The quick update on how Joshua is getting on.
Well my little man turned six a few weeks back time is really flown by so very quickly and we're so proud of everything he is achieved in the last six years, we never thought he'd actually get to that day.
His last cardiac appointment went reasonably well. Dr Dhillon found a muscle bundle on the right ventricle which can obstruct any time, his echocardiogram showed his murmur is still very harsh and there is a very slight fenestration on the Fontan. His sats are still very high and there will just keep an eye on him.otherwise if they are very very pleased with them. We have however since his last appointment changed to a different consultant, we had a few problems with Josh's medication, the GP refused to prescribe it, dr Dillon didnt seem to be very bothered!
I'm happier now his warfarin levels are perfect and we are now doing home testing which is so much easier and Joshua even prefers it as well, so that's real blessing.
He started year one in September and is doing really well, although at the moment he's struggling to do a full week because he's so tired. He really likes Miss Patrick and also she's a really good teacher and I'm very very pleased with her.
Megan went to Robinwood adventure and had the time of her life, didn't think that she would enjoy it that much, but she came back was totally amazed by the whole experience. She had a wonderful time and were very proud of her.
Both Megan & Joshua have wobbly teeth so we're a bit concerned when it comes to josh because of his warfarin so he's going to bleed a lot that's going to be an experience!!That's all for now folks. Will hopefully blog again very soon just before Christmas :)) only five weeks to go till the man in the big red suit comes down the chimney. Take care from now.
- Posted using BlogPress from my iPhone
Wednesday, 6 April 2011
Update!
Oops have been rather busy since Josh came home and haven't had time to update blog..sorry!
Well firstly his post op went well, sats around 88-93% which is fab! Heart function good slight tricuspid regurgitation and 2/6 systolic murmur on the eternal edge. All meds stayed the same diuretics down to once a day. He has been a real star, his INR levels are really stable and have now gone from weekly, fortnightly to every three weeks. He is going again in Friday so really hope he has remained stable.
We are waiting for another cardiac out patients appointment which should be at the end of April.. Eek. Regardless of how many times you go it never gets any easier and still terrifies me, you are never sure of what they are going to find or say! I don't think it will ever be easy. I think now that he's had the fontan it's Slightly harder because you know theres nothing else they can do, it very scary!!.
We are still not back at home:( it has been 13 weeks since it happened. However the kitchen has been ordered and we should be back home in the next 4 weeks(I hope).
It's not to long know till we take are much needed holiday, and I really can't wait to lie on the beech with the sun blazing sipping a nice cold drink. Just what the doctor ordered!!
I first to say Josh was back to school 6 weeks post op, he did a week of half days and then full time since. He has coped so well and we are all very proud of him. Way to go my little hero. We love you both so very much.
Will update After clinic. Good bye for now.x
- Sent from iPhone
Well firstly his post op went well, sats around 88-93% which is fab! Heart function good slight tricuspid regurgitation and 2/6 systolic murmur on the eternal edge. All meds stayed the same diuretics down to once a day. He has been a real star, his INR levels are really stable and have now gone from weekly, fortnightly to every three weeks. He is going again in Friday so really hope he has remained stable.
We are waiting for another cardiac out patients appointment which should be at the end of April.. Eek. Regardless of how many times you go it never gets any easier and still terrifies me, you are never sure of what they are going to find or say! I don't think it will ever be easy. I think now that he's had the fontan it's Slightly harder because you know theres nothing else they can do, it very scary!!.
We are still not back at home:( it has been 13 weeks since it happened. However the kitchen has been ordered and we should be back home in the next 4 weeks(I hope).
It's not to long know till we take are much needed holiday, and I really can't wait to lie on the beech with the sun blazing sipping a nice cold drink. Just what the doctor ordered!!
I first to say Josh was back to school 6 weeks post op, he did a week of half days and then full time since. He has coped so well and we are all very proud of him. Way to go my little hero. We love you both so very much.
Will update After clinic. Good bye for now.x
- Sent from iPhone
Sunday, 20 February 2011
Yippee Josh was discharged on Friday the 11th feb, they decided we could do whatever the hospital was doing at Home. He has had good and bad days but is improving daily. He has developed a nasty cough!
He has had his INR done twice since coming home, one Venus and the other a normal Coag check, bless him he hasn't been bothered about either of them. His INR has been pretty stable and I so hope it continues to, we will then be able to home test.
