This last week we have been at the children's Hospice. It was a much needed break... one we had looked forward to for what semed a long time. It was with much gratitude we accepted an extra night hn asked if we would like to go on Sunday rather than Monday. That day made a huge difference...although I thank God it did not mean we missed a wonderful surprise. (More on that later.)
We had originally planned to spend most of Tuesday in house, ensuring that Eve was happy and confident with the carers, maybe popping into town or to the local shops but then Wednesday we planned to go to the NEC to the Caravan/Boat and outdoor Show. We were quite excited at that prospect...not that camping and caravanning was our plan...not really Rosie friendly holidays but it is nice to look anyway! So we arrived at the hospice at 4 ish on Sunday and settled down to bok the children in. This involves detailing all their care needs and medication and things they like/dislike. Things they must do and things they deffinitely mustnt/ going through all their medications, dosages and timings. It is not something that can be rushed so thankfully there is someone to watch Rosie, and plenty for Joshua and Christina to occupy themselves with.
We had eaten a very late lunch not long before we arrved and yet Jonathan and Rosie were up for jacket Potatoe at 5.30. It gave me and the carers a chance to ensure all the changes and important information was handed over. Quite a lot had changed for Rosie and we had few concerns about Jonathan and of course everything about Eve was new.
By the time everything was rcorded and signed it was almost bath time so we handed the chidlren over and sat down to a late supper and more coffee. Then we headed up to our home for the week, the flat upstairs. Joshua and Christina have a twin room that connects to ours which is a double room similar to a travelodge room with ensuite shower/toilet/wash basin. Joshua and Christina hav their shower room too. We unload the suitcases into the wardrobes and draws and relax on the bed for a while. knowing Eve will be unsure of what is happening we head off downstairs to mke sure all is well. Eve is heading to her room with a DVD of her beloved Winni the Pooh whilst Rosie is already bathed and in her pyjamas eating a oghurt with her medication on. All is well and everyone is happy. The sound of the drums assures us of Jonathan's location in the music room and so, after helping to set Eve's night feed up ready for the night staff we head back up for an early night...our main aim is to sleep this week! The staff know where we are if needed and so we leave them to it.
We had a good night and of course everyone was fine down stairs...waking staff to cope with the non interactive return to bed or Rosie at regular intervals and turning Rosie and fetching a drink for Jonathan...they of course can then go off to their own homes to sleep. New fresh staff are here to take on the care needs, one per child and a few to float and give cover when needed. Two cleaners...both lovely chatty and getting on with the job of removing yesterdays lunch from the windows and floor. A cook in the kitchen preparing the wonderful meals, of course she has had a whole day set aside for menu planing and shopping whilst someone else did the cooking that day. A whole host of office staff are ensuring the appointments are dealt with the post is replied to and everone knows where they should be when. They are all lovely people, so dedicated to ensuring the familes needs are met whilst they are here. Fundraisers ensuring the money comes in, family support staff there to talk to and help with all sorts of issues the families may be dealing with. The house runs well, There is even a model of the forthcoming new build. This is to enable the Hospice to continue to care for those children who live beyond 18. the criteria for care from a children's hospice is a diagnosis that gives a prognosis that the child will not survive into adulthood. However, despite the cleverness of the medical profession they do not hold all the answers. Some children with a life limiting diagnosis live beyond 18...this does not of course mean that all their needs disappear, nor do their families suddenly develop an ability to cope without the support the hospice has offered up until this time. Children's hospices are now reaching out into the area of supporting these families. As such Our Hospice is fund raising to build an adolescent unit. We have good reason to be very greatful for the hope of an adolescent unit. Jonathan will reach his 18th Birthday next month. It occurred to me recently that this would be our last total break! Jonathan will turn 18 and then be allocated time at the hospice in the over 18 slots. Rosie and Eve will still be in the under 18 group and therefore their times will no longer coincide! It was a depressing thought.
Once everyone was up and about it was obvious Eve was perfectly happy with her carer. Smiles and giggles and enjoying everything offered her. We were able to sit back and just observe the goings on. Joshua was desperate to explore the local town andso after lunch we ensured the staff had our mobile number and we headed off to town....The library was top of our list of places to visit and David checked his Ebay and ordered a new flash gun for the camera...having had to say goodbye to his old friend before we came away....I had not realised it was possible to wear out a flash gun!
On Arriving back at the house everything had been fine the children and staff had survived each other! We decided there and then to go to the NEC on Tuesday. So after a not so good night, there is no accounting for a husband who leaves his medication on the bed at home instead of letting me pack it with mine! David suffers badly with psoriasis and has tablets and creams to enable him to sleep without scratching his skin off! So we had a restless night but still wanted to head off to Birmingham. Things seemed OK downstairs and I was able to have a quick chat with both our Family Liason Worker and the Head of Care before we were ready to leave. I made an appointent with our FLW for the next afternoon as there was much I needed to discuss, and the Head of Care managed to alay our fears of Jonathan's birthday meaning an end to our complete respite.
