waiting on that to happen.  That he seemed full of air.  But that it was okay...his little system would wake up and it would be okay. 

Then I remember when he was admitted for the first time.  Our world was rocked. We were completely shocked.  We all prayed for God's strength to get through this trial.  Family and friends prayed for Beckett as he overcame this bump in the road.  I think even the doctors believed at this point that we would likely get through this rough start, find the right formula, the right medicine, and be on our way. He would outgrow it. He would turn 6 months and start catching up. Once he started rice cereal, everything would work out. Solids would chunk him up...we heard it all, really.

And then at some point, we realized that this wasn't just a bump in the road.  It was our new route, the bumpy road.  What was once thought to be a trial has become our lifestyle.  This is our normal.  Juggling doctors appointments, sleepless nights, tubes in our child...now normal. But normal cannot be mistaken for easy. I must get to the point where I recognize that this isn't crisis mode...this is normal.

We had been forced off the freeway, where you stop off only for a cold Sonic drink or a tank of gas.   Our road feels slightly less populated, and you definitely can't go as fast.  You can't plan very well because you can see past the next turn in the road and the trees that surround it. There are no big green signs to tell you where to exit or which way to go. There is really no way to know what's coming.  It is far from a straight shot. 

We are forced to move a little slower...we can't plan much in advance because we can't see very far down the road.  But we get to slow down.  Enjoy the ride.  Celebrate the little things.  We get to notice the blessings that are all around us.  Time to look at the Son's position, so we can determine which way we need to turn next. We get to cheer for our family when we make it through another rocky area. We enjoy being together. We are each other's best friends because we are slowly navigating this together.  We get to see God's faithfulness in very tangible ways.

I know that in reality very few people are actually flying through life on the freeway. Many of my fellow believers daily travel on their own bumpy roads...different stories and struggles, but bumpy nevertheless. And it's hard. But I believe God kicks us off the freeway and takes us to a place where we become focused on Him. I know God is leading us down this road drawing us close to him, right where he wants us to be.

"When my heart is overwhelmed, lead me to the Rock that is higher than I" -Psalm 61:2

Please continue to pray for us as we navigate down this unexpected bumpy road. Thank you all for your love and support and encouragement.  It means the world to us. We are blessed. And we know we are not traveling alone.  Thank you.

Love,
Kaylan

Two Minds are Better than One

We made it safely to Houston and back earlier this week! Whew! I am so thankful the husband was able to accompany me this time.  It was a quick and exhausting trip, but it is much better having him with me! We were able to use his memorial day holiday to travel there so he only had to take off one day!

Just as I expected, Dr. C did agree with the cecostomy.  He said there is an 80% chance of success with a cecostomy.  And while there are not actually 100 Beckett's out there, those are pretty good odds.  He was very interested to hear all about what has gone on this past year since we last saw him.  He was in agreement with the cecostomy, but thought he would one up Dr. S and throw in a G-tube.  So Dr. C and Dr. S (GI- Dallas) will discuss adding a G tube as well while he is getting the cecostomy.  Dr. C believes that the G tube would be helpful in venting some of the air/gas out of Beckett's belly to help control the distention.  Also, with Beckett's past records in both feeding and fluid requirements, he thinks it would be good to go ahead and do the G-tube for the days when he does need it.  His thought is that as long as he is on the operating table, and a G-tube is a fairly basic thing, why not go ahead and do it? However, it doesn't really feel that simple to me.  If that is what they decide would be best for Beckett and his health, then of course, we will go with it.  The G-tube is something that we have somehow managed to avoid over the last two years.  But Beckett has been on the verge of a G-tube since he was 4 weeks old...perhaps it is time to just do it. We have worked so hard to avoid it.  But as someone who known Beckett's health since infancy, Dr. C has a good idea of Beckett's body's tendencies. I do trust that he and Dr. S will be able to work together to best meet Beckett's needs.

While we were driving home...and it is a long drive...I was thinking about all of the traveling we have been doing for appointments since January and how hard it can be at times to make the trips.  But then I thought, wow, how blessed are we to have 2 pediatric motility specialists who know our son and are willing to work together to figure out what needs to be done for this very out-of-the-norm case.  That is pretty awesome when you sit back and think about it.  I believe there are 4 or 5 pediatric motility specialists in the state.  Two in Houston, one in Ft. Worth, one in Dallas, and I am not sure about Austin... They are not a really common specialty, while it is growing.  So I am thankful to have two to call.  Two opinions.  That's gotta be a good thing, right?

