Tal’s SDR Jouney

We have an early start each day , but then we go to bed early anyway. This morning Richard drove Claire and Jon to take Taliesin for pre-op checks at the hospital. The first appointment at 8-15 am. We took Gethin to the supermarket Duerrs to stock up and keep him amused.
When we got home he had great fun in the laundry basket.

Gethin in the Laundry Basket

He has chosen this month to try potty training… just likes flushing the toilet! An extra challenge.

We met up at Lunch time at the hospital.Tal had asked every one from the reception desk onwards ,
‘Are you Dr Park ?”
Finally they got to meet, and Dr Park was very impressed by how excited Tal was to meet him. He also complimented Tal on how well he responded to instructions and how eager to please. It bodes well for the physio .

Taliesin meets Dr Park.

Taliesin was very pleased by how many stickers he won today already. Gethin screamed when we tried to get him out of the sibling play room. They both want to go back. (thank goodness)

We also met two other British families with girls a little older waiting for the op this week. We then walked back through the park and hope in a few weeks we might be able to take the boys to the Zoo which looks great. For today Gethin settled for the duck pond in the park with a cold juice.

Gethin by the Duck Pond

He enjoyed seeing the Stars and Stripes and sliding down the flag pole like a fireman.

Showing mummy the American Flag

Sliding down the Flag Pole

Tal is first on the list tomorrow so needs to be at the hospital by 5-45am. In Europe think of him about lunch time.It will take at least three hours for the procedure then into intensive care for 24hours . We will put out the ok as soon as we get it here back at the house, and there will be a short blog tomorrow night.
HERE WE GO !

OPERATION DAY

Early start , Richard drove Claire ,Jon and Taliesin to the hospital at 5-15 am.He was first down to theatre at 7-00 am.That made the “no eating” rule easier.
We gave Gethin breakfast and waited on news.Jon called to say the operation had started and they were in a special parents waiting room.It started to rain, we were a little restless at home to say the least so decided to take Gethin out to a shopping mall.
We had a call to say Dr Park was pleased with the success of the op and Tal was in the recovery room.
It wasn’t long after breakfast but we decided to celebrate…. with ice-cream!

Gethin celebrates with mid-morning ice cream
Grandma spoiling Gethin

We headed home for lunch and another call to say Tal was now in intensive care.The debate was whether to visit.Jon and Claire were worried about Gethin and Tal but by then Gethin was down for his afternoon nap so we decided to wait and see.
When he woke up we headed to Gethin’s favourite place…. the local park.
Taliesin was stirring and upset that his back hurt.
Since they were organising more painkillers and obviously concerned for Tal who is a little distressed we have kept Gethin home.He has enjoyed his tea and we head now for bath and bed.
If Claire can tear herself away from the hospital Richard will go fetch her to come and get some sleep.We will go back in tomorrow and swop over so Jon can come home for a break.
This will be the pattern , a tag team till we hopefully get Tal home on Sunday.

At St Louis Children’s Hospital

We all set off for the hospital this morning , to see Tal and do a shift change-over for Jonathon who stayed the night.
The organisation is pretty slick and we all got special stickers to wear.

labels for Grandparents and Sibling (Gethin)

Heavily sedated Tal was still in intensive care so Richard drove Jon back to the house to shower and sleep while Gethin and I found the sibling play room.
Tal was on morphine and Valium all wired up ,drowsy and confused.

Tal in Intensive Care with Mum

Late morning they decided to move him up to the twelfth floor to his own room. One of the volunteers tracked Claire down to give her English Tea Bags from home as she had heard Claire say she would love a proper cup of tea.

View from Tal’s Room on the 12th floor

Gethin was allowed a quick visit before lunch. Then Dr.Park stopped by to see him.

Tal sedated in his room

As the day wore on he became more aware and more uncomfortable with all the lines and monitoring.

Tal wired up in his room

Gethin discovered a beautiful tranquil roof garden to explore donated by well wishers to the hospital.

Time for Gethin to see Dad
Gethin enjoys the Roof Garden

Just as we, grandparents were about to take Gethin home for dinner/bedtime.Tal decided he might drink something. His nurse said if he drank some apple juice he could have a treat. Tal’s idea of a treat is chocolate but she did better than that and brought him chocolate ice-cream. When we left he was happily licking it off Mums spoon. Real signs of improvement.

