Friday, 3 September 2010

copied from caring bridge 21/8/2010

Saturday, August 21, 2010 4:25 PM, CDT
Well we have been at home for awhile now and Oliver is back to his happy smiley self, he is still a little weak and is needing more naps than he required pre surgery but he is doing really well.Since coming home he has fought and got rid of all the infections that he caught in the hospital and the site has healed amazingly well much to the surprise of his team we will now be having alot of tests and ultra scans (and if they can get the all clear of another general a coloscopy) to see if we can discover the underlying cause for his not gaining weight.Thanks for everyones supportxxx

Saturday, 10 July 2010

copied from caring bridge 11/07/2010

Sunday, July 11, 2010 12:59 AM, BST
I have good news!!!!We brought Oliver (and the girls) home late last night and as we were leaving the hospital Oliver was waving to the building (I don't think he really believed we were going home till he saw the car) cheering and spent the journey home dancing even though it was past his bed time.There are many reasons why he is back at home the main one being how miserable he was there. Oliver always has a smile for anyone but all he was doing is whimpering if we cannot inspire the will to fight in him then we have already lost. Chicken pox also broke out on our ward which just isnt an option for him to catch.Before leaving we managed to re introduce feeds however even now over 24 hours late he still is only on 3/4 feeds and in this heat we are concerned about him dehydrating but we are monitoring him closely. These feeds are going into his jejunostomy where they were going before this operation and using his gastrostomy is not an option therefore feeding wise we are in the same place before the operation just we now have additional complications. When we introduced these feeds Oliver's stomach became very distended and the milk appeared to be backing up the intestines and into the stomach, it is therefore likely that he has some kind of obstruction but we are hoping that it will clear on his own and are massaging the area a lot to try and encourage milk to pass and so far it seems to be working.When we got home nicely waiting on the mat was a letter for our GP - this letter is telling him to take extra precautions when seeing Oliver because he now has MRSA!!! This letter was dated for 5 days ago and so this small infection that we weren't to worry about in his surgical incision (which is still bleeding and oozing green fluid) is actually highly infectious and potentially fatal in someone with Olivers history especially as it is in his blood stream. The fact they have known about it for 5 days and played it down is disgusting and since going home infection control and the ward have been unable to speak to me on the phone, have not returned my calls and have hung up on me when I have asked to speak to people about this!We spoke to the surgeon re moving forward and he is looking into other facilities for us as he has no other ideas on how to improve Oliver's situation apparently I should have a plan by Tuesday - we will have to wait and see if they answer my calls then.On the plus side since returning home Oliver has been happy and giggling, has started crawling and pulling himself to standing again. Just being home and with his family is having such a positive effect on him that he is a changed child.We have definitely made the right decision.

Thursday, 8 July 2010

copied from caring bridge 8th july 2010

Thursday, July 8, 2010 10:41 PM, BST
I wish I had to some good news to share unfortunately at present everything is quite negative i know how hard it is to write and it must be just as depressing to read.Today Amelia and Imogen came to visit and although neither were happy about being confined to a small room but is was great to be able to see them and hold them and as soon as he saw them Oliver started smiling and waving to them. It made his day.Oliver's HB levels dropped to 7.0 this morning (they are meant to be between 11 and 15) and so today he has had a blood transfusion which means he is looking a lot pinker and is feeling less tired. All the episodes does seem to be dehydrating him a bit and so any extra fluid is gratefully received! When cleaning OLivers surgical sites this morning there it is very swollen, red with a green discharge, we are unsure if acid from the leaking gastrostomy has got into it but it is likely that there is another infection here also. We have started some antibiotics for this as we can not afford for it to become any worse however this is likely to make the c diff worse but without it he will get sepsis.Oliver's gastrostomy has also restarted leaking today- I wish I could say it is a little trickle but that is not the case. When ever Oliver moves everything in his stomach empties itself through the stoma, this means he is unable to have his enteral medicines again and we have had to stop all feeds. We have just started some clear fluids through his port a cath however this is risky as if the staph infection is in his port then it will push it around his bloodstream and make the infection worse however without it he would dehydrate with out.Tomorrow I am meeting with the head surgeon (no more tweedle dee and tweedle dum) to try and come up with a plan but it looks like we will be getting a second opinion the only problem is where from. We cannot go on like this our situation is becoming desperate but at the same time we have already had numerous second opinions and no one else has a plan to improve our situation so if anyone knows of any hospitals with good paediatric gastroenterology and nutrition facilities I would be very grateful as I am currently emailing various units with brief details if any are interested in hearing more / think they may be able to help we will be faxing Oliver's notes across (bearing in mind he has over 20 of the large hospital note folders!)Thanks for bearing with us and all of your messages of support we are truly thankful for them, and I'm sure Oliver will be to when he is old enough to read and appreaciate how many people are care about him. Through out everything he has been so brave and maintained his smile he really wants to be here but if you do know of anywhere we really need to hear from you.

