Wednesday, 17 December 2014
Tuesday, 16 December 2014
Tuesday 16.12.14
Today is Luke's 6th birthday!
We collected Sam yesterday afternoon and went to the panto last night! (Hence no update last night!) Weak & wobbly but we were so pleased to be there as a family!
Sam asked if he could have a lie in this morning... Seemed like a good idea to me!
He's now going to decorate the Christmas tree.
After Christmas Sam will return to school on a phased return depending in how he is coping.
Sam has given me permission to share some picture of our journey during the last three weeks. When I get a moment I will post them on the blog.
Thank you everyone xxxxx
Sunday, 14 December 2014
Sunday 14.12.14
Sam is doing well today. He is eating small amounts of food and it us staying put now. He feels a bit sick but the drs think he will eat better when he is home.
Sam's NGT was removed ...by himself and with a cheer from us this morning!!! It was a real sense of achievement for Sam to pull it out and throw it away! His TPN has also discontinued.
Sam has lost a lot of weight and is weak and wobbly at the moment. We are keen to get him home and fatten him up for Christmas!
Sam will have his stitches out tomorrow morning and then we will bring him home!!! The balloons & banners are ready for his arrival!
This has been one of the most challenging times for us physically, practically and emotionally that I can remember.
We wonder how God can ever push us to our limits like this, but we know that he had walked with us during this time. There have been many answers to prayers, albeit last minute answers... But God has his timing, so that we learn to depend on him always. In our desperation we have had the privilege to experience God love for us through friends and family who have supported us with messages, meals, cakes, childcare, taxi to & from hospital & school run, doing out washing for us. This is a true act of love.
Thank you everyone for walking this bumpy road with. Xxxxx
Saturday, 13 December 2014
Saturday 13.12.14
Sam he is now trying to keep up with the hungry caterpillar PTL! He has eaten 1 banana, 1 ice cream, 1 chocolate hero (thank you Eva!) & 1/2 a jelly for lunch, and for tea soup & mash potato for tea. He was sick this evening but this may be a combination of factors, such as ...because he eaten too much! Or because he did not like the taste of oramorph, he is very tired, and he also had some pain. The plan is to watch and see.
The NGT feed will run at 10ml per hour tonight. Tomorrow the NGT will come out if Sam is well. If he keeps eating his TPN will stop tomorrow. Woop!
Sarum ward had a visit from some festive hairy bikers today. We took Sam outside to look at their bikes and Ben Luke & josh had a sit on a couple bikes too!
Thank you for all your prayers we are seeing them answered every day.
Friday, 12 December 2014
Friday 12.12.14
Sam is being quite cheeky today and he is less wobbly on his feet. He has played mine craft for the first time in over 2 weeks and is now beginning to feel bored which is another good sign!
Sam is allowed 10ml of squash every hour (so we time this with his hourly drip alarms). His NGT has been capped today. His TPN feed continues. His morphine has stopped and Sam has not noticed!
He was promised one advent calendar chocolate tonight if his drink stays down today, but he felt a bit sick and declined it this evening which was a shame. They plan to run the NGT feed tonight to test his tummy again.
Sam's was moved to a room close to the nurses station last weekend, today we were offered our old room back which was in a quieter spot, but Sam declined it as he said he likes to keep his eye the nurses!!!!
Nigel did the overnight shift at the hospital last night. I was pleased to have a bath and blow dry my hair! But I did feel very sad that I had come home without Sam.
Mum and dad have gone home this morning (as dad has his op on Monday). Sam is now going to have to spend some time alone at hospital whilst Nigel and I share our time around the family.
Nigel has settled Sam to sleep this evening and has now come home for the night, so Sam has his first night on his own. Nigel and I need to spend some time together as we feel we have barely seen each other during the last 3 weeks.
We are aiming to get to the panto as a family on Monday night, either discharged or on a few hours release from the ward! Sam is really looking forward to this.
