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.