Monday, it is back to Dallas! Ey yi yi... He needs to have another contrast enema done for the surgeon.  So we will hit the road again. But I know it will all be worth it.  It will be worth it to get some relief for the sweet child.  Please continue to pray that all the right decisions are made regarding the surgery.  Please pray for wisdom, patience, and endurance.  And of course, for safety in all our travels.  Thanks so much for checking on our little B!

Beckett enjoyed a bowl of Watermelon Sorbet for a special treat last week.  It was his first time to eat a bowl of a cold treat, and he enjoyed it!  We will definitely go back for more!
 

A Second Opinion- Again

Our appointments in Dallas earlier this week went fairly well.  I say that but I no longer really know what appointments going well really means. Like, I always pray that the appointment will be a good one- but I actually have no picture in my head of what a good one would be. Or what I am expecting to happen that would categorize the appointment as "good" as opposed to "bad." But nevertheless, I continue to hope for good appointments.

On Monday morning, we saw his GI motility specialist, and on Tuesday, we saw the surgeon.  The GI doctor decided that yes, we are really at the point where we cannot keep going without surgical intervention.  We have hit a wall with the laxatives, and I do not intend to do enemas on my 2 year old son long term. The child has maxed out on 8 squares of ex-lax and 3 capfuls of Miralax a day.  It hurts him too much. We have tried Milk of Magnesia, Mineral Oil, and adjusting his diet.  And really, none of it is working well at this point.  So she does feel like it is time to intervene.  However, he has severe distention (gas) in both his stomach and his colon.  This does raise a couple of questions.  So, before we do surgery, she wants us to go back to Houston to see his old GI motility specialist there. She wants a second opinion, which I honestly feel is the mark of a good doctor.  She has sent all of his latest records back to Dr. C, and we will see him on Tuesday.  Yes, that makes 2 trips to Houston and 2 trips to Dallas all within a month! Whew!

Our current GI doctor, Dr. S, did want us to go ahead and see the surgeon who would preform the surgery if Dr. C seconds her opinion (which I honestly would be shocked if he does not agree--it seems that these motility specialists run in a pretty tight circle, attending the same conferences, and sharing similar treatment options).  The surgery that we are looking into is the cecostomy.  This will provide us with another route to administer the enemas.  This will not cure him or take away the constipation, but it will give us an easier way to wash out his colon.  I believe it will help with quality of life.  This problem does not seem to be going away any time soon, so we want to do something to make it easier to manage.  We will let you know how the appointment goes.

I really liked the surgeon that we met with.  He does all the colon oriented surgeries at Children's, and he was very helpful in answering our questions.  He is going to go ahead and schedule the surgery, even before actually getting the second opinion, in expectation that Dr. C will agree with the procedure. Check back next week for an update on all of this.

In other news, Beckett once again got over-heated today. We were outside in the late afternoon for about 30 minutes when he started panting, fussing, and getting very lethargic.  When I took him inside, I took his temperature, and sure enough, it was 103.6. His temperature spikes so quickly.  His body does not seem to have the typical ability to regulate temperature.  Yes, most people would be hot after being in the Texas sun, but I don't believe most would spike a fever like his.  This is the second time in the last two weeks this has happened. It is not surprising that he would struggle with regulating his temperature, as we have seen signs of this in the past and it does go along with some of his other troubles, but it is a little overwhelming.  Here we are, living in (the great state of) TEXAS, where you break a sweat just walking out to the car.  (Ya'll know it's true) And our child is near passing out and it is not even June.  Feeling a little overwhelmed.  We are looking into getting some kind of cooling vest for him.  We will also need to do a lot of indoor activities throughout the summer. 

Thanks for all of your kind words and encouragement after the last blog post. I really appreciate it.  Thanks for praying.

A long update

Sporting some fabulous crocs--the boy loves "monsters"

I know it has been a while since I updated. We have been busy busy around here with lots of traveling for appointments and the end of the school year excitement.  I have been traveling with Beckett every 10 days on average...sometimes as few as 4 days and sometimes about 2-3 weeks apart...but averaged at about every 10 days.  We have a 2 hour drive to Dallas each time, a 3 hour drive to Southlake, and a 4 hour drive to Houston.  So lots of car time.  And honestly, it has been so bumpy lately, that it has been hard to figure out how to update-- what to include in the updates and what isn't necessary to include.  I think I have to do some backtracking. This won't be written very well this time because it is a lot of information to communicate.

