Day +293 We made it home!

We came home on Sunday, it was wonderful if hectic! I have so much to catch up on that I won't write unless anything happens, so please assume all is well unless you hear otherwise...thank you all so much,
love
c
x

Day +289

Yes, we're coming home on Sunday if all goes well. Jesse managed to top the scales at 18kg precisely this morning, this afternoon he had 15 dough balls! So the doctors had to let us go. Meds are all oral and TPN is off so they can check he can maintain his blood sugars and electrolytes. Both he and I have been quite grumpy today, I think that's just because we need to go home. It feels a bit daft staying here, but never mind. I don't feel we can complain, the children on this ward are so ill and at least we are getting out of here. I have been so touched by the beautiful children who have so much to put with, little Ella only 4 months old diagnosed with leukaemia last week, Gus, 4, Bethany, 3, and Kenzie only 4 weeks old, all very ill. The nurses are so lovely here, it has been inspirational to watch their dedication, care and love in action. It must be a tough job but they all say they wouldn't do anything else, although they also admit that it can be very tough and that recently they have had a lot of bad news about the kids they work with. You wouldn't know it though, there is so much laughter and joy all day and night long. I am so glad we ended up here! We can't thank them enough.

I may not write again for a bit, especially as all is well, because I have loads to catch up on at the shop and home. The shop has been very busy over the past couple of weeks; luckily Sara, Joanne, Susannah and Emily are built of tough stuff. They have been brilliant; covering for me as necessary and dealing with loads of stuff every day. I can't thank them enough. I think they are brilliant! And Lily has been in most days this week and has been a great help! Thank you so much to all of them!
Must go now as its late,
love
c
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Day +287

Sorry not to have updated yesterday...it all got too hectic. Jesse is fine now but had a difficult time. The echo cardiogram showed that the fluid around his heart had almost completely gone and the left ventricle and valve were almost back to normal. So they went ahead with the general anaesthetic and put his new line in. As usual Jesse was a star, he was very relaxed in theatre. He said he didn't mind whether they used his line or a mask to put him to sleep, "you choose!" he said. They said he was the best behaved patient they'd had all week. He happily held the mask and gently went to sleep. I was told it would take 45mins to an hour and a half, but in the end he was gone for two and a half hours. I don't know why it took so long, but I do know that last hour seemed to last ages! We brought him back to the ward asleep, but when he woke soon after he was in terrible pain. Poor little thing cried loudly and solidly for one hour, after 20mins I asked for codeine but it took 40 mins to kick in. He slept for an hour and woke up much better. He didn't talk for a few hours but perked up little by little through the evening. He is ok now, if a bit sore and tender, but it is a relief to have the line in his groin out and the Port-a-cath in.

Today they have moved all Jesse's meds to oral so he has been iv free all day, quite a treat! He'll have TPN each night for the next few days and then I hope we can come home. I am having a bit if a battle at the moment. The dietitian came last night, suggesting that she wanted Jesse to be 18kg before allowing him to be off TPN or his overnight milk feed (which we stopped 7 weeks ago). I argued that I knew he would be fine without the milk feed and that he would be able to gain weight rapidly at home and without TPN. Of course the doctor came this morning with exactly the same story...Jesse last weighed in on Monday at 16.9kg, and I knew he had put on weight because I know him well and could see it, so rather than argue too much I asked the nurse to put Jesse on the scales. When the nurse announced "17.8kg", the doctor stood up to check in disbelief! The nurse gently told him that she could read! So now they haven't got a leg to stand on. After the 13 dough balls Jesse had this afternoon, the two bowls of shreddies, one of rice krispies and the two giant potions of couscous and the two pears he wolfed down today I am pretty certain he will have put on the required 200g to be allowed home... and he still hasn't had supper yet. His poo levels are low and today he had a perfectly formed motion and no blood. We were delighted! Jesse had another abdominal x-ray today to check there is no sign of pneumatosis, frustratingly we have to wait till tomorrow for the results to be checked by a radiographer but I think it will be clear. If its not I'll think again, reduce Jesse's food intake/stop it altogether and go back the Brighton Hospital for TPN. Fingers crossed that doesn't have to happen. I have lots of funny stories to tell you of Jesse and shirts, medals and ties but I'll save that for another day. The wonderful Tim is visiting again, and he'll be here any minute so I'll sign off now. As I write Jesse is preparing his business plan for his mineral and gemstone business. More details later. As ever thank you so much for your support and love and positive thoughts,
lots of love
Claudia and Jesse
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PS we can't wait to get home, I've only seen Bernie once in over two weeks. Derek has been doing a wonderful job at home with the help of Lily, Albie and Stan, so I know he is happy, but I miss him and everyone else all so much...

