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.