Monday, June 29, 2015

On the improve!

It's Monday night and I am at home with the girls and Francis is doing 'boy time' in Starship. 

Today Sam improved dramatically and is now on 1 litre of oxygen.  He is back on the ward and has had physio input, so he is having to puff and blow on a pipe sitting in water with soap - we call it the car wash and as he keeps blowing the bubbles spout out the top onto his cars.  It tires him out, but it causes him to cough and his chest is clearing.

Unfortunately one of his xrays didn't just show that he had pockets of pneumonia, but that his central line that is embedded in his chest and through which he receives his nutrition has moved!  So instead of it going into his main artery just above his heart it seems to have migrated and is in a smaller vein in the other direction.  It could have been like this for months, but as they know about it the can not use it.  So he has a temporary peripheral line in his arm and he having 24 hour feeds through his arm (can't run it at the higher rate/volume as when in the big artery).  The central line in his chest needs surgery to move it back but they can't do this until his chest is clear.  So it is a bit of a waiting game.

Jas turns 14 on Thursday and she has already figured out that it will be a split birthday, so I will be with Sam tomorrow night so Francis can catch up on sleep and I get to be home Wednesday night so I can wake up and do birthday with my big girl - I gave the girls the choice and there answer involved eye rolling and comments about Dad not doing balloons and glitter and party decor as well as although she is turning 14, still at that age where she wants to do party girl things.  The girls miss Sam hugely and Jas is disappointed Sam and Dad won't be here on Thursday morning.... but it is what it is and the birthday will still happen....

Right, off to make the most of a pump free, nurse free, alarm free, oxygen hissing free sleep!
Next blog I will tell you some of Sams very funny classic comments during this admission and have photos. 

Friday, June 26, 2015

A crazy 24 hrs

I was going to upload photos and write a witty post tonight. Unfortunately I am writing to say that Sa is now in ICU.  2 days ago he started wheezing and had a high temp. At midnight I started having that gut feeling that it was serious and at 1:30 I scraped the ice from the windscreen and we drove to Starship. He had 24 hours with hourly ventolin and a chest xray showed some patches. Sam was happy enough. Today his breathing became even more laboured and at 2pm he started on oxygen/nasal prongs. The physio came and worked with him but still he got worse. A full review was ordered at 10 and we started on back to back nebulisers. Every 15 mins.... After an hr of this he wasnt improving so ICU were called. They reviewed him and Sam is now in ICU. He isnt critical but he needs a higher level of care and is now in the right place if he continues to deteriorate. They have just started him on a magnesium infusion and IV subutimol. He is working hard to breath but is very resistant to interventions and he is just plain exhausted after 48 hrs of broken sleep. As we were transferring down Sam asked me to 'call Daddy to tell him', but at 2:30 am I didnt think that was necessary! However I did think of the people who will be awake right now reading this who could join me in praying for his protection, strength and healing.

I am weary of body but not of heart. This is Sams first admission in 5 months which is amazing. Clearly we wish he was home but I am peaceful he is having the best care he could have right now and am so grateful to the myriad of people working with him.

I have a 30 min window now before they want to attempt changing him to hi-flow oxygen and another nebuliser, so a power nap is in order.