5mths, 5k and 7000 miles

Happy 5 months birthday Reuben! Congratulations on the 5 kilo milestone!

7,000 miles. I started to think at about 3am this morning how many miles we've driven from home to Children's Hospital LA and the number is pretty staggering.

Yesterday some wonderful news. Sat down for a long while with Dr Charlie Golden, head resident (Dr who has completed medical school and is in training in his speciality, paediatrics) and we discussed the things that have been on my mind:
- Hearing. Auditory brainsteam response test arranged. Been wanting to deal with this longer term issue for so long but we've been battling life saving measures instead. I feel it's worth a try as there's a discrepancy between 2 MRIs showing no auditory nerves and a previous ABR showing "severe" hearing loss. Severe is good! It means we have something to work with with aids or implants.
- Will Reu require testosterone shots. No, he doesn't have a micro penis like many male CHARGErs. However, will get his op to descend the testes sometime in 6-12 months.
- RSV virus and other immunisations. Arranged.

We have a history with the lovely Dr Charlie. We first him whilst he was doing his residency in the NICU. I remember calling him shortly after being admitted there, in the wee small hours when things were so terribly bleak. I wanted him to assure me that Reu would be still be alive in the morning through the moments when I was begging him to survive, to show us everything he was made of despite the sad diagnosis. Dr Charlie's words were of such immense comfort to me at the time that, on the day I saw him rotate onto the PICU floor, I was overjoyed!

Then the conversation drifted to other issues, when we're going to be discharged from the PICU onto the floor (ward). This has partly been delayed because there was no rush for the bed and because I was away for a couple of days resting at home and sort of begged the Drs to keep him there a little longer so his nursing ratio wouldn't be halved on the floor in my absence. Reu loves company albeit that he's quite happy too to watch a balloon shoot up into the air whilst his eyes nearly come out of their sockets in excitement.

Then onto the issue of our paediatrician. Dr Bob in Santa Monica is a lovely man whom we inteviewed prior to Reu's birth when all was happy go lucky. However, it was a quite different story going into a clinic of well babies and feeling like a curiousity post birth. I know getting over that will come with time. Spending so many months in the hospital, sadly, criticially ill babies and kids become the norm to us in a sense, but not meaning we are desensitised. It's just that trachs and ventilators and wheelchairs and shaved heads and oxgygen being carted around are daily occurances. So, back to Dr Bob. Visiting his clinic with Reu was always a distressing experience. We would, naturally, be stared at as Reu was still on oxygen and I always left the clinic in tears.

So, during a good 45min chat with Dr Charlie, he recommended that we could use the residents programme for our paediatric care as an outpatient including him. I was so overwhelmed and happy about this news I can't describe! and it was especially sweet when Dr Charlie, father of three asked coyly "so, would you like me to follow him?". Fantastic!

I did my first trach suctioning yesterday... video to follow... and I have to say that, other than the scary noises, it's not that bad given we've been suctioning Reuben's nose and mouth for months and have become used to how to deal with secretions. The scary part is in the sterile process of putting the cathetar into his trach, but we're holding onto the fact that it doesn't actually going into his throat, only as far as the end of the trach tube.