Our son the medical expert

Every now and again Cristina lines up all of her private patients (that would be us) for consultations in her rooms.  Today our slot was from 16:00.  As we walked in Cristina asked me to have a talk with the family of a girl who was diagnosed with stage 4 rhabdo earlier this week.  Cristina and Boeta took off for his check-up, hand in hand, with Boeta skipping along and telling her all about his day.  Those two adore each other.

While I was sitting with the family I saw the two of them walking through the practice, obviously looking for something.  It turns out that he wasn’t satisfied with the extent of the consultation.  When she was done thought she was done he insisted that she “make his knees better with her hammer” (maak so my kniege beter so met jou hammer).  And he insisted that she used the proper tool too.  That’s what they were looking for – a patella hitting thingy.  How many 4 year olds do you know that can tell a specialist how to do their work?  Well, our’s thinks he can!

This is the same smartie-pants who tells the nurses how to do observations (you should see the confusion when a new nurse sees to him and then gets a full on lecture about how to do her work) and informs the security staff that they have to stop the bad people from taking our car. 

If he is this full of himself now, what is he going to be like in 10 years’ time?

RIP Christopher Beets

Last week I told you that Chrissy was now terminal.  He earned his angel wings yesterday morning and is now cancer free, pain free and sitting on our Father’s lap.

Please say a prayer for Lee and Lauren and their daughter Trisha. 

 

Christopher’s blog address     http://www.carepages.com/carepages/christopherslighthouse

We. Are. Home.

I thought it warranted 3 seperate words.

I woke up at 06:00 this morning (as usual – Carien isn’t a good bed partner) and then stayed in bed until 08:00.  Wherupon I got ready, dropped Carien at my parents’ and went for a 4 hour pamper session courtesy of Wouter’s family.  Thank you, thank you, thank you!  It was fa–bu–lous.

After finally finishing I went to hospital where Wouter’s mom (ouma Skattie) kept Boeta company.  Like usual things didn’t work out exactly as planned.  I thought we would be on our way as soon as I arrived but in the end we only got away at 18:30.  We had to wait for them to arrange a pump for Boeta’s naso-gastric feeds.

Boeta is looking so much better already.  It is amazing what a couple of kilojoules in the stomach and a bit of freedom can do.  Wouter and I are a bit shell shocked.  Our medical aid (Discovery), that until now paid for almost everything, doesn’t pay for home-feeds.  We had to cough up R2800.30 (about $450?) on the spot before the order was placed.  Fortunately the hospital’s dietician, Diane Ivison, arranged everything and we just had to pay, we didn’t have to source etc.  That helps.  A lot.

Either way, now I have to go and connect Boeta to his food.  Wish me luck.

Nasogastric tube

What a day.  This was one of the most difficult days in this whole year. 

I knew that it was time for Boeta to get a NGT.  He started eating again but too little and too much junk (only junk, actually).  Wouter and I talked it over weeks ago already and we weren’t shocked when Cristina declared it Time For The Tube.  I also wasn’t surprised when she wrote it up in Boeta’s file and then made a quick escape. 

S:  Let me guess.  You wrote it up but YOU aren’t going to do it, right?

C: (utterly horrified) Of course not.  Wouter and I are friends.

Then Gerrit arrived and prescribed pre-meds for Boeta to keep him from remembering the trauma.  Apparently it is very traumatic having the tube inserted.

S:  Let me guess.  You wrote up the meds but YOU aren’t going to do it, right?

G: (utterly horrified)  Of course not.  Wouter and I are friends.

Then Debbie arrived with the chlorol hydrate that Boeta had to drink.  He drank it, then he vomited it.  So Debbie phoned Gerrit and Gerrit prescribed 1.5mg Dormicum.  More than enough to keep a normal 15kg child high for quite some time.

Except that, as previously ascertained, Boeta isn’t a normal 15kg child.  The anaethetist could barely keep him under when he had his recent scan because his liver function is off the charts as it constantly tries to clear the chemo drugs from his system. 

My cousin Lizbé (aka Zippy) was visiting at that time and she stayed with Boeta while I relocated to the patients’ lounge.  I could hear exacly when Gerrit (who did in fact insert the tube) and Debbie started.  Boeta was screaming for 15 minutes.  During that time they inserted the tube 5 times and he ripped it out 5 times.  I could hear him screaming for me.  I should’ve gone a lot further.  It was very upsetting to me, Lizbé, Gerrit and Debbie, who burst into tears.  Debbie is such a mother to every child in her care and seeing Woutertjie that upset broke her heart.  On paper it is easy to insert the tube:  stick it down the nose and down the oesophagus and into the stomach before you tape it down on the cheek to keep it in place.  But Boeta is like an octopus – holding him down is impossible and he can wriggle out of any grip.

When I heard Boeta calm down I went to the room and found him sitting on Lizbé’s lap, fast asleep.  I took my leave again.  They tried one more time but again Boeta ripped it out.

