What a beautiful day

All in all yesterday was a good day.  Factually, that is.  Emotionally not so much!

Yesterday we heard that:

1.  Boeta gained weight!  He was 19.1kg when he was diagnosed, dropped to 16.6kg last Thursday when he was admitted and yesterday he weighed 17kg.  He is eating OKish at the moment provided we give him what he feels like at that particular moment.  He can’t tell us what he feels like so we just guess, guess, guess!  Maybe he wants some wild boar (thanks for that, Lea!).

2.  He’s been feverish every single evening and the paediatrician worried that there may be infection in his Broviac.  So yesterday they did a chest xray and it is clear.  Thank God!  If there was infection they would’ve had to operate again to remove it and insert another one. 

3.  The cardiologist came by to do an ECHO (sonar) to check that the Broviac is OK.  It is.  Added to that she looked at the tumour in his heart and it hasn’t gotten bigger.  That is good news too.

4.  His white blood counts are up.  It should be between 5 and 15.  His was 0.5 when admitted last Thursday, it dropped to 0.4 on Saturday, increased to 0.7  on Monday and yesterday it leaped to 1.5!  He has been getting bone marrow boosting injections on his thighs.  Later today I probably will repost yesterday’s update since I have to assist with holding him for it.  They put local anaesthetic patches on but since those are plasters and it is then followed by the injection he goes mad.  Please pray for us.


No! Mommy! Help me!

Today Boeta’s plasters covering the Broviac line (permanent drip in his chest) were changed again.  I can’t stand it anymore.  He has become scared of plasters because they have to be removed and it hurts.  Now he screams and cries as soon as anyone mentions the word and I have to try and calm him down while the nurses do it as quickly as possible. 

It all started on Christmas Day.  He had to get general (full) anaesthetic for his CT scan on the 24th and they taped the 2 drips to his arms with those wide, white plaster.  From wrist to upperarm.  So on Christmas Day after seeing the oncologist the drips had to be removed and they had to pull off all that plaster.  He was screaming with pain and I had to help calm him down.

The nurses in the paediatric ward have been wonderful with his drips – they put gauze against his skin so the plaster didn’t hurt him.  But now the Broviac needs to be held in place against his chest and they want to change the plasters daily…

Boeta hates being held down.  This is also a new thing – he never minded before.  After a couple of xrays and plasters he now goes ballistic about it.  So I tell him that he can hold onto my hands while they are doing the plaster, meanwhile I grip his hands as tightly as possible to keep him from pulling on the line while trying to fight the nurses off.  It is getting to me in a big way and I just have to suck it up and deal with it.  I don’t want to have to hold my baby down.   I don’t want to have to tell him that it is almost over.  I want him to run around and feel better.  I want him to be healthy.  I want him to be muddy and filthy and tired from chasing the dogs around. 

I don’t want to hear him crying to me for help and I can’t do anything to make it better.