We've come a long way, baby.

We’ve come a long way in the last 6 months. We are so grateful to everyone who has supported us during this time. Because of the generosity of a stranger William has a brighter future and we have so much more to look forward to.

HAPPY EASTER EVERYONE!

We wanted to wish everyone a very happy easter. We are enjoying an overnight stay at Grandma and Grandpa's with Uncle Nick too. We all had a lovely turkey lunch and william did some paddling in his wellies in a hailstorm. Lots of chocolate still to be eaten so I had better get back to it!

Good Friday

More antibiotics today through his canula. Great service at Bath today, no traffic, an Easter egg for William and very prompt administration of the antibiotics. We had Andy, Nicky, Hannah, Ella, Great Grandad, Granma and Poppa for lunch toady which was lovely. Grandma and Poppa brought a fantastic colour coded Easter egg hunt. We had great fun finding them and now have bags stuffed with chocolate and coins! (William managed very well one handed due to the splint and bandage on one hand, he is very adaptable) We had a nice call from Alex our Lifetime nurse to check that William was alright after yesterday which was really thoughtful. Yesterday went pretty well despite the long wait. We were on the oncology (cancer) ward in a room with 4 other children (it's alright because they were all infection free and some of them had less of an immune system than William) which was weird as we are used to being isolated. They had fabulous facilities there, a great playroom and even internet access for parents. The nursing staff were also really friendly and just before we left William got an Easter egg from the Radio Lollipop, I wonder if his GOS egg is in the post?!

Line Out!

Arrived Bristol 8am, Line Removed 4.34pm, Discharged 9pm, Arrived home 9.47pm. W well and full of chocolate! Too tired to type more.

No News Today

Hi just keeping you up to date, as Cath said I would. Well William still has a Hickman line Bristol could not find surgery space for him today. So Cath and William went to the RUH for immunoglobulins and antibiotics and got home at five past seven. We have to ring Bristol at six tomorrow morning to see if there is a bed free (which there wasn't at 5pm this evening!) and William will go on the emergency list again. Not sure how he is going to cope with no Jaffa cakes and Weatabix for six hours or how we are going to cope with William not having Jaffa cakes or Weatabix for six hours. A small price to be line free I’m sure, and how hard can it be reasoning with a two year old? The School visit went well; the picture is of a bird feeder made from recycled materials. When you make yours just remember to tie the string tight otherwise all the seed falls out.

Tuesday 18th

Got more IV antibiotics today which was fine. Got a phone call from Bristol at 5.30pm tonight to say that they want to take his line out tomorrow (ok, we don’t need any notice~~! Rob is hosting a school visit in the morning which he has been preparing for for weeks (I know cos I have had to eat a lot of yoghurt cos he wants the pots to make bird feeders) They will ring us in the morning to confirm when they want us!! He will go in for his Immunoglobulins to make use of the hickman line for the last time (next time he needs them, we will do sub cutaneous like we used to) He is on the emergency list so will be fitted in as and when, probably late evening so we will stay in or early morning on Thursday and then we will come home. I am sure that Rob will keep you posted. Bit nervous, truth be told but we will be in safe hands and it will be amazing to have a line free William.

Monday 17th (ooh just realised it's six months today since we were admitted to GOS)

Went to Bath today and got our IV meds no problems. ‘They’ have decided that they want to take the Hickman line out. It was due out soon anyway but it’s easier to remove than disinfect it. We were offered to have it done in Bath but we would much prefer a specialist Children’s Hospital so either Bristol or GOS if you please! (also they have about 6 wards closed with the dreaded Noro virus in Bath at the moment)! So we are hoping that they will sort something out soon between them. In the meanwhile we will continue with the IV antibiotics. His blood results aren’t quite as good as they have been but I think that that is only to be expected after all despite all outward signs to the contrary he is fighting an infection.