It was time to call in the big guns.  Meanwhile Boeta woke up from his drug-induced state and couldn’t remember a thing.  That is the beauty of Dormicum.  While you are apparently awake and fully functioning you will have no memory of the time.  Gerrit then prescribed 3mg of Dormicum and they tied Boeta’s hands into fists so that he couldn’t get a finger near his nose and hook the tube out. 

This time they got the tube down and it stayed down.  Wouter and I went to buy coffee at the cafeteria to make sure that we don’t hear anything.  We were barely there when Gerrit phoned to say that they were done and we could come back.

It is amazing how quickly Boeta made peace with the tube.  During the first attempts to insert the tube he was screaming that he didn’t want to look like Enrico (who already has a NGT).  When he was properly awake he wanted to look in the mirror to see what he looked like and that was it.  Children are so amazingly adaptable while the adults are all traumatised.  Eish.

I can hear my child screaming and I can’t do anything to help

They are busy putting in a naso-gastric tube.  Boeta hasn’t been gaining any weight and he needs to get supplemental feeds through the nose tube.  Gerrit prescribed chlorohydrate but Woutertjie vomited it all up.  Now he is doped up with Dormicum.  At least he won’t remember the trauma but I can hear him screaming in his room.

And it is just killing me.

Rebellion

After Friday I had to get out of hospital and stay out of hospital for a while.  Do you realise that in the last 5 weeks Woutertjie was out of hospital for only 5 days?  Yes, some nights in this time we slept at home, but he (and I) has seen this place just about daily for 5 weeks. 

It is insane.

I am insane.  But that is another story.

After walking out of Panorama on Friday I went to my parents’ (Wouter stayed with Boeta) and got into bed and stayed there until morning.  Carien had a good night (thank you Debbie!) and I thought I felt better when I woke up.  I was awake a whole 20 seconds before I burst into tears again.  My mom then chased me out of the house – she arranged with my sister in Grabouw (about an hour’s drive) and before I could fall apart again Carien and I hit the road.  We spent the day with Lielie, Benno and Ada and returned home to find that Boeta was given “parole” – a temporary discharge.  He was so tired.  He spent most of the time sitting on our laps and they returned to hospital by evening.

On Sunday I didn’t put my feet in the hospital either.  Boeta received another parole and we spent the day at home, not doing much of anything.  Boeta watched DVDs from the couch.  He was still so tired.  We visited Wouter’s brother and his family but Boeta mostly just lay wherever he could find a spot.  He was starting to dehydrate again and they went back to hospital.

I really didn’t want to go back on Monday.  Partly because of the doctors and nurses that supported me on Friday.  Some days I need to not get pampered so that I can get the facade back up.  I managed to burst into tears only once on Monday.  Seeing as how I stopped counting at my 4th panic attack on Saturday I think I did well.

Either way.  I am doing better and Boeta is doing OK.  He is still very weak and has been on TPN (IV feeds) since Friday.  He had to get a peripheral line in his hand because TPN can’t be run through the same line with anything else and Boeta still needs a lot of fluid.  He wasn’t impressed at having to get an “insteker” again.  Not at all.

I need to get out of here

I am cracking up.  I’ve tried to put it off but that isn’t working anymore. 

I need to get out of hospital but I really need to get out of this ward.  Since Ward A (paediatrics) is under construction we’ve been accomodated in Ward C (oncology).  I hate, hate, hate this ward.  The people are great, the rest not.

It is too quiet.  This ward is for adults with cancer.  And if you are an adult with cancer you generally get your chemo as an outpatient in a chair in the chemo room and only end up in the ward when you are really sick.  In other words, when you are terminal and busy dying.  People here don’t laugh at each other’s jokes.  They are too sick for that.  They are in pain.  They are emotional.  Their families are emotional.  It isn’t a pleasant ward but it isn’t the patients’ fault.  They don’t want to be here either.

The visitors are another ball game.  I am so fed up with people walking by and looking surprised when they hear a child laughing.  And then they stop and stare at this bald child before they walk away, shaking their heads, whispering about how shocked they are at children with cancer.  We aren’t monkeys in cages.  And my child isn’t dying just yet.  So take your pitying looks and whispered comments and shove it wherever you want to, as long as it isn’t in my face. 

Our doctors don’t want us to move back to Ward A because there are too many children with too many germs.  The risk of the onco-kids contracting something is higher than in Ward C.  But the risk of this oncomom chewing through her wrists if we stay her isn’t just high – it is a certainty.

In the paediatrics ward Boeta will be just as sick as he is here, but there are noises and movement and it feels like home.  There are pretty rooms, the staff are like mothers and I am allowed to complain about Boeta being moody without constantly feeling like I should be grateful that he is alive for one more day.  Ward C feels like a hotel.  A very nice hotel, but still only a hotel.

And through all of this the staff of the oncology ward is wonderful.  They are friendly, they are helpful and they understand the ups and downs of cancer and chemo. 

It feels like we are visiting distant family – we are friendly with each other and they gladly share their space with us but there comes a time for us to go home.  To Ward A.  And our family.