No Surrender

We are just a couple days shy from a week post surgery and Brian is doing fantastic! He has felt so good that I am a nervous wreck!

As soon as the anesthesia wore off, Brian was like his usual self. It made me realize that he has been in some kind of pain for so long, that even cutting the skin of his stomach and stitching it felt better than having the tube. I practically beg Brian every day to stay calm and just sit down. The only time this seemed to work was when he was building Lego sets…thank goodness, but otherwise, keeping him calm is an impossible battle.

Waking up and wanting everyone to know he feels good.

The human body is an amazing thing and I cannot believe how quickly the hole where the feeding tube was has closed. In fact, the entire surgical site looks great and with each day that passes, I am hopeful we will avoid infection.

That may be wishful thinking though since Brian will return to school tomorrow. He will not be allowed to play at recess or participate during PE, but at least he will be back with his friends. This will be a challenge, but there is an end in sight. As long as I can keep him somewhat careful over the next two weeks, then on September 10, after the stitches are removed, he can return to life as normal.

I’ve been asked a few times over the last week if Brian having the tube removed means he now can eat all types of food. Sadly, this is not the case. Brian still suffers from Eosinophilic Esophagitis and regular food allergies. Right now there are nine foods that are considered “safe” for Brian to eat. Having the tube removed just means that we have to be extra diligent about his shakes and the amount of food he eats each day. The tube was placed initially because Brian was on a “shake strike.” He refused to drink his shakes, which are made from a high caloric and nutrient based hypoallergenic formula. He was losing weight because the safe foods at the time did not provide enough calories to help his body grow. Thankfully, these days he will drink at least two shakes a day by mouth, so the tube was not being used.

We are on a BIG Harry Potter kick.

Now that the tube and growth have been dealt with, I will focus my attention on the other issues facing my little man.

Brian’s GI doctor put us on a strict regimen of shakes and regular food to see if he would grow. During this period, Brian was taking in over 2,000 calories a day. Plus, this was last school year when we kept the kids at home for school based on doctor recommendations. Brian was taking in more than an average adult should and was not very active, since he did not have PE or recess to burn his energy up. In fact, Brian was stagnant for the most part and based on his activity and diet, he should be as wide as he is tall. Instead, he did not gain a single pound. Also during that time, he did not show any growth in his height, either. We know he was getting enough calories and nutrients, but for some reason he isn’t growing.

GI recommended I meet with endocrinology again. After listing to the history and ordering a battery of tests, the doctor pointed out that Brian’s lymph nodes are swollen. She said that inflammation in the body could decrease Brian’s growth hormone. When the test results came in, the bloodwork looked fine, but the x-ray of Brian’s bones showed that he is about 28 months behind where he should be. Essentially, my almost nine year old has the bones of a six year old.

Now I am lined up with so many different appointments that my head is spinning. First stop will be to the pediatrician to see if he has any insight, and then on to an immunologist. We will meet with the endocrinologist again in a couple months to see if anything was determined, and if not, then she will order more tests. Ultimately they are trying to determine why Brian does not seem to be absorbing what he eats.

This one kept him still for a few hours!

While we struggle to figure out why Brian isn’t growing, we also are in a holding pattern when it comes to trying new foods. Last October, Brian developed a sort of tic after an endoscopy. He would make a continual noise in his throat throughout the day. We saw multiple doctors and none of them had any answers. Tests showed nothing wrong with his throat or esophagus, but GI did find irritation in his stomach lining. First we tried an acid reducer but nothing changed. Next up was a slurry made up of budesonide and Splenda. Brian did a fantastic job drinking it twice a day, but it didn’t stop the tic, and eventually Brian’s throat began to react to the mixture. We stopped the slurry, repeated an upper GI and found that nothing had changed. Finally, when we removed oatmeal that did not specify itself as “gluten free,” the tic stopped, but the irritation in the stomach remained. Brian now takes omeprazole twice a day and we are hopeful that a repeat upper GI will show that the irritation in his stomach is gone. If it isn’t, I’m not sure what the next step will be. Until then, we are not trying any new foods. It is frustrating, but we understand the rationale and are hopeful for answers.

