Well, after a hectic day I’ve endured my 11th procedure. Before I go into all the details, I can confirm that this procedure was successful and I’m recovering well. Fortunately I didn’t have to stay in hospital overnight, so I was discharged earlier this evening.

As Prof Beale’s surgery time at Morningside Medi Clinic on a Tuesday is typically only from midday, I had some time this morning to chill. In fact, Mommy even hosted Mom’s group, albeit that we left early to get to the hospital on time for admission. Although we left, Mom’s group continued without us, in our house, and Michelle took charge of the event.

We arrived at Morningside Medi Clinic just after 11 o’clock, and as Dad had pre-admitted me the day before we were swiftly allocated a bed in the Paediatrics Ward. En route to the Paed Ward we popped in to see Dr Ron – on all our previous visits to his office we had missed him. We were in luck, and we finally got to see each other after far too long – in fact Dr Ron had not seen me since I was discharged from hospital in October last year. He was amazed at my progress and how healthy I looked.

After settling into our ward, we visited some of the nurses in NNICU who had taken care of me for so many months last year; it is always such a treat to catch-up with my caregivers and always use the opportunity to show off a new skill or talent that I have acquired.

I spent what seemed like forever in the ward playing and waiting, walking about and waiting, snoozing and waiting, until finally, at around 3:30pm it was finally time for me to be taken to theatre. By now I was starting to get really cranky, as I’d last eaten at 7:30am in the morning, and was last allowed to drink anything at 11:00am, so I was really hungry and thirsty. I must say that the hours of waiting weren’t actually all that bad; Mom and Dad went to great lengths to keep me entertained and occupied, so it was really nice quality time. The anaesthetist, Dr Walsh, also popped by to check up on me, and it was nice to see him again and catch-up, as he’d been my anaesthetist on prior occasions and was familiar with my medical history. Prof Beale also briefly popped in to ensure all was in order.

So at around 3:30pm we were hanging around at the entrance to the theatre waiting to be admitted. It was Dad’s chance to escort me in to theatre today, so when it was time for me to go in, he donned a robe, hair cap and shoe coverings. Dad carried me all the way to the operating room where Dr Walsh started to gas me. The rest is a little vague, so forgive me, but I dreamily felt Dad put me on the table, kiss me and tell me that he loved me, and then he had leave as only medical personnel are permitted in the theatre during surgery.

About an hour later, I woke up in the recovery quarter and decided this was as good as any time to start wailing! I was uncomfortable, groggy from anaesthetic, disorientated, and most of all hungry and thirsty. Mom rushed in to the recovery room and picked me up and held me. She also gave me some water and I gratefully gulped down the cool liquid. After a final check was done, I was dispatched back to the ward, where I opted to snooze. It was a fitful sleep, so I heard Dr Nicoletta pop in to say hello, as well as Dr Ron. Dr Walsh and Prof Beale also did their rounds, by which time I was feeling much better and sitting up eating.

Prof Beale and Dr Walsh both confirmed that the surgery was needed, and more importantly, a success. It seems that the reason why the stoma wasn’t closing on its own was that some of the mucosa tissue from the stomach had granulated and grown up through the hole, preventing the flesh from healing shut. Mucosa in one of the four layers of the stomach wall, and it is the most inner layer. Out of interest, the next layer is the submucosa, then the muscularis externa, and lastly the serosa. What Prof Beale did during surgery is open up the wound, cut away the dead skin and the offending mucosal tissue that was preventing closure of the stoma, and then stitched it all shut. Unfortunately I cannot bath again for a few days, which is really disappointing, as I love my bath time, but at the same time it is important that the wound and dressing are not submersed in water, as this prevents healing and increasing the likelihood of scaring.

It was dark and cold outside by the time we left the hospital, but on the up-side the evening traffic out of Sandton had already dissipated, so we arrived home in just under 10 minutes. Even though the trip was so short I feel into a deep sleep in the back of the car. Once the car was parked, Mom gently took me inside and put me in my parent’s bed to sleep. Occasionally I woke up to give Dad some directions on tonight’s blog and to proof read what he’d already typed, as tonight there was no way I could write my own blog. So I must apologise in advance for any errors or omissions in this posting, as I cannot really vouch for Dad’s grammar, vocabulary nor spelling!

Before I sign off, I must thank everyone for your wonderful support today; Mom, Dad and I were really moved and grateful for all the inspiring and caring messages, phone calls, SMS’s and emails.

Lots of love, hugs and kisses,

Jay-Bee!

P.S. Because Mom and Dad use my blog as a record for my medical history, I’ve included a table of all my procedures to date below:

Number

Date (click on date to go to that blog posting)

Procedure

My Age at the time

Location

1

Friday, 27 June, 2008

Embolisation of vein of Galen b.m.o. radio intervention surgery and sterile super-glue

8 days old

Unitas

2

Wednesday, 13 August, 2008

Second embolisation of vein of Galen b.m.o. radio intervention surgery and sterile super-glue

8 weeks old

Unitas

3

Thursday, 18 September, 2008 (morning)

Deployment of coils in the fistula in my head to occlude the blood flow; attempt was unsuccessful, as the flow was so strong that the coils were flushed away, however a micro-catheter was coiled five times over in the fistula

13 weeks old

Unitas

4

Thursday, 18 September, 2008 (evening)

Insertion of Amplatzer PFO Occluder b.m.o. a craniotomy and deployment of some coils behind the Amplatzer

13 weeks old

Unitas

5

Thursday, 25 September, 2008

Deployment of coils behind the Amplatzer (3 larger Boston Coils and 1 smaller EB3 coil)

14 weeks old

Unitas

6

Wednesday, 15 October, 2008

PEG procedure (percutaneous endoscopic gastrostomy) to put a gastronomy tube in my tummy through which I can be fed

17 weeks old

Morningside Medi-Clinic

7

Tuesday, 11 November, 2008

Repair to bilateral inguinal hernia

20½ weeks old

Morningside Medi-Clinic

8.

Thursday, 12 March, 2009

Grommets

38 weeks old

Morningside Medi-Clinic

9.

Friday, 20 March, 2009

MRI Brain Scan (not a surgical procedure per se, but underwent anaesthetic)

39 weeks and 1 day old

Sunninghill Hospital

10.

Tuesday, 12 May, 2009

Catheter removed at jugular, running to groin

46 weeks and 5 days old

Unitas

N/A

Wednesday, 27 May, 2009

MIC-Key is permanently removed (not a surgical procedure per se)

48 weeks and 6 days old

Park Lane Clinic

11.

Tuesday, 14 July, 2009 (tonight’s posting)

Stoma where my MIC-Key and gastronomy tube went into my tummy, was closed

1 year and two weeks old

Morningside Medi-Clinic

 

Figure 1 Playing in the ward

Figure 2 Smiling during the wait

Figure 3 Catching some zzzzzzz’s

Figure 4 Dad plays the maracas while I drum

Figure 5 More playtime

Figure 6 Sleeping after surgery

Figure 7 After the anaesthetic finally wore off, it was time for a snack and a drink

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