Friday, April 25, 2014

Disappointment

We had Sam home for a week then he started vomitting blood .... So that saw us rushing back in suddenly for a 5 day stay while they tried to figure out why. Once in hosp it stopped .. Hmmm. Home for 2 days and then blood vomits start again so we have been back in for last 5 days. He has had a full contrast study (down his GJ), an abdomen ultrasound and a scope and biopsy down his oesophagus. Yesterday Francis and I met with the gastro team to discuss the findings and to make a plan.

With my non medical brain I will try to make sense for you what was said. When the small and large bowel were connected, there was a big difference in their size. The small bowel was much wider then the large bowel. Having different circumferences was tricky surgically but not impossible. It was hoped the large bowel would stretch and adapt once it had milk and gastric juices flowing through it. Sadly, probably due to Sams underlying condition of undeveloed colon/weak muscles, the pressure of the bottleneck caused the widest bit to stretch significantly wider and cause him discomfort and huge bloated stomach. Sam is now not tolerating any GJ feeds and is on 100% TPN 7 nights a week. This is a huge step backwards for him. There are a few potential plans, all with pros and cons. The plans all involve further surgery as it is a mechanical issue that cant be helped with medicine. Option 1 is to reverse the surgery and reduce the pressure by giving him back his ileostomy (poo bag). They hope the release of pressure will help the now overstretched bit of bowel to re size - but no guarantees. Option 2 is to surgically alter the wide bit of bowel and hope having it the same gauge as the large bowel it may work. Option 3 is to just go home on total TPN and see how we go.

Currently we are still in as he is losing a lot of fluid either by vomiting or when his G tube is on free drainage. These losses need to be replaced which requires him to be hooked up to a pump for much longer. Due to his delicate fluid balance etc, they want Sam to have had atleast 3 consecutive days of less than 300 mls so they can add this fluid into his TPN. Unfortunately his losses are fluctuating between 400 and 600 mls. However if this continues they are happy to teach me fluid replacements (plus adding potassium to the bag) if Sam continues to need fuctuating replacements, just so we can be home as a family. Initially I was anti this idea as I want our home to be home and for the girls to have a non-clinical house.... But if it means we can be a family we will entertain this idea if our stay continues indefinitely.

The blood vomits has been caused by his gut not absorbing oral omeprazole (reverts to IV in hosp), so I am learning making up and administering daily IV meds so we can manage this at home. We are disappointed, as both the small and large bowel were individualy working very well. Sadly once put together their collective weaknesses have put more strain on bis system that it can cope with currently. The bowel is very complex so all teams are still hoping if we wait a little longer improvements may happen. They arent rushing in to further surgeries as the risks are high and we need to be sure of where we go from here. Bottom line is always quality of life for our little man. He continues to be the happiest funniest little diamond you ever did meet. We are so proud of the girls coping with tag parenting for the best part of 8 weeks now. As always, friends and family loving and supporting the girls which is a tangible support for us. We are disappointed and sad for Sam. But we are peaceful and hopeful and not despondent... We continue to draw strength that God can do immeasurably more than we could ever ask or hope for. X

Tuesday, April 15, 2014

Ohhh Poo!

I arrived home two weeks ago to our kitchen table laden with all things poo - a poo cake, chocolate covered licorice droppings, chocolate biscuits, choc sauce, chocolate cup cakes with flies on etc et al... in celebration of Sams new pooping status.  Created by a caring, fun and lovely bunch of friends that have supported and prayed for Sam and us through the years.

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The week at home was a challenge as Sam would not/could not pass any wind or poop when he was awake.  He would go to kindergarten and charge around at home with the girls like usual, but with a big barrel tum.  When he was relaxed during sleep was the only time he would poop.  He would wake distressed as it would have filled his nappy, shot up his back and he would be lying wet and dirty.  Due to having a CVL line and 2 renal drains, having liquid poop on him was not ideal.  So there were plenty of 2 am bed and boy change after a quick bed bath... all this being done with a half sleepy boy that just wanted to be dry and the light off now!  This would happen once or twice a night... that is until 2 night ago when he woke having not pooped at all.  We had a clinic appointment at Starship anyway, so we headed in.  As I pulled in to the car park Sam vomited blood!  It was dark brown old blood - not fresh red, but still it was alarming.  At this point I figured that our 30 min appointment would turn into a full blown admission.  As we waited for our clinic he continued vomiting blood.