Day +285

Hello everyone,
As you have gathered things are improving rapidly, which always makes everything more hectic. I am going to do a brief medical round up as it is late and we have to be up early tomorrow. Yesterday a chest x-ray showed that Jesse's lungs were virtually normal. The fluid had gone and the right lung was much clearer. By listening the doctors can hear that it is now inflating. Jesse is eating loads, his poo levels are fine, there is no blood and now the antibiotics are being stopped the poo is firming!

Tomorrow morning Jesse is on the list for a Port-a-cath, this is another kind of central line to replace the Hickman line that became infected. The advantage of this line is that it doesn't need dressing, can be accessed easily and has less risk of infection. The disadvantage is that there is only single access (ie if he needs more than one iv treatment at a time he'll need a cannula too) as opposed to the double Hickman line. Before he goes to theatre, in order to check he's up to a general anaesthetic, he's having another echo done to check that his heart has recovered as well as his lungs. So we have a busy morning...

If all goes well we may be home on Friday or the latest Monday. The next hurdles are getting him off TPN, getting him eating enough and switching over all his meds to oral rather than IV.

I'll try to write tomorrow, keep all crossed for us,
love
c
x

Day +283

Hello all,

Well I now have Internet access (thank you Derek and thank you Carl Taylor so much), at the same time I have a rather well boy who needs to be kept busy all the time. I'm not complaining...it is wonderful that Jesse is so well so quickly but it does explain why I have been slow in keeping the blog up to date...I wouldn't want it any other way! Red Ruth visited on Saturday and again this morning; it was lovely to see her. She said she was so happy to be visiting again and that it was wonderful to see Jesse so well, so himself and so happy. And I agree...it is wonderful. To think how ill he was a week ago the recovery he has made is virtually miraculous! I used to think Jesse was very fragile but now I'm pretty certain he is tough as old boots!

As of Friday he had fluid round his lungs, a compressed lower right lung, fluid around his stomach, fluid around his heart, an enlarged ventricle in his heart and a leaky heart valve. All this is very alarming until you understand his circulatory system was pumped with over 2.7 litres of water in one evening 10 days ago in order to save his life and stabilise his blood pressure. The good news is that he is breathing fine on his own and the cardiologists did loads of tests on Friday that suggest this is a temporary state. Jesse will have another chest x-ray on Monday and a heart echo when we leave. I am not too worried about any of this...

We are in limbo at the moment, Jesse desperately needs a new central line. We have opted for a portacath rather than a Hickman line as if it isn't used too much there is no dressing. It is the dressing change that Jesse finds the hardest. The downside is that it only gives single access so if he needs lots of IV treatment he will have to have a cannula. I found out on Friday that the waiting list for this is two weeks; he's been put down as an urgent case but we have no date as yet. I will do all I can tomorrow to push it forward asap. He has to be infection free for two days past finishing antibiotics (on Monday) so Wednesday is the earliest...but they may want 48 hours to do cultures. As we are talking into next week I'll push to go back to the Brighton Hospital until they are ready for us here. I'll keep you posted on our progress.

