Wednesday, April 25, 2018

Surgery is Postponed

Life ... I tell ya ! 

Surgery has been postponed for two weeks.

Joseph came down with a cold on Sunday and things were fine until last night when his symptoms worsened. His fever was 102.6 and this morning his cough was deeper. The G.I. and ENT left it up to the anesthesiologist and they had two different anesthesiologists come to evaluate and both agreed not to do proceed with surgery. The risks for Joseph (or anyone not feeling well) are too high. They also said that he has increased risks due to his laryngomalacia as a baby as well as his current airway/swallow issues. His fever was 101 at the hospital and his heart rate was elevated. They said the procedure could be life-threatening for Joey and asked us if we were comfortable going home and coming back in two weeks ... to which we obviously agreed. This wasn’t a hard choice, just a frustrating one. We are trusting in God and this process. 

The doctors are top-notch, trustworthy and compassionate. Each of them have established a great relationship with Joseph, Mark and I. We are thankful for that!!
We are also VERY thankful for the outpouring of love, prayers and compassion for our family.  We are surrounded in love and prayer, we can feel it and it makes such a difference. Please continue to lift Joseph up in prayer so we can overcome this hurdle and find him the help he needs. 
So.... on to the next plan which will launch in two weeks, God willing.

Thank you, from the bottom of our hearts for walking this journey with us.

Monday, April 23, 2018

Gastroparesis Takes Us To Ohio

I’ve tried to write this many times. I’ve written and deleted. Waited for the words to come to my mind, they aren’t coming so bare with me.

Our life. Our life is beautiful. Our life is chaos. Our life is blessed. Our life is loud and vibrant. Our life is hectic and wild. Our life is warm. Our life is fearful yet full of faith. Our son has health issues. We have yet to find the answers.  We’ve spent five weeks now with a gtube. He has almost gained a beautiful pound. We connect him every night before bed and disconnect him five hours later. We untangle him countless times in-between that. We tell him “it’s ok”, “no ouchies, just milk through Tubie”. He tries but has a very hard time. He lays right beside me, I check him, all night long seeing if he’s okay. He tosses and turns. He’s still incredibly uncomfortable and his emptying rate is severely delayed. People ask me all the time “how’s Joseph?” ...
I’ve yet to find a response. 
He’s great.
He’s smart.
He’s handsome and beautiful.
His smile is our fuel.
He speaks in sentences.
He’s wild and adventurous.
He shares.
He’s curious.
He’s full of love and cuddles.
He loves adventures and machinery.
He loves dinosaurs.
He flirts and can be shy.
He’s silly and a comedian.
He’s athletic.
He’s kind.
He’s brilliant.
He doesn’t feel well.
He knows no different.
He’s resilient but this lifestyle of doctor after doctor is taking its toll.
He doesn’t eat much.
He’s uncomfortable.
He cries out in the night “mommy ow” “mommy help me please.”
We don’t have the answers. Still.

This week... Joseph’s been accepted to the motility clinic at Cincinnati Children’s Hospital. It took five months for his application to be processed and to get a plan in place. Now, we are here. Today it all began. Tomorrow we continue with clinic and Wednesday he has surgery. Ent will scope him, take biopsies and place ear tubes. GI will scope him, take biopsies, dilated his pylorus and inject his first round of Botox. The motility specialist will do Antroduodenal manometry testing. He will be confined to his bed for 36-48 hours without any medication. He will have a scope and camera in his nose down to his stomach the entire time monitoring his motility. 
We will be there every step of the way, navigating, advocating, praying and hoping for an answer so he can flourish without pain. So he can be nourished and grow.... without pain. 
I tell myself many times a day “with God you shall not worry, it’s useless.” Yet, I’m worried. And I am with God in mind and spirit. I trust in him. But I’m scared. I’m scared for my sweet, strong, happy little man. I don’t want this for him. I would take it all and more if I could. I am astounded by his resilience and nature. I love him, with every cell in my body and every ounce of my heart. He is my heart. So please, pray with us once again. Pray for health, healing and answers. A new plan, a successful one. Joseph is the sweetest, kindest, most badass warrior I know. We will overcome this. 

Thank you for all those that have prayed, sent love and positive thoughts. Thank you for all the wonderful acts of kindness for our family. We feel the love and support and we appreciate it beyond measure. Stay with us, pray with us.

