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Friday, March 30, 2007

Panic

Hello! Well what a panic we had yesterday, but lets start at the beginning. Yesterday morning we had a bit of a lie-in but got up around 9am as we had to get ready to go to the hospital for our appointment with Dr Mordekar. So I gave Lew his bath, then I had a shower while he laid on the bed watching TV, then we drove to the hospital but it was raining so EVERYBODY (I am sure!) was in their car and there were no parking spaces anywhere near DRI!! So luckily Diane and Mandy (Diane's replacement for when she starts her new job next week) had just arrived at DRI and I dropped Lew off with them and drove to Roz's, parked there and Roz very kindly dropped me off at DRI. Diane, Mandy and Lew were in the coffee shop just inside the Gate 4 entrance and Lew was somewhat distressed as his tube had managed to come out a bit and so Diane had had to take him out of his pushchair and this had upset him as I was not there. He was a bit tired anyway so that didnt help. We walked round to the outpatients for our appointment and shortly after James arrived which cheered Lew up quite a bit! He does ADORE his daddy! Our appointment was at 11.30am but as usual it was later than that because Dr Mordekar doesnt like to rush his appointments and we totally appreciate this as we get our turn as well. When we went in, Diane and Mandy left us to go to their next job. Lew was a little more settled and Dr Mordekar was able to have a good chat with us about stuff. It was really only a check up as DRI and Sheffield have done all they can for Lew and so it was a case of 'anything new?' and at the time the answer was no, nothing new, all the same. We saw Jeanette before we went in to see Dr Mordekar, and we saw Jill and Rachel for a few minutes when we came out and this cheered Lew up alot! We popped to Tesco to get some healthy food (fish, brown rice, steam veg) and then James did some work at home (which involved eating very fattening quiche with Steve - work that one out!) and I went round to see Denise. Lew stayed at home with James so he could spend some with his daddy so it was a bit of a break for us both from each other. I had two lovely cups of coffee at Denise's and enjoyed seeing Maisie and Oliver. Oliver is a total tinker, with his GORGEOUS innocent face and his terribly mischievous attitude to life! Maisie did some lovely painting and then they both had a go on the computer and Denise and I had a nice chat and caught up on gossip. I came home just after 5pm and we had decided to put Lew to bed as he was tired ... I was just flushing his ng tube before giving him his medicines so we start his overnight feed and he went all rigid, arched his back, and started to sort of choke/gurgle and have trouble breathing. His eyes were very very distressed and he was losing colour so I made the immediate decision (split second) that we needed an ambulance NOW so James rang 999 and within a few minutes a paramedic arrived soon followed by an ambulance. My main concern was that somehow I had put fluid down Lew's tube and it had gone into his lungs. I was terrified that he was going to drown. The paramedic listened to his lungs and said he thought he could hear some fluid on the right side. We rang the hospital to let them know we were coming and then we went off in the ambulance with Lew on oxygen as his colour was very poor and his breathing was quite laboured. At the hospital Lew had improved quite a bit and his colour was much better. His sats were good and he was able to come off the oxygen.
The doctor had a listen to his chest and felt that there was no fluid but that Lew should have an x ray just in case, to check the position of his ng tube and to check for fluid, so the mobile x-ray unit came to the ward (very cool!) and Lew had an x-ray. It was funny because I sat with Lew with my lovely blue metal apron on and the x-ray man said 'X-RAY' and everybody scarpered and Lew and I were like lepers in the corner of the room lol! While we were waiting for the x-ray Lew had the same seizure type episode 3 times. Each time, the same. He arched his back, his body went rigid from head to toes and his breathing was very laboured like he was gasping for breath. The x ray came back and his lungs were clear but his tube was too far down so it had to be pulled back a little. Lew had by this time fallen asleep (absolutely shattered and way past his bedtime - 8.30pm by now) and the registrar did say he would prefer if we stayed overnight for observations. Being a 'veteran' of staying overnight on the ward, I knew that Lew would be much better off in his own bed as it was shattered already and he needed a really solid night sleep which he wouldnt get on the ward so I asked if we could go home. As the registrar knows