Back here at The Little Terraced House, we are surrounded by most or our belongings packed in storage boxes. Every thing should have been shipped out to Perth last week, but for now its on hold. So I am at the stage of unpacking essentials such as warm clothes (I don't think I have been warm since we arrived back here) and cooking items, baking trays etc. I want to get the pressure cooker back out, but I know its in box 13 which is under boxes 14, 15, 16 and 17 and behind boxes 24, 25, 26, 27 and three mirrors, and to be truthful its too much effort right now. I located the slow cooker so that will have to do.
Himself has not been at all well since we arrived back. He was diagnosed with type 2 diabetes about 12 months ago and we had it fairly well under control until recently. Now we can't seem to get his blood sugar count down to anything near sensible regardless of what we do or what he eats. His blood pressure is also sky high and he is having mood swings which have to be seen to be believed. He does know that he is having them which is one good thing. (Imagine a room full of women with PMT) - well he is like all of them at the same time !!!!!! :-)
I have an interview for a job here tomorrow, so fingers crossed that it comes off as we need finances of some sort whilst we sort out what the heck we do next.
Charlie will be seeing his new medical consultant at the end of this month, so we may know if and when his next op will be. I though I would put some of the details of HLHS on here so you can see the challenges this little man of mine has faced.
Hypoplastic Left Heart Syndrome - which means the left side of the heart does not develop or is under developed
STAGE 1 – Norwood
This surgery is preferably performed in the first week of life. A repair is made to allow the right ventricle to pump blood to both the lungs and the body. Because blood flow must be forceful for the immature lungs, the surgeon creates a tube from a branch of the aorta to the pulmonary artery known as the modified Blalock-Taussing shunt. The baby will still appear blue (cyanotic) after this surgery. Charlie had his done at 1 day old, we hadn't even been able to cuddle him at this stage. 6 hour surgery.
STAGE 2 – bi-directional Glenn or Hemi-Fontan
This surgery is preferrably performed at about 6 months of life when the blood starts to flow more easily and the ventricular force is not needed. The surgeon creates a direct connection between the superior vena cava and the pulmonary artery thus diverting half of the blood flow without the assistance of ventricular force. This reduces the work on the right ventricle by allowing it to only pump blood to the body and allowing all blood from the upper body to the lungs. Charlie had this done at about 8 months old and had to have a third open heart op as the aortic arch kept collapsing. It turned out that his vocal cord nerve was wrapped around it and in doing the repair Charlie lost his voice for nearly two months and the surgeons did not know if he would get it back. He did get his voice back eventually, but it is so distressing watching a baby silently crying in pain....
This surgery is preferrably performed at about 6 months of life when the blood starts to flow more easily and the ventricular force is not needed. The surgeon creates a direct connection between the superior vena cava and the pulmonary artery thus diverting half of the blood flow without the assistance of ventricular force. This reduces the work on the right ventricle by allowing it to only pump blood to the body and allowing all blood from the upper body to the lungs. Charlie had this done at about 8 months old and had to have a third open heart op as the aortic arch kept collapsing. It turned out that his vocal cord nerve was wrapped around it and in doing the repair Charlie lost his voice for nearly two months and the surgeons did not know if he would get it back. He did get his voice back eventually, but it is so distressing watching a baby silently crying in pain....
STAGE 3 – Fontan
This surgery is preferably performed between 18 – 48 months. The surgeon connects the inferior vena cava to the pulmonary artery. This will allow the remaining blood coming back from the body to go directly to the lungs. The final result will be no mixing of blood in the heart with more oxygen rich blood going to the body. This will significantly improve the child’s health and growth.This is the next op that Charlie will have - date as yet unknown.
This surgery is preferably performed between 18 – 48 months. The surgeon connects the inferior vena cava to the pulmonary artery. This will allow the remaining blood coming back from the body to go directly to the lungs. The final result will be no mixing of blood in the heart with more oxygen rich blood going to the body. This will significantly improve the child’s health and growth.This is the next op that Charlie will have - date as yet unknown.
Heart Transplant – May be required.
HLHS requires a life time of follow up care. Most HLHS patients will require heart medications for life. They are at a high risk of heart valve infection (endocarditis) and require antibiotics before dental work and most surgeries. At this time, life expectancy is relatively unknown. 70% of infants who survive heart transplant or the Fontan will survive to the age of 5. Whether he will eventually need a transplant we don't know as yet. All the surgeries carried out for HLHS are palliative care, there is no cure for HLHS, but the series of three ops are hoped to get HLHS children to teenager hood where by if they do need a transplant they would be of a physical size to accept an adults heart if a matching one was available. (it is very rare for a child's heart to be available for fairly obvious reasons)
HLHS requires a life time of follow up care. Most HLHS patients will require heart medications for life. They are at a high risk of heart valve infection (endocarditis) and require antibiotics before dental work and most surgeries. At this time, life expectancy is relatively unknown. 70% of infants who survive heart transplant or the Fontan will survive to the age of 5. Whether he will eventually need a transplant we don't know as yet. All the surgeries carried out for HLHS are palliative care, there is no cure for HLHS, but the series of three ops are hoped to get HLHS children to teenager hood where by if they do need a transplant they would be of a physical size to accept an adults heart if a matching one was available. (it is very rare for a child's heart to be available for fairly obvious reasons)
Birmingham Children's Hospital where Charlie has had his previous 3 majors and 4 minor ops, are wonderful and we know that their survival rate is growing year on year with the ops that they carry out, which does give us hope for the future.
What is so wonderful (in some ways) is that if you saw my little monster, you wouldn't immediately know that he has a life threatening illness which could kill him in a second. He is growing quite well, although Lewis at a year younger is about to over take him in height and weight, and he zips about like most 3 year olds, but get breathless quickly and goes blue, so he has to have plenty of quiet times to give him breathing space - not easy when your 3 year old head says 'I want to go and do xxxx' !!
This five weeks is the longest I have been apart from my little monsters and I am missing them so much that it hurts. Talking to them on skype is just not the same as a hot sweaty hug, and hearing Charlie saying, 'Nana you get in your car and come to my house now!' breaks my heart.
This photo was taken last year at Brighton and is one of my favourites. Lewis (Mr hollow legs) had just swiped Charlie's muffin out of his hand and you can see Charlie looking at him as if to say 'Oi give it me back!!'
