Not the Best Day

So today was not the best day.  Not the worst by any means, but definitely not the best.

Beckett's flushes are not actually going through him.  Instead, they are sitting in him, and I can only assume that all of that fluid is being absorbed and causing many leaked diapers--if you catch my drift.

His button does not feel good.

He won't drink his Miralax or eat his Ex-lax.  This only compounds our situation.  So the home health nurse had to place an NG tube in him to get liquids and medicine in him. As soon as he saw it, he started to cry and thrash around.  He told her "no" and "special button."  His way of letting us know that he now has this fancy button and doesn't need the tubie in his nose.

So tonight, my almost 3-year-old shuffled around the house like a full term expectant mother, looked up at his daddy, pointed to his distended belly and said, "I hurt."

Break.My.Heart.

He did have fun moments today. He loves our new puppy, Turbo, and he enjoyed making silly faces at his cousin on Facetime.  He played legos with his brother.  He had speech today which he loves! So it isn't all sad.  But over the last couple days, the feeling bad is definitely creeping in and starting to take over.

Finding the right flush and timing is something that can take time and patience.  And we were aware of that going in.  And making a toddler take lots of medicine can always be a challenge.  We mainly stay optimistic. We are thankful for how well he is doing.  But I think it is probably okay to have a day where you feel a little overwhelmed by it and just wish you could take it all away.

And then at the end of that day, I pull a verse out of my jar (Thank you, Amy!) and read:

I have set the Lord always before me. Because he is at my right hand, I will not be shaken.

Psalm 16:8

But as for me, I will always have hope; I will praise you more and more.

Psalm 71:14

 

 

Praising our God for giving us hope through his Son. Praising our God whose grace is sufficient in my weakness.  Praising our God who can make all things new again.

 

Asking God for healing. Asking God for renewed energy and patience. Asking God for the right mixture for Beckett. Asking God for understanding and peace for Brant.

 

Thanking God for reminding me of his truths and for reminding me of the bigger picture.

 

 



Surgery Week in Pictures

I would call this "Wordless Wednesday", but we all know that would be next to impossible for me! I almost always have something to say! :) But this will be "Few Words Wednesday"...

 

Standing in front of the Ronald McDonald House the morning of his surgery-- A place where BIG things happen.

An early morning and a little boy who knew exactly where he was.

Almost done now? Sweet boy did not know what coming. We try as much as possible to explain what we can explain to a two year old...but there is only so much that he can understand.

Oso makes a very nice pillow--even in Recovery.

This is on Thursday- 4 days post surgery- trying to stand.

He only wanted to be in bed.

We went exploring, and Beckett loved the trains! They have quite the display!

He was able to stand and play some on Saturday!

We got out of there late on Sunday evening!

Thank you all so much for your prayers and encouragement throughout the week- and since.  We are very thankful. I am amazed when I look at the progression of the pictures throughout the week.  It took him about another week after coming home to get completely back in the swing of things, but he is doing great! Beckett has been doing well ever since, and we know what a wonderful blessing that is.  We had another appointment in Dallas on Monday with the ostomy nurse, and we got his "special button" all cleaned up.  He is so tough!  The nurses are always impressed! Soon, I will post a more detailed update on how the last week and half since we arrived home has gone.

Thank you for praying and for your love towards our family.

Day 4- Slow and Steady

A friend of mine's daughter had a major bowel surgery on Monday (the same day as Beckert's surgery), and her blog entry for today was titled Slow and Steady.  It can be the perfect way to describe these kiddos, and we are thankful for the "steady" part of it.  But things are definitely moving s-l-o-w.

Recovery around here is going just a bit slower than anticipated.  He is standing, but not without crying and breaking into a sweat.  It upsets him very much and is quite stressful.  He walked a few steps a couple of times today, and we celebrated that with him despite all the tears it took to get there. He did drink a few ounces of juice today so that was super exciting.  He is talking more and becoming much more playful again.

Our biggest trouble is that his stools are not moving through him very well (which is not really a surprise as surgery can slow most people down and he is very susceptible to that). As I mentioned in my last post, he had an enema last night that did create some results.  However, based on the exam this morning and the look of the x-ray yesterday, the doctors (surgeon and GIs) decided to transfer him to the GI floor and to their direct care.  The surgeon was pleased with the incision (2 or 3 inches long vertical below his belly button) and the way things were healing up, and GI really seemed to want him upstairs so they could deal with him more directly and closely. So we are now back to our usual floor in the hospital.

