Larkwood Life: Milpark Hospital

Well Tuesday was NiQi's first admission to Milpark hospital. One good thing about making the move over from state to private is hopefully there will no longer be any early morning trips to be there at the crack of dawn...something I am definitely not going to miss.

NiQi phoned before we left to check the bed that had been booked for her was still available and after checking and re-checking that she had everything packed, we then managed to leave mid morning. We were both nervous...me because I feel I am no longer in control and NiQi for not knowing what to expect once we were there.

All these years I have been the primary care giver...the one who has made doctor and clinic appointments...the one who has collected scripts and checked that everything is there...the one who has done countless hours of physiotherapy...the one who has gone without sleep when they are sick...the one who has checked IV lines, mixed up anti biotics and put them through...the one who has flushed ports...the one who has spoken up and out for the best that we could get for our children...the one who has protected them from bullies and less sensitive peers and the one who has shed many many tears over the years both in public and privately. Suddenly I am 'No. 2' and it is the strangest feeling to assume this role. NiQi has grown up and she is the one making the decisions and managing responsibility now.

Years ago when Mark was still alive, lung transplants were very new and the success rate wasn't very high. Johan and I decided we wouldn't take that risk for our children. They had by that stage already dealt with so much in their lives and to put them through something of such a huge magnitude, which possibly may fail, was not what we desired for them. It is now almost 20 years later and things have changed. Many more patients have had transplants now and have survived. So when NiQi was 21 and her doctors told her that it was time to think of having a transplant, the decision wasn't ours to make, but hers. She believed in the possibility of having an extended life, a better life and decided to pursue that possibility. The road has been long since that initial decision and could possibly have been shorter had we been given proper information right in the beginning. Nonetheless, God has been gracious in her life and extended the life span of her lungs to far beyond what her doctors predicted. I believe it is her will to live, her determination to see her decision through and her faith in a God who is greater than man that sees her where she is today. So much time has passed since then that there have been many who have asked with wonder whether it is still going ahead....The answer is 'yes'...she may have outlived her prognosis but what you don't see inside of her is a pair of lungs that have done their job, got her this far but need to be replaced. She can walk short distances without oxygen and smile and laugh and be happy but check her saturation levels and you may be surprized to learn that they are at 86%.....her heart needs to work harder to get enough oxygen around her body which increases her heart rate to 111. Still the improvement all round has been sufficient for the doctors to feel the urgency isn't as dire as it once was....

Now she is at Milpark, she is under the pulmonologist who will eventually do a transplant on her. She will meet the entire team and they will decide together whether and when to list her. When the time is right, it will happen and in the mean time life carries on as it has for the last 23 years....

The hospital pharmacy just off the reception area and opposite the cafeteria

Being admitted

In her isolation room checking to see if there is a plug point to charge her cell phone and toplug in her laptop. Each room has a television fitted into the ceiling and free wifi. Masks must be worn and hands must be sanitized before entering her room

answering the duty sister's questions

Deciding on her menu...every day she is given a sheet with breakfast, lunch and supper listed. She can order what she wants to eat as well as has the privilege of asking for double portions just because she has CF