After taking Sam to school this morning I went back to Glenfield.
Rebecca came home and I waited with Ben for his consultant to discharge him and the nurses to take his canulas out.
His consultant came to see us at midday and advised us that the cause of Ben's obstruction was a coronary artery that is in a strange place squashing his pulmonary artery against his breastbone. This is causing Ben to struggle when exercising and make him tired a lot of the time, and something needs to be done to relieve the pressure.
Our options are a 4th round of open heart surgery to cut away the offending coronary artery, or putting a stent into his pulmonary artery via keyhole surgery, in the hope that it squashes and kills this part of his coronary artery. Thankfully the consultant and surgeon don't want to make him endure a 4th round of surgery, so the keyhole surgery it is, even though they do not know if it will work.
We now have to wait for them to procure a stent, which is part of the jugular vein of a Japanese breed of cow, which we hope will be around Easter time.
Now this may strange, but in my 48 years on this planet, I think the sentence the consultant said where she advised they had decided on keyhole, is the most wonderful thing that has ever been said to me. We just have to hope that it works.
So we have all been home and had Pizza for tea, and had a normal family evening. Rebecca, Sam and me are drained.. Ben had a lot of sleep in the last 24 hours thanks to his general anesthetic, so he is as bright as a button!
This shot is a view of the ward corridor outside Ben's room, looking through the door. It sort of sums up the numbness in my brain over these last 2 days while we waited for a diagnosis and the good news about his next round of treatment.
Thank you to all my friends for your messages of support over the last few days. They mean so much to me, and when conveyed to Ben, he was very touched.
Back to normal tomorrow hopefully, though he is off school resting his op site.
Sean - Glad things look a little brighter- I know what it feels like to have a sick child and that numbness. I like the shot BTW- I'm doing abstracts this week- would be perfect.
Oh Sean what a worrying time for you all. Hope Ben recovers from this treatment and wishing you all strength and success for the stent when it is fitted.
Great shot by the way. This time last year I was also taking a shot in the hospital.
That does all sound hopeful and amazing at the same time. Thank goodness there is so much the medical profession can achieve in this day and age. Have a good night's rest.
Love the abstract shot and the encouraging words you received. Thank the Lord he doesn't need another open heart surgery. Praying that the stent is found quickly and does the job right. Glad that today was better. Send my love to Ben and tell him I think he is very brave.
@japers45@ccb@paulaw Thank you all. I am very grateful for your thoughts and support. This has been a 14 year journey fo rus and we are so appreciative of all the support we've had over the years, it has been a huge help for us. I shoudl add that Ben has been incredible these last 2 days. His stoicism and grace are an example to us all. John, I am so sorry to learn of your burden. Celia, it is so good to see shots of John looking well a year on. Thank you Paula, I know how much you have gone through of late, so I am touched by your kindness and strength of spirit
@amandal Thank you Amanda, he is so brave, his strength humbles me, I have said it before but he is my hero. Your thoughts are welcomed and I am grateful for all your encouragement, not just today, but everyday.
My boy is all good now Sean just like Ben will be later this year. He was very poorly when he was born. But we went from a hospital who were virtually writing him off to a hospital that said - " we are going to get him better"- It was Glenfield in Leicester, their PICU ward were amazing. Ben is in good hands.
@japers45 That is so heartwarming John. Ben spent a few days in Glenfield PICU after his last op, and we've been in Glenfield ward 30 these last 2 days.
I think you've captured the sense of waiting - staring at walls.
Really hope the stent works for him. I know the prospect of more surgery is horrid, but hopefully you can take some comfort from the fact it's there as a fallback option.
Really admire Ben's strength and positive attitude. The bravery of your whole family is amazing. Your photo brilliantly conveys your state of mind. Will be thinking of you.
@cathywright Thank you Cathy. That is kind of you. As I have said many times, Ben is my hero. He has taught me how to respond to adversity, he is incredible.
Until reading your other post I wasn't fully aware of the challenges your son had faced. His bravery at such a young age is quite incredible, I really hope that the stent is successful. Another positive I'm sure you can take from this is that it is evident from your posts that you are a very strong family unit, and that is something to be cherished.
