Monday March 11, 2024.                                                             Dylan vomited around 10:30pm on Sunday March 10.  Around 4am the next morning, he had a low grade fever and they were concerned about aspiration pneumonia. The night nurse at Evergreen called the doctor on call, who recommended sending Dylan to hospital.  They called us at home but we didn’t hear the phone ring.  The day nurse called at 07:30am to let us know Dylan was in hospital (incase we didn’t know), and we arrived at the hospital around 9am.   Dylan was OK when we arrived in his room. He was on oxygen prongs and his vitals were a little elevated.  Not long after we arrived a doctor spoke with us. Dylan’s chest x-ray didn’t show aspiration pneumonia but he had started Dylan on an antibiotic called Merapenem. He’d also earlier given Dylan Ativan, as he’d been agitated after arriving at the hospital, plus given anti vomiting meds.    Dylan was definitely phlegmy and rattle in his chest. Fortunately the doc and nurse were really good and by mid afternoon, they had his meds and food organized.  However, as Dylan had vomited earlier, they are giving his food at a significantly lower rate than what he usually has. Chris went home around 2pm, then came back around 6pm and stayed with Dylan til about 10pm, when I picked him up.  Dylan isn’t having seizures so we didn’t sleep at the hospital as it’s difficult to get any sleep.   Dylan’s Dilantin level is low though. It was only 36 last week and is supposed to be between 40 and 60.  We told the nurse what to look out for re seizures and call us if anything happens.
 
Tuesday March 12, 2024        Chris went back to the hospital around 7am. Dylan had coughed a bit during the night, but then slept well for a few hours.  He wasn’t coughing as much and seemed less phlegmy.  A doctor came and spoke to Chris and told him that Dylan had an infection in his blood and they are putting him on a second antibiotic called Ciprofloxin. We were told Dylan’s Dilantin level was now 28, so they have increased the dose of his night Dilantin.  Dylan was a little agitated early in the afternoon and was given Ativan; it didn’t develop into a seizure.   I relieved Chris around 2pm.  They took Dylan off the oxygen prongs and his oxygen stayed between 93 and 96.  Dylan definitely sounded better than yesterday with his breathing.   A doctor came to speak to me in the afternoon and told me about the infection in Dylan’s blood.  It’s called Pseudomonas - it is usually found in urine. We aren’t sure how he got it, as it’s usually from wearing a condom catheter. Dylan wears a pad at Evergreen though.  Im not happy he has this infection but they are on top of it.  Dylan was doing ok, but I felt sad leaving him.  Chris picked me up around 09:30pm and we slept at home.
 Wednesday March 13, 2024    Chris went back to the hospital around 7am.  Dylan had been ok overnight.  Dylan was moved from Emerg room 213 to Emerg room 320.  He had a very nice nurse looking after him.  In the morning an Infectious Disease doctor spoke to Chris and said Dylan was very sick when he was admitted on Monday.  They may be changing the antibiotic.  I relieved Chris around 2pm. Later in the afternoon, another Infectious Disease doctor came to speak to me.  Dylan has 2 bacterial infections in his blood - Pseudomonas and Proteus. They are taking him off the Ciprofloxin as the Merapenem will work on both infections. The don’t want to give Dylan any unnecessary antibiotics.  Dylan was doing OK, so Chris picked me up around 9pm and we slept at home.
 
Thursday, March 14, 2024     Chris went back to the hospital around 7am. Dylan had just been moved up to the Neurology ward on floor 8 of the new Critical Care Tower.  There was one other person in his room, but they moved him out as he was being too noisy.   Dylan definitely seems better today, coughing less.   I relieved Chris around 2pm. Later in the afternoon, a doctor (with a South African accent) came to speak to me.  He said that the last chest x-ray was clear and that they are watching his blood cultures. Dylan will stay on the Merapenem and will probably need to be on antibiotics for 2 weeks.  There’s a possibility it could change to tablet form and be given to him at Evergreen, but he will definitely be in the hospital til early next week. Chris picked me up around 9pm, as Dylan was settled.
 