Jesse is now eating, he still has diarrhoea but only small amounts and no blood. We do have a big problem though, I have been trying to keep him wheat free but all the w/f pasta and rice I have given to the kitchen here comes up massacred so Jesse turns his nose up at it. He has eaten a lot of Rice Krispies and recently I have been rather inventive (albeit at the price of the wheat free option) so I have perfected couscous made with a kettle, cooked gnocchi in the microwave, pitta in the toaster and noodles in a cup...all of which have been well received.

Must go as I'm v tired and am falling asleep...love you all loads xxxxxxxxxxxxxxx

Day +282

Just to let everyone know that Jesse is doing really well. Lily is back in Brighton so Claudia can't really leave the hospital to update the blog. Jesse has started to eat small amounts of food now. I am going up to visit with Bernie today and should be able to sort Claudia out with internet access so look out for more updates soon.

Bye for now.

Derek

Day +280

Here is our brave soldier wearing his purple heart medal, which Tim awarded to him for valour. More tomorrow,

love C x

Day +279

I will have to be very quick (I know I always say it but this time I mean it) because I have escaped to Tutti's for a decaf cappuccino and a blog update. Lily is holding the fort and told me not to do the blog as I'll be gone for ages...Thank you thank you thank you for all the wood touching. I think it may have worked but please keep doing it, we're not out of the woods yet (pun intended). But Jesse is great today, he slept all night again and this morning has been off oxygen for well over two hours. He is chatty, funny and full of beans, in fact our lovely Jesse is back with us. He's been out in the wheelchair and even done some walking. He is asleep now as he's worn himself out.

Yesterday we did some card making in the evening. Lily was puzzling out how to use the sticker maker Ruth had given us, Jesse piped up load and clear "Hand it over here Lily, you know I'm very clever so I can work it out!" From that moment we haven't looked back. He made loads of cards, one of them he made with dogs in the shape of a cross and said it was a dogligious card (instead of religious). He then told us all about how the Egyptians used to mummify everyone including the slaves.

Thank you for your posts, I've downloaded them and will take them back to him. He loves hearing from you all as do I.
love
c
x
PS The dogs are behaving themselves, they haven't left his side through all this and have been brilliant and supporting arms, necks, ventilators etc. Jesse has three new dogs who have settled in well; Spot the Dalmatian (he's rather large), Lucky the puppy and of course Baggins the Basset Hound (who unfortunately has spent a lot of time sniffing Jesse's feet)

Day +278

Just a quickie. Things are looking a lot brighter, but before I say anything else, I'm going to touch wood, and maybe you should too! Last time I said you could breathe a sigh of relief I was very wrong, so I am very wary of speaking too soon...

Jesse slept well last night, so I did too. He woke at 8am and surprised the nurse telling her that she couldn’t take him to the loo. She hadn’t heard his voice up till then so was very pleased. This morning he sat up and played Battlefield 1942 for half an hour. Then he slept for ages but woke up feeling better, when I asked what he wanted to go he said he wanted to go to the park! We managed to persuade him that he may have to work up to that! So the physios came and we took him for a wheel around the ward in the wheelchair, which he loved. He was able to manage 5 minutes without oxygen if he concentrated on breathing.

While we were doing this we bumped into Lynne, Dave and Rhianna who were at clinic on Elephant day care (our friends from Brighton)! They didn’t know what had happened, so were surprised to see us. So they came and visited us in our room, it was lovely to see them! When they left Jesse fell into a deep sleep from which he woke about half an hour ago. He was so gone he had a chest X-ray and didn’t wake! As I write he is chatting away with Lily, reading magazines and making cards. He is laughing and making jokes. It is wonderful to have him back, I am delighted! Must go as the cafe with wifi will close soon,
Love
C
X
PS The ultrasound this afternoon showed that the fluid around the right lung is marginally increased, so the plan is that they will repeat the scan in 48hrs if he continues to improve clinically. If he deteriorates then they will but a tap into his chest to drain the fluid. So please keep fingers, toes, arms, legs and even hair crossed!