He had two more glycerine enemas with no results this afternoon, and we are now doing a go-lytely clean out. The go lytely is running on a pump at a slow rate directly into his new button.  He is having cramping and pain.  He was asleep when he woke up crying and uncomfortable a little while ago. I was able to calm him and get him back to sleep, but I have a feeling this is going to be a very long and hard night for him.

I cannot say that we are exactly surprised that this is taking more intervention (the go-lytely clean out) and time than we had expected.  But we were really hoping it would be an easier process for the tough little guy.

We know for certain that nothing surprises Beckett's Heavenly Father. Our God who never sleeps or slumbers (Psalm 121:1-4) is also never caught by surprise.

You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O LORD. You hem me in--behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.
Psalm 139:2-6

We can have comfort knowing that when hospital stay are more than we bargained for, or even when Mondays are just too long, that the God of the universe knows us completely and has his mighty hand upon us.  Thank you Lord for being familiar with all our ways, our comings and our goings, our good days and our slow days.

We are praising God for how steady Beckett is.  The big picture here is that he is doing very very well and we have a lot to be thankful for...he had no major side effect from anesthesia, he has no infections, he is able to breathe well and think clearly and be a stubborn 2 year old. The big picture is that a little extra time for some additional clean out and IV fluids is not at all horrible. And quite a blessing that that is all that is keeping us here.

But please join us in praying that his little digestive tract would wake up and get moving. We are actually literally praying for poop! Yes, I said it. :)   And please pray for his comfort- that he will soon be able to stand and walk without complete upset and stress to his whole body.  Thank you for all your love this week.  We are thankful!

Day 3

Today was Day 3 at Children's post surgery.

It has been a long couple of days, but Beckett the brave is really a trooper.  He has started smiling and talking today- definitely headed back to his playful little self. He has stolen the hearts of many nurses during his stay here. He is trying so hard. We are very proud of him.

He has been able to start eating and has had some puréed foods and cereals.  He was struggling with vomiting but is doing better at keeping it down now.  He is refusing to drink anything including his all important Elecare.

Yesterday, he had two flushes through his new ACE (picture a tube coming out of his belly button that goes inside to his colon. Thi tube us used to push a solution through to wash his colon out from the top down). Then, we gave him one this morning.  None of these flushes produced anything. An x ray of his colon showed that it was dilated and very full of stool.  So, GI ordered a very high volume rectal enema (even stronger than what we used at home), and this was successful in getting out some of the blockages.  They are considering running Go-lytely (think colonoscopy clean out) directly through the ACE to try to get him all cleaned out and "re-set the clock." Then once he is re-set, hopefully, the ACE will work well. We have been told that it can really take a month to get his just the right flush solution and timing for success.  We expect the first couple weeks to be bumpy. Success cannot be measured for quite a while.

Beckett is really struggling with standing and will not stand or walk independently.  It is very upsetting to him.  Please pray that he will be able to move around more tomorrow.  Getting up and moving around will help the healing process.  This and drinking are two important things that we need to happen.

Thank you for all of your love and support and encouragement.  We are so blessed to have such wonderful prayer partners.  Thank you.

Surgery Day

Thanks everyone for all the prayers for our sweet Beckett today. He is such an amazing and tough little guy. We are so thankful for him and all the wonderful things he can do. He is absolutely precious.

This morning started off with a happy Beckett who didn't want to leave "old McDonald's special house." It is such a cute and happy place for kids.  He really enjoyed his short stay there and when we were packing up his stuff to come to the hospital, he cried, "no, come back here!" It was sweet, and it was hard because we knew how disappointed he would be with where we were going.

When we first arrived at 8:00 this morning, he had his blood drawn.  He was hopeful that the blood work was it and that we were headed out of there. He said, "ok go bye bye now." He got his prize and thought he was headed home, but instead we headed up to surgery.

