A return to Hospital

The records keep getting broken with our little guy managing to keep away from any overnight hospital stays in just over a month. This is by far the longest stint out of hospital since his ALL diagnosis. This has given us enough time to jump on the Fundraising Freeway and raise almost $5 500 in a month which is a very impressive start. Given the success and positivity this has created I’m sure there’ll be many more FUNdraisers to come.

Unfortunately our little guy has not been with out many hospital days visits for Enema’s, Bone Density tests and Bone scans and the results have not great been great.

It’s a case of mopping up all of the carnage caused by all of Chemotherapy and associated sickness from last year.

His enema has revealed he has some sort of blockage in his bowel and the Bone tests shown bone density deficiency which has caused stress fractures in his ribs, pelvis and lower back area which may explain some of the pain and lack of mobility. I’m thinking a few broken bones would do that wouldn’t they? This has only cemented my theory that he has an unbelievable high pain threshold.

So the plan is to admit him into hospital next Monday and give his bowel a complete rest by feeding him via TPN (Total Parenteral Nutrition) which means all of his nutritional requirements will be delivered through his Central Line and directly into his veins. He has been on this for short periods of time previously during other hospital stays when he has bee quite ill.

Once his bowel has had a rest and providing his lungs can tolerate it they will put him under General Anesthetic and perform an Endoscopy of the bowel to work out exactly what is going on. There’s a chance they may be able to repair the problem whilst under the same GA or it may take another operation depending on what they find. Either way it looks like he’ll be on TPN for a while and whilst he’s in hospital it will be something we’ll have to learn so that he may go onto home TPN. Another Medical skill to add to my medical bag of knowledge.

Also whilst he’s in hospital we’ll speaking with an Endocrinologist to ascertain what can be done to fortify his bones. There was a preliminary discussion of IV bisphosphonates which is a group is drugs used to strengthen the bones and commonly used for woman going through Menopause.

What’s causing all of this you ask? Well the bone weakening is a common side effect of Chemo but the bowel blockage is another case of “well we don’t usually see this but………”.

This admission is obviously disappointing for us as a family, as over all he’d been going quite well and we were enjoying trying to return to normal family life. Here’s hoping the stay is short and the problems minor.

In the meantime here are a few pics from the past month.


The little guy not shy of a selfie

Isabel’s weekly weekend sleep over in Ed’s room

Tea anyone??

A couple more selfies


Before we knew of the stress fractures in the pelvis and lower back

A clinic visit, one of the perks of the Oncology Clinic



4 thoughts on “A return to Hospital

  1. little Ed you are such a trooper and how handsome do you look with hair. gerogeous!! always in our prayers, may the force be with you as you travel along your journey , angel and gods blessings always xoxo

  2. Hope this stay can shed some light on the bowel issue. Many kids with NPC also experience some bone loss, so another double whammy for him there. There is also a possible link between NPC and Chron’s Disease, so consider that too. Good luck and love the smiley pictures!

  3. Breaks my heart reading this post to think his little bones are so britel , what a soldier you are Eddy, and boy oh boy what an amazing mum and dad you have, daily living with this and giving you the most amazing love and care that you so deserve, there should be an honorary medal for this beautiful family and the bravery they show every minute of the day with this “ALL” journey they have be placed on. Always thinking of you guys and cannot believe that that little man smile still bounces off that little face and hits me fair in the heart even when he is obviously in incredible pain. Stay strings guys, because you haven’t got much choice to choose anything else sadly xxxxxx
    Ps: the pain tolerance of most NPC patients is extremely high from knowledge I have from other families … Suppose that’s the only good thing about NPC hey! Xxx

  4. Hope u feel better soon Ed xx was so lovely so see u last week at home x ur such a brave little boy xxx lots of big hugs to u xx and look forward to seeing u home again soon xx god bless little fella x x

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