They won't cook in there!

We have never felt fatigue and tiredness on this level before. Hardly able to string a sentence together and concentration levels at an all time low. George is having a morning from hell, we egarly wait for the clock to strike 0600, George can have more paracetamol. Natalie cradles George in her arms, rocking back and forth trying to settle him whilst I go feed the animals and draw some paracetamol. I return to the bedroom paracetamol in one hand, George's feed in the other. "What's that for?" She asks..... "George's feed" I reply. "Since when has he had a 6am feed?" George hasn't had a 6am feed for months. Our heads just aren't thinking straight and we are on autopilot but with no concept of time. A few hours later we are on a teams call to the hospice. The staff are visibly upset from what they hear. George is much loved by the team and our wellbeing is always at the front of their mind. Emotions are high and the hospice decide crisis management is needed. We agree but are saddened to have yet more time without George but we can't continue with the way things are. The call ends and reality hits, we are both upset at the prospect of nights without George. Natalies birthday is rapidly approaching and the the thought of no George saddens us. Natalie gets her head into her laptop, her work provides a welcome escape. Shortly after I recieve a Facebook message.... its an old RAF colleague offering kind words of support and a generous donation of clothing from his families company Www.lovebeebaby.com. We are experiencing a lot of kind words and good will which is helping to balance out our anger and frustration towards the world. As lunch approaches I heat some jacket potatoes in the microwave, only nothing seems to be happening and I've lost the potatoes. I'd only gone and put them in the bottle steriliser. "They won't cook in there!" We laugh it off, but what state are we in? we ask ourselves. The hospice call to confirm George's stay, he will be admitted in the morning. Currently he is on his last tub of formula. More will be required to see him through his stay. A prescription was sent for more tubs on Tuesday so should be waiting at the pharmacy. Natalie calls the pharmacy to see if they are in "We haven't received a prescription" she's told. What a nightmare. Several phone calls and numerous minutes spent on hold it would appear we should have some by Saturday. By late afternoon an email from the hospice hits the inbox, "we are unable to take George on the date requested" the cots are in use..... London trip is now off until we can find another convenient date. We will wait out on that one as the hospice are trying to pull out all the stops and fortunately for us they usually come good. As tea time approaches George settles and we decide to try get some shut eye. We retire to the bedroom. George is gently placed in to his next to me crib. As his head his the mattress, his eyes open, he scans his surroundings..... oh no! Off he goes. 0-100 in the blink of an eye. Let's go and have an evening of passing George back and forth we decide. This is where we find ourselves now. Several hours into our marathon. George unable to relax and sleep. The frustration is apparent. Poor little bean. We have both decided to stay up to offer each other support safe in the knowledge that its one last night. How bad does that sound? How guilty can you feel as a parent? It's horrendous but we are on our knees and worse of all George is uncomfortable and suffering. This can't go on. More donations have been received today and again we are extremely grateful. Thank you all!