Withdrawal and Tinkering Once Again

Finally, the withdrawal is calming down

Hello Friends,

It's been a rough few days since the last post. Steele had a terrible weekend. Monday and Tuesday were better, but not smooth due to withdrawal, access to his vascular lines lines, and the possibility of an infection. The hardest part for him has been the withdrawal issue for several reasons. First, and most important are the changes in staffing at the hospital. Many of the nurses in our unit are "Travelling Nurses", which means that Steele does not get consistency in his care for more than 3 days at a time. So every 3 days, you have to advocate his story for the nutrition and medications. Steele's biggest issue is the volume of fluids his stomach can handle, which is not a high amount at the moment. Couple this issue with headaches, pain, and a heavy duty narcotic withdrawal, it's the perfect storm of mayhem. On top of all this there was a scare of an infection because he had a fever. Blood labs were taken and antibiotics started immediately.

I must say, withdrawal is the hardest part of this experience. There are so many moving parts, it's really tricky to "capture" Steele in his sweet spot. Today, he finally was back to his normal self after 5 days of hell. He was not sleeping, writhing all over the place, and could not stop crying. Yes, we used all the tricks in our toolbox, but you are fighting that withdrawal demon 24 hours each day. It's frustrating for everyone involved. I felt so bad for his nurses, you can see the frustration mounting as they are trying to get him in a comfortable spot. At the end of the day, you feel so defeated that the withdrawal got the better of him. It's very difficult to walk away knowing that this will continue for an uncertain amount of time. At least with surgery, you know there is a beginning and end, withdrawal however is a completely different beast.

The fellow and attending doctors ordered a double lumen central line to his neck because all his IV's were drying up. This would help with getting the meds he needed quickly and would help him get the antibiotics at the same time, but it's another way for an infection to start brewing. After 48 hours, the blood labs were negative and they could stop his antibiotics. Again, the withdrawal began bearing its teeth on Monday and Tuesday. Steele was vomiting, diarrhea, fevers, and uncontrollable writhing every hour for about 1/2 hour. Long days for everyone along with a delay in discharge.

Again, one thing at time, one day at a time, that is the mantra for Mr.Steele.

The plan was to return as a whole family back to Oregon over the 3 day weekend. Not anymore. I was able to get a one week extension on FMLA and will return with Ryleigh regardless on January 23rd. Rachel, Steele, Jessica will fly home sometime after or hopefully on the same day. I'm in denial that we will be leaving California and settling into life back in Portland. The hospital life has become our careers, so switching over to our "New Normal" will be interesting. I am mainly looking forward to having us all home again. Steele will be transferred back to OHSU and begin his clinical appointments again. If all goes as planned, I want to parade him around the PICU at OHSU on his first visit. There will most likely be another surgery before Steele turns 3 due to his stent in the Aortic Arch. Hopefully not in 2016, but time will tell how that will play out for him.

Only a handful of entries left as life moves on in Steele's Journey from Palo Alto. I want to thank everyone that continues to follow his story and your undivided support for my family. Until next time....