Thank you everyone ... The end is in sight! PTL for friends & family ... I'm not sure how anyone could manage without this support. Xxxx
Thursday, 11 December 2014
Thursday 11.12.14
Sam is doing well today. He has sat in his chair and had another little walk. He is looking brighter, more comfortable, and more like the Sam we once new.
His NGT is still draining at the moment. However he has begun to feel some gurgling in his tummy and the consultant has heard some bowel sounds today which is good news. Sam has had 30 ml of Apple juice to drink, and that has stayed put. He has not had any more feed down his NGT today.
The TPN feed (into his vein) will continue until he is eating (this is likely to be several days yet though).
They plan to begin weening him of the morphine drip over the weekend. He will have his (20) stitches removed on Monday.
It looks like we are heading in the right direction now PTL!
Thank you everyone for all you have done to support our family during this difficult time. xxxx
Wednesday, 10 December 2014
Wednesday
Today we have had lots of progress! Sam has got out of bed and walked to the 'teenagers chill out room'. He has let me wash his greasy mop, so he looks and smells a lot fresher! He has played and beaten grandad at draughts, he has come off the oxygen and maintained his sats! And importantly he has had 10ml of feed down his NGT and he has not been sick!!!! We are all feeling quite happy this evening and look forward to reporting more progress tomorrow!
Apparently Sam is a bit of a 'hospital celebrity' AKA 'interesting case'! ...... This might explain the number of doctors who have been popping in to 'see' how sam is doing! Either that or they are checking out the Christmas deco which is being mass produced inside Sam's grotto!
A Huge thank you to everyone 'out there' for your kind messages, prayers, meals, cakes, washing, baby sitting, and taxi lifts. I do feel like a bit of a burden on you all but I honestly don't know how we would have coped without the support we have been given.
There is a glimmer of light at the end of the tunnel and today it's getting brighter. Please Keep praying that Sam's tummy jump starts into action and he can retain and absorb the feeds he is given.
Thank you
Love JN sblji XXxxxxx
Tuesday, 9 December 2014
Tuesday
Sam has been busy with the physiotherapists today. They are helping him with breathing exercises, to move around his bed and they have helped him to stand today. He had been busy with his Christmas decoration production and his room is looking very festive so he is quite tired this evening.
He had a break from the oxygen but his saturation has dropped too low so they have started it again. His gastric aspirate had reduced so they tried to put a small amount of build up feed down his NGT and into his tummy but this promptly returned and so Sam remains nil by mouth again.
We were feeling hopeful that we were turning a corner, but when it becomes apparent that things remain the same the disappointment sets in greater than you can imagine and it can be seen in Sam. This evening he has realised his body is not ready for food so the drips will continue.
Sam is very weak. His body is thin and curled to the shape of the bed in which he had been for far too long now. He looks poorly. It is surprising how quickly someone can become a 'sick hospital patient'.
Sam is a fighter and as soon as he can he will be back in action. We are desperate to have him home and to return to normality. It's so difficult living this split life. I have had to shut down to any distractions other than home and hospital and it is quite odd to know that life continues around us! Someone mentioned it was Christmas... I can't begin to think about Christmas until we get Sam home.
We have tickets to the mother goose panto at the play house on Monday... But the hospital don't think Sam will be ready to go... We are hopeful he might but really we should be passing them on.... (Also my parents now can't come as dad has had an op on Monday too) so 3 adult and 1 child ticket up for grabs if you are interested let me know.
- Joy
Monday
Samuels pain is more controlled today and he is looking brighter. He has managed to laugh at some of the jokes sent to him from school... But we had to stop reading them to him as it was too painful for him to laugh!
The play leader has found some coloured paper, scissors and sticky tape and Sam is mass producing paper chains and stars from his room. It's good to see Sam happy again.
Sam remains NBM and all the same tubes and wires continue, (TPN, potassium, morphine, antibiotics, paracetamol) and his NGT continues to drain. His lips are quite sore from the oxygen so he is having it humidified now.
He has had physio twice today to help improve his lung function and shift the fluid which is collecting. She has also taught him how to move more comfortably in his bed. Sam looks more confident in himself and how he can cope with his wounds.