Once up on the surgery floor, they got us into a pre-op room very quickly.  This began our long wait in the holding room while we were all NPO. (One simply cannot eat in front of a 2 year old who can have nothing to eat or drink. Does not work.) Becketts surgery got bumped by one. When looking at the bigger picture, we are truly grateful that Beckett's condition was such that it could be bumped.  That really is a blessing and a good thing. When they started talking about "we'll get going..." Beckett perked up and said in his happy little voice, "all done?" And it kind of broke my heart because I knew what was coming and that it would be very painful for him. And there is just no way to prepare or explain all of that to a two year old.  But in a way, I guess he was right, we have been waiting for this surgery, and now it is done.

Beckett was in the OR from about 1:15 to about 3:15.  The surgeon was ale to go ahead with the ACE procedure.  The difference between the ACE and a cecostomy is simply placement.  ACE Malone uses the appendix as a tube and it then comes out through the belly button.  A valve is created to
prevent leaking.  The cecostomy button goes directly into the cecum (part of the colon). This is more
likely to leak. Now, typically an ACE Malone is very discreet bc it just uses an opening in te belly
button that no one can actually really notice.  Older children/teens prefer this because there is no plastic button or anything different looking on their stomachs.  For Beckett, they wanted him to still have the button due to his age and ability to tolerate me sticking a catheter in his belly button daily (probably not great). So they put the plastic button on his belly button. I will post pictures on my blog later when I am back home at my computer.  I will make an album on FB tomorrow.

We got to see him in recovery at about 3:45. He had a hard time in recovery.  The anesthesiologist said that he did great in the OR, but when she brought him out, he got flushed and sweaty and his heart rate went up quickly. He was red and covered in sweat by the time we saw him. It was very
stressful for his little body.

He is in a whole lot of pain and it is hard to watch.  He is on morphine and tylenol and motrin, along with a couple of IV antibiotics to prevent infection.  he has had a couple of sips of juice, but is mainly relying on IV fluids now.  I keep telling him that this will be okay. He is absolutely one of the toughest people I know, and I am so proud that he is my little boy.

Thanks again for all your prayers and support.  We are so very thankful! Thank you! Please continue praying for Beckett. Please pray for his recovery and his pain.  Tomorrow, we will try to flush a little something through and see how it goes.  We need to try to get him to sit up tomorrow.  I pray that he can feel more comfortable soon.  Thanks for joining us in prayer today. Our little guy is doing great. Our big God is bigger than all of this and all of the struggles we have seen in various families at the hospital today. And I am so thankful for that.

"I lift my eyes up to the mountains-- where does my help come from? My help comes from The Lord, the Maker of heaven and earth.  He will not let your foot slip-- He who watches over you will not slumber; indeed, he who watches over Isreal will neither slumber nor sleep." Psalm 121:1-4

Thankful to serve a God who never sleep...who has no need to sleep. Who loves us more than we could ever understand and who has an ultimate plan for our lives.  Thankful that He who created the moon and the stars is taking care of my sweet boy.  Even on the hard days.

Why Not a Feeding Tube?

Happy Friday Everyone! I hope y'all all had a good 4th of July!

I have gotten asked several times why the doctors are not going ahead with the G tube and how I feel about it. So I thought I would take a moment to elaborate more on that.

Why not a feeding tube now?

I believe one reason is that Beckett is an oral eater.  And while he can be particular, he has proven that he can eat enough calories to be nutritionally complete.  At a recent evaluation by a dietician, he was found to be getting 130% of his caloric needs.  And these needs were done based on a child with Cystic Fibrosis. People with CF need more calories than most, so it is a different scale.  And on their scale, he gets 130% of nutritional needs, so I imagine it is even more than that on a typical chart. So they do not see a need from a nutritional standpoint at this point. Especially when you consider the recent geneticist evaluation of short stature/skeletal dysplasia and that no increase in calories is going to make him grow. So putting more formula through a feeding tube will likely not change his growth. They took the geneticist very seriously this time. I guess after a year and a half of her saying that he must have some form of skeletal dysplasia, GI has decided she is correct.  Thus there is not a strong nutritional need for it at this time. He does still have hydration issues that we will continue to work on orally.

They were also considering the tube for "venting." Basically, this means that we would be able to open the button at his stomach, and vent the air out. Because he struggles with such severe distention, they thought a g tube would be helpful in "burping" for him. However, they have since decided that they want to see if the distention in his upper GI tract improves once we get rid of this sort of distal
obstruction.  Thus meaning, when we get the cecostomy or ACE and are able to flush him out, they hope keeping the bottom end cleared will help the top end not back up. Hoping that this cecostomy helps the whole system function better so he doesn't need a G tube.

