Pushing onwards

On ward rounds yesterday they decided that daniel was ready to be tried off CPAP all together which completely contradicts what had been said a couple of days before when they said they will need to give him a lot of support with his breathing. Needless to say jules didn’t feel he was ready for it now did I when she told me. This meant that he was making the leap from 12hrs a day off in 2 shifts to now a whole day, just a leap 2 far in our opinion. He was also now up to 30ml feeds which seemed again to be too much and just appeared to be rushing him. When i got to the hospital at around 4 danny was out with Ju having a cuddle. She passed him to me as its so nice to hold him without the CPAP, after about an hour he coughed and threw up some nice brown stuff all over my tshirt. Fortunately i had a change as i was staying the night but any other day i would have been left in a rather bad looking tie-dye shirt. After this and the colour of his sick they decided not too feed him until his stomach settles down a little. By the time evening came you could see that he was really starting to tire as his respiration started to go up and his sats kept dropping, so we asked that he be put back on CPAP to give him a rest. In total he’d he about 16hrs off which for a little man that had all he has then thats not too shabby at all.

Not a happy bunny

During ward rounds they have basically said once again that things are to continue the same as there is nothing new to report. Danny has been really agitated all day today, not so much crying all the time but been real niggly. While I was there he started to get a bit off so I picked him up and had him cuddled up with me, after a short while he settled and eventually fell asleep. After about an hour he started to get agitated again and I ended up having to put him back to try an settle him. In the end they had to give him paracetamol to settle him at which he just chilled and went off to sleep.

A little experiment

I decided that we should perform a little experiment. What I’d like to do is get a feel for all the good folks out there that are tracking our little boy’s progress so here it is, it’s a map from Frappr.com and you can just add yourself on the right side.

Waiting to exhale

At 5am this morning Daniel decided that he was going to stop breathing and the nurses had to "tom thumb" him to get him back up.  They said that he "decided" that he was going to stop breathing but we think that he stopped breathing due to being put in a seat which hutched up his throat and thats what caused him to stop breathing, thats what we think for what its worth.  Other than that he's been really unsettled and has spent most of the day sat with Julie.  They are still continuing to feed him as before increasing a little every 12hrs, he's been a bit less sick today but this may be down to Julie using some of the milk that she first expressed in which case it will be thinner and theoretically more tolerable.

No change

Well there's really nothing new to report on little Danny's progress.  They doctors have increased his feeds to 16ml every 2hrs (I believe).  Other than that he's been really settled all day, apart from when I was there which is just typical.  On the flip side come Wednesday Julie will have been in hospital for a whopping 10 weeks, looking back now I don't know whether I can remember what it's like to live together. 

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Going public…..

For a couple of days we decided that we were going to change this site to a "subscriber" only viewing, which meant that all of our thoughts, hopes & fears were behind closed doors.  But then we thought about how we felt when we first discovered that Danny had a Congenital Diaphragmatic Hernia and how little information there was out there about it and how this just fueled our fears. Because of this we have put the whole site back open to the public in the hope that if we can just give one family the insight and the knowledge that we have now got from all of this, if we can help just one person then it is worth it.
To this end please feel free to read all that we have, tell your friends and spread the word.  Let this information help others and if you are in the same situation then please do not hesitate to contact us.

Yours,

Rob & Julie
info@potter-tate.co.uk

No Change

There has been no change to little Dan today.  His still continuing his feeds and he is also still being sick from time to time but the doctors say that this is ok for now.  We have to see what will happen on this though it was expected that he would be a "sickey baby" as he will suffer from reflux due to his condition.  Julie has just called me for my update and she's told me that she tried breast feeding him but bless him he didn't know what to do.  Seems unless its in a plastic tube then he don't know what to do?!

Getting bigger

At Danny's weigh in today he is now up to 6 and half pounds, though they are going to re-weigh him tomorrow to make sure it is right, it goes to show that he's growing now.  This is probably down to the increasing amounts of milk that he's been having this week though now he is starting to be sick again and his asprisk, the stuff drawn from his stomach, have turned deep brown again.  The have said that they will be keeping an eye on him to see what happens with it, if it continues then they may have to consider passing a "NJ" tube again which passes straight to his intestines.  He still continues to have time off CPAP, he was off for over 3hrs today and most of that was spent cuddled up to me

Moving onwards

These last couple of days have seen Daniel make excellent progress.   He has started to take progressively larger feeds amounting to 14ml every 4hrs as of today.  He is still being a little sick from time to time mainly when he has pulled the tube from his stomach or when they have to replace the tube.  And it's not just his feeding he has been spending an increasing amount of time off CPAP and on a canular oxygen feed at a very tiny quanity of oxygen.  Yesterday he spend around 7hrs off his CPAP and he handled it really well though towards the end of each session he was getting tired but he did really well.  If he continues well with his feeding as he has done then he will be able to move onto demand feeds and much larger amounts.

Improving but still worrying

Danny has improved again today although he has still been sick after feeding but this time, unlike EVERY time before, they want to continue feeding him.  Don't know what makes this time so different but it would appear it is.  While I was there this evening I'd had Danny out for a cuddle and Tom came through wanting a drink so I put Dan back in his cot and went off to get Tom a drink.  When I got back Danny was really crying and his CPAP (oxygen) was in his mouth and should have been on his nose.  The nurse who was in the room did not evan take a blind bit of notice of him, I mentioned this to the other nurse in the room when she returned but there was not much she could do.  After I'd left Julie texted and told me that when Daniel "de-sated" down to 68%, should be between 85% – 92%, the same nurse simply came over (eventually) and silenced the alarm and walked off without turning up his O² which is standard practise.  Needless to say the staffing levels are just as bad and as such Julie has said she is not going to bed tonight and she will spend the night down with Dan.