The Surgon has said it may be up to 5 days post op before Sam will eat again and after that it will be several more days before he can come home.
Thank you again for all your kind messages xxxxx
Monday, 8 December 2014
Sunday
Today has been calmer unlike yesterday which was very distressing for us all. We remain in salisbury with 1-1 care as the PICU in Southampton is full.
Samuel has many pumps and bells. He has infusions of morphine, potassium, antibiotics, paracetamol, and TPN running. He is unable to maintain his oxygen level without facial oxygen as he has pleural infusion (fluid on his lungs), he also has a cardio infusion (fluid on his heart), both a result of prolonged illness and restriction to his mobility and the pressure that the abdominal obstruction placed on his organs. Sams NGT remains on free drainage to empty his stomach as he still has a parylitic ilieos.
A cannula has been placed in his foot as he has run out of veins in his arms. Sam finds all the needles and daily blood tests so distressing. He has had an air bed since Thursday to help prevent pressure sores.
Sams abdomen looks less distended which is reassuring, However the 2 large dressings covering his wounds represent the trauma he has experienced.
Sam is very stoic and hides his pain very well and It has been quite a challenge to control his pain today. Movement and even touch is quite distressing for him. My instinct is to want to hold his hand, or stroke his hair or cheek but he could not cope with this this morning. This compounds my feeling of guilt wondering how I ever let this happen to him. Is he rejecting me as he does not trust me to keep him safe.
My poor baby has been trough so much. It's unbelievable that over two weeks ago he became ill with what we thought was a simple tummy bug. What is harder still, is that this time last sunday I was wondering how we were going to manage splitting family life between home and the hospital, for what i thought would be just a few days, and yet sams recovery has been reset even further now compared to where we thought we were last Sunday.
Isaac known as the 'shower baby!' To the nurses on Sarum ward (because he has slept in the cubical shower since Sams admission) has moved into the parents flat with me on Sarum ward, we have a little space to escape the bells and beeps, yet be close as we can to Sam. I do feel guilt when I leave sams bed side, but being there almost 24 hrs a day for the last two weeks has been very intense.
We are so grateful for all the messages of encouragement and love, meals, cake, and offers of help that we are receiving. We are sorry that we have not been able to reply to everyone individually, our reception here at the hospital is poor and our priority is with our family at the moment. To learn that Sam was prayed for by 4 different churches today is really special to us.
We feel very blessed at this traumatic time, we have so many people helping us to keep our heads above the water. Here begins our third difficult week ... and I know with everyone's help we should get through this tricky time.
Thank you
Love from
Nigel Joy
Sam Ben Luke Josh Isaac
XXxxxxx
Sunday
Today has been calmer unlike yesterday which was very distressing for us all. We remain in salisbury with 1-1 care as the PICU in Southampton is full.
Samuel has many pumps and bells. He has infusions of morphine, potassium, antibiotics, paracetamol, and TPN running. He is unable to maintain his oxygen level without facial oxygen as he has pleural infusion (fluid on his lungs), he also has a cardio infusion (fluid on his heart), both a result of prolonged illness and restriction to his mobility and the pressure that the abdominal obstruction placed on his organs. Sams NGT remains on free drainage to empty his stomach as he still has a parylitic ilieos.
A cannula has been placed in his foot as he has run out of veins in his arms. Sam finds all the needles and daily blood tests so distressing. He has had an air bed since Thursday to help prevent pressure sores.
Sams abdomen looks less distended which is reassuring, However the 2 large dressings covering his wounds represent the trauma he has experienced.
Sam is very stoic and hides his pain very well. It has been quite a challenge to control his pain today. Movement and even touch is quite distressing for him. My instinct is to want to hold his hand, or stroke his hair or cheek but he could not cope with this this morning. This compounds my feeling of guilt wondering how I ever let this happen to him. Is he rejecting me as he does not trust me to keep him safe.
My poor baby has been trough so much. It's unbelievable that over two weeks ago he became ill with what we thought was a simple tummy bug. What is harder still, is that this time last sunday I was wondering how we were going to manage splitting family life between home and the hospital, for what i thought would be just a few days, and yet sams recovery has been reset even further now compared to where we thought we were last Sunday.
