Wednesday, February 25, 2009

Thoughts for The Camerons

David Cameron and his family are in my thoughts and prayers. It is so sad. What a lovely, vibrant boy Ivan looked to have been.

I have actually run out of fingers to count the number of families I know who have lost a child. It comes from living the life we have led over the last few years and making the friends I have made. My thoughts are with all those angels and their families today.

If it were not for one family who lost their own little girl in November last year, we could, by now, have lost our little son and brother. That family are amazing. In their grief, they gave him back to us and , although unknown, we will carry them close to our hearts forever.

Tuesday, February 24, 2009

Spontaneous chocolate pancake party

Yesterday, the girls and I decided to give up chocolate for Lent. We also decided to have a chocolate blow out today and eat lots of pancakes. We are doing the 'Love Life Live Lent' books and have a family book full of activities. One was to hold a pancake party. Before now this would have been a none starter but, why not I thought! At 7pm yesterday, we decided to go for it and each of them could have one friend (as a real party would be too many people around for William). It has been a long while before we did anything so spontaneous!

Hope and Ellie have not had too many friends round over the last couple of years as Wills, when home at all, was too unwell and tea times were dominated by TPN. It was lovely today to be able to properly entertain their friends and spend time cooking them pancakes whilst Wills busied around us all with his new found energy. We had savoury pancakes stuffed with tuna and cheese, pancakes smothered in chocolate and pancakes with lemon and sugar. Everyone was relaxed and happy and it was so lovely. Ellie is off to a friends house tomorrow and Hope has already spent most of the weekend with her friends so they are settling back well.

William did not fancy joining the four girls at the table for pancakes but did have a good few licks of a strawberry lolly this morning, even declaring it as 'delicious'. He is also now beginning to really enjoy having his teeth cleaned so these are very tiny steps towards eating.

Sunday, February 22, 2009

Life is there for the taking

Playing on the quiet side of the playground

Learning what to do with an egg

A walk in the park

Cuddle with Big Sis

Enjoying the winter sun in the garden

Singing and dancing to 'Mama Mia'
(with two sisters, you just have to join in with these things!)

Joining in with family meal times (even it not eating it yet)

Rediscovering long forgotton about toys

Once again, the story is in the pictures. This was our first weekend together as a family since September, and there were precious few of them before that. It has been lovely. For the first time since William was born we are able to sit down together at meal times. It was always a case before of doing the TPN and then rushing to try and get something cooked for the girls or giving them something already prepared whilst I was doing TPN. William's bed time routine, including the TPN and IV drugs used to take about an hour. Now, we can sit down at 6.30 and eat before I do William's feed and medicine and get him to bed. William has a small plate of whatever we are eating. He plays with it and is learning the skills of eating with a knife and fork. I am sure he will eventually begin to have a taste. He does fully join in with the social aspect of the meal and that is equally important.

We are not yet allowed to take William on public transport or anywhere that lots of people will be. As it was such a lovely day on Saturday, we did venture out for a walk in the park and even managed to find the quiet side of the playground. A couple of children did come on over to join in but I explained things to their parents so William could play for a little while. He didn't keep them from their game for too long. William was really nervous of falling. He does lack some of the confidence he used to have when playing on swings and being put on other toys in the park. It is not surprising really after all his body has been through.
William has been inseparable from his sisters this weekend. He has really missed them. We have all missed each other. The girls have grown up loads, especially Hope who will not leave her bedroom without a full face of make up anymore. I have missed so much of their lives and want to hold on to every minute now. They have been bought up by Mum and Dad as much as me over the last three years and I know that they will always have a special bond with them, beyond that of Grandma and Grandad now. I would never have been able to get through these years without knowing that the girls were safe, happy and being looked after with them. Much as I missed them, I knew they were OK and in the very best hands.
Hope, Ellie and I started to make up for lost time yesterday with a girle night complete with Chinese takeaway, chocolate and the sing-a-long version of 'Mama Mia'. We had a great time. I watched that film in our room in the hospital and found it a bit lame in the story line and more of a vehicle for the songs. I came away thinking I would rather have listed to an ABBA CD. I now know that the film comes alive when watching it with the girls you most care about and having a good old sing and laugh. It is our film of the moment and we have also downloaded the soundtrack. Even William joins in the singing and dancing and I am enjoying singing out loud whilst cleaning and tidying up - something I really missed in the hospital. It is so good to be doing the normal little things in life again.
We ended the weekend with a roast. The last two times I have tried to cook a roast, the food ended up being wasted as we ended up phoning ambulances before the chicken was cooked. Likewise, so many fridge loads of food have been thrown away after being admitted to hospital that I had begun to shop daily to avoid the waste. I am slowly beginning to relax and not feel like the next emergency must be due within the next few days. There will be ups and downs and William will have emergencies in the next couple of years but there is going to be a lot of stability and weekends like this in between. Life is there for the taking again.

