Which way now

Since Thursday’s last posting quite a bit has happened but I didn’t post last night as I wasn’t feeling well so sorry about that.  Anyhow, Friday morning started out with the meeting with the consultant who wanted to discuss what was going to be happening with Danny with regard to the CT scan and GOS. He asked what my understanding was of what was happening with regard to GOS so I explained as far as we were concerned he was being transferred to GOS and that he would be treated from there.  He said that this was not the case and he would simply go down to London to have his tracheotomy performed and then would be returned back to the Queens to continue his treatment.  As I explained and indeed he already realised this was going to be a real problem as we do not feel confident in the services that Daniel received while he was at the Queens recently and what both myself and Julie had experienced with them in the past.  I also explained that of the many people I have spoken to about the Queens very few have a good word to say about it, he said he was surprised at this and tried to reassure me of the facilities.  However as I explained we do not feel confident of the ability of the Queens to care for Daniel while he is in such a critical state because of these bad experiences, however he said that as his ongoing care will have to be done at the Queens that this is something that we would have to get over.  It ended that they were going to arrange for us to review the PICU this afternoon but the PICU never got back to them to tell us what time so we’ve still not been. In Thursday’s ward rounds the pediatric professor for the Queens came to see Daniel and said that to ensure that he was getting the calories he needed they should consider using breast milk fortifier rather than TPN as this had damaged his liver previously from long term use.  However, after yesterdays ward rounds they decided that they would put him on TPN as he might as well get the calories from the TPN, this was a little odd as it contradicted what had been said by the professor.  Julie did question this but didn’t really get a satisfactory answer so we’re not really any the wiser on this one.

Danny had his CT scan yesterday and while I wasn’t there to get the results firsthand the consultant on ward rounds today explained what she understood of it but as she said she is no expert in this area so she was reading from the notes.  What the CT scan did reveal was that indeed his trachea is large and when he breathes in and out it collapse’s greatly, she explained that the cause of it being floppy is unknown but is possibly down to the balloon being there.  However, what it also showed was that instead of his trachea splitting into two (as shown on the right) to feed his left and right lung; his splits into three with the third appearing in the middle.  This third “pipe” then goes off to the upper part of the right lung almost as if the right lung was in two parts.  This, it was explained, was unexpected and the consultant said she had not seen this before.  This once again re-enforces his need to go to specialist centre such as GOS as Daniel is becoming more and more unique as each day passes.

Danny in himself has been quite settled but his stomach has become really distended in the last couple of days, but last night it had just become really big to the point where you can see the vein’s in his belly.  By the early hours of the morning it was observed that what appeared to be milk was seeping out of the jejunal tube that goes straight into his intestines.  On seeing this his milk feeds were suspended until the surgeons could review him today.  When he arrived to review him he said that he thought that what had happened was that as his milk feed was increased his body wasn’t processing it fast enough and it had fed back out, almost like overflowing.  As a result they are going to continue to suspend his milk feeds until tomorrow morning and then review him again to see how he is.  As for the rest of the day, he had been quite settled; the swelling in his eyes is now starting to subside so he doesn’t look quite so much of a bug-eyed monster.  He is also starting to come around as he is not having so much sedation so it’s nice to see him trying to open his eyes again, kinda forgotten what they looked like. So now we wait……again.