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| "can I go home now please?" |
Friday - 25Jan13
Apologies for the silence, I was in hospital full-time from Wednesday as the Mother had to be away for a few days.
We're still there (in hospital). Slowly slowly does the ventilation support come down. Yesterday (Thursday) he managed about 4 hours without any support and that was his limit. He is now on a different ventilation support: we've moved from vapourtherm to lo-flo. The difference is twofold; vapourtherm provides oxygenated moist air at pressure and lolo-flo just provides the oxygen content at atmosphere. The advantage of lo-flo in this case is that weaning him off support can be done more slowly (in terms of percentage of oxygen-enriched air) rather than more sharp steps as vapourtherm would be able to provide. A disadvantage is that it's dry air so it could dry up his airways and so require nebulisers. We shall see.
Today though he seemed - in between bouts of whinging - much more alert, wanting to explore (escape) and play. He's also managed to learn new tricks whilst inside. He's rolling now in both directions and also choosing to sleep on his right which is different. He's always preferred leftwards. We've also been teaching him how to clap and wave. No success with those just yet.
Hopefully we'll be out over the weekend. The criteria is probably a night without support which should happen Saturday night, given he's eating most of what we give him (provided he's not having a coughing fit) and the coughing isn't causing him to vomit all back up again either. Which given that solid food is given to him whilst he's sat on your lap is a real bonus.
A cardiac appointment was arranged for Dylan as he was in. There was meant to be an appointment in Bristol before Christmas as a follow to the scans in July. This has been post-poned until March. So this appointment may take the place of the scan in March. We've not had the results yet, so we shall see. The scans are looking partly for evidence of any coarctation but also pulmonary hypertension but also anything else that looks "wrong". Other than the lack of lung. He's also had further snot tests done - we've not had the results from that back either. We know he's not RSV positive (that was tested earlier in the week) but there may be other nasties that caused this particular bug. There's also interest in making sure that there's nothing underlying in the cause of two (well three including the episode in France) incidents of bronchiolitis in fairly quick succession. Hopefully not.
Monday - 21Jan13
... and we're back in hospital.
Ho hum. Dylan has had a long-standing snuffle which decided now was the time to eveolve into something more creative. A result of that was him turning down solids on Saturday (after a few cough-cough-vomit episodes) and then liquid on Sunday. So we took him to hospital with a respiratory rate ranging between 60 and 80 and a few hours later he was on vapourtherm (oxygen support). Which worked intermittantly. By this morning he was irritiable. So he got some drugs (calpol abd brufen) and some food. Which he kept down. So he got some more an hour later. Today he's had about 200ml of milk and two sachets of food. Probably about half of his normal.
So he's currently on a reasonably high level of ventilatory support, but he is eating and mostly keeping it down. Who knows how long we'll be in for, it will depend on how quickly he can remove his need for oxygen supplement.
Thursday - 17Jan13
Wow. Hurrah for the power of high-calorie formula. Having fallen off his weight curve (0.4 centile) late last year, he's managed to get back onto it within a fortnight. We thought he was looking plumper and heavier and we were right. He's put on about a pound. He's now almost 15 pounds. Hurrah!
Other than that things are progressing. He's no longer relaint on the Mother. The Mothers' body working for once with perfect timing decided to stop producing milk just before her birthday allowing her a dairy-full and alcoholic-fuelled birthday celebration. Many thanks to all those who helped with that both in taking her out and also with Dylan-sitting. Very much appreciated.
Monday - 31Dec12
Well, I wish I'd only put on 3 oz over the festive period!
But really, that's not good enough from the lad frankly. There are mitigating circumstances: he was ill around Christmas. That's a new "ill" rather than recovery from the last "ill". After all the fuss we made in making sure that family was all disease free, we end up bringing our own set of viruses. Sorry! So Dylan had a fever and has been generally under the weather since then, and then yesterday he came down with a cold verging on bronchiolitis or similar. He's got a hacking cough and vomiting phlegm which is as far as our expertise goes. On the plus side he was still eating and drinking so we didn't take him to hospital and actually today he seems much brighter. Which is good. New Years Eve in hospital would be tedious.
We have also installed him into his "room" and more importantly his new bed. It feels really odd as we still have his old cot in our room, but he was growing out of that it. It also means we probably all sleep a little better which can only be a good thing.