Monday, February 16, 2009

The smiles tell it all...

William four days before his transplant

And now!

Look at my rosey cheeks!

So much energy to play

There is lots to say about settling back home after the transplant and so many months away. I will blog about finding my floor (eventually!) under the layers of semi unpacked hospital bags, the struggles with getting William's complex medication regime prescribed, the emotional highs and lows of sorting though all the TPN bits and pieces and IV antibiotics that serve to remind how poorly William was before his transplant. I will get on to all of this but, for now, William's smiles say all that needs to be said!

Sunday, February 15, 2009

We are home - an intend to stay here this time!!!

We are home and William is on tip top form!!! This is a quick blog. The house is a tip - I had to put the bags on the piles and clutter that were the remains the unpacking and sorting last time that was cut short so suddenly when Wills became unwell. I have cleared the space to make his feeds and do his meds and that is about it. Paul cooked a curry and I have had a couple of glasses of wine so now I am pretty sleepy. Off to bed then tomorrow is a day of sorting ourselves out.

The last few days in hospital were very reflective and emotional ones for me - more to come but, for now, we are home. Hooray!!!!

Tuesday, February 10, 2009

No Mention of the H Word

We are not going anywhere tomorrow as William's stoma output is too high. We are persevering with the feed for another day or two and have increased the medicine to slow down his gut. No more speculation. The next time I mention the H word on this blog will be to say we are already there!!

Meanwhile, we held a bake sale for Live Life The Give Life today and raised over £40. I have some lovely pics trapped on my phone. It was loads of fun and nurses, physios and other families made us cakes to sell and nearly everyone involved in the ward enjoyed the yummy goodies on offer. This is a transplant ward so awareness is high, at the moment there are five children in here recovering from recent transplants and at least two who have had transplants in the past. There are at least another two being assessed for transplants. It was great to be able to introduce Live Life The Give Life to people on both sides of the transplant experience.

Monday, February 09, 2009

The exclamation marks below should be question marks

Two more sleeps???? William's stoma is pouring a bit since the feed was changed. Please, please stop!!! If it gets close to that litre we will NOT be going home in 2 more sleeps.

Two Sleeps!

William's stoma output is just about borderline OK so we are pressing forward and trying the new feed. The plan is to go home on Wednesday. Two more sleeps! Hooray! We seem to be on the easy path for now and, as long as his output stays down and he grows, we will stay on it. Sure, there will be setbacks along the way but we are on our way now

You make some great friends among other parents here. We have seen a fair bit of a lovely family who are experiencing issues with their child who is 4 years on from her liver and bowel transplant. She had an op to clear a blockage on Saturday morning and was really poorly overnight. She ended up in respiratory distress this morning with crash team and everything. Everyone thought her bowel had burst and she was rushed into theatre. All seemed normal so no-one has any idea what caused her to be so critically unwell this morning. These children are enigmas. We all have to treasure each moment we have with them.

Saturday, February 07, 2009

Crunch Time

OK, lots of prayers and positive thoughts please. William is really well in himself but it is a crunch time. Since we took fat out of his feed his stoma output has been fine. We have now but it back in, but long chain fat rather than the medium chain fats in his previous feed. If he tolerates it, we can change to a 'ready to hang feed (nutrini) on Monday and we will be home by Wednesday, as long as his stoma output and blood sugars stay stable. If his stoma output gets too high (over a litre) we will have to take fat out again and go back to the drawing board. The solution to that scenario may be fat free feed with his fats delivered intravenously - i.e. parenteral nutrition one or two nights a week. This would still be hugely better than 20-24 hours parenteral nutrition a day but it would be such a shame if we had to go back to it at all. His new bowel should be able to absorb all his nutrients and it was until he got the pneumonia. His output is up since the fat has gone in and the next couple of days will be critical in seeing if he can cope with it or not. It really is a cross roads and I so, so hope we go down the easy street. It is about time! If we are forced down the harder one we could be here for weeks more and we all need to be at home together now. So, loads of prayers and positive vibes please....