Thank you.

Saturday, March 17, 2018

He Needs to Grow: g-tube placement hospitalization

Update one:
Joseph has been admitted to Golisanos Children’s Hospital. We are here for the foreseeable future. Our family could use positive thoughts and prayers for our sweet warrior boy. He’s battled infection after infection and his feeding issues have gotten much worse. He won’t eat much at all or drink the proper amount of formula/breastmilk each day. He’s lost more weight and has stopped growing. He’s being evaluated by the team here and will be getting a feeding tube. While this is incredibly challenging, sad, difficult and painful... we are hopeful this will help our boy. We are thankful the interventions are available and are trusting in the process. Joseph is a beam of light, strong and resilient. He’s smiling through it and winning the hearts of the medical team here but we don’t want him to endure more then he already has. He is enjoying his new friends here and the wonderful play room but he is weary and increasingly fearful of what’s coming next. We ask for Prayers for direction and a successful plan mapped out by his medical team, prayers for us navigating this and prayers for his brave and loving big sister who’s life will be very different for the time-being. We took Mia on a special lunch today to try and help her understand what’s happening and her huge heart ❤️ understood and she’s in the great care of Nana and Papa Sacheli. Mark also took Joey to his favorite place, the firehouse before we came here and they had a wonderful time. 
We can do this, we will do this. We have no other choice. We’ve fallen apart a few times today and over the past few days knowing this was a possibility, but it’s time to be strong now. We are surrounded by love, incredible support and blessed to have the avenues we do. Please pray with us. 
We will keep updating everyone. Thank you.

Update 2 for our buddy bear. Joseph is hanging in there and making the most out of being in the hospital. We have great doctors and nurses who are making the stay as comfortable as possible. He is on new medications and trialing a new formula 🀞🏼. Last night was a little rough as his stomach is struggling to tolerate the changes but we are taking things slowly & a step at a time. The plan now is to count calories through the weekend, watch how he reacts to the new trials and map out our plan on Monday when we meet the surgical team for his g-tube placement. We miss our Mia so much. She is in great hands w/ Nana and Papa Sacheli and went to the penny carnival with them and saw many friends there today! Tonight she made a special trip to the hospital lobby and we brought Joey down, they were elated to see each other! They ran around wearing handmade knit hats for newborns haha!! Mia is having a special night with daddy while joey and I stay at the hospital. It’s very hard being split up like this but it makes us realize how lucky we are to have each other and just hope this is over ASAP. Tomorrow Nana Jan flys in and we are looking forward to seeing her and having her close (although I feel badly that she is coming from the beautiful beach back to this winter tundra)! Thank you to everyone who’s reached out and supported us with love and prayers. This is tough, but you all make it a little bit easier. 

Update three:
Wanted to send our recent update on Joseph warrior man. Tomorrow is our surgery day, it will happen in the morning either first thing at 8am or second up around lunch time. They will be placing a g-tube which goes into his stomach and has a connector and about 6” of tube that comes out and will connect to his pump. After a month, they will remove the exterior tube and replace with a button that’s a little more convenient for active toddlers and is just a small “plug”/button on his belly that we will connect the tube to for feeds. After recovery, he can continue life like any other boy except some bathing restrictions prior to the button placement and no swimming in lakes until the tube is removed and healed. He will be in the hospital for 4-6 days after the procedure to determine the rate of flow and ounces his stomach can take in and empty (as well as to train us on use). We will get help from all the doctors and therapists involved after his tube until it is removed. Removal is fairly easy and can be done in office typically. They said if he improves on OT feeding therapy and we can take the stress off of hoping he will eat... hopefully he will want to eat and improve, then he could have this removed in as early as a year. πŸ™πŸΌπŸ€žπŸΌ He’s complex and this will involve some trial and error but that’s what we’ve been doing this whole time anyway so we just hope and pray this is the right thing for him and at least will help with the nutritional piece of the puzzle. Onward we go. 