So it was with lighter hearts and very cold bodies we headed out into the cold outside...it had reached -8degrees and the frost on the minibu was too hard to scrape off so a bucket of water was needed to se us on our way. We had reached the outskirts of Birmingham when a text came through on my phone..Tia asking if we were still planning on visiting the show tomorrow? I was soo sooo glad she decided to text and ask then rather than wait until the next morning or even that evening Tia had planned to suprise us on Wednesday and realising we were on our way she decided to change her plans and join us. We had a great time together, Christina and Marnie renewed their friendship and it was just so god to spend time together again. There were some isues over he parking and finding the place and the cost of the food but all in all I think it was worth the hassles to just be together for that short while. The exhibition was good, we spent some mony and saw other things to spend money on, we dreamt and wished and just had a good laugh...one moment???? David quite fancied the long boat....just a mere £500,000!!!! a Boy can dream. We spotted a camper van with a little extra bit on the back just right for Rosie!
All too soon it was time to leave. With hugs and promises to meet up again next month...
Arriving back at the Hospice we discovered Jonthan not so well and covered in a mystery rash and Eve with a swollen throat. Jonathan had aparantly been scratching more and more throughout the afternoon. On inestigation he has what looks distinclty reminiscent of th erash he gets with antibiotic allergy. The doctor was called and we waited!
later in the evening the doctor came to see Jonathan and Eve. He agreed that Jonathan's rash was most likly rug related. He prescribed piriton to ease the itch and to leave out the antibiotic and see what happens.
Fast forward to my meeting with the head of family support. ( I am conscious that although this is helpful to me to write out anyone reading may be nodding off by now!)
There is muh on my mind, since Rosie became ill early in December I have felt very much and very often that she is becoming more frail. Not in an every day laid on the sofa unable to interact kind of frail, but just subtle changes, like she is tired more easily, more keen to sit and be cuddled more often than wanting to be rough and tumbled. She is flattened by minor ailments where once she would barely have stopped long enough to let us give her paracetemol. it is something very hard to define, put into words and accept. However I really get the impression that things have changed for Rosie and that there is change of direction from the battling fighting through everything child to one who is less fighting and more accepting and yeilding. I think we are on a downward slide with her...
Jonathan's reaction to the antibiotic has thrown up a whole host of fears/anxieties/questions. He has developed reactions and resistancies to many antibiotics. he ha also grown some very difficult bugs in his lungs and his bloods, our ammunition list is desperately short now. this long term antibiotic that he has been taking nebulised for many years was specifically targetting the bug he colonises...that is the bug that lays dormant in his lungs awaiting it's oportunity to burst into active action. The colomycin helps to prevent the opportuistic advances this bug makes. Without the prtection of the colomycin we do not know if the bug will take a hold quickly, or be domant for a long time. Do we try another prophylactic drug....there is one other we can use....or do we hold that in reserve for if and when the next flare of active infection lays Jonathan low with pneumonia? There is no right answer!
We tlked through these concerns, and the concerns over Eve's scoliosis, salivary issues and where we go with the options there! It is all in great need of airing but is also draining to face in one sitting. Flowing rapidly from tears to laughter and back again I know I am safe with the Family support worker.
We talk about the allocatd nights respite and the over 18 issue. We re assured that we will be able continue to come as a famiy, there are ways around the problems and that is such a huge weight off our sholders. We also talk about emergency situations, how we make the decision to come straight to the hospice and when to go to the hospital...and how to change our mind and what happens if???
There were no real ANSWERS but it was good to air the concerns and know that people would be there to help and listen and guide us.
it never ceases to amaze me that I can discuss death and decisions around that and come away feeling better! Yes it is emotional and yes we are now left with some big difficult almost impossible decisions, we have discussions to arrange locally and we have people who do not understand to talk with and try to help understand but I feel like I have made a positive change in my emotions just being able to voice my thoughts even when they made no sense!
there are many areas where things are not clearer, no easier no simpler and no less painful but knowing someone is prepared to help us through those is a help.
Of course Friday morning came far too soon and we are home, bac in the real world. back facing the same problems and same brick walls.
thankfully the photographers of the household nsure we have plenty of reminders of the tranquility of the Hospice garden. It wa a bit too cool to spend much time outside this visit, this is a picture taken in milder times.
I do not know what the future holds but I am glad I know who holds the future!
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