We have been so lucky with his Coagucheck machine, we have a fabulous friend (Lewis) whom dis the Portsmouth half marathon and raised lots of cash, so a massive thank you to him and to all who sponsored him. Our lady of the angels school(Joshua's infant school) had a wear red day to help raise money and wow £697 was raised, so massive thank you to Kelly Wroe and Helen Freeguard for the support you have given to us and the hard work you have put into the fundraiser event. There are Some truly lovely people about and we have been so blessed with the amount of support(Gemma and Ade, Vicky and lew, Rob and Julie, all my special heart mummies Ali, Lindsey, Kay, Kymm,Steph and Ann-Marie and so many more)a massive thank you from the bottom of our hearts for just being there.
Hopefully we will be back in our own home soon, will
Put some more pictures on then.
We are back in Bch on the 3rd march for our post op appointment so will keep
You updated on that.
Josh hasn't slept very well since being at home, so bed time for me.
Good night and god bless.
- Sent from iPhone.
He has had his INR done twice since coming home, one Venus and the other a normal Coag check, bless him he hasn't been bothered about either of them. His INR has been pretty stable and I so hope it continues to, we will then be able to home test.
We have been so lucky with his Coagucheck machine, we have a fabulous friend (Lewis) whom dis the Portsmouth half marathon and raised lots of cash, so a massive thank you to him and to all who sponsored him. Our lady of the angels school(Joshua's infant school) had a wear red day to help raise money and wow £697 was raised, so massive thank you to Kelly Wroe and Helen Freeguard for the support you have given to us and the hard work you have put into the fundraiser event. There are Some truly lovely people about and we have been so blessed with the amount of support(Gemma and Ade, Vicky and lew, Rob and Julie, all my special heart mummies Ali, Lindsey, Kay, Kymm,Steph and Ann-Marie and so many more)a massive thank you from the bottom of our hearts for just being there.
Hopefully we will be back in our own home soon, will
Put some more pictures on then.
We are back in Bch on the 3rd march for our post op appointment so will keep
You updated on that.
Josh hasn't slept very well since being at home, so bed time for me.
Good night and god bless.
- Sent from iPhone.
Location:Discharged on Friday 11th
Wednesday, 9 February 2011
It's been an eventful day today, on the dr's round they told us that one of the blood tests they did yesterday have come back high( it was one for infection!) hopefully it will be due to the drains being in such a Long time. They decided to take out His last drain today. It took 2 lots of midazolam to work, this time he didn't sleep just talked alot and giggled, to see the drain taken out this time was just as awful or even more so this time. He kept asking me to make them stop hurting him! It broke my heart. Thankfully he can't remember anything.
He was much brighter this evening( still very high on midazolam!!) it's funny to see a 5 year old act as if they've had a good beer session!!! His appetite has picked up today as well.
Hopefully his bowels will start having a good clear out and he can start putting loads of weight back on, he was weighed again today and he has lost 2kilo's, he looks very frail and its hard to see him Like it.
This is the first picture without drains with his big sister sat on the floor playing.
- Sent from iPhone.
He was much brighter this evening( still very high on midazolam!!) it's funny to see a 5 year old act as if they've had a good beer session!!! His appetite has picked up today as well.
Hopefully his bowels will start having a good clear out and he can start putting loads of weight back on, he was weighed again today and he has lost 2kilo's, he looks very frail and its hard to see him Like it.
This is the first picture without drains with his big sister sat on the floor playing.
- Sent from iPhone.
Saturday, 5 February 2011
Well what a few days it's been.
Josh still has all three drains in, the left and middle could come out but his INR has been to high so fingers crossed for tomorrow!
Dr Dhillon has been through all his previous echo's and the right ventricle has always had this problem but was not apparent until now.
They are concerned but want to concentrate on getting him better at the moment.
His appetite has been really bad, vomiting alot and now has diarrhoea (poor little man is going through it!)
They have got the dietician involved as he has lost a lot if weight so he's now on special drinks full of calories!!
He had a fun time yesterday with the play specialist( and mummy and daddy!!)we did syringe painting! It was great fun and to see him smile was fab.
The plan of action next week will be catheter sometime next week and hopefully sort out any warfarin issues.
