As I settle down for a boys night in on the children's ward, I can't help but reflect on what has been an extremely difficult day.
Natalie has not long left the hospital to go home and tend to the dogs.
Hopefully she will get some sleep but it's always difficult when you're apart.
She will arrive back ridiculously early in the morning. You would think the reason behind this would be to see her boys and to a large extent it is, but the reality is that if she doesn't she will spend most the morning looking for a parking space.
The day started with so much promise. George's Hospice discharge was scheduled for 1030am which is standard. We were planning to be home for lunch time and go for a nice family walk in the sunshine. This didn't materialise.
Shortly after arriving at the Hospice we were notified of the results of a meeting between the specialists and the hospice medical team. The decision had been made that with our backing they thought it would be best that George was admitted to Hospital. Absolutely devastating, but we need to get him pain free. Our hearts sank and tears ran from our eyes, but it's all for the best.
I was relieved that someone else would be taking care of George overnight and explained to the hospice staff that I didn't really feel fit to look after George as I am so fatigued as is Natalie. We only lasted 4 days at home following his last discharge. It has been so difficult emotionally and physically. Feeling helpless and that you're failing as a parent. People say you can only do your best and my God are we doing our best but it just doesn't seem good enough.
Whilst driving to the hospital I told Natalie that I would feel guilty leaving shortly after his admission but due to our fatigue levels we would need to and she agreed.
That soon changed. A bed wasn't found for George until 7pm. A lovely afternoon was had sat in an examination room with George to protect him from the threat of infection which is one of the biggest threats to George's life.
During this time his paper work was completed. Just for the record I am the most fatigued I've ever felt in my life and feel nauseous from the lack of sleep but I think my hearing is still OK, but I did question it.
"Does George identify as Male?"
"Does George drink alcohol?"
I couldn't believe my ears. He's a 5 month old baby with boy bits and feeding on an NG tube. I hope he still identifies as Male and I'm pretty sure I've never hooked up a tin of Stella to his feeding set.
Finally in his room on the ward, I help settle Natalie and George before leaving to fetch an overnight bag and to feed the dogs and let them out to do their business.
George requires a parent to stay with him overnight and tend to his needs including administering medication, only you need to request his medicine cabinet is opened to allow you to do it. Not an easy feat when you can't find the key holder.
Having come directly from the hospice we didn't have fresh supplies, only what we had at the hospice. If you've read previous blogs you may know that George has a 16 hour continous feed. His bottles only have a 4 hour hang time, so fresh formula has to be made up and bottle changed every 4 hours.
We asked the nurse checking George's vitals if she could boil some water and if we could have a bottle for his feed. "I think we have One of those." One? The neonatal ward must have plenty? "Oh no, they were taking ours earlier and I'm sure there was just one left, I will try get it for you" fortunately it was there otherwise I've no idea how George would have been fed.
We are now settled in his room on the ward. George is struggling as he does but it's OK, Daddy is looking after him.
I will say no more on the matter for now but I'm without my tag team partner and I sincerely hope she's managing to get some sleep. This overnight stay just seems so pointless right now and is just helping to run N
atalie and I that bit further into the ground.
Hopefully they come good and the consultants get him sorted and since his admission George has been put on more medication so it's not been totally pointless, but it is definitely frustrating.
UPDATE
it's now 0450. George has had an extremely unsettled and pained night. Siezure activity has been the most severe that I've ever witnessed. George finally fell asleep at 0400 and will no doubt wake in a few mins as I administer his 0500 drugs.
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