Wednesday, 7 July 2010

caring bridge 8/7/2010

Thursday, July 8, 2010 12:17 AM, BST
Just a quick update tonight as I need my bed and it is already stupid o clock. Oliver had a great morning (I did not due to a c diff episode in MY bed - which he found amusing!) and we thought we would be able to get everything in place to discharge him however he has developed a Staphylococcal Infection hopefully this won't delay our plans by to much however this is the same bug as meningitis and so we are not taking any risks until we know all of the details. At present they do not know where the infection is, hopefully it isn't in the port a cath or his blood stream either way it cannot be treated whilst he has c diff. At the moment it does not seem to be affecting him to much except that his HB levels have dropped to 7 - we are getting closer and closer to transfusion level but that is not a major disaster and we are back on Sytron now which will help maintain his levels in the future. We are also back on full feeds with no maintenance fluids!!! - They are going in very slowly over 24 hours however the main thing is they are going in and the leak appears to be reducing.Oliver has been so good today that I managed to take him out of the hospital briefly to buy some new clothes (essential due to the c diff and being stranded without a washing machine) and some bubbles which were essential. When we got back to the ward we were enjoying a cuddle when all of a sudden he sat up looked confused and asked for his bubbles and so we have had a lot of fun popping them and daddy was able to come and see us this evening - tomorrow we have the girls and are planning to try and escape again as i have heard a rumour about a park and ducks.....

Tuesday, 6 July 2010

copied from caring bridge 6/7/2010

Tuesday, July 6, 2010 10:48 PM, BST
We avoided intensive care!!!!!!!!!We had a wobble over night when one minute he was fine and then all of a sudden his heart rate dropped to low 40s and he woke up just screaming, it kept fluctuating between 40ish and the 190s. it took a couple of hours which were a little rocky however we remained on the ward and it resolved itself with some mild sedation. This morning also saw the return of tweedle dee and tweedle dum from yesterday still arguing and bickering! That combined with a nurse who tried to give some medicine meant to go enterally into his port the day could have turned out very different as this would have been fatal.The rest of the day he has pretty much been alright and everything seems to be stabilising. We also had a visit today from Grandma and my beautiful girls, Oliver seemed to perk up when they were here however after they left he was a crying mess and just kept asking for them. This has lead me to believe that maybe the best place for him is at home. I know that a lot of people will think this is a stupid idea especially when he has been so sick however he is just so miserable here. Oliver has always defied the odds, has come through the impossible and has had a stubbornness about him that comes from wanting to be here and stay with us. At present that stubbornness has gone, he whimpers and is experiencing separation anxiety every time I go anywhere (be it the toilet or the canteen as that's as far as I go) and cries if I am out of sight he is also not communicating at all if there is a nurse in the room and spends as much time as possible hiding from the medical team.Obviously for him to come home I need a lot of things in place which I am still working on but he was so much happier when the girls were here, he was to weak to join in but just watching them seemed to make him happier. So for now I'm trying to persuade everyone in sight that I am capable and that I have enough of a support network around me when we get back home and bullying people into doing the practical things like nurses to take the samples at home, doctors to review us at home and people to run around about for us for prescriptions and dropping of samples etc. Oliver's main surgeon knows us well and is supporting us all the way so as the head of the ward we stand a good chance. We are also trying to get Oliver off anything that he can not have at home so sedation and pain killers that needs to go through his IV (we can have low risk IVs at home through his port a cath). If it does all fail and he doesn't improve or in fact gets worse obviously we are prepared for this also and bring him straight back in but I truly believe that this is the best thing for him and if nothing else I trust myself with his medication more than any nurse and although their will be a lot more work for me at least I can ensure that no errors occur and it will be a nice calm environment free from bickering surgeons!

