Some Good Some Bad

Hi, well it has been eventful since our last post, back and forth to the hospital. Jake was seen again and his blood has dropped by a full 2 points in a week, which is a big drop, but on a plus note he doesnt seem to bad in himself, he is sleeping loads more, and feeling pain in his body now when resting if he over does things, and trying to get him to slow down is impossible, as when he gets a burst of energy he wants to use it all straight away. So as for now jakes predisolone isnt being reduced anymore. We thought we were doing so well too. but we have had a good 6 weeks where he has maintained so that was all good. Jake has had his x-ray on his tummy and there is no blockage there its all nice and soft, but yet he is still only going to the toliet in his sleep in his big boy pants, and yes it is still just runny, It has now been 35 days since Jake has actually been to the toliet properally. So now we are at the stage where we are waiting about to see what happens they have reduced the movicol to 6 a day to try and let it thicken up, but if he stops going completly then we have to up it to 10 a day. Very confusing, I know, but the lady who we have seen over this has been very helpful, and is only at the other end of a phone. She is also going to speak to the original surgeon we saw when jake was first admitted for the prolapse, so hopefully when we go to Jakes next appointment on the 1st nov 2011 we will have a clear idea of how things are going to proceed. We feel like were back in the limbo stage where we dont know whats happening, and its a horrid feeling to have. So for now there isnt really much to report, other than keep fingers crossed his blood goes up, And his ezcema is back alot worse too, I dont think its something we have mentioned before in his posts as we have had it under control and maintained during alot of the time, It always flares up with his transfusions, and it has been easy enough to handle, but its now all the time, he is so itchy and sore, so we are now back on with with the full on treatment, for that creams 8-10 times per day, and wraps during the night, which is difficult with the pooing at the moment. His ezcema was a full time routine day by day, and worked into a daily rountine for him, and he doesnt mind so much having his creams on, luckily for us. Plus we didnt stop his routine at all even when it was looking clear, except for the wraps on a night. So it isnt really an adjustment we need to make. I just wish that I could take it all away for him, I hate having to watch him get so upset. But for now all I can say is thank you all for your support and will update when we have more news.

Bee Happy

Jake and all that goes with it

To start hi to all my followers and friends who keep up to date with this. We thank you for following. Well since our last post we were off to see the surgeons. And I think we had mentioned that Jake had been to the toliet with dihearrea and he has the prolapse again. Well it wasnt dihearrea at all it what they call fecal overflow. And jake has it bad, and the smell is horrid, it smells like sewage back up. So Jake hasnt actually now been to the toliet for 26 days. The surgeon that we saw as an emergency just dismissed us, he had'nt even read Jakes file, he was uncertain why we were there, and dismissed us saying will see him in 8 week see how he goes, and then told us to explain to Jake the it will happen again its just one of them things. Well as you can understand I wasnt impressed not at all, We were treated like rubbish, after all we had been told while is was in hospital about it being rare to happen to children and that it would need correcting if it happened again, then to see this person to be told yeah it will need seeing to but hey leave him 8 week see how he goes, it made my blood boil. So we went to see Jakes doctors who were great and very understanding about it all. They examined Jake and said they could feel the blockage, and they really needed him to go to toliet before anything else could be done. So they increased his laxativs again to help him get the flow going. But Have advised us that if by wednesday he hasnt gone then they will have to do something, but because Jakes not in pain or vomitting from it yet we have time to play with to get him to move his motins himself. So thats that for now, As for his bloood count he is still maintaining so the meds are working well for now so that is good. They have reduced his dose again we are now down to 5mg aday of predisolone, and his weight is coming down quickly. just fingers crossed he keeps maintaining. So this time its good mixed with the bad Im afraid to say. Jake was rushed back in to hospital on saturday evening as he couldnt cope with the pain any longer, they say the blockage is causing the pain, so they told us to keep on top of giving him pain relief, and to double his dose of laxativs everyday. To help him. They said for us to stay in and he can be monitored, but we were also told we could take him home, so home we came, he is more comfty at home and may even go to the toliet. So today Jake is on 9 laxativ's 8 yesturday and 6 the day before and that isnt even including the other laxativs they gave him last week which he takes 10 mls of too. And still no toliet action. Tomorrow we are back at hospital so who knows what will happen. But I hate having to listern to my baby cry from the pain, the terror in his face as he knows what may happen. I wish I could have it all for him., He should be in school making friends and doing the same as everyone else. But he is not and the bestest friend he has his big brother who, throughout all this has been strong and grown up, and a wounderful brother to Jake. Me and his dad are the proudest parents in the world to have such a caring and thoughtful young man as our son. Who maybe sometimes seems overlooked because he has been so grown up about all of this, he is my saviour, And I feel so lucky to have my boys and wouldnt change them for the world. Times like this show you the true colours of people and family that will always be there. Not only for me and my husband but for our eldest son too. Because these people are the ones that laugh at you when you fall over, but are the first to hold their hand out to help you up. And there isnt enough ways to say thank you. You keep us strong and you help make everything bareable. You hold our heads up when we cant. Our whole world had been turned upside down, and yet your still standing there with us. So I thank you again for truely being you. xx

