not long after my last post they reported back that the infectious diseases dept still did not want him to start infliximab before completing his vaccination course but could reduce it to a 2 month course. So it was decided to try the elemental feeds again and see if that reduced the inflammation as it did before and buy him some time as it were, as he was still bleeding an increasing amount of blood. So we decided to start after Josh's party (see pics below) Monday the 13th.
Since he'd been drinking the formula since last years diagnosis we hoped he would managed at least initially without the tube, he started out ok but not overly impressed but by Friday was taking in very little, 2am friday night/saturday am he woke up and was sick on and off til 6am. In the morning he seemed ok but not wanting his formula milk, unsurprising we thought and let him have water and juice. he was ok but tired all day but at 4pm started being sick again. We called GOS who said to take him to our local a+e to check for dehydration, but whilst there he got more sick and was unable to pass their 'fluid challenge' 2.5ml(1/2tsp) every 5 mins, so they admitted him for rehydration. Around this time he also started to bring up flecks of blood in his vomit. Whilst we waited for admission etc he got more and more sick with a lot of blood in it so they changed he plan from ng tube to iv for the fluids and to place the tube but with a bag which empties is stomach 'in case of a surgical need' as they bluntly told us.
After a middle of the night xray, placing the tube, putting in a canula which he alternately screamed and slept for as he was soooo tired, anti sickness meds and antacid medication he finally stopped being sick around 1am and had a restless night's sleep. The next day mid am they cautiously started him on fluids again, slowly taking him off the bag and the iv, but did not want to start him on the formula until his blood results were back as they were previously too high. We got to leave around 10pm and he has been fine since just recovering his energy and building up volume of formula again. However he will not drink the 'milk' any more so is being tube fed, but possibly due to start a different formula. Pump does not arrive til monday so this is an even more laborious process than before (takes around an hour to complete 6 times a day) with the same issues as last year of when do others eat? how do we cook as the smell upsets him?
Since he'd been drinking the formula since last years diagnosis we hoped he would managed at least initially without the tube, he started out ok but not overly impressed but by Friday was taking in very little, 2am friday night/saturday am he woke up and was sick on and off til 6am. In the morning he seemed ok but not wanting his formula milk, unsurprising we thought and let him have water and juice. he was ok but tired all day but at 4pm started being sick again. We called GOS who said to take him to our local a+e to check for dehydration, but whilst there he got more sick and was unable to pass their 'fluid challenge' 2.5ml(1/2tsp) every 5 mins, so they admitted him for rehydration. Around this time he also started to bring up flecks of blood in his vomit. Whilst we waited for admission etc he got more and more sick with a lot of blood in it so they changed he plan from ng tube to iv for the fluids and to place the tube but with a bag which empties is stomach 'in case of a surgical need' as they bluntly told us.
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