Isaac known as the 'shower baby!' To the nurses on Sarum ward (because he has slept in the cubical shower since Sams admission) has moved into the parents flat with me on Sarum ward, we have a little space to escape the bells and beeps, yet be close as we can to Sam. I do feel guilt when I leave sams bed side, but being there almost 24 hrs a day for the last two weeks has been very intense.
We are so grateful for all the messages of encouragement and love, meals, cake, and offers of help that we are receiving. We are sorry that we have not been able to reply to everyone individually, our reception here at the hospital is poor and our priority is with our family at the moment. To learn that Sam was prayed for by 4 different churches today is really special to us.
We feel very blessed at this traumatic time, we have so many people helping us to keep our heads above the water. Here begins our third difficult week ... and I know with everyone's help we should get through this tricky time.
Thank you
Love from
Nigel Joy
Sam Ben Luke Josh Isaac
XXxxxxx
Saturday, 6 December 2014
Saturday 20.45 Returned to children's ward
Samuel has returned to Sarum children's ward where he is being nursed 1-1. He is sleeping comfortably.
Post op Saturday 1800hrs
Surgery has finished and it went well with no complications. Samuel has fluid on his lungs and around his heart so the consultants are deciding if he transfers to Southampton paediatric intensive care unit or stay here in salisbury.
Saturday afternoon
A CT scan has confirmed the findings from the x ray last night. Sam has collections of air and fluid in his abdomen and a large obstruction. He needs surgery ASAP.
They can't find a bed in Southampton so the surgeons here in salisbury will operate. It would take to long to transfer him to Bristol or oxford. He will have an abdominal wash out and may need several more washouts during the next week. They will release the obstruction but as his bowel is infected it may be damage more. He may need a colostomy bag.
He will go to theatre in a few hours. He may be moved to salisbury intensive care unit until there is a bed in a paediatric intensive care unit or he may stay in the children's unit here. He will be in hospital for several weeks now.
Sam is very upset about the thought if another operation but he does not know all the details.
Friday evening
Samuel is Day 7 post op today. Much remains the same with Sam. Nil by mouth. NGT continues to drain. Fed by TPN. He has morphine PCA (patient controlled analgesia) which is helping his pain. His abdomen is very distended and wound remains open. Sam cherpy but fed up.
The consultants have been in touch with the paediatric surgical team to discuss Sam's progress (or lack of). They also are changing his antibiotics. They took X-rays which show Samuel has an obstruction. We have to Go to go to Southampton, Bristol or Oxford for emergency surgery. They will try to release the obstruction, they may need to remove a section of his intestine.
We are quite distraught now.
Thursday, 4 December 2014
Thursday Evening
Sam is looking much better today. He is bright and cheerful. His NGT is still producing aspirate and he has TPN feeding. He had a temperature overnight and this evening which continues to suggest that he has a pelvic abscess, but there are no plans to interfere with this at the moment. His wound remains open to allow the infection to escape. He had a food challenge which was unsuccessful and made Sam feel quite sick so the surgeons were called back to see him. He is now NBM again and they will decide what to do tomorrow unless he worsens overnight. Sam feels a bit down about this and we are feeling saddened that it is looking less likely now that he will come home this weekend. Ben is very tearful today and Luke angry about Sam not being with us. Please hold them in your prayers too. We are so grateful for all your kind messages and all the help we have been given. Thank you everyone! Xxx
Thursday
Last night was a bit unsettled but good sleep between. Sam is looking even more brighter today. He remains NBM. We are waiting for the surgeons to review him today.
- Joy
Wednesday, 3 December 2014
Wednesday
Sam is brighter again this afternoon which is encouraging. He is watching TV and showing interest in life again. Much remains the same with his paralytic ileus. His abdomen remains distended. He has 4 IV lines running. His NGT continues to drain his tummy, and his wound remains open.