On Tuesday he had teachers from
School come and visit him. It really cheered him up and he was very happy with the lovely card all his friends made him and the wonderful gifts that they sent. Thank you to all the children in reception, Joshua misses you all (especially Alfie!)thank you to all the staff at our ladys and also at St Josephs the support you have given us has been fantastic and we really appreciate in all you have done.
The support we have received from some people has been amazing and we can't thank you enough. Lewis and Vicky thank you for raising the money for his INR machine we can't thank you enough. It will make our lives so much easier. Any money raised after the cost of the machine will be going to Birmingham Children's heart appeal as this is so close to out heart, if it wasn't for the expert care Josh has received he would not be with us now, we owe everything to the whole cardiac team(especially the surgeons!).
Will update again Monday when we will have more of an idea what's going on.
- Sent from iPhone.
Josh still has all three drains in, the left and middle could come out but his INR has been to high so fingers crossed for tomorrow!
Dr Dhillon has been through all his previous echo's and the right ventricle has always had this problem but was not apparent until now.
They are concerned but want to concentrate on getting him better at the moment.
His appetite has been really bad, vomiting alot and now has diarrhoea (poor little man is going through it!)
They have got the dietician involved as he has lost a lot if weight so he's now on special drinks full of calories!!
He had a fun time yesterday with the play specialist( and mummy and daddy!!)we did syringe painting! It was great fun and to see him smile was fab.
The plan of action next week will be catheter sometime next week and hopefully sort out any warfarin issues.
On Tuesday he had teachers from
School come and visit him. It really cheered him up and he was very happy with the lovely card all his friends made him and the wonderful gifts that they sent. Thank you to all the children in reception, Joshua misses you all (especially Alfie!)thank you to all the staff at our ladys and also at St Josephs the support you have given us has been fantastic and we really appreciate in all you have done.
The support we have received from some people has been amazing and we can't thank you enough. Lewis and Vicky thank you for raising the money for his INR machine we can't thank you enough. It will make our lives so much easier. Any money raised after the cost of the machine will be going to Birmingham Children's heart appeal as this is so close to out heart, if it wasn't for the expert care Josh has received he would not be with us now, we owe everything to the whole cardiac team(especially the surgeons!).
Will update again Monday when we will have more of an idea what's going on.
- Sent from iPhone.
Monday, 31 January 2011
Saturday, 29 January 2011
Yesterday we had a reasonable day, Josh was still very sleepy. He had his pacing wires removed(yippee) he still needed some oxygen support(this is not unusual for him!!)once they did the echo we were told he had a problem in the right ventricle, where the blood passes through the 2 muscles there seems to be an obstruction, they are investigating what it is and hopefully we should find out soon. His renal function is improving which is fantastic news( his kidneys are repairing themselves).
He had a really unsettled night bless him, he's so constipated he's in pain, we have tried everything.
We had a lovely visit from friends of ours who's little boy is having his fontan soon, thanks Linz for the goodies( yummy!!) also Josh loved His presents.
He was a lucky little man with the cards and presents received today, thanks Steph and Ali.
Saturday- wow what a difference, he went for a little walk(with his trolley!) he was so brave:)
CVP line removed:))) renal function improving :)))) he is so much more alert, he had a lovely visit from his bestest friend Alfie, thanks Gemma and Ade for bringing the boys and for the lovely presents,Josh was rather fed up today but if I had to go through what he is, I would be the same. We are so proud of what he's achieved in the past few days (years!) heart kids are amazing.
Some people really don't understand the severity of Joshua's condition(ignorant if you ask me!!) because he looks so well and not ill, what they forget is they dont have to have major heart surgery to stay alive and once they've had all 3 major open heart surgery they really are on borrowed time, the only back up plan left is heart transplant(still not guaranteed)
Yes Josh got through 2 major ops when he was first born ( touch and go most of the time and my god he had to fight) didn't give us the guarantee for this one, as for not being worried about him just shows how
uncaring they are and that they never understood his condition( or wanted to!!)
Life at the minute for us is a rollercoaster,he's going to have good days and bad, when you think things are going well something else will happens, the only time we will start relaxing and thinking he's out of the woods is the day he gets discharged, childen who have this op are unpredictable( coming from a dr's mouth might add!) never trust them until there out the door.
Rant over!!!
We would like to thank everyone for all the wonderful messages either on facebook or by txt. The support has been amazing. Thanks to everyone who had visited it had cheered Josh up.
