caring bridge 2/7/2010

Friday, July 2, 2010 11:06 PM, BST
Well we have had a settled day today. After the excitement of having a room crowded with doctors and surgeons with me still in my pyjamas the day has definitely improved! Oliver has been very settled and his heart rate although a little high (120 at rest where it is normally around 80 and 150-160 when awake when it is normally around 90) although still on the high side it is not causing any concerns and should reduce naturally, oxygen wise he is also doing fabulously back down to his usual 0.2 litres although we are trying to keep him on it day and night rather than just whilst he sleeps due to a high carbon dioxide level in his blood. We have however managed to acquire a non blanching rash which hopefully is nothing serious although as soon as they can get him to bleed since he has decided that he does not want a blood test doing and will not relinquish any of it. This is not a problem at the moment as they are trying to get it out of his port a cath every time the line is broken for his medicines or to change bags of fluid. However if he does not give them some soon then they will have to start looking for veins to do a normal blood test. For Oliver this is a very traumatic experience as his veins are severely scarred by the number of blood tests and cannulas he has had to have and so it is extremely painful for his and normally requires double figure attempts before they find a vein in little fingers or toes that is prepared to bleed. When they have got the blood they will be testing for sepsis however although he is warm he does not have a temperature which is a good indication that he does not have this complication. Last time he did have sepsis he developed endocarditis and we almost lost him due to a prolonged cardiac arrest, we were lucky then that he only lost his hearing as a result this time we are taking extra precautions.All of Olivers medicines are either being given IV now or have been stopped so that his gastrostomy and jejunostomy can heal. There are a couple of things that can be causing the gastrostomy to leak;a) the tube is broken - this is our best option and the one we are hoping for, they cannot replace the tube at the moment for fear of tearing his internal stitches but this is the easiest one to sort outb) there is an obstruction - one of the complications of his surgery is that the intestines become damaged and obstructed this is not a good option, this will require more surgery which we have not got an anesthist prepared to undertake due to the risks involved.c) that it is the original leak still leaking - this is also not a good option as it means he will continue to lose weight and need to go onto TPN (total parental nutrition.) If we need to go onto this he will need to stabilise in order to be allowed home and is likely to only be allowed home for a few hours at a time for the first few months (this is what it has been in the past.) Oliver has never stabilised on TPN despite having been on it numerous times. Instead of stabilising every time Oliver has gone into liver failure and the last time had to have emergency surgery as a result. It is the combination of liver failure and TPN which has caused us to lose many of his little friends.On a more positive not Oliver has been a lot happier in himself, although drained, sleepy and irritable to the point whereby he is struggling to lift his head and cannot sit up we have managed to have cuddles and kisses, he has enjoyed having us sing "this little piggy" on his toes and has watched Toy Story (with lots of naps.) Today we have also managed to borrow some sensory equipment including a light tube and tails which he loved and tried to reach out for, he also enjoyed watching Paul and I dancing around like fools to a Disney soundtrack much to the amusement of the rest of the ward. Hopefully this means that his pain medication is working effectively and The girls have also had a great day paddling, going to the park and meeting with friends (Grandma is all bruised an Millie keeps telling me how they splashed her.) I can not wait till tomorrow when I will finally see my girls we have lots of exciting things planned both with and without Oliver as although our family life has to run around his health Amelia and Imogen are also our babies that need time to know that they are loved and belong just as much as Oliver. Hopefully today is just a day of minor setbacks which will turn out to be fine, in the scheme of things by the original plan Oliver should still be in a drug induced coma and in intensive care. If this was the case I would be unable to see my girls until he was back on the ward as it is he is still doing amazingly well and so that is what we will concentrate on.
Sign My Guestbook

Friday, July 2, 2010 9:16 AM, BST
Just a quick update whilst Oliver is asleep he didn't have the best night and has been in quite a bit of pain so this morning they have decided to increase his pain medication to try and keep him asleep. Hopefully this will make him more comfortable. Olivers gastrostomy/jejunostomy has started to leak what is put in it (only his medicines at present as he has not been fed since the operation to let his gut rest) so they are transfering everything possible to IV and run straight through the port a cath into his heart as they are worried about tearing his internal stitches. Hopefully this will only be a minor set back

http://www.caringbridge.org/visit/oliverking