We just wanted to post to our blog a special thanks to a few people. 

A very special thanks to Jeff & Jancee Wright and Joe & Marjean Anderson (Jancee's parents).  All traveled many miles to the hospital on Thursday night, July 12th to give Daniel a special blessing. As you all know we definitely believe in the power of prayer and hope. You are amazing friends!

Big thank you to Nevada Health Centers and the Wendover Community Clinic for doing everything possible to let Justin have the time to be with us during Daniel's hospitalization.

Thank you to James and Kim Morris for taking care of our parrots and our home. We are so grateful that you take such great care of them!  Sunshine and Greenbean love you very much!

A HUGE thank you to all of people of West Wendover who responded to our 911 call (Wendover Rescue, the West Wendover Fire Department, West Wendover Police Department, Wendover Community Clinic Staff and countless others).  Everyone responded so fast!  Thank you to Lori, Jeremy and James for helping me to pack a bag and for moving everything in my garage to get my mini-van out.  You are all so wonderful!

Daniel continues to heal and is doing well.  He is still spending a lot of time on his bi-pap but he seems stronger.  We know that it will take time for him to get back to where he was but we feel that he is improving far faster at home than at the hospital.  He smiles bright everyday and seems so happy to be at home with Mommy and Daddy.  

We will update again soon!

Hugs,

Connie and Justin

Daniel is finally home!  He seems so very happy to be here.  He is able to stay longer periods off of his bi-pap.  He still uses it when he is napping and sleeping at night.  Daniel has slept through every night since arriving home!  I still get up during the night to rotate him from side to side.

 

Justin and I have spent the last two days changing around rooms.  We moved Daniel and his equipment to the former guest room area.  It is much larger and accommodates all of the new equipment.  We now have a treatment table which is more functional than using the diaper changing table.  We also moved our bedroom television to his room so that he can watch his Baby Einstein dvds.

 

Daniel’s 1^st birthday is fast approaching.  We were planning a big birthday party (fundraiser) here in our local community but his hospitalization put us so far behind.  We are still going to try to have a celebration for him but it will be lower key than originally planned.  We are asking that everyone send Daniel a birthday card.  He loves when we read his cards to him and we are going to decorate one of his new walls with them.  SMA kids usually have a birthday each month since their lifetime is usually so short.  After his diagnosis, we decided that we would really celebrate his 1^st birthday as big as possible.  We want it to be a special day for him!

 

Daniel Sacripante

P.O. Box 3773

West Wendover, NV 89883

 

We will be trying to develop fundraising events over the next couple of weeks.  If anyone has any great ideas please let us know.  We have had to spend money from Daniel’s Hope Fund for several things over the last couple of weeks….including gear for our mini-van so that we can use all of his medical equipment if needed.  We purchased an inverter and a back-up electrical system and had them installed.  We will be able to use his equipment for trips to the hospital and for doctor visits.  We can also use the inverter if the electricity goes out at home.  We just wanted to be as prepared as possible for ANY event or crisis.  We will be trying to raise money to put into his fund for future treatments and to cover other medical expenses.

 

Will never be able to fully express all of the “Thanks” to everyone who gave us care, love and support over the last four weeks.  Please read our special “Thanks” page!

 

Please keep checking back for updates!

 

Much Love to All!

 

Connie

Please go to the "Upcoming Events" page to help participate in this special event on Daniel's 1st Birthday on August 4th!

Daniels health continues to improve each day. He is now doing 4 hour trials off biPAP and doing well. He is almost all smiles again and is beginning to get his voice back (he says DaDa). Mommy plays a game with him asking where is mommy? (he looks at mommy), where is Grandma? (looks at Granny Anne), where is Julie? (He looks at is new best friend; nurse Julie). He is very smart!

It is expected that Daniel will probably be discharged home on Saturday. He has a whole new armory of medical equipment to help prevent him from getting ill in his chest again and to help him if he does catch another cold. One special piece of equipment is called an Encourage Vest System. It looks like a scuba diving vest and it works to shake him gently and move secretions from his chest. Daniel loves this device and falls asleep with it on (see "Daniel's Pics" section to see him in his vest). He also has emergency oxygen and thanks to Advanced R.V. Supply has a newly installed power inverter in his van to plug his biPap and emergency supplies in. We also have a back up Marine battery should this power source fail on the long trip to Salt Lake (thanks to the St. Onge family for this suggestion).  We will continue to update this blog as well as all of the other pages shortly.

We thank everyone for their comments on the guest book...We thank the hospital staff...We thank the kind strangers we've met along the way...We thank god each day for Daniel. Hope is a wonderful thing.

*Please Check out the bottom of "Daniel's Pics" page to see recent hospital photos*

-Justin

Daniel is doing wonderfully!  Today he had his first 2 hour trial (or test) off of his bi-pap machine.  He was smiling and very happy.  He will have another 2 hour trial tonight.  Grandma Joyce and Mommy are going to give him a bath and Mommy hopes to hold him.