Sunday 16th March

We’re home! Phew, we are home with a bit of a rash but no more high temperatures and promises to go back tomorrow for blood cultures and IV antibiotics and the day after and the day after and for a probably for a few days more. I am still hoping that once he gets a negative culture that I will be able to learn to do the IV antibiotics at home. It’s great to be back although we had to detour into South Gloucestershire on the way home to avoid the Bath half marathon. We made it back by late afternoon and went for a walk. We saw several of Rob’s colleagues on our walk who all commented how well William seems, we didn’t disillusion them by telling them that we had only been out of the hospital for 2 hours!!!! I took his NG tube out on Friday too so we can see what he really looks like. Although the funny thing is that I never really noticed it and now it’s gone I don’t notice that it’s not there either if you know what I mean. Have rushed around catching up on the laundry and unpacking just in case we get tied up again at the hospital, we try and work on the theory that if we are all packed and ready to go and the house looks reasonable, then we won’t have to be away but if the place is a mess and we have no clean socks we are bound to have to stay!!! It doesn’t always work!!!

Posh tomato and cheese baguette

Well we have slipped into old Saturday routines, bar the fancy coffee. William continues to do a good impression of someone who is not ill by charging around the room. Cath went into town on the bus during William’s mid day nap because the tube doesn' t run out this far and they don't take oyster cards either. As I was remind in an email I have just read, we were somewhat spoilt being in central London for William’s BMT, although Cath did return with sandwiches from Pret (my fav Posh Tomato and Cheese). This afternoon a walk to the park, no sheep but a muddy Gillie and finishing it all off with a bath in a baby bath flooding the room with splashing.
William’s temperature has been good today although we did finally have a high reading from under his arm this evening. The Doctor came in this morning and forgot to examine William as he appeared to be taken back on how much he has grow since the last time he saw him (William has a bit of a rep for stressing out RUH Doctors who need to take blood using a needle). He then told us that all three lines where infected which is a worry as we were under the impression that a double Hickman had only two lines (it's all in the name!). We think he was talking about culture samples as there were mean't to have been four samples but the nurse could not get a sample from the yellow wiggly during the night so there were only three. So both lines are now infected and they have changed the antibiotic. Normally what happens is the drug is put down the line then the line is flushed and finally hep locked (hep lock keeps the line free flowing and clear). The new antibiotic is just put down the line and left so it sits at the site of the infection no flush no hep lock seems quite clever. They do one line at a time every 12 hours for the first 24 hours and then one a day. So we are hoping to leave tomorrow after lunch and then Cath will take William in everyday for the antibiotic and to have cultures taken until there is a negative result and then she will take over giving the antibiotic at home.
Cath sent me home at half seven saying Gillie had been trapped in the car long enough and that she wanted to read her book. I think the truth is, we beginning to depress each other as we looked around the room, and if you half closed your eyes you were back on Fox or Robin. We were not worrying about us but those we had met up there who have so much more to deal with. BMT is great when it works but it is a last resort for all that go down that path. This short stay is a blip for William and over all he is doing really well. So when you talk to your maker next ask him her or it to look over those kids you don’t know but are having a last shot at life.

Different Hospital, same Microwave meal.

Day two in the RUH and William has a line infection similar bacteria to at Christmas. Luckily that was three months ago and his immune system is much stronger now and so far his temperature has not drifted over 38 too much unlike at Christmas when it was off the scale. Although there is some dispute about what is his temperature as, there are two readings his under arm readings are near normal whereas his ear readings are just over or just under 38. The infection is in only one line, which is good and the antibiotics that were started last night are the right ones to deal with this bacteria (until the cultures came back the doctors didn’t know what they where dealing with). It is very strange sitting in a hospital room eating Waitrose microwave maccy cheese again with nurses hooking William up to syringe drivers. Hopefully it will not be for long as once we get a negative culture reading on William’s blood samples we can go home. William will be on a 10 day course of IV antibiotics once at home, which we will be trained to give him over the weekend. A little scary as the lines go straight into his heart. William is quite happy in himself apart from doing a good impression of a two bar heater every now and then. Cath is doing ok but is missing tea, as there is a no hot drinks rule on the ward, which also means no fancy coffee from Starbucks in the morning either.