This past week has been exhausting. The first couple nights brought pain in the middle of the night for my sweet boy, but by Friday he was sleeping through the night. Not being able to be with Brian in the days following surgery was hard for me and left me a scattered brain mess at work. I am so grateful to family, neighbors, friends and coworkers who checked in, sent food, or let me vent. I’ve always said we have the best village, and once again you have come through for us.

Get Well card from his classmates.

Thank you for all of the prayers and well wishes. My mom said Brian is just like his Papa…not a victim and never surrenders. His strength amazes me every day. I don’t know many children who could handle the life he leads as well as he does. Hopefully that never changes. In the meantime, thank you for joining us on this journey.

Now I ask for prayers that we make it through these next two weeks without ripping out a stitch!

Surgery Day

Today is surgery day.

Matt and I did the math last night. Today marks Brian’s eighteenth procedure under anesthesia. He has had sixteen endoscopies, one tubal surgery, and now one surgery to remove a mass on his stomach and…the tube.

Woo hoo for surgery day!

We were thrilled to receive final approval that the tube could be removed. Brian told me last night that he is “so excited” and that he is positive that swimming will be “way more funner.” I forgave him that minor grammatical error because his enthusiasm is contagious.

I am excited to not have to worry about the tube anymore or all the things that can go along with it, including complications. Of course, my excitement didn’t keep my stomach from twisting all night as I second guessed myself. I want Brian to be back to running and playing freely, but I also fear for his growth. Every time he rejects one of his safe foods, I question this decision. Every time I ask him for the third time to drink his shake, I wonder if we are doing the right thing.

Only time will tell if all the decisions we have made over the last nine years have been right. I always second guess myself and I always pray to God I am not doing something wrong. I definitely do not have all the answers and I won’t know until the story is written if I have made horrible mistakes along the way.

Superman Brian and his faithful “Friend.” Friend has been there for every procedure.

But today, we are looking to the positive. Today Brian will say goodbye to that horrible growth that has caused him so much pain over the last year. He will say goodbye to the tube that has kept him from swimming in a lake and causes pain if he doesn’t eat as soon as he is hungry. He will say good-bye to almost four years of button covers, ointments, attachments and pumps. So today, Brian is excited.

Watching your child wheeled away NEVER gets easier. This may be number eighteen, but I still feel like it is the first time. Thanks to Covid, I have no choice but to sit in the waiting room by myself while the doctors take care of my baby. Family is waiting for my updates and the most amazing village, my coworkers and friends, filled my cup with love and prayers this morning through tons of texts to help me through. I surprise myself when I don’t break down, and I surprise myself when the tears take over in the middle of a sentence. Brian hugged me tight and told me he was scared before they wheeled him back. I reminded him that he is the strongest and bravest person I know, told him to sleep tight and promised I would be there when he wakes. That is all I can do for now.

Brian has had “Tubie Dog” since the tube first went in almost four years ago.

Brian is my tiny hero. He has the strength to make it through this and so much more. Even though things do not always go his way, he keeps on rolling with the punches. He has spent the past week at home so we could eliminate any chance of him getting sick before surgery. He has tackled his schoolwork, and although frustrated, keeps moving forward. He had to miss soccer practice and a game, and now will miss another two weeks, but he hasn’t complained. I am hopeful this positive attitude continues as we deal with his recovery. At the very least, the Legos are ready to distract him, especially thanks to some friends (Jen, Beth and Ben!) and he has decided he wants to rewatch all of the Marvel movies with daddy.

While daddy and Brian binge watch movies and build Harry Potter and Star Wars structures, I am preparing to relinquish control. When it comes to Brian being sick, recovering, etc., I have been the one to handle everything. This is the first time I am working fulltime during a recovery and Matt is taking the reigns. I know everything will be fine, but man, sometimes it is hard to let go!

