Fortune Rota Volvitur
[ed. note: the title is Latin for The Wheel of Fortune Turns]As I’ve posted previously, life in the NICU is a roller coaster ride.
We are no closer now to knowing what is wrong with my boy than we were nine days ago when I carried Doss out of the operating room and into the NICU.
These past nine days have been the longest of my life. It feels like nine months.
Every other day, a promise of future good news is sullied by current realities.
On more than one occasion we have heard that Doss will be coming off the ventilator soon, only to be told the next day that something was worse than thought (platelet levels, glucose levels, liver enzymes, brain bleeds, seizures, and so on, ad nauseum).
According to the NICU doctors and nurses, one day he’s fine and will be going home soon and the next day he’s gravely ill.
Today was the last straw.
Yesterday, the NICU staff said they were reducing the amount of Ativan because Doss was doing so well and his seizures appeared to be under control.
With the reduction in Ativan, they could take him off the ventilator and send him home soon.
With Doss in the NICU, I am at the hospital from 6-7am before heading off to work. P.Pie & Jorja follows up at 11, then we all go around 6 or 7 in the evening.
When I was there this morning, everything was roses.
By the time P.Pie arrived, they were saying that Doss’s brain was essentially seizing non-stop. At least, that’s what the EEG that was done two days previous was showing.
Two days previous? And it’s only now being read? We need to be in a place that can read EEGs immediately.
So we loaded up the truck and moved to Beverly. Actually it wasn’t a truck, it was an ambulance. Which I must say was a little disappointing. When they said Life Flight was doing the transport, I made certain assumptions about the mode of transport.
Perhaps they should change the name of the company to Life Ride.
And it wasn’t Beverly, it was a kid-specific hospital that has multiple neonatologists on staff as well as neurologists who can immediately read EEGs.
We are no closer now to knowing what is wrong with my boy than we were nine days ago when I carried Doss out of the operating room and into the NICU.
These past nine days have been the longest of my life. It feels like nine months.
Every other day, a promise of future good news is sullied by current realities.
On more than one occasion we have heard that Doss will be coming off the ventilator soon, only to be told the next day that something was worse than thought (platelet levels, glucose levels, liver enzymes, brain bleeds, seizures, and so on, ad nauseum).
According to the NICU doctors and nurses, one day he’s fine and will be going home soon and the next day he’s gravely ill.
Today was the last straw.
Yesterday, the NICU staff said they were reducing the amount of Ativan because Doss was doing so well and his seizures appeared to be under control.
With the reduction in Ativan, they could take him off the ventilator and send him home soon.
With Doss in the NICU, I am at the hospital from 6-7am before heading off to work. P.Pie & Jorja follows up at 11, then we all go around 6 or 7 in the evening.
When I was there this morning, everything was roses.
By the time P.Pie arrived, they were saying that Doss’s brain was essentially seizing non-stop. At least, that’s what the EEG that was done two days previous was showing.
Two days previous? And it’s only now being read? We need to be in a place that can read EEGs immediately.
So we loaded up the truck and moved to Beverly. Actually it wasn’t a truck, it was an ambulance. Which I must say was a little disappointing. When they said Life Flight was doing the transport, I made certain assumptions about the mode of transport.
Perhaps they should change the name of the company to Life Ride.
And it wasn’t Beverly, it was a kid-specific hospital that has multiple neonatologists on staff as well as neurologists who can immediately read EEGs.
Doss has an MRI, EEG, and several other three letter acronyms scheduled for tomorrow.
Wish us luck.
posted by Rob Barron at 10:21 PM
16 Comments:
Rob -
We're still praying for your family. Hopefully you will get some better answers at the new hospital. We were always told that they have to figure out what is wrong first. Praying that you will have answers soon.
Best wishes that he gets the help and expertise he needs.
Sounds like you made a good call to bring him somewhere else. I hope you all have better luck there.
Love and best wishes to you and your family.