We appreciate all the support that we are being given with meals and evening baby sitting. We have found a little routine and are just about managing to split ourself between our family at home and sam in hospital. Your messages and prayers for us are so valuable to us.
Thank you xx
Tuesday Evening
The mornings here are very busy with blood tests and dr reviews. Sam finds this quite upsetting.
Sams abdomen remains distended, his paralytic ileus is continues and is taking longer than expected to heal. Sam remains nil by mouth except for the occasional sip of water. The NGT and x4 IV infusions continue.
Sams recovery has plateaued. The surgeon explained that Sam may now be developing a pelvic abscess which is causing his occasional pyrexia, and delayed recovery.
Despite this, on my return to the hospital this evening Sam is looking much calmer & brighter he is watching the Lego movie (thank you Rosie!) ... he is not interested in playing to play minecraft yet though.
We are so appreciative of all the love that you are sending our way.
Tuesday, 2 December 2014
Tuesday Morning
Sam had a good sleep last night. He still has a paralytic ileus this morning and will remain on restricted fluids only. His Nasal Gastric Tube is draining lots and is less irritating to him. His tummy however is looking flushed again and his temperature is rising again so please pray that this can be controlled quickly. I did have a good sleep before 3am but I find it hard to sleep with the hourly alarming of the 4 IV pumps which are running so I'm feeling tired again. My day is very busy whilst I care for Sam and focus on the family so I apologise the daily update will be quite late after all is settled in the evening. Thank you again for the kind offers of help and encouraging messages. We are feeling loved and know God is with us.
- Joy
Monday, 1 December 2014
Monday Evening
Joy writes...
"Today Sam has more colour in his cheeks and he has been more awake. The TPN ( Nutrition into his vein) is building up his strength. He has spent longer lengths of time awake today. Sam is showing frustration to what has happened which also is a good sign.
This morning Sam's abdomen became flushed around the wound which is a sign of further infection. Marker pen was used to draw around the redness which indicated it was spreading. We were advised that he may need to return to theatre for a washout. The consultant Surgon was called and when they revealed his abdomen everyone was shocked to see that the redness had receded quite rapidly. What a quick answer to prayer that was PTL! (Praise The Lord!)
The consultant surgeon sat with us and explained that this was the worst appendicitis he had ever seen and Sam's recovery will be slow whilst we wait for the peritonitis to settle and his ileus is ready for food and drink.
The consultant said he was surprised how easy the surgery had been despite the state of Sam's appendix. We believe that this was because we had so many friends and family praying during Sam's surgery. Thank you everyone PTL!
His paralytic ileus continues. Sam is unable to eat and is showing frustration towards the fact that is only allowed to drink 5ml every 10 minutes, anymore makes him sick. He has however been well enough this evening to calculate how long it will take to drink all of his 500ml water bottle!
We really miss Sam not being with us at home. The house is not the same, despite 4 other little ones bouncing around it is far to quiet and we want Sam home soon.
Thank you everyone for your continued prayers and kind messages. We are feeling very blessed with such wonderful support from you all."
#praiseGod #prayforsam #Godisgreater
Monday
Joy has sent this...
" Sam remains fairly comfortable, the NGT irritates him more than any abdominal pain. However last night was not as restful as I hoped it might be! Sam was sick several times and his NGT leaked all over his bed several times (because there is not a proper paediatric bag to connect to a paediatric NGT). Every hour his drips alarm so they can be checked and reset....He had 3 IVI (potassium, antibiotic, and TPN feed). Zac also wanted 3 feeds last night ... He is resident in the ensuite shower room but wanted some of the action last night too! Sam is very weak he fell over in his haste to try and get out of bed before we were ready to help him (he never does anything slowly.. So this is a good sign that Sam is coming back). Sams wound dressing will be changed today, as it's an open wound this could be distressing for Sam. The pead says Sam is doing well considering what he has been through. It is a case of building him up (TPN will help give him strength) and waiting for the peritonitis and paralytic ileos to settle so that he can begin eating again, this may take several days. Thank you for all your kind messages they mean a lot to us."
Please keep praying for Sam and his family.
#prayforsam
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