Last night Dylan stopped breathing briefly in his sleep, this was the third night he had done this likely due to his virus causing restriction to his airways. His sats dropped and we had to turn his oxygen up but even then he was still struggling. The doctor came to examine him and he woke up and had a huge coughing fit which required a nebuliser. He then had ANOTHER chest X-ray for the third night in a row which showed infection on his chest but no pnemothorax which was good news at least. After the nebuliser he managed to settle back off to sleep on 0.5ltr of oxygen to help keep his airways open. Although he was so funny and silly after the nebuliser so settling him back off to sleep did take some time!!
Respiratory have today decided to keep him on 0.5ltr of oxygen.. despite him being sat close to 100% saturation on it and clearly not needing it whilst at rest it is more to help him during his recovery process and physiotherapy rehabilitation which may take months. He has lost a lot of strength and has been on a lot of medication so his reserves are already low let alone when we are pushing him to walk, crawl and play, so this should help him get less tired and breathless. It's not a permanent thing (we hope) and it isn't a massive amount of oxygen for his weight either but it should aid his recovery and is then there in case of emergency or issue such as last night.
We have been referred to Derby wheelchair services to get an actual wheelchair for Dylan now as opposed to a special buggy which will make the transport of oxygen easier when out and about. It should also encourage him to only use it when needed and not rely on it the same way he would a buggy. We are also looking into a seat to clip onto the pram we've brought for when Logan is born, but I do have a baby sling for the school run etc.
I am happy that Dylan will be coming home on oxygen when he is well enough to do so, this puts my mind at ease a lot as I genuinely think the use of oxygen on Feb 10th would have saved him getting in such a bad way. It cannot fix a serious pnemothorax but it can help a small one and buy time to get to a hospital safely without the need for ventilation.
I am weary though of how difficult that coupled with Dylan's low mobility will impact daily life once Mike returns to work.. simple tasks that I took for granted before will become much more difficult and everything will require a lot more planning and careful consideration but I'm positive we can get through it. Compared to the thought of him never coming home over Easter, even the idea of it is amazing!
It's my night at home tonight after three nights of staying at the hospital I am exhausted. I pray for a smooth night and that he doesn't have anymore sleep apnea episodes and worry Daddy too much! He has already had a nebuliser before bedtime so hopefully that will help him breath overnight and get a good night..
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