As I wait for the nurse to tell me everything is done, I will stay positive and look towards the coming days when Brian feels better. To the day when he is back to ruining every pair of socks he has by sliding across the house and running into everything, chasing Bailey all over the furniture and driving me insane. I look forward to those days, when Brian feels great.

So good-bye to the tube. Good-bye to the bump in Brian’s clothing, attachments, feeding bags, pump and IV pole. Good-bye to button covers all over the house and changing buttons. Hopefully this is the beginning of nothing but positive news coming our way.

I love my Little Man.

Far Too Long

“Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”

― Ferris Bueller

Three years…almost to the day.

That is how long it has been since I have sat down and brought all of you into our lives.

I promise it wasn’t intentional. Before, during and after every scope I promised myself I would post an update. I even scripted them in my mind while sitting in the many waiting rooms. But I never seemed to be able to follow through.

Most of those updates would have run together with the same information – time for a scope! waiting for results! new food is a go!

Today, I come with more information and the realization that I owe all of you a lot more than I have been giving. After all, in the past six years, you have been there, cheering us on, wishing us well, sending prayers and checking in over and over.

So lucky to be his mom.

I apologize upfront if I jump around during this, but it is my goal to share all of our ups and downs.

This December will be four years since Brian had a feeding tube placed. Over this time, we went through periods of constant usage to nothing at all. We have tried repeatedly to come to a place where it can be removed, but every time there are concerns.

The biggest concern – Brian is small. I don’t mean, “Oh, look how cute he is! He will hit a growth spurt soon!” small. He is bottom of the growth chart, low percentile, be careful or he will fall off the chart soon small. Some of you may remember that a few years ago Brian was placed on growth hormones. After almost a year, a new endocrinologist felt it wasn’t necessary and stopped the treatments. Since then we have waited to see what would happen.

Let me jump to the ending here…very little has happened.

I keep my own records at every appointment we go to in my phone. Last week I went back over my records and realized that Brian has shown no change in height or weight in almost nine months. If my weight stayed the same for nine months, I would be overjoyed, but in Brian’s case, there is no cause for joy.

During this time period, Brian spent A LOT of time at home. Due to Covid and recommendations from all of his doctors, we kept both Addi and Brian virtual for the majority of the school year. He wasn’t participating in PE or recess. He spent a lot of time stagnant (hard for an active little boy), because he was hooked up to the feeding pump anywhere from four to six hours each day. His GI doctor hoped this would cause a boost in growth. If a regular person sat around for days and days while consuming well over 2000 calories a day, there would be a noticeable difference.

Brian stayed exactly the same.

Finally, the GI was ready to call “uncle.” He told us it was time to consult with endocrinology again.

Last week we met with a new endocrinologist. She looked over all of Brian’s records and ran off a litany of tests she is going to order. During the physical exam, she commented that Brian’s lymph nodes in his neck are enlarged. She is not the first doctor to point this out to us, but no one over the last four years has seemed that concerned. I explained this to her and she hit me with a doozy…enlarged lymph nodes could mean inflammation in the body, which would cause the growth hormone to not produce properly.

In the words of Brian, “Outrageous!”

I can stay pretty calm and collected, but if I find out that he hasn’t grown because of a problem identified four years ago, I may lose it.

It was decided that she would confer with Brian’s pediatrician on this development, and in the mean time run her battery of tests, including two and a half pages of bloodwork orders. Yesterday, Brian had five and a half vials of blood taken. My mommy brain thinks he is too little for that, but he took it like a champ and now we wait for the results. He also had an x-ray of his wrist done this week, and soon will have an MRI and a Growth Hormone Deficiency Test done.

The results of all these tests will affect whether the feeding tube can be removed.

At this point, I feel like I have appointments coming out of my ears, but we are not done yet!

