Hospital Admission #5 Update

Skip to the bottom if you want the most recent update for 12/27/16 at 10:30 AM 

Timeline of hospitalizations and ER trips since October.

ER Visit # 1
Oct 7th at New Hanover Regional Medical Center
Reason: Extreme aggression and seemed to be in significant pain
No physical exam
Head CT to rule out brain tumor growth or changes, it was stable
Potential of inpatient psychiatric stay was suggested

On the ER floor with mama

ER Visit #2
Oct 8th at Wake Forest Baptist Hospital
Reason: Extreme aggression and seemed to be in significant pain
No physical exam
Restraints needed and Haldol Shot given (this is a very serious medication to give a kid)
Inpatient Psychiatric stay seriously suggested after brief neurology consult with a doctor we do not usually see there. After finding out more about being "committed" including a ride in a cop car, handcuffs and placement anywhere in NC we declined and took him home.

ER Visit #3 and Admission #1
Oct 13th at NHRMC (3 days)
Reason: Extreme aggression and seemed to be in significant pain
Per Boston team had abdominal x-ray and confirmation of serious constipation. He was admitted for a colon clean out, which was done with a NG tube and GoLytely. 

Admission # 2
Oct 18 (10 days)
Reason: Extreme aggression and seemed to be in significant pain
Outpatient x-ray showed constipation again so readmitted for clean out #2
Extreme behaviors continued during admission. Oliver was biting through his tongue, tied to bed with restraints due to his extremely aggressive behavior and pulling out his NG tube. This was a horrific experience and traumatizing for all of us. After we asked for a CT scan to rule out other issues it was discovered Oliver had pneumonia in his lower left lobe (which would be hidden on an x-ray) and a massively distended bladder. Aspiration was first suspected after lung issues noted on CT scan. This was the first sign of urinary retention. At this time his pulse ox went into 60s. We were taken to PICU, given Precedex to sedate him, high flow oxygen, antibiotics, put in a catheter and fecal management system. Behaviors and pain subsided.

After this hospital stay his sleep was severely disrupted and Oliver clearly exhibited withdrawal symptoms for almost a week on Precedex.

We were told to do Miralax twice a day and increase fiber in diet upon discharge.

Home in time for Halloween. Are you tacoing about cute?!? 

ER Visit #4, Admission # 3
Dec. 9th (5 days)
Straight to PICU this time for clean out, Precedex started, another NG tube. Urinary retention was a problem again, but due to the catheter it was hard to tell how much of an issue it was.

Were told to do Miralax twice a day, maintain 30 grams of fiber a day in diet, and mini-clean out on weekends with five Miralax doses upon discharge.

Mr. Skinny in the playroom 

Swallow Study
Dec. 22nd
Aspiration is discovered, nectar thick liquids are needed moving forward.

ER Visit #5, Admission #4 to NHRMC and then transfer to UNC
Dec. 24th -TBD `
Straight to PICU for monitoring and team believed Ollie needed a G-Tube and perhaps reflux was at play. Desaturation happening intermittently and cause for concern, first seen in ER on 12/24 by ER physician. After one night transferred to UNC since Wilmington area specialist were not around until the first week of January. 12/25 brought to UNC via ambulance. UNC team to call Urology, GI, Dietitian & Speech Therapy to consult. Kidney ultrasound ordered. They were hesitant to rush into surgery and put in a G-Tube when Oliver has a known history with surgery infections and we fear he could easily pull it out.

Dec.27th

We had a scary turn of events this morning. Thank God for mother's intuition. I asked for his pulse ox to be put back on, it was off all night and he began to desat again. At one point he got as low as 37 and his lips turned blue. This is currently continuing on and off. He has never had sleep apnea or any kind of seizure that caused him to stop breathing so everyone here is very worried. They are calling in Neurology to consult and plan to repeat his brain MRI tomorrow AM. Today he will have chest x-rays and a kidney ultrasound. We will possibly also have a video EEG. 

My gut is something is really wrong. Clearly the breathing problem is taking precedent right now over the other issues. We ask for your prayers. 

One of our many discharge days

We have spent 30% of the days since our first ER visit in the hospital. It is baffling to us that in less than 77 days we now have a child with serious constipation, urinary retention, aspiration and desaturation issues, when he has never had any issue with any of these four things in the past. What gives? We hope the team here at UNC can point us in the direction of health and happiness. Our brave and resilient boy has been through so much.