So the consultant agreed that something was amiss for things to be coming up north rather than heading south, so we were sent to the Childrens Emergency Department to be admitted.  At this point I found myself overwhelmed.  I think it was the combination of the possibility that Sams bowel is not functioning well, tiredness and the frustration of having to be sent back to step one for an admission. As the nurse asked me in triage for Sams medical history and why we had come in today I stared at her and said, 'My son has gastrointestinal failure, damaged kidneys and 17 other things wrong with him'.  I explained to her that it is insane and heartless to have to make parents state the awful condition their child has, again and again and again..... she explained that the information is in the system but it's only accessible after the patient has been booked in.  Being a systems organised kind of person (my house doesn't count!) it doesn't make sense on any level to me that medical personnel recreate the wheel when a simple IT solution may be all that is needed.  There is something intensely upsetting having to think through, formulate, then hear yourself explain your sons awful medical condition.  I do think the system could be improved, but as I write this, maybe I'm just trying to pin my living grief on something, when the reality is that no matter the system the underlying sadness is always there ready to rare its head when a set back sets in.

Anyway, after the tears and setting us in to our room in CED we went for two lots of xrays, blood tests and urine samples set off.  We got up to the ward and after surgical and gastro pokes and prods Sam had his G tube put on free drainage.  The outputs had turned now to lime green (bile).  Before we went home after Sams surgery he was losing 120 mls in 24 hours - Sam lost over 600 in 12 hour period overnight.  The good news is that Sam pooped over night again (300 ml) and he has also done a wee poop again tonight - so things are still going through, but not fast enough and something is up. The plan is that maybe tomorrow we might start him on 5ml milk/hr to see what happens.  Hopefully tomorrow or Friday he will head back to radiology for a contrast study, this time with the contrast going in his stomach and watching it go down so the teams can really see what is happening.

I leave you with 2 humorous tales - for it is not just Sam that requires medicine and we all know that laughter is a good dose.

Laugh 1: Yesterday as we waited to be checked out the 'tea lady' asked me for my drink order.  I asked for a strong coffee with milk.  I watched her make it and was surprised as I saw her putting heaps of milk in it.  She stirred it and passed it to me and said, 'now, would you like a drink too?'  There was only Sam and I in the room.  Out of habit I said, 'Oh, Sam doesn't eat or drink food'', then I thought, 'wait a minute - he's 4..... what 4 year old drinks coffee?'.... at that point I got the giggles and said I would be fine drinking my sons milky coffee.

Laugh 2:  Sams surgical wound looked a bit red and angry last week.  I had a scheduled home care nurse visit who was also concerned and suggested it needing looked at.  I let my fingers do the walking and took a photo on my iphone and emailed it through to Starship.  This is a practice I have been using to save unnecessary trips or I can get a solution to a quick and easy problem with the team 'seeing' Sam without seeing him in person.  I have sent through all sorts of photos recently - pooey nappies, urine specimens, vomit photos etc.   Now, our girls use iPads at school and we have linked their accounts to our email account (which shows on my phone), so we can guide and help them in the dangerous land of internet.  In my total ignorance of technology, yet facade of responsible parenting, imagine my surprise when Candace storms in the door recently after school, mortified that photos of Sams nappies, bile bags, poop and wounds are juxtaposed with her happy school camp shots for all her friends to see!  I thought that was pretty funny - I don't think Candace shared the humour and just rolled her eyes and shook her head in disgust at my computer illiteracy.

Tonight Sam is sleeping well beside me.  We are still hoping and praying that his bowel will wake up, that any adhesions will melt away, that the muscles in his gut will get stronger and push the wind and nutrients through his little body.

As ever we are so grateful for the support and care - Aunty S and Uncle G have had the girls this week unexpectedly, my kitchen was cleaned and tidied beyond recognition whilst in hospital yesterday and we look forward to Francis returning from the UK on Thursday...... It is looking like we could be in over Easter. In the words of our daughter Jasmine when aged 5....'I don't get why a rabbit is carrying a basket of eggs - they're mammals so they don't lay eggs. I reckon someone made it up just to sell chocolate'.  May we see past the celebration of chocolate and Easter egg hunts and revel  in the deep reality of a God that is looking for us....not because He doesn't know where we are, but because He knows where we are.  And He promises to pick us up and hold on to us when we allow......

Happy Easter
X Shirl

Tuesday, April 1, 2014

Home!

Just a quick note to say we got home .... 3 weeks after we went in. Sam still has a long way to go, but general consensus is that it's going to be a really slow process of increasing his feeds.... He is clinically well so we have escaped home for a couple of weeks of normal life before heading back in to try and increase his feeds again.  So he is now only on 5ml/hr x 20 hrs and back to 7 days full TPN. Part of his bowel is very narrow, but the teams are hopeful that with time, a little milk and gastric juices flowing through it could stretch and develop.

So we are adjusting back to life at home and he is very excited about going to kindergarten tomorrow!

X Shirl