Pro at waiting…

Around eight months ago, Brian developed a growth on his stomach. Initially, the GI doctor thought it was MRSA and treated it accordingly, while also replacing his feeding tube. The growth is just off of the the hole where his tube is placed, but not close enough for an easy fix.

We met with his GI and pediatrician numerous times since it first appeared, and they tried everything from oral antibiotics to antibiotic topical creams to steroid creams. Everything offered a short term solution. The growth would flatten while the medicine was administered, but as soon as we stopped, it would grow back bigger and sometimes angrier. When very large, it would secrete a fluid and become painful.

After exhausting all options, GI recommended we seek out a dermatologist. The first appointment involved a needle into the growth for a biopsy and injecting medication straight into it. It took the doctor, two nurses and myself to hold Brian still. When we returned for the follow-up, the doctor offered no solutions except that they couldn’t help.

The second dermatologist went a lot better, although Brian may disagree. This time it took a nurse and myself to hold Brian down while the doctor lanced open the growth and drained it. She believes it is a cyst that is surrounded by scar tissue. She drained the fluid, but it didn’t keep it from coming back a week later. On the positive side, the cultures of the fluid revealed normal skin cells, thankfully.

Her recommendation? It is time for a surgeon.

Monday morning I took Brian to meet with a surgeon. Finding one was not an easy task. After a quick evaluation, she agreed that the only solution was to remove it, but there were potential problems, including the feeding tube. It is her hope that Brian’s GI and endocrinologist will agree to remove the feeding tube at the same time she removes the growth. Otherwise, she is afraid that the growth will come back and the next time she removes it, Brian will require radiation to deal with the scar tissue. If GI and endocrinology agree, then the surgeon will be able to remove the growth and close the hole where the feeding tube is. It will mean two sets of stitches, but hopefully only one surgery.

Brian was not thrilled by the news of surgery. He has found a love for soccer and is very good at it. (Dad is nursing his broken heart that baseball is on the back burner.) Surgery means at least two weeks of no soccer, and an even bigger travesty in his eyes, no playing at recess. Anyone who knows Brian will understand how difficult it will be to keep him mellow for at least two weeks. That kid wears me out with all of his energy. He runs EVERYWHERE.

Just scored his second goal!

All I can do right now is prepare Brian for what is coming. We have made it through half of the tests for endocrinology and are awaiting results. Surgery is scheduled for later this month and Brian has picked out the Lego sets he wants to “keep him from running around.” (Yes, I said “sets.” His initial wish list totaled over $700! I think this kid forgets the concept of money…hopefully his third grade teacher can help him understand that this year!) I have left messages with GI to discuss a plan for the feeding tube with endocrinology and now I wait to hear if it can be removed. There are so many uncertainties and items to accomplish, all while preparing the kids and myself for the first day of school. Timing never seems to be my thing. Oh and we cannot try any new foods due to some unexplained inflammation in his stomach…it never ends.

Putting all of this aside, I am so LUCKY to have such amazing kids. There are times Brian becomes defeated and tells me he “hates his life,” but that feeling is always short lived. I still fall apart when I have to hold him down or put him through tests (it never gets easier), but he reminds me that he “loves me most” and I remember that I would do anything for him and Addi. Life with Brian has not become easier for Addi, but she is so amazing and one of our greatest blessings. I don’t know what I did to deserve such great kids, but I am so grateful.

They really do like each other.

I will try my best to not wait so long to post updates, but I make no guarantees. Ferris Bueller knew what he was talking about with life moving fast. The days flow into weeks, into months and before I know it my babies are growing into their own unique selves. This year Addi will start seventh grade and Brian will be in third grade (pictures to come soon!). I love their personalities and the people they are becoming, but I would be lying if I didn’t admit to how much I miss my tiny babies.

As always, I am so grateful to the prayers, check ins, well wishes and love. We are blessed to have so many people in our lives who care about us. Thank you for sticking with us on this journey, and until next time, here is a smile to brighten your day.

He thinks he is ready to drive…