Things didnt go according to plan this year.... the week before Christmas Henley was off school for the whole week with a bad cold - runny nose, very chesty croupy cough and high temperatures. As luck would have it, that week co-incided with our 6 monthly pulmonology visit, so we got to see Dr S. and he gave Henley a prescription for pulmicort, albuterol (2 medicines we always have plenty of anyway and were already giving him) as well as some steroids and antibiotics. He seemed to be doing much better, but all of a sudden Skye got sick too.
The night before Christmas Eve, Skye's O2 sats were 94/95 overnight - lower than usual, but what you would expect for a bad cold (she still has a pulseox at night). On Christmas Eve however, I put her to bed around 9pm and by 10pm I could not keep her sats above her alarm level of 90, depsite much repositioning and several breathing treatments... by 10.30 I decided to pack us a bag (I know how this goes...) and head off for the local hospital.
They were excellent, but of course the first thing they always do is put in a line, so that got Skye very upset as she then had her arm on a board. Next they gave her a more potent breathing threatment and gave her IV steroid, took blood, nose & throat swabs, all the time saying 'lets get you out of here as fast as possible'. By 5am they decided she had not improved and she was already on 30% oxygen and we were waiting for tranport to Florida hospital Pediatric ICU. I followed her in the ambulance and by 7am she was in a bed in the PICU up to 70% oxygen via humidifier to the trach and looking very pale. As this was the first time Skye had been in hospital since the NICU I couldnt leave her so we had Christmas day amidst all the moitors and beeps that go along with an intensive care unit. The nurses and doctors there I thought were really good! They just let me get on with looking after Skye, suctioning her when she needed it or de-satted and generally just being her mom and doing the things I would do at home but with oxygen hooked up!
After a couple of days, her oxygen needs decreased and she was wanting to get up out of bed and go play - we wnt for walks around the PICU and everyone told us we shoud be transferred to pediatric now as they had a playroom and Skye was getting bored. By the next day she was needing oxygen at night only and with several phone calls to our medical supply company and a lot of organization by Alicia our urse, they agreed Skye could go home with oxygen for night time use.
So we are back home -- Skye is on a concentrator at night - last night she had 1 liter and satted at 98 or above, so I will try her at 1/2 liter tonight - we used to have a concentrator that had low flow graduations but this one does not - its a half liter or one liter only!
Here are some pictures of her hospital stay.... Starting with day one and ending just before she came home... you can tell she is ready!