Well going to try and get some sleep but the ward is rather noisy!! Ear plugs needed me thinks!!
Good night all.xx
- Sent from iPhone.
Thursday, 27 January 2011
Well what seemed to be a good start hasn't gone great, dr spoke to me this morning and Josh's renal function isn't great,if it doesn't sort itself out in a few day he could end up on dialysis, they are going to redo bloods In the morning hopefully the Urea and creatinine will come down.
When they did his obs this afternoon, they noticed he has air in one of his cheat drains, the surgical reg has been up and it looks like he a hemathorax, this will clear itself with the help of oxygen.
Josh still needs oxygen as his sats are dipping to mid 80's and they want them in the 90's. He's had a few vomits today and saying he feels really poorly. He has slept all day bless him.
Really hope he starts improving soon, he's doing so well and he's fighting hard. Positive vibes and lots of healing prayers are needed.
When they did his obs this afternoon, they noticed he has air in one of his cheat drains, the surgical reg has been up and it looks like he a hemathorax, this will clear itself with the help of oxygen.
Josh still needs oxygen as his sats are dipping to mid 80's and they want them in the 90's. He's had a few vomits today and saying he feels really poorly. He has slept all day bless him.
Really hope he starts improving soon, he's doing so well and he's fighting hard. Positive vibes and lots of healing prayers are needed.
Wednesday, 26 January 2011
Tuesday, 25 January 2011
It's 4:15am and finally my little man is awake and off the ventilator. There are a few issues with the gases in his body which are from the heart and lung machine and he's needing potassium and lots of gelo bolases. Hopefully this will sort out the gases in his body. He is draining well!!
When he decided he wanted to come of the vent he was a very brave little man, he cooperated with both the nursing staff and drs and didn't get to distressed. He has since settled down and drifted back to sleep.
Words can't describe how proud I am of him, he melts my heart everytime. He can't wait to see his Daddy and big sister Meg, grandma and grandpa and Alfie of course!!
Megan has been an amazing little girl, she went to school and after went to Gemma and Ade's house, from what I've been told she's had a fab time. She's not at school today as she would like to see Josh which is understandable.
We are so lucky to have to wonderful children, we love them both dearly.
- Sent from iPhone.
When he decided he wanted to come of the vent he was a very brave little man, he cooperated with both the nursing staff and drs and didn't get to distressed. He has since settled down and drifted back to sleep.
Words can't describe how proud I am of him, he melts my heart everytime. He can't wait to see his Daddy and big sister Meg, grandma and grandpa and Alfie of course!!
Megan has been an amazing little girl, she went to school and after went to Gemma and Ade's house, from what I've been told she's had a fab time. She's not at school today as she would like to see Josh which is understandable.
We are so lucky to have to wonderful children, we love them both dearly.
- Sent from iPhone.
Josh went down to theatre just before 1:30, he had a pre-med so thankfully didn't realize what was going on.
He finally came out of theatre at 5:40 but we didn't get to see him till 6:45 it was the longest wait ever.
The operation went very well and Mr Jones was really pleased.
So far he doesn't want ti wake up, normally they are awake within a few hrs but not Josh! He's having to nicer sleep.. Tinker. He's potassium levels are low but that's normal for little man, hopefully he will be awake soon as I so want to give him the biggest kiss ever, a cuddle would be lovely but very impossible at the moment.
That's all for now will post when he's more awake and hopefully on the ward.
- Sent from iPhone.
He finally came out of theatre at 5:40 but we didn't get to see him till 6:45 it was the longest wait ever.
The operation went very well and Mr Jones was really pleased.
So far he doesn't want ti wake up, normally they are awake within a few hrs but not Josh! He's having to nicer sleep.. Tinker. He's potassium levels are low but that's normal for little man, hopefully he will be awake soon as I so want to give him the biggest kiss ever, a cuddle would be lovely but very impossible at the moment.
That's all for now will post when he's more awake and hopefully on the ward.
- Sent from iPhone.
Monday, 24 January 2011
Not had the best nights sleep, was really uncomfortable last night and it was rather noisy last night in the ward.
Josh had his drip put up a little while ago, he was such a brave boy. They have put the cannula in an awkward place and that's why it hurts him so much, he has just gone back to sleep which is a good job as he's know nil by mouth.
- Sent from iPhone.