We are amazed at Daniel's progress.  We were so nervous that we were going to lose him on Friday.  His miracle proves that the power of hope is HUGE and that he is a FIGHTER! 

Dr. Swoboda feels that he will be able to go home soon!  We are all so happy! 

Thanks to everyone for all of the love and support!  We honestly could not have made it through this without it!

More news tomorrow....Please keep the prayers coming!

Much Love,

Connie and Justin

There have been many small miracles today!  Daniel is back on his bi-pap machine and doing well.  We hope that he will continue to do well during the night.  We will update his progress tomorrow. 

Keep the prayers coming....they are working! 

Thank you for all of the love and support! 

Connie and Justin

Daniel’s extubation attempt number two did not go well yesterday. Dr. Swaboda along with a great ICU team and an amazing respiratory therapist did all they could do to make this attempt as successful as possible. We tried to place him on Bipap as soon as the tube was removed but for some reason his upper airway (throat) would not allow enough air to enter his lungs. Dr. Swaboda is perplexed and has not seen this happen in any of her patients (most are extubated without difficulty after their acute illness resolves). She has since contacted many of her colleagues and we are going to give one more good try at extubation on Friday.

 

Daniel continues to be comfortable and is still in the fighting spirit. He smiles, is playful and continues to flirt with all of the nurses.

 

After very careful consideration mom and dad agree that life for Daniel would never be the same if he would have to live on a tracheotomy ventilator system. We decided from the beginning that if Daniel’s quality of life ever became in question that we would choose to make him comfortable for as long as possible rather then extend his time with us. We are not sure what is going to happen on Friday when the tube is removed but we know that Daniel will be okay if things do not go well again.

 

Please continue to never give up hope. Daniel has been a gift to all of us and taught us all very great lessons; he is not done teaching us. His spirit is like no other.

 

Love,

 

Dad.

We want to thank everyone for their prayers and words of encouragement; we look forward to new comments on our guestbook each day.

 

Daniel had some setbacks since the last update. He was extubated but shortly after reintubated due to respiratory failure. It is speculated that he was extubated too early and did not have enough energy reserve to be without the extra respiratory support. Since then his calories have been increased and he has gained some much needed weight. He is getting many more cough assist treatments, ventilator weaning conditioning sessions, and frequent suctioning. Daniel is looking good and doctors are looking at tomorrow (Monday 7/8) for extubation attempt number two. Dr. Swaboda seems confident that Daniel will do well this time as his energy reserves have been increased and he seems to be getting stronger.

 

We need your wishes and prayers now more then ever, keep them coming. Thanks for the kind contributions to Daniel’s fund, we are planning to purchase a power inverter for our Mini-van so that Daniel can have his electronic equipment (bipap, cough assist, suction, and oxygen) in the event we ever have an emergency again or are traveling on long trips to Salt Lake City or Elko (Cost is $300.00). We are also planning on purchasing an adaptive stroller for him that will help support his back, chest, and legs and aid in halting the development of dreaded scoliosis (a curvature of the spine as a result of weight bearing against a spine without muscular support). Please keep the contributions coming every little bit helps tremendously.

Love,

Justin and Connie.

Daniel had is surgery today for his feeding tube. The procedure went well and it was done laparoscopically (done through 6 small holes in the belly). His feeding tube looks like a small port with a cover on it on the outside of his tummy. It can be opened to introduce formula into his stomach. He will still be able to eat and enjoy foods but now we have the added advantage of giving him his yucky tasting medication through the port and help him to gain much needed weight through added nutrition.

Daniel is out of recovery, awake, and doing well. Doctors are slowly continuing to wean him off the vent. If things go well he should be extubated and back on his nasal mask biPAP machine by Friday at the most. Dr. Swaboda thinks he is doing great.

I think the many prayers have been helping.

-Dad

Daniel continues to have improvements each day. He is still is intubated (has a breathing tube) and getting high amounts of calories through is temporary feeding tube. He gained ½ pound since his admission to the hospital and that is great news, as he has not gained any weight since early March.

 

He has been sitting up in his assistive chair and playing with his helium filled balloons. He enjoys pulling on the string so that the balloon strikes his head or anyone else’s head that is nearby. He smiled real wide for the 1^st time since his admission today when he saw his yellow stuffed animal (maybe because is resembles Sunshine our parrot). He is enjoying his Baby Einstein videos and Grandma and Mommy got to hold him today while he slept.

 

He has been passing his respiratory and blood tests with flying colors which means he is nearing extubation soon (removing the breathing tube). We are still waiting to hear when his surgery for his feeding tube will take place.

 

We will continue to keep the website updated.

Keep the prayers coming!

-Justin