What a long journey you have had before reaching this point. All fingers crossed for the future. Yes that picture perfectly symbolises that blank feeling while you are waiting, the black line just stretching along with your feet on it. Well done Ben and all best wishes go your family.
No wonder you are so proud of Ben, Sean. But it's so difficult when you can't take their place and go through it instead of them, isn't it?
I do hope the stent turns out to be the solution for Ben's condition. Thinking of Ben and all of you and wishing you all the strength you need for the days ahead.
There is hope. That is all Ben needs to think about. Children live in the moment and things roll off their backs much easier than for adults. It is our job to worry, not theirs. Celebrate life and enjoy the moments. God stands with all the children and will be there when the need arises. May God give confidence and sureness to the doctors and surround Ben with all the peace and the love that goes out to him.
@dulciknit I've just been sat in his room talking to him Alison, he is wide awake!! He is incredible. You are right, I would happily go through it for him, though I would be petrified! Thank you for your good wishes, which are very kind, and gratefully received by us all.
Lovely to see all the support & love expressed here for you all ......the stent option sounds good & we know stents do amazing repairs & recoveries. Poor Ben he must not have been feeling himself for some time, lets hope that this really transforms his life.
He will be a new man!!
I'm so sorry to read that Ben has to have more surgery - what a remarkable young man he is. The photo from yesterday certainly looks as though he is coping well. You are all in my thoughts.
Wow... what a couple of days you must have had! I can appreciate the numb feeling and worry you must have felt! I like the keyhole option - with a cute name like that it's got to be good!! Hang in there O'Neill family!!
Sean, I didn't know about your son's health problem . Thanks for sharing your story with us. I read between the lines that you are all very strong and tackle the problem with so much courage. Ben really is a hero, at his young age, so brave and with such stamina.
I sincerely wish that the new stent will work. My thoughts are with you.
OH my goodness! It is truly amazing what they can do nowadays - I surely hope this is the perfect and easiest solution for him - many healing thoughts his way!
What a story to tell, I´m really sorry to hear Ben´s health problems but glad that he´s doing better now ! I wish strenght to you and your family!
Fantastic simplicity in this shot, and somehow it fits perfectly for this story!
So sorry to hear what you are going through - I cannot begin to understand the problems faced but through seeing your family on here, I get the distinct impression that you are a very strong unit and will tackle whatever comes your way together, The news today seems very positive and, as I am sure you know, we have an excellent NHS service with the most amazing, caring staff so your son is in good hands and I wish you and your family all the best
@jocasta@dejongdd@alexbell@shannejw@kwind@mara19500@rvwalker@saphyress@susale@andyr@soboy5@chlyo72@stoat Thank you all for such heartwarming support. We are all very relieved that Ben is going to have keyhole surgery for his next operation, it kind of feels like winning the lottery. The support of friends and family on and off 365 is a great boost for us all, and we are eternally grateful. Ben is back to his normal chatty self today, and was so grumpt when I contacted school and got some homework sent over to him. That's the spirit!
I can certainly understand the numbness of the brain and how much can one handle. I greatly admire your strength as a family unit, the support you give to one another. I also admire your sharing, of what you are facing, what you are feeling and how you pull together to carry on in the face of adversity. You never know who is reading your words and how they can be encouraged in their own trials in life. Your strength and positive outlook is powerful! I will keep you all in my prayers. Fight the good fight and never give up!
Thinking of you and your family Sean, it is an amazing thing that they will be able to perform keyhole surgery on Ben, but daunting all the same. Hope he is feeling all the good vibes being sent to him from 365.
Great shot by the way. This time last year I was also taking a shot in the hospital.
Really hope the stent works for him. I know the prospect of more surgery is horrid, but hopefully you can take some comfort from the fact it's there as a fallback option.
I do hope the stent turns out to be the solution for Ben's condition. Thinking of Ben and all of you and wishing you all the strength you need for the days ahead.
He will be a new man!!
I sincerely wish that the new stent will work. My thoughts are with you.
Fantastic simplicity in this shot, and somehow it fits perfectly for this story!
It is also a brilliant photo.
Glad things are looking up!