Ari has a big sister named Rowan. What she sometimes lacks in attention span is made up 10-fold in personality, performance and style. Today was her dance recital.
This morning for the first time she told me she missed Ari. She explained, "Momma, when you miss someone and they are in the hospital and sick, it makes you sad." I agreed with her. Rowan and Ari are each other's favorite person. Rowan will walk into a room of strangers just to announce that Ari is her younger brother, whether he's with her or not.
Two years ago when Ari was in the NICU for a month, we were forced to figure out how to balance a sick kid in the hospital and a well one at home. This time it's similar but very different: Rowan is two years older, she is more aware, she has a relationship with her brother and she can express herself better. We had hoped that Ari would be off the vent and looking more like himself by the time she really needed to see him. I don't think we will make that benchmark. As a first step in preparing her to see her brother, we are working through a coloring book with her that shows what patients look like in the hospital - sometimes hooked up to machines. Esther gave it to us; she's a dear friend who also happens to be the Child Life Specialist for the PICU. How lucky are we to have access to someone with expertise in how to help a sibling through something like this?!
Ari is not much different today overall. One step forward, one step back. They have been giving him diuretics to pull fluid off him - 2 liters today, in fact. That's good because it reduces fluid around his lungs and heart, but it has dropped his blood pressure, so he is back on the epinephrine which he had been weaned off of yesterday. He's now in restraints and a brilliant sling built by his night nurse, Brittany, to try and limit his movements when he starts to wake up. If you know anyone with Down syndrome, you know they have very big range of motion, so once he starts to move, he can do a lot of damage really fast to any of the tubes or lines going into him. The other problem with the movement is he gets agitated, he gets meds to calm him down, he drops his blood pressure. Same cycle as the last 2 days.
BUT they reduced the vent PEEP from 9 to 8. We're aiming for 6 or 5.
Ari is still spiking a 102 fever periodically. It responds to Tylenol. His blood and urine cultures are still negative so if there is a new infection, they aren't finding it yet.
No big steps backward is good. Hoping for a few more steps forward tomorrow.
Love to all,
Dorothy
This morning for the first time she told me she missed Ari. She explained, "Momma, when you miss someone and they are in the hospital and sick, it makes you sad." I agreed with her. Rowan and Ari are each other's favorite person. Rowan will walk into a room of strangers just to announce that Ari is her younger brother, whether he's with her or not.
Two years ago when Ari was in the NICU for a month, we were forced to figure out how to balance a sick kid in the hospital and a well one at home. This time it's similar but very different: Rowan is two years older, she is more aware, she has a relationship with her brother and she can express herself better. We had hoped that Ari would be off the vent and looking more like himself by the time she really needed to see him. I don't think we will make that benchmark. As a first step in preparing her to see her brother, we are working through a coloring book with her that shows what patients look like in the hospital - sometimes hooked up to machines. Esther gave it to us; she's a dear friend who also happens to be the Child Life Specialist for the PICU. How lucky are we to have access to someone with expertise in how to help a sibling through something like this?!
Ari is not much different today overall. One step forward, one step back. They have been giving him diuretics to pull fluid off him - 2 liters today, in fact. That's good because it reduces fluid around his lungs and heart, but it has dropped his blood pressure, so he is back on the epinephrine which he had been weaned off of yesterday. He's now in restraints and a brilliant sling built by his night nurse, Brittany, to try and limit his movements when he starts to wake up. If you know anyone with Down syndrome, you know they have very big range of motion, so once he starts to move, he can do a lot of damage really fast to any of the tubes or lines going into him. The other problem with the movement is he gets agitated, he gets meds to calm him down, he drops his blood pressure. Same cycle as the last 2 days.
BUT they reduced the vent PEEP from 9 to 8. We're aiming for 6 or 5.
Ari is still spiking a 102 fever periodically. It responds to Tylenol. His blood and urine cultures are still negative so if there is a new infection, they aren't finding it yet.
No big steps backward is good. Hoping for a few more steps forward tomorrow.
Love to all,
Dorothy
You and your family are in our thoughts and prayers. Schuyler
ReplyDeleteI know you must feel like you're walking a tightrope. Praying her first visit with him is okay. I hope they can figure out where that fever is coming from soon and he can start making baby steps forward instead of dancing back and forth. So very glad Esther is there working with ya'll. Such a blessing! Love y'all!
ReplyDeleteThinking about you and praying constantly for healing for Ari and comfort for mom and. Dad. Will also be praying for Rowan. She is such a wonderful big sister.
ReplyDeleteWendy Sheridan
Thinking of you and the family Dorothy. Never doubt and keep the faith
ReplyDeleteLasondra Hunt