Friday March 15, 2024                                                                                                                                                                            Chris went back to the hospital around 7am.  Dylan was fine overnight.  Dylan was taken for an Ultrasound to check for kidney stones, as the ER doctor wanted to check for them, incase this caused the infections in his blood.                                                                                                                                                                                       I relieved Chris around 2pm.  The same doctor from yesterday came and told me the Ultrasound showed no kidney stones.                                                                                                                                                                                                    Dylan was calm and Chris picked me up around 8:45pm.
 
Saturday March 16, 2024. Chris woke up feeling unwell, and feels like he may have something on this chest, which is what normally happens, and if left untreated it could lead to pneumonia.  Chris went to the walk in clinic, and saw the doctor around 07:45am.  She prescribed an antibiotic.  Chris at that time felt OK to go and spend time with Dylan, so I dropped him off at the hospital around 08:30am.   Dylan had been OK overnight.  Its a different doctor today, and we had some questions about Dylan&#39;s Dilantin dose.  In Emerg we were told they had increased his night dose, but the nurse looking after Dylan told Chris this was not reflected in the meds they had.  His level was low, hence why the does was increased.                                                                                                                                                                                                                  I relieved Chris around 2pm and Chris drove to Evergreen to pick up Dylan&#39;s wheelchair as we want to start getting Dylan up in his chair as he is going to be in hospital a bit longer.   Dylan laughed this afternoon not long after I arrived.  This is a good sign, as he must be feeling better.  He was more himself than I&#39;ve seen him all week, and was also quite vocal.                                                                          A dietician came and spoke to me about Dylan&#39;s tube feed schedule.   Dylan is still on the lower rate for his tube feed and as he has not vomited again, the dietician wants to start Dylan back on his regular schedule that he was on at Evergreen.   This will start tomorrow.                                                                     The doctor also came to speak to me about Dylan&#39;s Dilantin.  They will take blood tomorrow, to check the Dilantin level, and if it is still low in his blood, will increase the dose.                                                                        Dylan was doing well, so Chris picked my up around 08:45pm.
 
Sunday, March 17, 2023     Chris arrived at the hospital around 7am.  Dylan had been fine overnight. They took some blood to check Dylan’s Dilantin level. It’s still around 38, which is too low.  The doctor told Chris that Dylan’s antibodies will finish on Tuesday so he should be able to go back to Evergreen on Wednesday.   They got Dylan up in his wheelchair around 11am, and Chris took Dylan out to the sitting area near the elevators til noon.   I relieved Chris around 2pm. Dylan was relaxed all afternoon. As Dylan was doing well, Chris picked me up around 08:30pm.
 
Monday March 18, 2024.   Chris arrived at the hospital around 7am.  Dylan was doing well.  He was told by the doctor that Dylan’s antibiotics finish later tonight so unless something happens between now and tomorrow, Dylan will be discharged tomorrow.   They changed Dylan’s IV site, as the IV had been in his left foot since last Monday (It is extremely hard to find good veins in Dylan’s hands/arms). The nurse changed it to his right foot.  Dylan got up in his chair a bit late due to this.   I relieved Chris around 1pm, as Chris was picking Andie up from the airport later. Dylan went back to bed just before 2pm, and they started his afternoon tube feed. Dylan is back to his regular schedule now.  Dylan was doing well all afternoon and evening so Chris picked me up around 08:30pm 
Tuesday March 19, 2024.
Chris arrived at the hospital just before 7am.  Dylan is doing well and his antibiotics are finished, so he was discharged today.   I arrived at Evergreen just before 11am. Chris went to Evergreen to fetch the wheelchair accessible van so we could take Dylan back to Evergreen.  After all the paperwork had been completed, we arrived back at Evergreen around noon.  We stayed awhile to give the discharge papers to the nurse and that Dylan was settled. We&#39;re very happy that he’s all better and back in his care home.

Dylan Hale

Update: Dylan in Surrey Hospital - March 2024 – by Lydia Hale