Sandie
I know all too well the ambulance ride to a different hospital...OG was transferred at 2am to Chapel Hill CHildren's hopsital b/c of a clot in her femeral (sp?) artery that was causing her leg & toes to turn blue!!! We got the call and rushed to the hospital. only to see her for a short while before her 2 pound body was put in that big ole ambulance. we followed for a minte or 2 until they took off into the night. We eventually got there too, and she stayed for about 8 hrs...then they sent her back to her original spot where she was bron in Greensboro by ambulance again. They ALMOST didn't have a spot open for her...even just 8 hrs later when she returned. They said she almost had to go to another hospital 40 mins away!! SO, make sure that if you DO want to go back to your original hopsital, that they have a space for sweet Doss.
As always, huggs & prayers are coming your way!
Reading your stories brings back so many memories...hubbie coming in at 7am before work...me coming and staying most of the day from 8-3 9with maybe a lunch break in between ro a nap)...then coming back at night from 6-7 or so. We always HATED leaving and I had to give OG 5 million kisses and touches beore leaving.
Sorry for a long post!
Yes, yes, and yes, thankful to hear that you've moved to Beverly and gotten Doss to a facility that has the ability to read results quickly. That's so very important (we got the "life ride" as well--this is kind of dumb on my part but I've since wondered if they drove her there with the sirens going or not since we had to wait to be discharged to go "meet" her at the other hospital).
All of the three-letter acronyms were run on our girl as well, after getting the ultrasound and CT scan, etc., done. Also, there's a more detailed version of the MRI called the MRA (magnetic resonance arteriograph or arteriogram, I believe) that will allow them to look at the vessels of the head and neck in greater detail. In our case, they did it a couple of days after (I think 3 or 4 tops) the MRI came back showing the bleed. It's done with contrast and supposedly provides a lot more info for the docs. Just wanted to give you a heads up on the next acronym they may throw your way.
Also, has the neonatologist requested a pediatric hematologist consult? From what they told us, when an infant has a brain bleed, a hemo consult is called so they can run a panel of (blood) tests to see if a bleeding or clotting disorder may be at the root of the bleed.
Good luck. You have been and will continue to be in my thoughts/prayers/whatever works for you.
Hey new mom & dad! - I just wanted to let you know that I (we) have been thinking of you. I feel so helpless and would love to know what I can do to support you in any way. Do you need food? Do you need some help with your house, cleaning, whatever? Movies? A run to the store?
I know you have a wonderful group of people in place to help you, but please don't forget your larger village! We are here for you. Karen
Good luck! My nephew was moved from the original NICU in his birth hospital to Oakland Children's hospital when he was a few weeks old. The difference in care was incredible considering just the amount of staff and expertise that was available there. I am wishing with all my might that you have our happy ending.
PS Glad to hear things are going well with Jorja. I don't think I could ever burp as well as you. =)
I deleted my previous comment because I was operating on few hrs of sleep and didnt say my wishes properly.
Anyway, all the best for Doss. My thoughts go out to you guys.
Jorja Rail is a beautiful name for a beautiful little girl. Congrats on both.
Archana
I hope the new hospital does a wonderful job with him. I've been praying.
Good luck! Sounds like he'll get the attention he needs at the new hospital. I'm thinking about you and sending warm wishes Doss' way. Hang in there.
We're throwin' the LA Parent Mojo your way! Good vibes and happy thoughts, little Doss!
Keep us posted!
Rob,
We're keeping Jorja and Doss and you and your wife in our thoughts and prayers. May you feel the peace and the love that we are sending your way.
Malcolm and Patrice Smith
My god man, I really really hope things get better (and permanently stable) soon. Best wishes, take care of yourself and the fam, and know you're being thought of.
Good luck, you guys! I hope the "kid-specific hopsital" can take better care of your little guy.
I can't begin to express what we feel for you and your beautiful children. We continue to pray for your sweet little boy and for you.
If there is anything we can do . . .
Peace,
Beth
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