Home Alone again

I just got back from the RUH in Bath where William and Catherine have taken up residence. This afternoon after a visit from the vicar (in which Cath forgot to offer tea and the house was looking lived in) William was feeling warm so we took his temperature and it was high again. A quick call to GOSH and a word with one of William’s doctors and the High Temperature protocol was inacted. We packed the bags and phone the RUH to tell them we were on our way. It is probably a line infection but hopefully it will not be as bad as the one at Christmas. It was very impressive when we got onto the ward and although they where snowed under, within half an hour, cultures had been taken, two doctors had looked W over and antibiotics were running. Now we have to wait to see what grows in the jars so the right antibiotic can be used. So a trip to Waitrose after work for me tomorrow to get Cath a microwave surprise, all very familiar but at least it only takes 25 minutes to get there.

Thursday 13th March (2 weeks off 6 months!)

We went to GOS yesterday. We had a good trip up although it takes a good 3 hours, even with a pretty early start. They are very pleased with William’s progress and we are stopping the extra fluids so can get rid of the NG tube, Hoorah! We are going back in another month all being well and after that it will be longer before they need to see us. We saw a lot of people that we know from Fox. All in all, most of them are doing pretty well. Keller is at home, although still needing a lot of care and we caught up with Jack who is getting on well. I lightened the mood in the waiting area when I got up momentarily to help William with something and sat straight back down again only to find that my seat had returned to the upright position and that I was on the floor, it’s a good job that I have a well cushioned derriere! I always find that it is a bit of an emotional day going back to GOS. The home trip took a lot longer (no, we didn’t get lost this time) but there was a nasty crash on the motorway so it took about 4 ½ hours, not including our stop in Basingstoke to collect Gillie from Auntie Nicky’s, have a piece of cake and help Ella and Hannah build (or knock over) the world’s biggest duplo tower! William woke up with a temperature of 38.2 at 2am but we waited a while and it went back down on it’s own so we are all a bit tired today and hoping that we won’t have any more excitement of that kind.

Tuesday 11th March

WHAT is she trying to feed me today?

Grandma and Grandpa brought Phyllis to play with us today which we enjoyed very much.

Tuesday 11th March

Robert looked after William yesterday so that I was able to go to Lucy’s funeral. Nick went to the service with me. It was a truly, moving service. The loss of Lucy has left me deeply saddened and made me question what I believe. I am angry that anyone should lose a child and that life is so unfair. I admire the great courage that both Claire and Adrian showed at such a devastating time. I left knowing that so many people loved Lucy. That despite her tragically short life she will always be remembered and that she has left us all with many happy memories.

More pics

Thursday 6th March

We have been getting on very well at home. We have stopped William’s overnight milk (well non milk really but I digress) feed which at least means that I only have to get up when he hollers rather than setting the alarm for 3 or 4 am to change the bottles over. He is sleeping much better (touch wood because whenever I say that he has a bad night). We had a lovely family outing to the beach this weekend, no prizes for guessing which one! It was well worth the journey for a run around on the sand and chance to get water in our wellies. William’s Hickman line sprung a hole this week. So we traipsed over to Bristol via Bath (not sure why we bothered going to Bath first but at the time it seemed like the right thing to do) They cut off the faulty bit and glued a new bit back on so all ok now, we were anxious about an infection but seems that we have escaped this time. The location of this repair also means that the other repairs have been replaced, if that makes sense so fingers crossed we won’t have any more problems with it. It shouldn’t be too long now before he can have it removed.
We are obviously deeply saddened and touched by Lucy’s death and can hardly bear to imagine how Claire and Adrian must feel.

A Brave Little Girl

Lucy died on Monday our thoughts are with her family

News

With heavy hearts we write this entry. William continues to do well and Catherine will post his adventures later this week. Catherine has told you of the amazing family who had the room next to her and William on Fox when he first went in and how Claire kept Cath buoyant in those first weeks. On Saturday we had a sad email from Claire and Adrian. Lucy who is a couple of weeks older than William has reached the end of the road with her treatment and there is nothing left to try. They are going to a hospice this week for a few days to spend time together as a family. There is nothing else to say other than that our thoughts and prayers are with them every minute of the day.