About a month ago now, Beckett spent 4 days in the hospital for some testing on his GI tract.  He had an endoscopy, colonoscopy, and colonic manometry. (Click here to read about that hospital stay) 

The purpose of the scopes was to see what his system looked like inside.  The doctor was looking for inflammation, swelling, different types of food intolerances, etc.  These tests were necessary because he has such terrible distention in both his stomach and colon. He also has blood and such in places you shouldn't.  Unfortunately, the scopes did not give us any further answers as to what is causing these problems.  This doesn't actually mean that there is nothing wrong, because the horrible symptoms are still there.  It really just means that we do not know what is causing the tough symptoms. 

The purpose of the colonic manometry was to determine if something called a cecostomy button would be a good option for him.  A colonic manometry is a test that basically sees how the colon responds to pressure and if it moves like it should.  If his manometry was normal, this would indicate that a cecostomy button would work for him.  A cecostomy button is a small button placed at the cecum (a part of the colon) that we would use to flush enemas through his colon.  They use the appendix and part of the intestine to create a "tube" in which to access the colon. This would basically just re-route an enema so you do not have to go from the bottom up.  His manometry was normal, indicating that the cecostomy button could be beneficial for him. 

During all of this, we were communicating with the doctors that we have worked with in Cincinnati. We thought that if we were going to do a surgery, we would prefer to do it there. We kept them updated on the testing and imaging and everything like that.  Our doctor there actually scheduled to do a Malone procedure.  This procedure uses the appendix and some intestine to create a tube in which to administer enemas (just like the cecostomy button), but instead of using a button on the outside of the body, they go through the belly button. In addition to this procedure, they were possibly going to remove some of his colon. We were scheduled to be there for about a month.

The idea of the logistics of all of this was a bit overwhelming. It would be much more difficult to travel for the surgery--a bigger stress on leaving Brant, finances, and Kyle having to balance work with traveling to Cincinnati.  We were in prayer that God would give us clarity on whether or not it was necessary to travel to Cincinnati for the procedure--a procedure that technically can be done at any of the hospitals in Texas.  It was a constant prayer...you know, the ones that are on the front of your mind all the time as you go through your day.  Constantly asking for clarity on this decision.  Well, within a few days, Cincinnati looked through more of his imaging and decided that their program would likely not help him.  They actually cancelled the surgery.  And while at first, this felt discouraging, we soon looked at it as a very clear answer to prayer.  God said no. And we truly believe that He was answering our prayer and making it an easy decision for us.  Perhaps it will be better for all members of our family to stay local or perhaps we need to find another hospital to travel to.  But Cincinnati is not the place for Beckett at this time.  However, I will not say that we will never be back there, because no one knows what the future holds.  But for now, it is not where we need to be.

Last week, I took Beckett to Houston for a genetic appointment at Texas Children's.  We have chosen to keep his geneticist and his pulmonologist (Cystic Fibrosis specialist) at Texas Children's for the time being.  On our way down there, we had a bit of a scare with Beckett.  It was roughly an hour after his morning enema, and he started trembling and grunting/panting.  I thought that perhaps he felt as though he needed to go to the bathroom.  However, this lasted quite a while, and then his head kept falling forward. He wasn't responding to me very well. Just staring.  Brant was with me as well, and he was trying to keep Beckett awake but was not having success. It was one of the most helpless feelings I have had as a parent. I immediately got his nurse on the phone, and over the phone we were able to check his responsiveness and stimulability, etc. We decided that he was stable.  It was determined that I should keep going and try to get to Houston, but I needed to stop and check his temp every thirty minutes.

After I got off the phone (I was pulled off of the road in the middle of no where for all of this), I just held him in my arms. His body was weak and he just layed over me. And I just prayed.  Brant was sitting there with me. And we just prayed for this sweet little boy. In that moment, several thoughts were whirling through my mind.  One thing I always think of when it comes to Brant is that I don't want to scare him or worry him. I know that he is watching me and my reactions. But at the same time this was our current reality. So I tried to keep it together, and lift little Beckett up in prayer. I looked back at my 5 year old (who is wiser than his years and has had to learn more than most 5 year old boys), and he had stopped what he was doing on the ipad, and had his little head bowed.  My prayer for Brant is that all of the ups and downs of this does not cause him anxiety but teaches him unconditional love.  I ask that as he sees things many children do not, will you please keep Brant in your prayers too?  This will not leave him unaffected, and my prayer is that it does not negatively affect him, but instead teaches him about faith in our Lord.

