Yet again!

Yet again Shay has been poorly. After the last time we thought we might have a few weeks grace of Shay being healthy.
It started of with Shay vomiting and unable to keep his food down. At Shay's hematology clinic we collected a urine sample from Shay as he was also in great pain when passing urine. They redone his bloods as the week before it was 9 and Shay did not look like his Hb was 8 let alone 9. His Hb turned out to be a low 7.3 a quick phone call and he was booked in the next day for his transfusion.
Shay's transfusion went without a hitch I can honestly say that he enjoys the experience now and loves all the fuss he receives from the doctors and nurses.
The next day we received a phone call from his GOSH saying Shay's urine culture showed a bacterial growth of EColi. Panic stricken we phoned our local hospital who wanted to brush it under the carpet saying maybe it was a contamination in his urine.
The next couple of days was absolutely hell for us. Shay's Metabolic care team knew absolutely nothing about Shay's urine growing the EColi bacteria. We were told that Shay needed a full check, full blood count looking at specific things because of his Metabolic disease and also a urine/stool sample all to be done immediately. Our local hospital has not bothered once to contact the lead consultant in Shay's care to ask for advice. We made contact with his metabolic Dr who gave us the information that we needed to pass onto the local.
So you would think now we know what has to be done for Shay it would be easy. No, hospitals are never easy. Arriving at our local we were told that Shay could come back tomorrow for his bloods and there was no need to do it until then.
Alan had to refuse to leave the hospital, I got on the phone to the head consultant and within 5 minutes the ward Doctors attitude changed completely towards Shay. The consultant I phoned was on the phone to the ward immediately after my phone call.

Shay's urine did come back a 2nd time with a EColi growth and he was on meds for a week. He coped extremely well with the infection and surprised us all at his quick recovery.

I am extremely angry in the care of Shay. What happens when something is drastically wrong with him? Supposing he suddenly goes into Metabolic crisis will these Doctors really know what to look for. Metabolic crisis happen more often in people with certain metabolic disorders (some fatty acid oxidation disorders, amino acid disorders, and organic acid disorders). They are often triggered by things like illness or infection or going without food for a long time. If it is not treated straight away it can lead to breathing problems, seizures, coma and sometimes even death can occur.

The future of Shay's care is an enormous worry now. Waking in the middle of the night has now become a regular occurrence with my head bursting with worries for the future of our little boy.