Josh had his drip put up a little while ago, he was such a brave boy. They have put the cannula in an awkward place and that's why it hurts him so much, he has just gone back to sleep which is a good job as he's know nil by mouth.
- Sent from iPhone.
Unfortunately we were cancelled at 9:30am, they had a transplant in theatre and also another child from itu who needed to go back into theater. We could be in the same situation ourself one day, it's so annoying when you do get cancelled but you have to put everything into perspective and think it could be us one day, in the very situation and in actual fact we were in that situation five years ago( in 7 days time!),so my heart goes out to those children's parents.
We have been consented tonight by Mr Tim Jones, he will also be doing Joshua's op. They are planning on doing it first on the list but because theatres have an audit morning it won't start till around 11ish.
He has Been a very brave little super star today, his cannula tissued this morning and also this evening and it's so painful he was sobbing.he had a lovely special pink bath, both last night, this morning and also tonight, I would say he's defiantly surgically clean!!
I'm lying next to him whilst he's sleeping and just thinking I could just run away with him, if only I could have the surgery for him, it's heart breaking to see them go through so much and not be able to stop all the bad things happen, it's horrid when every decision is taken out of your hands when it comes to your own child and to be separated from your other children and husband. Being in hospital makes you appreciate how precious life actually is and what's really important in life and thing for sure.. I love my two so very much, they are my world, they are the reason I wake every morning.
I love you Meg you are being such a brave girl, I know how hard it is for you sweetheart and I can't wait to see you tomorrow.I am so very proud of how grown up you are and how well you deal with everything.x
Josh- you are an inspiration to many, your such a brave little boy, I am so sorry that we have had to put you through all if this but it's worth it, mummy wishes I could do it all for you, I will always be at your side every step if your life.we are so very proud of everything you've had to deal with. Our true super hero.
Thank you for all the wonderful messages, need lots of prayers and positive vibes for tomorrow please.
Goodnight, sleep tight and don't let the bed bugs bite!!
- Sent from iPhone.
We have been consented tonight by Mr Tim Jones, he will also be doing Joshua's op. They are planning on doing it first on the list but because theatres have an audit morning it won't start till around 11ish.
He has Been a very brave little super star today, his cannula tissued this morning and also this evening and it's so painful he was sobbing.he had a lovely special pink bath, both last night, this morning and also tonight, I would say he's defiantly surgically clean!!
I'm lying next to him whilst he's sleeping and just thinking I could just run away with him, if only I could have the surgery for him, it's heart breaking to see them go through so much and not be able to stop all the bad things happen, it's horrid when every decision is taken out of your hands when it comes to your own child and to be separated from your other children and husband. Being in hospital makes you appreciate how precious life actually is and what's really important in life and thing for sure.. I love my two so very much, they are my world, they are the reason I wake every morning.
I love you Meg you are being such a brave girl, I know how hard it is for you sweetheart and I can't wait to see you tomorrow.I am so very proud of how grown up you are and how well you deal with everything.x
Josh- you are an inspiration to many, your such a brave little boy, I am so sorry that we have had to put you through all if this but it's worth it, mummy wishes I could do it all for you, I will always be at your side every step if your life.we are so very proud of everything you've had to deal with. Our true super hero.
Thank you for all the wonderful messages, need lots of prayers and positive vibes for tomorrow please.
Goodnight, sleep tight and don't let the bed bugs bite!!
- Sent from iPhone.
Location:Cancelled again today
Sunday, 23 January 2011
Well we are all systems go, josh is 2nd on the lust so should be going around 12:30ish but still you never can tell!!
He has been a really brave boy today and had his cannula in(after 5 attempts!) it really hurt him but we are so proud of him. He got very upset tonight when he said goodbye to his daddy and sister he wanted us all to stay together.
We have a wonderful messages from everyone and as a family we want to thank each and everyone of you.
Please keep us in your thoughts tomorrow and send us some positive vibes. Until tomorrow goodnight and god bless.xxx
- Sent from iPhone.
Saturday, 22 January 2011
Fontan cancelled again!
We had a call late Wednesday evening to say they had to cancel his op due to over run off theatre time. We were given another day thankfully 2 days later but again it was cancelled yesterday. Josh should be going in tomorrow for op on Monday, I will keep his blog updated as to what's going on.
- Sent from iPhone.
- Sent from iPhone.
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