3/13/18 4th update:
Just a quick update to let everyone know the #gtube surgery was successful. We are back in our room and Joseph is needing lots of love and cuddles while he recovers and accepts his new addition, it will take time. We are thankful the procedure went so well and the doctors were amazing. Prayers we can find a good feeding rhythm that his body tolerates and prayers for his sweet, innocent heart that he can learn to understand and accept this. Thank you everyone for the prayers and thoughts today!!! We appreciate it so incredibly much πŸ™πŸΌπŸ’•πŸŒ»πŸ’ͺ🏼

3.17.18 fifth update:
Happy St Patrick’s Day ☘️. After overcoming some pretty challenging issues yesterday and the night before, we think we have turned a corner. While we have learned that his #gastroparesis Is severe, we have adjusted what medications he’s on and are praying they will help without causing possible side effects πŸ˜πŸ™πŸΌπŸ™πŸΌπŸ™πŸΌπŸ™πŸΌ. The team here had a volume/24 hr goal that they wanted Joseph to reach (320ml), it was very clear that Joseph’s body couldn’t handle that as he got very sick after only 120ml over 3 hrs, he couldn’t keep it down, his stomach was distended and he needed his belly vented 😞. After all of that, we stopped feeds for the day and started at 1/3 of that late at night and he did great. We have a trial and error road ahead of us but are extremely thankful to be this far down the path already. Joseph is a sweet, loving, silly, personable, strong little warrior πŸ’ͺ🏼and I am sad for all he had to endure but I’m also extremely proud of him! There is talk that we may get to go home today πŸ™πŸΌπŸ€žπŸΌ. We will follow up closely with the PANS clinic (pediatric advanced nutrition support), he will continue to get in-home therapy and we will help him every step of the way. With a full heart filled with hope, I thank you all for being part of this journey with us, giving us encouragement and saying prayers. We are so very blessed.

Update 6
Day 10.

We’re going home!  

Sunday, January 28, 2018

Owning Our Story with Pediatric Gastroparesis

I don’t share much anymore to the “public” about medical issues for Joseph. 
One- because  I feel exceptionally blessed to have the children that I do and I don’t ever want to seem like I am complaining or searching for pity. 
Two- because I don’t want Joseph to be defined by the things that hold him back because he is so much more than that. I don’t want people to look at him and only remember what they saw on social media about him being sick. 
And three- because its hard to keep up with. Once you release the information then you need to update and make sure that everyone knows the most recent events going on. And also because it’s the deepest most raw piece art of your heart&soul and that’s hard to share. 

About a year ago it became very overwhelming to me and I stopped sharing many of our battles behind the scenes. But the truth is, there is so much more than what is seen on social media. In order to be real sometimes we have to share the things that hurt us as well as those happy, wonderful moments that we often see. And most importantly, in order for Joseph to have the love and prayers he needs, then we need to ask for them and share his story.

It’s time I own our story. This is our life. This is our reality. This is OUR beautiful, crazy, hard, rewarding, challenging, blessed life. 

My last post about Joseph was when we had to stop breastfeeding because he was reacting to my breastmilk despite many elimination diets, he was “failure to gain weight”. Much has happened since then. He tried and failed 14 different formulas over the course or several months. Thankfully I continued to pump milk a few times a day and was planning on donating it. However, a few months into all the formula trials... we knew the formula was causing more issues and he needed breastmilk again. So we went back to pumping and feeding. I had to strictly limit my diet again, I pumped around the clock for several months every two hours (day and night), I power-pumped once a day and worked with a lactation consultant to get my supply back. He is over 20 months old now and we are still going. I can’t make much but I do my best and we thankfully have a formula that he can tolerate in small amounts. 

Joseph has been “failure to gain weight” for a year now. He has a hard time holding onto the weight he will gain. He gains, looses, gains and plateaus. We tried to believe he was small or this was being blown out of proportion but the reality is, he won’t eat. He still only takes 3-4 oz/bottle and only takes 2-4 bottles a day.  He barely takes any table food at all.

Since the end of August 2017 he’s seen GI, rheumatology, pulmonology, infectious disease, allergy/immunology, behavior therapy, ENT, nutritionist, occupational therapy, had an endoscopy with intubation, two different swallow studies, two stomach emptying scans in two different ways, countless blood draws, an EKG, and Echo, multiple chest X-rays, ear infections, pneumonia twice, “reactive airway disease” (misdiagnosed), upper respiratory issues, chronic fevers everyday of at least 100.4 or more and just this week- a ruptured ear drum. A Revolving door of doctors guessing and throwing new labels at him. Telling us “this is beyond my scope”, “we’ve never seen this before” or “this isn’t under my umbrella... why don’t you go to this other doctor or try XYZ”. 
Zero help. Zero. Passing him around like a dodge ball.