Finally, Beckett has a very sensitive system.  The surgery on his colon is going to be hard on him, and they worry there is a possibility of the surgery slowing him down even more.  It is going to be hard to have a hole in his abdomen. So, this blow to his system would be increased by adding another hole at the same time.  The risk of throwing his system off this much  is not worth it at this point when they do not feel strongly that he needs it.  In addition, if there is a problem post surgery, and things slow down or mess up, there will be no trouble shooting-- wondering which is causing the upset? The procedure of placing a g tube is simple enough that we can have it done later with
a simple one night stay at the hospital if it becomes necessary.  Doing it slowly might benefit him, and it might help us know that the cecostomy alone is enough to help his whole system function better.

How do I feel about it?

I do feel peaceful about the decision. Now, in all honesty, if I am stuck trying to stick an NG tube back up his nose in a month due to dehydration, I will be frustrated. But I do understand why they want to try the cecostomy alone first. And i do understand the geneticists input against needing extra nutritional support. We have several very good doctors working with our son. So I feel good about it. And we will continue us to trust God.

Thank you for your prayers and encouragement.  We are so thankful!!

Here is a link to his YouTube video if you haven't seen it-
http://m.youtube.com/#/watch?v=9zWvqs0ZzGU&desktop_uri=%2Fwatch%3Fv%3D9zWvqs0ZzGU

Countdown to Surgery

I cannot believe it is almost here. Beckett will have his surgery Monday morning in Dallas.  During Beckett's enema on Saturday (which is really quite the ordeal and set up), I realized that we were now counting down the days of rectal enemas.  He will still receive enemas, but after his surgery, it will go through his cecostomy and not his bottom.  This will make things much easier on him...if it works! There is an 80% success rate for cecostomies in general.  Please pray that it works for Beckett. It is not going to be an easy surgery, and I pray that it helps him and works for him!

After many different opinions, it has been decided to only do the cecostomy for Beckett.  They will not be adding on the G tube at the time.  A G tube procedure is a fairly minor surgery, and they feel like if it is needed later, than we will just do it later.  However, they do not think it is 100% necessary at this time.  The cecostomy or ACE procedure is the bigger surgery and the one that they are certain of.  When they get into the operating room, they will determine if they can use his appendix to make a tunnel.  There is a chance his appendix will not be usable in which case they have a different plan (not sure what it is- but I believe they can use the small intestine).  Then they will route the tunnel to his colon at the cecum.  This button to tunnel/tube to colon access will allow us to do his enemas from the top down.

There are several reasons the doctors have different opinions on the feeding tube (and always have). But the biggest argument about a feeding tube for Beckett has always been based on the question-- is his size due to nutrition/absorption problems or is his size due to something else that will not be changed regardless of nutrition. The geneticist, who we just so again recently, still feels certain that his size is not a nutritional issue.  She believes that he has some form of skeletal dysplasia (short stature, dwarfism) that simply does not show up in the genetic testing (not the first time we have heard this).  She thinks whatever it is that "he has" is affecting his skeleton thus meaning no amount of nutrition is going to change that. Instead, she actually believes we should stop pushing the high calorie foods, etc.  Dr. L thinks that when you consider his height measurement compared to his head measurement there is no other explanation other than skeletal dysplasia. He also has some other markers/characteristics that are considered.  I will try to touch on this more later, as I know there are several questions regarding this. We did just find out this week that Beckett's information is being passed on to research that will work to discover answers for many undiagnosed kids.

Today, by 1:00 pm, I have had 10 "unknown" (meaning a hospital) calls on my phone. For some reason, all the phone calls and coordinating is hard.  So I am going to keep this short for now.  Oh, they just called again.

Anyways, I will be updating more over the next few days and after his surgery on Monday.

I cannot thank you enough for the generous outpouring of love we have experienced over the last month.  Thank you so much for your prayers, encouraging words, and gifts.  It has helped us so much, and we feel much relief. I really don't have words to express our gratitude.  Thank you.

AHHHH! I got a big boy haircut!!

Now, more serious...

I caught him mid-word: "cheese!"

Summer Fun!

"uh-oh! my load was too heavy!"

Off to swimming lessons!

happy boy!