This day has come to an end

Having typed out the title, I am officially done listing the highlights of this day.

Boeta had a wonderful day yesterday.  Little fever, lots of energy, happy times all around.  The only downer yesterday was getting his GCSF booster injection.  As soon as he sees the Emla patch he starts protesting.  By the time the Emla has worked to numb his thigh it is a matter of moving in ASAP, pinning him down and doing the dirty deed.  He knows that the patch makes it less sore but he doesn’t care.  He doesn’t want “instekers”, period.

Today.  Oh, today.  It started off well.  Boeta had two slices of toast for breakfast.  Crusts cut off, with butter or jam evenly spread, cut into four fingers per slice.  Boeta doesn’t want Wouter to do things like preparing food because he doesn’t know about all the special touches that are required. Daddies can’t be mommies! 

This morning Boeta had blood taken for a full blood count to see if his cell counts have started improving yet.  Surprise, surprise.  Horror, horror.  His Hb stayed just below 9, his white count stayed at 0.2 but his platelets dropped to 9.  Cue platelet transfusion.

Now here the trouble started.  No one expected that Boeta would need a transfusion so we needed to get more blood for cross matching.  But suddenly his Broviac wouldn’t work.  Usually, if blood doesn’t want to come out easily they inject some heparin through the line and then it goes easily.  Today they couldn’t inject anything into the line.  A couple of hours earlier they took blood easily for the FBC and suddenly it was clogged.  Nothing in, nothing out.  After 30 minutes of trying, pushing and pulling, moving Boeta into various positions and trying to keep his hands above his head (another position that sometimes help) while he tries to eat pretzel sticks, Debbie (our fabulous nurse) gave up and phoned Gerrit. 

Gerrit arrived, joking about his new career as plumber.  As I will explain in the following paragraphs, he may have a more successful career ahead in conventional plumbing.  Boeta had great doubts about Gerrit’s skills as paediatrician…  

Back to the story, Gerrit tried pushing and pulling and decided that the Broviac was broken (clogged / not performing as it should / whatever).  It reminded me a lot of when Boeta was diagnosed and no one would tell us what they suspected.  I could see that he thought the Broviac had come to the end of its lifespan and had to be removed.  But since he knew that I didn’t want to hear that he uhm’ed and ah’ed until I pretty much cornered him.  Then he had the audacity of suggesting that, should the Broviac come out, we give Boeta a couple of days of rest before having the next one inserted.  I don’t think so, thank you very much.  And I told him so!  We like the Broviac.  It makes treatment easy.  Boeta doesn’t want rest, he wants a Broviac! 🙂

By this time Boeta’s IV antibiotics were way overdue and he had to get a platelet transfusion ASAP so Gerrit decided that it was time to put up a peripheral line.  That, by the way, is fancy medical speak for putting up a drip.  As soon as Woutertjie realised what was ahead (which was pretty quick) he started screaming and fighting.  It was horrible.  He was sitting on my lap, crying and pleading with the nurse pinning his arm and Gerrit trying to find a vein.  Most of you won’t know what “finding a vein” means.  The drip needle (a needle with a plastic tube around it – the needle gets pulled out and the plastic remains as the drip) is approximately 2cm long.  They aim for a vein.  If they miss it (children’s veins are small) they pull the needle out a bit and push it in a different direction.  This can be done several times.  If they are lucky, the veins cooperate and they find one on the first try.  Today Gerrit tried 3 times, each time hunting around a couple of times before giving up. 

After the third attempt Gerrit threw in the towel.  He has a three-times-rule.  He calls in help after that.  In his defence, he was pretty much in tears by then as well.  Boeta was hysterical.  And I had to be strong, holding him, cuddling him and keeping him still so they could hurt him.  That defeated look in Boeta’s eyes is something that will haunt me for years. 