Monday, 5 July 2010

copied from caring bridge 5/7/2010

Monday, July 5, 2010 10:57 PM, BST
I'm not to sure how I am feeling about today, some parts have be excellent, others terrible and some darn right amusing which makes me feel like the NHS is run by the makers of the Benny Hill sketch showsWe are also now on complete isolation and cannot even use the parents shower or kitchen for fear that we will pass on Olivers c diff so unless they come up with a suggestion by the morning I will be stinky! This also makes things harder around visitors as they can see us so long as they wear gloves and gowns - I was hoping to see the girls tomorrow and I am unsure of how this is going to work with them especially as Millie has taken quite a liking to the playroom but our visitors are not allowed to see anyone else in the hospital let alone be allowed in to the playroom.The Good - Oliver had a miserable couple of hours this morning asking to go home, and to see his sisters I was quite excited that he was finally signing and asking for things which he hasn't done since the surgery yet it is thoroughly heart breaking to to be able to do as he wants. Instead we built a play tent out of sheets and agreed that no one would touch him or do any medical procedures whilst he was in it- this did lead to him abusing the tent and hiding in it when he really should of been having blood tests but I did manage to coax him out in the end and we stuck to the no medical procedures in the tent rule which cheered him up no end. We have also been working on the laptop today, he has been downloading all the latest episodes of Something Special and Third and Bird and we have been doing silly dances but he has also discovered the magic of games on the laptop which I'm sure I will regret when he asks for the latest play station. Oliver isn't to sure of the build in mouse yet he knows that it does something important and decided to fight me for it earlier but he can press the buttons his favourite though are games that you press any key on the key pad and something happens and so we have been learning colours, shapes, alphabet, singing songs with the computer and loads more besides.The bad - Oliver's blood tests from earlier today are worrying. For my medically minded friends his CRP has risen to 129 meaning his infection is getting worse (levels are meant to be under 10,) his HB (hemoglobin is what carries oxygen in the blood around his body) has dropped in the last 24 hours from 10.1 to 8.6, this is concerning as normal for a child is between 11 and 13 and so they are starting to talk about transfusions, his levels will be retested when they break his IV line at 6 am as it is easier to run a transfusion through the day and it would need ordering etc. Olivers Potassium levels are also causing alot of concerns, Potassium levels are meant to run between 3.5 and 5. When we were admitted we had a normal 4.7, by saturday they had fallen to 3.6 and we started adding supplements into his IV bag, this morning they were down to 3.1 and the supplements were increased and tonight it has dropped again to 2.6. If they drop below 2.5 he will be classified as having hypokalemia which causes heart irregularities and is life threatening, they have an intensive care bed on standby and have increased the supplements further. Oliver has managed to start having some enteral feeds today, and since 6pm has had 10 mls per hour (think 2 child size medicine spoons) this may not sound like a lot but he has been completely starved and only allowed water and glucose IV bags since the Wednesday night. Although he does have a small leak it is just small but his stomach appears to have started bleeding which we will need to keep an eye on as last time he had c diff it developed into colitis. The C Diff is also quite apparent now, I won't tell you the details but anyone with any experience with C Diff you know what I mean!The Ugly - (or comical if its not your son stuck in the middle!) Oliver was meant to be having his gastrostomy tube changed today however a surgical registrar came in a told us that this plan had changed and not we were going to recommence feeds at a slow rate and see what happened. Providing it was at a very slow rate this idea wasn't unacceptable to us and if anything made sense to retest it and just see if it had been a post surgery leak. Before we could start the feed another registrar came in saying no we could not restart feeds and that he needed to have a small operation to change the tube however it was to late in the day and so they would do it tomorrow. This was a little unacceptable as he cannot have an anesthetic and so I would be required to pin him down for it but I did ask about the others registrars suggestion and so he decided he would make some phone calls and get back to me. A short while later both registrars came back in together having obviously had a heated conversation this in itself was a little amusing and I couldn't help but smile thinking all would be fine as I would just demand to see our surgeon and there boss before either option was tried. It would appear that smiling to oneself whilst 2 surgeons are angry with each other does not help this delicate situation and they started moaning at each other with raised voices to try and establish who was right. To tell you how loud these raised voices were Oliver could hear them even with his severe hearing loss! In the middle of this I received a phone call which normally I would of just cut off had I not realised that it was our surgeons private mobile. Our surgeon (their boss) was less than complimentary about both of them and basically told me to ignore them both! Between us we decided to start on very small amounts of feed and see how it goes with the option of replacing the tube if necessary part way through this conversation both of the registrars wandered off in a huff maybe because I was being rude and ignoring them or maybe because I answered the phone very efficiently announcing who was calling either way I haven't seen either since! I must say it doesn't inspire confidence in the system.

Sunday, 4 July 2010

Feeling Blue

Sometimes it is hard to admit when things are not so good but today is one of those days. We have only been back in hospital for under a week yet it feels like forever and as if we have never been home. Admittedly having spent around thirteen months out of the last three years in hospital that often feels like the case. I guess there are many things that are harder this time for a variety of reasons

a) Oliver is older and understands and just how much he understands is painfully obvious

b) I'm separated from everyone again meaning my whole support network has collapsed most importantly I am away from my girls and every time I think about them and what they are doing (even though I know they are well looked after and enjoying themselves) I just want to cry.

I guess I am just having a self pitying moment but it is not helped by the fact that we have no idea how long we will be in and last time we came in under very similar circumstance we were in for four and a half months.

A big hug from my babies will make me feel better!