The last 10 days have been the worst time of my life.
One of our boys has Quad CP, and complex congenital heart defects which because of his CP have never been corrected. He has a severe Kyphosis which means his heart is now wrapping around his spine. He is bright and understands everything that is said.We were told this time last year that the only option now was palliative care and his time would be short.
10 days ago he started to cough up blood, lots which included clots, we were told this is due to abnormal vessels in his lungs which are leaking blood into his airway. By the evening he was very ill having had 4 episodes and us having suctioned more than 200mls of blood each time. We called for a ambulance the local hospital told us there was nothing they could do for him and it would be less distressing for him if we had him at home and kept him comfortable as all his medical notes said palliative care was the only option.
The bleeding continued for the next 5 days , 4 times a day and huge amount of blood each time. The GP visited and gave us some oromorph. He became weaker and paler and was either sleeping , vomiting or coughing up the blood. The local children's hospital and paediatric cardiologist told us the same thing.
By this Wednesday , we couldn't bear to watch him suffer any more , we know he is dying but could not watch him bleed to death. We put him the car and drove to Birmingham Children's Hospital to see his old cardiologist. He has been an angel. By the time we got there his lung had collapsed and they told us he had lost over half the blood in his body. They have stop the bleeding and he is now much more comfortable. We have him home again because this is where he wants to be. Things have been really traumatic , I hope you don't mind me posting I just needed to get it out of my head.
Julie

(12-05-2009 01:32 PM)mumof10 Wrote:  The last 10 days have been the worst time of my life.
One of our boys has Quad CP, and complex congenital heart defects which because of his CP have never been corrected. He has a severe Kyphosis which means his heart is now wrapping around his spine. He is bright and understands everything that is said.We were told this time last year that the only option now was palliative care and his time would be short.
10 days ago he started to cough up blood, lots which included clots, we were told this is due to abnormal vessels in his lungs which are leaking blood into his airway. By the evening he was very ill having had 4 episodes and us having suctioned more than 200mls of blood each time. We called for a ambulance the local hospital told us there was nothing they could do for him and it would be less distressing for him if we had him at home and kept him comfortable as all his medical notes said palliative care was the only option.
The bleeding continued for the next 5 days , 4 times a day and huge amount of blood each time. The GP visited and gave us some oromorph. He became weaker and paler and was either sleeping , vomiting or coughing up the blood. The local children's hospital and paediatric cardiologist told us the same thing.
By this Wednesday , we couldn't bear to watch him suffer any more , we know he is dying but could not watch him bleed to death. We put him the car and drove to Birmingham Children's Hospital to see his old cardiologist. He has been an angel. By the time we got there his lung had collapsed and they told us he had lost over half the blood in his body. They have stop the bleeding and he is now much more comfortable. We have him home again because this is where he wants to be. Things have been really traumatic , I hope you don't mind me posting I just needed to get it out of my head.
Julie

Julie - that must have been horrible to watch, feeling so helpless. I'm glad the doc was at least able to make him more comfortable.

Thinking of you all
Val

oh goodness what an awfull time (((hugs))) it must be terrible to watch your child go through such a terrible ordeal. Regardless of whether he is documented to have pallative care only, they shouldnt let him suffer by allowing him to continually bleed, its hardly humane really. I'm glad they sorted it in the end......we're all thinking of you. xxxxxxx

Hi Julie,
What you must be feeling at the moment must be the worst type of pain possible to any person.
Losing a child i could imagine would just be the worse blow imaginable.
Their is no need to ak if you can post this as the forum is here to support people both through good and bad and you can type away with what you want.

I am really feeling sad just knowing about this as it really makes you realise how short life can be and how cruel it can be.
Please make a pact to enjoy the time you have and do something special if he is strong enough.

Even if it is just some favourite songs or drinks or something do all you can so when he does leave you have more fond memories on top of the ones you have already.

Please feel free to pop on anytime and chat away or just get it all out.

I am thinking about you and really hope they can control the pain in the best way possible.
Enjoy them cuddles now and saviour every moment.
Have the doctors given you a timeline on what to expect?

((((((hugs)))))))