Very proud of his gardening!

So proud of this boy!

So now for the amazing part of the day, within 2 hours, Beckett had snapped out of it.  His fever went from 104 to 97.9.  He was still quite pale with very dark circles under his eyes, but he was talking and wanting to eat. We took him to a doctor who could find nothing wrong with him.  Unfortunately, the thought is that his giant, high volume enema caused his body to go into a sort of shock.  Not good considering that his body is dependent on them. The senna (ex-lax) burns his skin and the enemas are very hard on his little body. We are working towards a solution for this.

So after our adventuresome trip to Houston, we had a fairly uneventful appt with the geneticist.  I will do a separate post about that soon.  They are very confident that he must have something genetic-in-nature going on.

On Monday morning, I will leave early in the morning to take him to a GI appt in Southlake and then Tuesday morning we will see a surgeon to discuss the possibility of a cecostomy button.  Please be in prayer for us during these appointments--for safety in our travels and wisdom in the doctors and endurance for us. Please pray that we will know what the next steps need to be.  Honestly, something really has to get better for him. 

Oh, I forgot to mention that we have pulled out the NG tube. The GI doctor does not think that it was benefiting him.  So he is happy to have no more tubie taped on his face. However, now that he is not getting these fluids over night, that could be what is causing the problems with his enemas.  We will see what the doctor says next week.

And he is super proud of his new monster jammies!

Thanks for following this very long post! I know I threw a lot of info at you, but I wanted to try to update you the best I could. I wish I could say that I hadn't posted in so long because all was going so well. But in reality, I felt to tired and frustrated to put words to it.  Thank you for your continued prayers for our family as we try to figure all of this out.

Our Week in Pictures

Our week in pictures...more words will follow later after I get a little more sleep!

 I can't explain how much I miss this guy when we are away.  I think it must be one of the most torn feelings in the world--to have one child at home and one child in a hospital hours away. It is very hard and challenging. We went out for a little mommy/son date before Beckett and I left.

 

 On Tuesday, it was nothing but liquids and popsicles.  Then once they started the go-lytley clean out, he could have nothing by mouth until Friday at lunch time.

 

 It took an extra 24 hours and 3 gallons of golytley and 2 enemas to get his colon cleaned out...and a few doses of Zofran for nausea.  His belly was miserably huge and hard. On Wednesday, he actually weighed 4.4 lbs more than he did just the day before on Tuesday.  That is about a 20% weight increase over night.

 Finally, sleep. But he was woken up every hour for either an enema or an IV or an x-ray or something...It was a long night. He is so tough.  Can you imagine being woken up to get an enema? or poked by the IV team?  I really am amazed at his ability to persevere and acclimate.

 Getting out of bed for a bit.

 

 He loved watches all the cars go bye.  He was very excited to see them as we couldn't see any cars from our room this time. It was hard to get him to leave this little spot.

 

Playroom Fun

 

 

 Worn out from the middle of the night enemas and clean out

 

 Waking up in recovery after his colonoscopy, endoscopy, and placement of the probe in his colon.  From this point on he had to stay flat in a bed for the next 30 hours.

 

 The hospital gave him this big stuffed Yo Gabba Gabba friend.  He calls him "Boca Boca."

 

 He slept most of the day on Wednesday.  He could stay awake for about 20 minutes at most before he would fall back asleep.  He ended up running a fever, but it did drop quickly.

 

 He woke up and realized how miserable he was...

so he went back to sleep.

 

 Sleeping in a big boy bed for the first time ever!

 

 Precious, resilient, tough.

 

Stickers Anyone? :)

 

 Friday evening---Going HOME! He said, "so cited mama. so cited!" (So excited)

Precious boy. His song for the week:

 

Whom Shall I Fear by Chris Tomlin

 

 ...Whom shall I fear

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side

The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

 

Always

Sometimes, I sit here in shock when I realize what my days so often consist of now.  I--quite naively--thought I would never be thinking about these things. Deciding how to handle the possibility of a one month hospital stay. Moving things that belong in a bathroom (like towels) to the side to make room for the growing collection of medical supplies. Scheduling life around appointments, medicine, enemas, feedings...And I know the fight could be much harder, much scarier...there are mamas everywhere who have become nurses to their children. And I don't doubt for a second that at some point each one of them steps back and says to themselves, "wow...how did we get here?"

