So off we set on the new adventure of this admission. It was tough keeping a relatively well, almost 3 year old occupied busy and happy in a room measuring about 4x4 metres square, as he was hooked up to different IV antibiotics, IV vitamins and feeding pumps. We managed and I think I kept my sanity but I just wanted to share with you how an admission for Cadel typically goes and what happens especially in the first few hours.
We knew this admission was happening and on which day but we were unsure if Cadel had a bed available so we had to wait for the hospital to call us, this is how our day played out. Yes it is frustrating and tough and it is something we have done over 20 times. It doesn't get any easier, I think we just adapt quicker and take it all on board.
9.30 We got the call that the CF Clinical Nurse Consultant ( CF CNC) had been to the hospital bed meeting ( a morning meeting everyday to discuss available beds in each ward) and they should have one today but unsure what time as they were waiting for the patient to leave.
11.30am We get another phone call from the CF CNC that the bed should be available by 2pm.
1.15pm We pack up the car and head in down to the Hospital.
2.10pm We arrive at the hospital, load up as much as we can and head on into admissions.
2.30pm We finish all the paperwork at admissions and they send us on up to the ward. We are told on the ward that the room hasn't been cleaned yet so we will have to wait. We head on downstairs to just relax on the lawn. Luckily Cadel is alseep and misses all the drama!
4pm we get the call from the ward that the room is cleaned and ready for us now so we head up.
4.15pm a researcher from the Liver research team that Cadel is participating in has caught on that Cadel has been admitted, she asks if they can do this regular ultrasound for research purposes.
4.30pm Scott arrives at the hospital and both Cadel and I are happy to see him as he is a big support for both of us during admissions. The Dr also arrives at this time and proceeds to tell us it is going to be a 10 day admission and discusses the medications etc.
5pm Cadel's feeding tube becomes blocked and luckily his Dr is still on hand to help unblock it! Phew!
7pm Cadel has his port needled. Cadel has had many admissions as you all know and his veins don't cope well with the IV lines so they decided over 12 months ago to give him a port-a-cath* this is a process that Cadel has to go through every 6 weeks as they need to flush it regularly to maintain the line and make sure it doesn't get blocked with clots. During admissions the needles are changed every 7 days to lessen the risk of infection. Although this happens regularly it is not a nice process as Scott and I have to hold Cadel down as the nurses insert the needle and take blood samples. Sometimes the port can be tricky and it may take a few attempts. Hard to explain to a toddler to just keep still when all he sees are needles coming at him. Scott had to leave not long after. We miss him and the big kids already.
8pm Cadel is connected to his usual overnight feed. He also finally settles and goes to sleep.
10pm The first of the antibiotics are finally started and I finally can settle down to get some rest myself.
The next day and everyday after for the 10 day admission is different as they try and fit the meds in around his Physio times and letting us escape etc some points to share though are that at
8am, 12pm and 3pm everyday is a Physio session.
IV antibiotics are hooked up for periods lasting up to an hour at 6am, 8am, 1pm, 10pm and 12am.
He has blood tests at 10am and 2pm on his second day of admission to make sure the levels of the antibiotics are not toxic but are enough to be effective. These blood tests are unable to be taken from the port as it is where the antibiotics are administered and may give a false reading. They typically do a finger prick and then squeeze the required about of blood into a test tube. Hard to watch and again hard to explain to a toddler.
2pm on the second day the 20 hour infusion of IV Vitamins is hooked up, this now means he must remain connected up to the machines and therefore stay in the room.
Hope this has given you all a quick insight into our admission. Maybe I will do a post on a typical 24 hours at home for Cadel. Well Cadel isn't so called ' typical' but you all know what I mean.
*In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".