Day +277

Sorry not have updated earlier, I haven’t been able to leave the room. We are now on Lion Ward. Jesse was a lot better on Saturday, still very sleepy, puffy and weak though. Derek and Bernie (the lift loonie) were around for most of the afternoon and Tim visited. Lily has stayed and has been a wonderful support. We decided it was best that Derek went home to Brighton as Bernie has been such a handful. As ever the Gibbs have been brilliant, putting them up at a moments notice and making them feel welcome but Bernie has been disturbed by all the upheaval and was persona non grata when he decided to go walk about at 3am. He woke up the whole house! Derek found it really hard to leave but he knew it was the only option...

The nurses on this ward are really lovely but I began to get very fed up that Jesse’s notes are clearly wrong. The general impression they give is that he has just had a bone marrow transplant and that he has GVHD, whereas we have been home for five months and he has pneumatosis caused by the steroids that have settled the GVHD!

Jesse’s heart rate was really low and everyone seemed very worried, at first it was in the 40s and then it dropped to the 30s and then started hitting 29. The doctors suggested that it may be caused by the steroids, but they weren’t going to reduce them. There are many reasons I am concerned about steroids; most importantly they reduce immunity to infection and thin the skin (which has caused the pnuematosis). I had been told he was on 34mg of hydrocortisone (steroid) and was concerned this was too high...but distraught when I found that this was being given to him four times a day. I had thought this was his daily dose! I only realised late on Saturday night but I kicked up a stink and they agreed to halve the dose and revert to his original dose by Monday. A few hours later his heart rate started to climb and now it is very healthy at around 100bpm!

I had an exhausting night, Jesse was awake lots. He was carrying too much fluid so they gave him an emetic at 2.30am and he peed all night long. He is so weak and has so many IVs going it takes two to take him to the commode, so I got very little sleep. He had loads of tummy cramps (perhaps caused by all the antibiotics). He started to need oxygen through the night as his oxygen saturation levels (sats) were low. To add insult to injury he then had an allergic reaction to Buscopan, a drug the lovely nurse had suggested may help with the tummy pains, so it was more Piriton and then codeine...By the morning he was on oxygen all the time as he is now. The doctor checked his lungs and could hear the right one wasn’t inflating properly. So we were sent down to X-ray (the poor little boy was so ill he was gagging in the lift). It showed fluid on his right lung, which is due to an infection. They aren’t sure if it is in the lung or around the lung so he’ll have an ultrasound later and maybe they’ll have to draw some fluid off so they can culture it. I don’t know exactly what is involved. They have added another antibiotic to the other three and may have to add an antifungal drug too just in case. Also Jesse’s potassium levels are low so he is on his fourth infusion. He is weeing loads (18 times in 12 hours). They think the kidneys aren’t working too well and so are leaking electrolytes. The trouble is that he has lost his Hickman line and the other lines keep failing, so his TPN has to come off when there is something more important.

I’m waiting to see the BMT consultants for more plans. I’ll try and keep updated more regularly but it is hard as I don’t want to leave the room and there is no internet access. Lily has to go round the corner to post this...thanks again for all the messages and positive thoughts,
Love
C
x

Day +275

Things are much more stable than yesterday, so everyone...you can breathe a sigh of relief! They took the ventilator out yesterday afternoon, it was pretty horrible so he woke up and whispered a few words. So Jesse is breathing well on his own and has been sleeping most of the night. He is quite puffy, but much less than yesterday. This is because they had to give him so much fluid to bring his blood pressure up while he was critical. The only issue we have now is that his heart is beating very slowly (in the mid 40s per minute). They don’t know why this is but have done an ECG and say it’s fine, also his blood pressure in a bit high 120/90. Two days ago his heart rate was 140bpm and bp was 46/23, quite a difference! Last night they started him back on TPN, which should make him feel stronger, he has had no nutrition for 2 days...

