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.
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