Warning-- this part isn't for the weak of stomach...you might want to skip ahead. But it is our reality, so I thought it would be okay to include. This week we are dealing with a severe rash and blistering on B's skin.  This child's bowel movement literally burnt his skin everywhere it touched.  It wasn't immediate, but over the course of the day, more and more blisters came up.  The pediatrician was truly impressed...not your everyday diaper rash. Everyone's comment was, "wow if this is what the outside looks like, can you imagine what the inside might look like?" The doctor believes his stool was just so acidic that it burnt him. The cloth diapers help keep it from getting to the point that it has in the past because we are not putting the chemicals of disposable diapers up against his injured skin.

You see, the problem is that he has decided he is no longer interested in his ex-lax squares, also known as "Choca." So we replaced the ex-lax squares with liquid senna (the same active ingredient). However, there is something in this liquid that his little body cannot tolerate and it burns his skin.  So the big conundrum is~  What do you do when you cannot tolerate the very medicine that you are medically dependent upon?  We have some ideas and things to try. And we hope every day that he will decide just to eat his choca.  Please be praying that we can get this figured out.

I want to share the lyrics from a song with you. It is called Always by Kristian Stanfill:

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always

So thankful that my help comes from the Lord- the maker of heaven and earth.  The one who made the moon and the stars cares more about my children than I could ever imagine.  He loves us dearly and provides for us no matter what the battle, and He is here to fight for us.  So we needn't live in fear of the fight, of the storm.  We have HIM.

Thank you for your prayers for our family as we have several big things coming up.  Please pray that his testing on his colon in April will be helpful.  We also ask for prayer in trying to learn what would be best for Beckett in regard to the inpatient hospital stay at Our Children's House.  We are blessed by our praying friends.  Thank you for your patience, love, and grace that you extend to our family.  We are thankful.

 

 

A Lot To Think About

Beckett had two appointments in Dallas this last week....one on Monday and one on Friday because of course I cannot seem to get them on consecutive days!

On Monday, we saw the GI doctor. She is overall not as impressed with the feeding tube as she would like to be. She does not think the extra hydration going through the tube is quite enough to help the little guy. So, she has ordered scopes and a colonic manometry to be done.  He will be admitted to Children's for 3 days for this testing.  The endoscopy and colonoscopy will allow her to see inflammation, etc on the inside, and she will also be able to take biopsies to check for certain food intolerances and other conditions. During the colonoscopy, the doctor will place a colon catheter for the manometry.  The manometry will show us how his colon moves and can help us see if there is a certain part of his colon that doesn't move.  For the monometry, he will have to lay in his hospital bed for 6 hours.  He is not under general anesthesia for this, so this should be interesting.

If his monometry is normal, the doctor thinks something called a cecostomy would be a good possibility for him.  A cecostomy would be a little button placed at his cecum so that we could access his colon that way to flush him out.  Basically, it is a way to give him an enema from the top down rather than from the bottom up and back down. 

We are waiting on the hospital to call to schedule the inpatient testing.  We will then go from there depending on what the scopes and manometry show.

On Friday, we went to a feeding evaluation at Our Children's House at Baylor in Dallas--referred by the GI.  He was assessed by a speech language pathologist, occupational therapist, behavioral psychologist, and nutritionist.  They are recommending that Beckett be admitted to Our Children's House for a month in order to get on a feeding plan that his body can tolerate. This came as quite a surprise to me, but they think the intensive individual treatment with medical oversight will benefit him greatly. They want to watch his in's and out's and how his body reacts to the food with a goal of finding high calorie foods that his digestive system can handle.  They will also use some behavior modification strategies to change the way meal times work.  I cannot exactly picture what it would be like to spend a month in a hospital. But I do know that poeple figure it out all the time. 

As you can imagine, this is all a lot to take in and think about it.  Just a day at a time right now, and we will see what happens.  It is hard not to be anxious- but I know we will be okay.  Thank you for praying as we try to figure out what needs to happen next and the best way to handle it for our family.