Lily arrived yesterday; it is so good to see her. We went out last night to a local Indian restaurant (Jesse was sleeping and the nurse promised she’d ring the moment he woke). Just as we were finishing she did ring, so went to see him for a bit until he slept again. We both had a good nights sleep. We woke at 6.30 and are in to see Jesse who has been very weepy this morning. His line in his groin is bothering him and his eyes are so swollen he can hardly open them. I imagine he feels like he’s been kicked by a donkey! We were going to be sent back to Fox ward for the weekend but it is closed as there is a virus on the ward so he spent another night in PICU (Peadiatric Intensive Care Unit) and have been told that we will be sent to Lion ward by 10am. This is a small oncology ward upstairs, at least I’ll be able to sleep with him which will make life a bit easier and there is a parent’s kitchen etc.

So all is pretty good. The next issues will be getting him infection free and sorting out another line. I don’t know how they’ll manage this, we’ll have to wait and see. They may want to send us back to The Alex in the meantime. I don’t think we’ll know till Monday.

As ever Red Ruth has been a star or should I say a fantastic social secretary and wonderful friend and support. And thank you again to all of you...
I have written this on Lily’s computer and she’s taking it to the cafe that has a wireless network to post the blog. Keep in touch,
Love
C
x

Day +274

Must be quick as I have to get back for the end of ward round at 9.30am (parents are not allowed while it is going on). As Darius said they cultured gram positive coccae off one of the lumen and something not specified as yet off the other lumen so it is likely to be a line infection...probably caused by all the usage due to the TPN last week. So they took the line out last night, they had to paralyse him again but he is back breathing mainly by himself now with a bit of help from the ventilator. They are going down on the morphine so Jesse may start to come round today but his kidneys arent functioning properly so it may take more time for them to break down the drugs in his system. As ever it is a waiting game. He looks ok but is pretty puffy today. They had to give him more fluids last night as his blood pressure dropped again...
They keep talking about septic shock, so guess that's what happened to him. There are many knock ons to this, leaky blood vessels, falling counts etc so he isn't out of the woods yet. I'll keep you posted as I can. Thank you so much for all your posts, texts, calls and offers of help (Jane and Miles, I can't believe you still check the blog! By the way, if anyone needs a fantastic solicitor please let me know and I'll pass on Jane's details!)
Must go now, but quickly other news. Lily arrives from New Zealand this morning, John is very kindly picking her up from Heathrow, I cant wait to see her. Albie is being a fantastic support keeping everything going in Brighton, keeping the house ship shape, making sure Stan is ok and supervising the intallation of our new boiler which is being fitted as I write (I hope). Stan is being great too. Finally an enormous thank you to the lovely Hughes sisters, Sara and Joanne who have kept the shop going seamlessly and been so supportive and flexible. I can't thank them enough, they have taken a big load off my mind.
Must go now, keep thinking positive thoughts,
love
cx

Day +273

Jesse's condition worsened at about 5.00pm last night. His blood pressure dropped dramatically and he was taken to intensive care. They managed to stabilise him and he was taken to Great Ormond Street intensive care unit late last night. He is sedated at the moment and being ventilated. They suspect he has Sepsis possibly caused by a line infection (Hickman line). Claudia travelled with him last night in a special intensive care ambulance (the ambulance team were amazing). I drove down with Bernie, settled him at Rick & Maggie's and got to see Jesse for a little while. Claudia has just let me know that they have been able to reduce the drugs that they were giving him last night and he may be off the ventilator this afternoon. I will update whenever I can.

Derek

UPDATE 1.40PM...
The doctors are much happier with Jesse this morning. He has responded well to treatment and they are thinking of waking him up this afternoon and taking him off the ventilator. Lily is coming home, she'll be back tomorrow morning. Everyone is being wonderful, especially Maggie et al and Red Ruth. The plan is to wait for the cultures to see what the infection is and make sure they are covering it with the right antibiotics. They suspect a gram negative sepsis but now think it more likely to be from his gut than the line as he has improved so quickly. We'll go back now and see how he's doing. I'll try to keep the blog updated as much as poss.
love
c
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Day +272