On September 7th we received a piece of his puzzle. He was diagnosed with gastroparesis. This means his stomach does not empty as it should. The nerves are not contracting the muscles to empty the food so he stays full, rarely ever hungry and he doesn’t want to eat. We were told this happens sometimes when a baby is sick and he will get better but a later scan revealed he isn’t better. So now we’ve been told that sometimes people don’t outgrow gastroparesis and his stomach muscles are paralyzed. He also has delayed swallow muscles and this could be part of a bigger issue we are investigating. So our problem is we want him to eat more and be nourished but the more he eats, the worse he feels. This is why he couldn’t tolerate most formulas because they were too thick for him to digest. It is very heart breaking. Painful to want your son to eat and grow but by asking him and persuading him to eat, you know he won’t feel well. He associates food with pain. We have tried medication and dietary changes and nothing has helped like we hoped. Our local GI has referred us to a new doctor in Boston and we go on Monday 1/29 to Boston children’s and hope and pray they are Joseph’s saving grace. 

For us, life as a parent of a chronically ill child means figuring out how to make him as comfortable and healthy as possible. It means searching the internet day and night for answers. It means over 20 months of never sleeping longer then an hour and a half and most of the time it’s much shorter than that. It means waking up and praying to God to give you strength to be the best parent that day and not allow the stress or heartache to be noticed. It means forgiving yourself for all the mistakes you’ll make due to being chronically sleep deprived. It means making a variety of healthy foods and different textures for breakfast, begging Joseph to eat it and watching him struggle. It means offering all different kinds of plates/bowls/silverware and techniques to eat with. It means using four different high chairs, training his sister to encourage his eating and cheer when he takes a bite and actually swallows it. It means feeding therapy in our home every week. It means watching him take 2-3 bites 99% of the time and allowing him to be done and wishing it were more. It means doing this all over again for lunch and dinner. It means he is often pale and on some days he is tints pf green because the part of his body he needs to nourish him, isn’t working. It means being paranoid anywhere you go because he has low immunities and you worry about every germ, sneeze or sniffle. It means being stronger then the fear. It means rocking him for hours and hours before bed trying to bring him comfort. It means he is uncomfortable most of the evenings because the food in his stomach is creating pain and discomfort, gas and bloating. It means letting him get out of the rocking chair you just spent an hour or two in because he cannot settle and he would rather play to take his mind off it. It means praying for patience and understanding. It means holding him all night long, every night. It means hearing him cry out “mama hurt” while holding his stomach and there’s nothing we can do about it except hold him. It means waking up to the sweetest kisses as a way to say “thank you, we made it through another night.” It means many friendships go untended to or change so much that they disappear. It means being misunderstood. It means often feeling isolated or alone. It means it’s constant. It’s nonstop. When you take a moment to let a tear fall down your face, it’s time to wipe it because he needs you again. It means you worry and your family worries and you worry about your family worrying. It means you hand that worry to God. You get down on your knees. You hold a strong line of faith that this will all work out. It means his success’ and milestones sometimes look different from other kids his age. It means car rides are very challenging as he feels sick and uncomfortable. It means living off of one income from his hard working, unstoppable, amazing father. It means putting my career dreams on hold- or better yet, reshaping them and the path to get there. It means leaving dirty dishes or laundry behind. It means feeling aggravated because there is little or no time for any chores or alone time most nights. It means his big sister (who’s only 3) doesn’t always get the time she deserves and often puts her needs to the side so that he can be taken care of. It means asking for help, admitting that we cannot do it alone. It also means that the “best” of us is not that great some days. It means that even though you’re overwhelmed, you buy him a puppy because it makes him smile. It means going to every specialist under the sun and still searching for help. It means traveling as far as we need to get the help he deserves. It means thousands of dollars in medical bills and expenses. It means power-housing through so often that you forget to feel or process until one day you realize you’ve become more machine then human and need to take a moment to reconnect. It means being thankful everyday that things aren’t worse and clinging to that thought for survival. It means reminding ourselves that we need to cherish every moment. 
It means fighting. Fighting for health, for happiness, for his life. It means we will never give up. It means we will become experts in his condition and try new and innovative methods for our son. It means breaking all parenting rules we once had. It means being his advocate, his sword, his shield and also his soft place to land. It means we are thankful he is ours and feel blessed we can do this for him.  It means finding your tribe, your team. Finding the diamonds in the rough that will fight for and love your son-People like his pediatrician, feeding therapist and nutritionist-People like our families and closest friends that have stuck through this with us. Those that know it isn’t easy and we can’t necessarily be there for them but and they are here for us, they love us through the storm. It means finding strength in yourself and your spouse you didn’t know you had. It means watching your sweet son laugh, smile and blow kisses at almost everyone he meets. It means over celebrating the good moments and really soaking them in. It means watching him in those rare moments of peaceful sleep and wondering who he would be without all the pain and complications. It means that we will have that answer someday. We won’t stop. Joseph deserves our fight. He is here, he is brilliant, he is resilient, he is strong, brave and he is teaching us the important things in life everyday. 