Next Alta (the sister in charge of paediatrics) tried to find a vein.  Woutertjie thought that it was all over and then he was held down again and hurt again.  He was screaming in anger, frustration and pain.  And when I didn’t help him he screamed “Daddy! Help me!  Help me!  Daddy!”  Knowing full well that Wouter wasn’t there.  That moment I don’t want over ever again.  I am the mommy and I didn’t protect him.  During all of this my mom and Carien were sitting outside the room.  They came for a quick visit and then the Broviac problems happened.  So they heard all the screaming and crying.  Carien was telling my mom and Annie (who also visited at that time) “Boeta huil?  Boeta huil!” and they all left sometime during the chaos.

Alta didn’t find a vein with her first try either.  Then Debbie, bless her soul, suggested that we try the Broviac one last time.  Woutertjie was so scared and tired by then.  He refused to lie on the bed for the Broviac.  He sat on my lap, hiding his arms and wincing throughout.   The Broviac worked.  It flushed easily.  That was one of the best moments this year for me. 

Boeta was so tired after his ordeal.  We lay on his bed and he fell asleep in my arms. 

Added to today’s chaos the paediatric ward was cleared out to be refurbished.  The paediatric ward has 22 beds, 4 single rooms and three 4-bed rooms and then a gastro unit of 2 single rooms and a 4-bed room.  The former high care ward (ward S) that ward A was moved to only has three 4-bed rooms.  Bad bad planning.  That is what happens when planners and builders don’t listen to the people doing the work.

By the time Boeta fell asleep we were the only people left in ward A.  And since paediatric nurses are a breed of their own they decided not to bother Boeta and let him sleep for a bit.  As soon as he fell asleep I asked them to prepare his GCSF shot.  I couldn’t stand to traumatise him again.  So while he was sleeping, they crept up on us and quickly injected him.  He started fighting but I told him that he must’ve had a bad dream.  He fell for it and slept on.

He slept so long that Debbie and I eventually moved him to ward D while he was sleeping.  We had to go to D because Boeta needs to be in isolation and S, the new A, doesn’t have single rooms.  So now we are in an adult ward with a dedicated paediatric nurse that only looks after Boeta.  We love it but I suspect the nurses are going to be bored out of their minds!

I think it says a lot that after this day I still consider Gerrit to be an excellent doctor.  😉  It means a lot to me as a parent when I can see that the doctor / nurse / whoever cares about what Boeta experiences.  In an attempt to rebuild the relationship I told Boeta that “oom Gerrit” phoned to say sorry for hurting him.  Boeta thought about it and accepted it.  I then asked Boeta if he would still be friends with “oom Gerrit”.  He thought about it.  He is still thinking about it.  Gerrit may have some fences to mend…

I am wiped out today.  I am tired.  I have had enough.  I can’t deal with Boeta being hurt and being scared.

Carien always says “Boeta hospita-hoe.  Tannies beter maak.”  Today on their way home she kept on telling my mom “Tannies Boeta nie beter maak nie-nie.  Boeta huil.”  That was the last straw.  It is bad enough that Boeta lost his innocence somewhere along the line.  For the first time in her life Carien was disillusioned today.  It breaks my heart.


5 Responses

  1. I’m so incredibly sorry your day was so tough and so incredibly challenging. I hate those moments too!

  2. So jammer om te hoor van julle slegte dag dit breek ons harte as ons kleinmensies moet seerkry!!Sterkte en bid steeds vir julle xxx

  3. congratulations you have made ice maiden cry !
    I sat here reading your blog with tears running down my cheeks cos I now know how hard it must have been holding your baby while they hurt him.

    Wish I was there to help – even if it was just a hug for you after the whole story.


  4. Sjoe, dit moes ontsettend intens gewees het. Mag die Here jou ekste krag en energie gee! Ek sit met ‘n paar knoppe nou in my keel om nou af te sluk.

  5. I have been through those awful needles with my boy. He has to have blood tests every 8 weeks while on his meds for Crohn’s and we hate hate hate it!
    He eventually had some sessions with the psychologist to work thru his fear and anger.
    I once tried to pull the wool over his eyes and allowed the dr to persuade me to give him some dormicum to keep him calm. It ended up with a full day in hospital and enough drugs in his body to fell an elephant, but he continued to fight with all his might. Holding him down was one of the most painful things I have ever done.
    Mom’s are warriors!!!!
    Praying for you xx

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