At first they thought it was an ear infection so they put Jessse on Augmentin (iv antibiotic) but at 5am Jesse was sick and his temperature soared to 40.7. They can't get his temp down and so are treating him as if it is a line infection, he is now on Gentamicin and Tazacin too. I have just got Bernie to the childminders so am going into hospital now...please keep your fingers crossed,
love
x
c

Day +271

All was going swimmingly till this evening at around 8pm...We were let out at 4.30 and headed home for four hours. Jesse was having fun, playing on the computer, shouting with B and then watching TV. All of a sudden he complained of being cold, I took his temp, it was 37.9 so we took him back to hospital early. Derek had to be carry him in and he was asleep by the time he was in his his room. I am at home with Bernie (fully recovered) and worried sick. We are waiting for news...
c
x

Day +271

Just a quickie update...
All is ok but we had diificult night tonight because we had a couple of hours off and were invited to Katie Taylor's fireworks do..J was off between 6 and 8pm...just perfect we thought. He had a great time during the fireworks and Bernie did amazingly, he stayed outside through all the bangs (which none of my other four managed at his age). He clutched me tight but enjoyed it too. When all was finished we retired to the conservatory where all the food was but Jesse had a terrible time...there were 10 french sticks, loads of chocolate and crisps lying all around; the torture was palpable. I don't know how we will manage the next week as he is allowed to be at home but it may be very difficult when he is around food...good news is that Bernie is much better.
keep in touch
love
c
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Day +272

Hi to all the faithful...
Well things got worse but are better now. Thank you for all your calls, emails and posts. Jesse is in the Alex (Brighton), the swanky new childrens' hospital. It is Very Swanky but you still cant get anything to eat after 7pm except crisps, chocolate and cuppa soup. Of course that's the least of Jess's worries as he isn't eating anything or having a milk feed or even drinking, BUT he is much happier as the TPN and drip means he doesn't feel too hungry at all. He gets bored but we have computer, books, DVDs, games and of course jigsaws (he's almost finished a 1000 piece one already)!

It got worse because the night I wrote the last blog Bernie decided it would be a good time to get really bad croup! So Derek and I were up all night and poor Bernie had a horrible time barking like a dog and gasping for air. We were wrecked in the morning and then terrified because I read on NHS direct about how croup is a virus sometimes caused by para influenza (which could be deadly for Jesse) and that the second night is worse than the first. So I rushed him in to see the GP, who advised us to give him a large dose of steroids to reduce the inflammation in the airways and keep going with the inhaler (Bernie has asthmatic tendencies so it makes it worse for him) and then rushed back to get Jesse into hospital. We hung around all day and in the end came home for a couple of hours as they couldn't organize the TPN until after 6pm. So poor Jesse had to another day of not eating, he really was struggling, especially when they told they didn't want him to drink either! Anyway, he made it and when the TPN went up the difference was noticeable. Since then he has been fine.

Bernie was better the next night too and seemed much improved in the morning so I sent him to nursery. But I felt terrible when I picked him up, he looked really pale and couldn't stop coughing. He cried for over 2 hours last night and finally went to sleep when I took him on a sleep drive. We have kept him off school today. Derek isn't taking on any jobs at the moment and luckily we have Hayley who can stay with Jesse in the day. I managed to work all day yesterday and am at home now sorting out papers to send to my book keeper (I hate VAT). Bernie is still coughing constantly, so we are taking him to the GP again this afternoon in case he needs nebulizing, at least he is happier than yesterday.

We still don't know how long they want Jesse in for, it may be 3-4 weeks. We are planning to concentrate the TPN so that he can be hooked up for less hours (at the moment it is 24 hours, in a couple of days he goes down to 22, then 19, then 14 and we hope soon it will only be 12 hours a day. It is possible we can do the TPN at home but I think it will need funding sorting out and we'll need intensive training so we have to weigh up whether it is worth doing or whether we should just be happy to have him in hospital overnight every day. We are doing alternate nights now, and it's working quite well but it will get exhausting...I'm not sure yet what to do, but I'll keep you posted...anyway must go as I've masses to do. Keep in touch,
loads of love
c
x
love to you all