Saturday, March 17, 2018

He Needs to Grow: g-tube placement hospitalization

3/8/18 
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.


3/10/18
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. 

3/12/18
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.

3.17.18
Update 6
Day 10.

We’re going home!  















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