Thanks so much for the lovely post William has had. It has so cheered him up. I have addresses for most people who kindly sent him things to keep him busy and William is eve more busy now making thank-you cards. I must thank Ann and Steve for the lovely CDs as I don't seem to have your address. The CD a collection of old classic children's songs. Many of them bring back memories of singing them with my Grandparents and William is having a really good laugh to tracks such as 'Jake the Peg' and 'Right Said Fred'.

We did manage to escape on Thursday to play in the snow and make a snowman whom William named Cyril. This picture was taken by Paul. William hasn't been eating snow - it is the foamy saliva that he seems to like to hold in his mouth and refuse to swallow - nice! I do have lots more pictures but they are all trapped on my mobile phone (I can't work out how to send them to my computer by bluetooth). I didn't bring my camera as we thought this hospital stay was going to be a few days, not another month! Let's hope that things work out so as it will only be a few days more.

Thursday, February 05, 2009

The date was with...

The date, of course, was with Paul. Lee Mead would have been nice but I would have had to tell him that I was unavailable last night. Paul and I have spent very little time together over the last 3 years. I have been living in hospital for long periods, most of the time over the last 18 months and, even when home, most of our conversation has been that of anguished parents over our son. A lot of our own life, dreams and ambitions have gone along in parallel.I'm not sure even how well we know each other these days and, now William has had his transplant, we have to rebuild this part of our lives as well. We have to start at the beginning ans see where we go. So, yesterday was a 'hot date' - one rule - William was not to be the subject of the conversation. We learned things we had missed about each other over the last year as well as things we had misunderstood. It was an important thing to do.

Wednesday, February 04, 2009

Hot Date?

Thank-you so much those who have sent William cards, letters and bits and bobs to do. He was particularly fed up with life this morning, particularly blood sugars tests, insulin injections and generally being poked and prodded. The post arrived with a big pile for William and it really put a smile back on his face. He is so touched that people care enough to write to thanks.

He is likely to be here another week. Having come to the conclusion that it is unlikely (they never say never) he is experiencing any rejection at the moment and doesn't seem to have any infection, we are not experiementing with his feed. We test his sugar absorption each day and that is fine, fine enough to send his blood sugars up too high as well! Protein is easy to absorb so the finger is pointing at the fat. He has had fat removed from his feed for the next 48 hours and, so far, his output is back to normal. If this remains the case, we will try a different sort of fat. He remains fine in himself but this tweaking takes time and is frustrating.

I have a hot date tonight so watch this space....

Monday, February 02, 2009

Asking a couple of favours...

William's stoma output looked settled on Saturday and the consultant said we would go home if it stayed like that for a couple of days. William is very sensitive to such 'fate tempting' comments. One of the Chelsea consultants is famous for ending the Friday ward round with 'have a quiet weekend' to which William almost always did the exact opposite. The most such comment was the night we got the call when we had been discussing whether or not William should be suspended whilst in theatre having his perforated bowel fixed. Another of the Chelsea consultants ended that discussion with 'It doesn't matter anyway, you'll still be waiting in 6 months time.' We all know what happened just a couple of hours later!! Well, saying such a thing about the stoma output was just one of these occasions and William poured out more than ever in the last 24 hours. We are exhausting possible causes and William seems well in himself so we are beginning to reach the conclusion that it is just the way his bowel is at the moment and we need to adjust his protocol from hospitalisation and IV fluids above 1 litre output to 1.5 litres. First, we need to further observe his pattern and make sure it is a safe decision so we will be here a bit longer than a couple more days. It is likely to be the end of this week or beginning of next before we can go (of course, if his stoma output does settle it could be earlier).

There are a couple of things I would love it if you could do for us. The first is quick and easy. William had a lot of post after his transplant and then, of course, it was Christmas. The daily post really cheered him up and he is a bit fed up at the moment. He asked me for some letters at the end of last week but I was hoping we would be home quicker than post would reach us. Now we know we will be here a few more days it would be great if some of you could send him a card or a quick letter.

The address is
William M
Ward 8
Birmingham Children's Hospital
Steelhouse Lane
B4 6NH

The other thing will take a bit more time but will be lots of fun. The lovely people at Live Life Then Give Life are raising money to help them with their organ donation awareness work by asking people to hold a bake sale on Valentine's Day. Please visit their blog here for more info. I would do this but it may be tricky timing if we are only just home so I am hoping some of those who have been following our story here may do one instead.