'A Good Day'

In the words of Dr Peter 'it's been a good day' for Noah today.   Things are continuing to improve and there are lots of ups and downs during the day, but mostly Noah is improving very slowly.

The morning rounds are huge with around 11 people all standing at the end of Noah's bed discussing how things are going and making a plan for the day.  A nurse asked us if we were comfortable with having so many people there at once and I told them we usually have that many do the rounds just once a week at the LGH, but it was actually really nice and reassuring to have so many people there to want to help Noah get well again.  The rounds always include the doctors, nurses, physios, dietician, pharmacist and anyone else they think needs to discuss Noah's treatments that day. 

Aaron and I are so impressed with how they include us in their discussions and make sure we know what is going on, what the plans are for the day and if they are concerned at all about anything, and what everything means.  We really appreciate that they are so honest with us and tell us the good and the bad as it makes us feel a lot more comfortable with how things are going, as we would rather know than just stress and wonder what's happening.

They had been a little concerned that the vent tube that Noah was intubated with was a little bit small as there was a slight leak.  They decided to change it today and did it right in the ICU and said it went very well and was easy to do.  Since the tube change he has needed less oxygen and his sats have been good so they are really pleased with how it went. He is now down to 30% which is great as he was on 100% when he was admitted on Saturday.


Noah's blood pressure has also increased which is great as it has been too low.  This meant that they were able to decrease the medication to increase his blood pressure, but doing that caused his temperature to drop too low, so they have been actively heating him up with a heating blanket which is filled with warm air.

His seizures are almost totally gone and his urine output has increased as the day has gone on which is great, as they were starting to become a bit concerned about it.  During the morning round I told the doctors that I know it's the least of his worries, but I was worried that he hadn't had any bowel movements.  It's something that I'm ALWAYS trying to keep on top of at home and know how many problems it can cause if he's constipated (vomiting, seizures from being stressed etc) so they said that they would start looking at giving him something extra if he hadn't gone later today.  The doctor laughed and said he knew I would be worried about it as I keep reminding them every day how important it is to make sure he gets his bowel meds. They have been great in that they have been happy to give him what we usually give him at home which is a natural herbal laxative.

About half an hour later I was across the hall using my phone and the doctor walked past and saw me and came back and said 'he's not constipated anymore!!! You'll be very happy!'.  Supposedly he had gone right through the bed and the best thing was that I didn't have to clean it up as it takes three nurses to do it - one to steady the tube and keep it in place, and two to move Noah and change him.  The doctor was really happy as he said it is a good sign especially considering how sedated he is.

We had a lovely suprise visit from Bek and her gorgeous son Reuben this afternoon.  I haven't seen Bek for probably around 20 years but have been in contact recently via Facebook, so it was so lovely to see her and for her to meet Noah and Aaron.

Aaron and I continue to be totally amazed by all the staff who work in the ICU.  They are flat out all day doing something, even though there are two nurses on the whole time with Noah.  They never leave his bedside and are always explaining to us what is going on and what they are doing.  There is so much that they all need to know with so many machines, medications and things going on at once. 

One of the nurses on the afternoon shift was asking us a lot about Noah's condition and what caused it and how old he was when we found out.  She then asked us if we have community nurses come to our home and when I told her that we didn't she said that she was amazed that we could care for Noah for so long on our own.  She was also surpised that this is Noah's first admission to ICU.

During the day the doctors got some sputum sample results which showed that his mucous showed the bacteria serratia.  It's a difficult bacteria to treat like pseudomonas which Noah has had for years, but they know it is sensitive to bactrim, so have started it up orally and he is now on three antibiotics.  They hope to get more test results back over the next day or two.

Noah's lung still needs a lot of support and the doctors said it's still 'days' until they can think about taking him off the vent, but they said that infection markers are on the way down in his blood results so they hope that he will continue to improve in all areas.  They have tried to wean him off more of the sedation today but he didn't cope so well so had to put it back up a little, but tonight when Aaron and I went to say goodnight his eye lids flickered a few times as I was talking, and I'm sure he knew that we were there. 

Aaron and I are coping well and are actually 'enjoying' our time together with just Noah as much as you can when he is in ICU.  We feel really comfortable taking breaks and leaving Noah in the hands of the nurses and doctors while we go out for walks and to get some air.  I also got to have a nap this afternoon.  It's so nice being in the hospital in our own space, knowing Noah is being cared for so well and is just up the hall. Thanks again to everyone for your text message, emails, comments on FB, messages and love shown to us and also our boys at home.  We wish we could reply to all of you individually but just want you to know that we are reading everything and it is helping us to know that Noah and our family is so loved and supported.