Thursday on Ward 12

It would be a good time just to say how fantastic everyone is at the hospital .I am sure medically they are trained at the highest level then go to finishing school at Disney! It helps that the boys are so cute. Gethin goes everywhere wearing his “fishing hat” as they call it here.Volunteers around the hospital stop to give him bubble blowers, or colouring packs.He ran into the Sibling Play Room this morning without a backwards glance.This gives us the chance to visit Tal ,and read him a story while Claire and Jon grab a coffee.
Tal needs to be turned every four hours which is painful for him and is constantly telling us he is much better so can he come home. On the positive side his legs flop wide and relaxed for nappy change which is new. A gentle stroke of his toes got the response,
“Grandma put the blanket back on my feet!” very encouraging.
The lines are gradually being removed only one left for the Valium over night .
Just look at the effort the staff made to tempt him to eat breakfast

Pancake as a Teddy Face

He has spent the day listening to stories, playing with his cars and watching videos.

Tal doing his best to Play

We took Gethin out to the park this afternoon. Dr Park checked up on him and was again pleased with his recovery.Tal was also measured for new splints, and being the USA he had the choice of colour.Tal went for black with flames.He feels these will make his feet go faster.

Tal in bed

Well we took all the photo opportunities at the hospital yesterday so that’s it today… tonight Claire is sleeping over and Jon is with us.Early tomorrow he takes in Tals wheelchair for his first physio session.We will update tomorrow on his progress again.The ward is a haven of calm and efficiency.The staff are kind and encouraging we are beginning to see light at the end of the tunnel, even some normal nights sleep and meal times. Maybe in a week or two !

Friday

Richard drove Jonathon in early with the wheelchair and walker as they were to be given a session on how to lift Tal into the chair and so give him a tour of the hospital outside his room.
Gethin stayed with me and enjoyed his favourite breakfast, we had managed to find Wheatabix.

Gethin enjoys breakfast

When granddad got back we managed to get Great Grandad and Great Grandma on SKYPE .They are both justly proud of how they are coping with the new technology.

Gethin speaks to the Great Grandparents

When we got to the hospital we were pleased to see Tal looking alert and happy.

Tal proped up in bed

He was pleased to tell us he had found the hospital shop and been allowed to spend some of his American dollars to buy some cars.

Tal shows grandad his new cars

We then met MAD MIKE his physio, looking like a former hippie this guy is a great character and Tal has really taken to him.
This afternoon he had his first proper session in the activity or as Tal prefers play room.

Mike helps turn Tal ready to get him out of bed

He seems able to sit better in his chair despite the discomfort

Tal pleased to be back in his chair

He was excited to find the playroom has a firemans pole so as an avid fan of FIREMAN SAM he had to try it , albeit with the help of three adults.
He has to have hour sessions in the wheelchair then an hour bed rest .On the next trip he bought a tube of Rollos from the shop, even ate the last one!

Asking for the last ROLO

We headed to the atrium where on the hour they play the theme from STAR WARS and mechanical flying machines swoop overhead.

Magnificent Flying Machines

When it was time to leave Tal cried because he wanted to come, and Gethin cried because he wanted to stay.Reports from Jonathon tell us he settled afterwards and Gethin certainly enjoyed his tea.

Gethin enjoying his Supper

Like everyone the boys have been very patient but would really like family life to get back to normal, or as close to it as we can manage with everyone staying in the same place.
Last full day at the hospital tomorrow.

Saturday in St. Louis

I forgot to mention that yesterday we had the most amazing storm.We got used to spectacular tropical storms in Florida, every afternoon about four o’clock in fact.Yesterday was at midday and was like a total eclipse. You can imagine the view from the top floor with successive lightning bolts and deafening thunder.One of the nurses said it should only last an half hour and smiled cheerily so we “ignored” it
However at 6-30 this morning at the house we had another that rattled crockery and shook pictures on the walls. The electrics went down and we hunted round with torches on mobile phones for candles.

Breakfast by Candlelight

We are told we wont miss the tornado warning, it’s very loud like the fire warning in France or an air raid siren.We all then head for the cellar and wait for the Yellow Brick Road.I will dream tonight of Dr Park in the Emerald City.

Claire went off for Tals 9-00 am physio which had to be postponed as the physio had called in sick.An hour later Tal was raring to go and amazed everyone by crawling without hesitation.

Tal tries crawling…. look at those feet!

The problem is slowing him down in case he falls or overdoes it.The staff think he is going for the record on the quickest recovery after surgery.

Tal eager to play

 

Enjoying the chance to move

He has had two sessions today and two rides around in his chair.He got the chance to visit the roof garden.

Tal visits the Roof Garden

Of course it had to be back to the shop as Grandad Lee had sent money to reward all his hard work so he could get ANOTHER car.At this rate we will need ANOTHER suitcase !
Gethin has been a really good boy today. We had lunch out together and he made a new friend at the park.He is coping well with the heat,eating everything and his language skills are improving daily.We let him have a good run round in the park.

Gethin on high walkway

 

Gethin tempted by cool water in the Heat

Richard brought Jon back tonight so Claire has the last night shift in the hospital.We look forward to getting the family back together tomorrow.

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