us well (and he is so lovely too, he always has plenty of time for us whenever we see him) he said that was okay so we were allowed home YAY! We came home and put Lew straight to bed and he had a really good night sleep. I had a bath and then I went to bed too although I didnt sleep too much as I was checking on Lew on the monitor all the time! So this morning - well we had a lie in and so we didnt get to baby massage which was such a shame as it was the last one, but Lew really needed some extra sleep. We got up around 10.15am and I gave Lew his bath and got him dressed as usual. And we had the whole day stretching ahead of us so I decided we could have a wander round the shops in town. We collected Roz and drove into town and had to go to the bank first to get some money! But because I specifically asked not to have a card on my account (so I cant spend willy nilly now I dont have a job) I couldnt get any money out!!! So we were in the bank for nearly an hour trying to sort it out! It turns out I have to have a card so they've ordered one for me but I've asked Roz to look after it for me when it comes so if I want any money out, I will have to go and ask Roz for my card first! We had hoped to meet Lynda for a quick cuppa but being stuck in the bank messed up that idea! We then went to various cheapy shops around town then went to 4 Seasons for some lunch (this was about 2pm). I had salad and Roz had ... steak pie and chips!!! Roz insists she asked for salad but they gave her the wrong food haha! Lew had a snooze so he was able to catch up on a bit more sleep. We met Karen and Craig (with Daniel, Heather and Stephen) to get James' avon stuff then we had to rush back for Roz to collect Matthew from school. Lew and I stayed at Roz's playing with the dogs while Roz went off to school. Lew loves the dogs! They make him laugh everytime he sees them and they are so affectionate and gentle. We popped to B&Q for some toilet parts for Roz (well for Roz's house, not for Roz personally hahaha!) and Lew was chauffeured round by Matthew who Lewis also adores! There are some people who light up Lew's face every time he sees them and Matthew is one of those people. He has so much time for Lewis and is so gentle and sensitive with him and ... well he's just a gem really! And we love him! On the way to B&Q we collected Jodie from Lakeside - another of Lew's favourite people. After B&Q we said goodbye to Roz and Matthew and came home. James and I put Lew straight to bed again and he is sleeping soundly now. He has been sooooo tired, he needs to do lots of catching up! James then went round to Steve's with his home made curry for them to share! They are mega obsessed with this diet (which is of course great!) and they were comparing calories lol! Jodie and I watched The Da Vinci Code on DVD while Jodie negotiated by text with her dad about her prom dress and her pink limousine!!! We never had proms when I was at school - I feel cheated!!! So here we are 10.30pm on Friday. My other friend Jodie is texting me from town, she's drinking cocktails - I am sooo jealous! I have arranged a 'ladies who lunch' club and our first 'meeting' is on 21st April. If you are interested in joining us, send me a text or an email. I am thinking of doing a raffle as part of it where each 'lady' (haha ladies!!) buys a ticket for a pound and the prize is something we get donated. We'll see what happens about that, but that way it can be a Lewis Jeynes Fund event as well as a relaxation and social event for us ladies! May's lunch is 26th May if you cant make the April date. But I do need to know at least 2 weeks in advance if you want to come to the lunch so I can make the necessary bookings at the restaurant. Tomorrow is Natasha's 3rd Birthday Party and we are VERY excited about that! And tomorrow evening Van, Steve, Nicky and Jay are coming for tea at ours so a busy day ahead. On Sunday (Lew being well enough) we are going to drive across to Bottesford to see Yolanda, Stephen, Joshua, Naomi and Joel at their church. We havent seen each other for ages so it will be so great to catch up. So ... hopefully panic over. Lots of love everybody x

4 comments:

Anonymous said...

eek glad its hopefully panic over.
have a great weekend
lawse!

Anonymous said...

i hope everything is Ok with Lewis now. And hopefully no more panics. Again loved the pics and liked the look of yours and Roz' dinner/lunch! hehe

Love Sian
Take Care XxxX

Lucy said...

Oooh dear that panic sounds awful. Poor little fella. Give him a big giant snuggle from all of us.

Lucy, Mike, Katy, Ems xxxx

The Pettifers said...

Thinking of you all as always - and writing this at the airport waiting for our flight. Aaaaggghhh.

All our love always

Wendy Andrew George and Anna xxx

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!