He is so much more then this. He loves to sing and dance. Loves anything that’s mechanical, is obsessed with trucks and tractors. He smiles and waves at almost everyone we walk past in public. He cuddles and kisses and is such a love. He’s silly and social. He adores his sister and she can make him laugh like no one else. His favorite game is “raaaar” where he chases people with his “raar hands” and we yell and run. He climbs on everything and constantly gets himself into things he shouldn’t, he’s mischievous yet so innocent. His is the most handsome little boy. And although he may be “tiny”, he has the biggest heart of any child I’ve ever met. He truly greets with love and lets it guide all of his interactions. It means we learn from him, his reliance and his strength every damn day.

We live off of our faith in God, our love and determination for Joseph to have the very best, most fulfilling and healthy life. 

We ask for prayers during this next journey because we don’t know what comes next. We ask for guidance from our Lord. We ask for comfort, answers and solutions. 

This is our story. Thank you for reading and allowing me to share it with you. 

Please Pray πŸ™πŸΌ.


Surviving on love- a Poem for FPIES

A poem written from the aching heart of an FPIES Mom:

Surviving on love-

The day had come, you were finally here.
Untainted love. Smiling ear to ear.
We took you home and held you tight.
Keeping you safe both day and night.
Sure you cry but all babies do.
Our immeasurable love is what gets us through.
Sleepless nights filled with songs and nursery rhymes.
We just can't understand why you’re uncomfortable most of the time.
Bouncing, swaying, dancing and helping you play.
Just trying to make it through another day.
Reflux, colic or food allergies?
Here's some medicine to try and put you at ease.
It's time for Mom to try a total elimination diet, also known as T.E.D.
Reduce the foods to eat, in order to be allergy-free.
Still not seeing the results we want to see.
Choose different foods, in fact …pick only five.
Trying to avoid the diagnosis "failure to thrive".
1,000 kisses to help the tears being shed,
For you’re never able to peacefully rest your sweet head.
Trying to get you to tolerate something to be fed.
or maybe even tube-fed.
Researching more articles to be read.
Doing anything to find the light up ahead.
And although I don’t get to count the rolls on your thighs,
I sure do admire the mosaic in your eyes.
Quiet moments between the cries,
This is where our hope lies.
And I hold you more then any other parent I know,
But that's a blessing I suppose.
For you’re only going to continue to grow.
And life isn't known for being slow.
I'll hold you until you don’t need me anymore.
And I’ll love you as infinite as where the land meets the shore.
Through this storm that brings both light and dark,
I think the biggest ache in my heart
Is that you can't always be exactly who you are.
Chained by pain and discomfort,
You're personality gets hidden in the hurt.
There are moments of big smiles and dancing wiggles,
Moments of sweet, innocent giggles.
Moments of milestones and joy,
or when you finally learn to master that new toy.
Moments we admire and watch you play.
Moments that we wish would stay.
“The days are long but the years are short” they say.
These are certainly the longest days of my life,
Yet flashing by with both triumph and strife.
The most beautiful and hardest days of my life.
You’ve been mine since long before your birth.
And for the answers, I’ll search the earth
To make all of this have some worth.
We are strong enough.
We will never give up.
I vow to help you.
Love you, fight for you and get you through.
Hold you and always comfort you too.
There is nothing I won’t do for you.
There is nothing more abundant and true,
Then my sincerest, deepest, most natural love for you.

For Mia and Joseph


Author: Melissa Sacheli