Grant Baby Haven the Care Deserved: Petition California Children Services For Additional Home Health Skilled Nursing Support

As most of you know, Haven was born 100 days early and weighed less than one pound. He has had 14 life threatening surgeries and more procedures than we can count. After spending eight months in the NICU, Haven was able to join his family at home.

Even though he was able to go home, he still needed medical care. Medical care that home skilled health nurses had to help with. Now, the state is reducing his skilled home nursing care to nothing. While it may seem like he is a thriving toddler at first glance, he isn't. The care from those skilled nurses help keeps Haven strong and healthy. They help make sure he gets all the medications he requires on time and safely. They keep a continuity of care and keep him out of the hospital.

See, Haven was sent home with two palliative care diagnosis which require multiple medications to help keep him alive. If any of the medications are missed or accidently switched, then it could be life threatening for Haven. He also wakes several times during the night, screaming out in pain and fear, sometimes choking and not breathing — waking Mamma up. Often times these mucous plugs are an emergency that even a suction machine won’t resolve. It took multiple hands to call 911, to turn on the oxygen machine, to get the pulse ox monitor, to pull out the mucous plug. It’s a team effort of skills to get our baby breathing. It’s scary. You even forget to breathe.

After she calms him and rocks him back to sleep each time. These frequent wake ups leave them both feeling tired throughout the day. Tiredness, which leads to exhaustion. It doesn’t stop there.  Days are filled with constant doctor appointments, physical therapy, occupational therapy, speech, and early intervention. The skilled nurses provide extra layer of support and prevent Haven from pulling his tubes during these sessions. They also act as an extra layer of support specially during the doctor appointments which Haven has a higher degree of anxiety around due to all of his medical procedures in his past. The nurses do a great job helping calm him down during those amplified, anxious moments.  

There is a lot that has to be done everyday to care for Haven. Medications have to be measured and given, feed bags have to be changed and hooked back up, sponge baths given because he can't have a bath like a normal toddler due to the safety lines from his GJ tube extensions, helmet cleaned very thouroughly every day to keep it safe for him to wear, diapers have to be changed immediately due to sensitivity of his skin and logged for kidney function. And if you have ever changed the diaper of a toddler, you know how challanging it can be. Now add in the tubes from the pump and the GJ-tubes, the Oxygen tubes at night and in the morning as needed, it takes a bit to accomplish and it can be exhausting if you are already sleep deprived. All of this is why Mandi needs skilled nursing for Haven for more than eight hours a day.

Mandi, Haven’s Mamma, is a NATO Medal of Honor recipient and disabled Army war veteran that served in OIF and OEF and deployed to Afghanistan. She knows far too well how to work hard and succeed in a mission.

Mandi often compares her son’s fight for his life to like fighting a war, “When you take away key personnel from any fight mistakes start to happen and the mission degrades. I don’t want my son to to lose any part of his care or development. I fought hard for my country to protect our freedoms and our families, now I’m asking for you to please to protect my child.”

Will you please sign this petition so we can get the amount of time with the skill nurses that we really need?

Haven and Mandi thank you for your prayers, support and help. 🙏🏻💓👼

Feel free to write to:

Director of Medicine
720 Empey Way
San Jose, CA 95128

Client Name: Haven Smith
DOB: 1-1-2019
Case # 12072540
County: Santa Clara

Let's get our voices heard so we can help Haven get the care he needs and deserves.