In the words of Jakey Bee Happy

will update when we can. xx Thank you all for support.

Appointment catch up

Hi all, Well wednesday has been and gone so that means Jakey has had his appointment. Jakes blood has dropped to 10.8 in the 5 days since he has been out of hospital. But this is still a good number for Jake as we all know by now that he does'nt usually go higher than 8. He has had a late response to the predisolone which is what is keeping Jake maintained. So on the blood front he seems to be doing well. He is a little more tired than usual and soesnt want to do much but he is holding on. As for the other situation well thats a different matter. On wednesday Jake was on day 6 of no poo action, So between Jakes doctors and the surgeons they increased his laxativs, to help get him to go.But if he had'nt been by Monday to call and see what the next step would be for him, as the surgeons would want to see him. So Jake has been on the twice aday laxativ, and on saturday Jake started with the runs and all was clear, he was so scared to go to the toliet we were letting him go in his big boy nappies which we got for him. And he seemed fine, Then as the runs started to increase more we managed to get him sat on the toliet. We sat with him and read his books and talked loads so he didint feel so scared, And we thought as it was runny it would be so much easier. But we were wrong, it has happened again,  So Jake was admitted back in to hospital on saturday. Jake was terrified he even struggled to have his blood taken, which he does now with ease every week with his fav lady. They said as the bleeding had stopped and if Jakes bloods were okay we could take him home. And luckily his bloods were fine they were 10.7. So we were allowed home, and now were waiting on the surgeons decision on how he wants to proceed. The worst part of all this is Jake was so scared to go to the toliet, And I told him not to worry that everything was going to be fine, and I was wrong but we needed him to empty his bowels and he was holding it in, his brain switched his body off from going but the laxativ's won through and in the end 9 days later they won. So we are back to square 1. So hopefully we will have a decision today on what they want to happen with Jake, and not leave him too long.

So in the words of Jakey
Bee Happy

And will update as I can. xx

Well what a week

Well what a week it has been for us all. Thursay Jakey went to school after having time off with feeling exhausted, so we were so happy that he was able to go back and play with the other children at school especially as they have only really just started full time reception class and he has been off more than he has been there. He had a great day, we even walked home with very few rest spots he talked and talked about school and how much fun he had. And then at home he sat and played with his big brother before he went to get in the bath, and thats when everything went wrong. Jakey started bleeding heavily from his back passage, the blood was so heavy it looked like he had opened a vein, it was everywhere. When I checked his bum there was ahuge sac hanging there, horrible to explain I know but there is no other way, So we phoned the hospital and they told us to take him through. So we rushed into the car and off we went, on arrival the on call doctor had a little look a Jakey but he wouldnt let her no where near him, But the sac had gone back up his bottom. So he was admitted. He was monitered through out the night and his obs were stable, which was great. The following morning the specialists who deal with Jake came to see him, and had a chat and a look at him, and they said it maybe possible it is hemorroids, but as jake isnt suffering pain or any other signs that you would get with hemorriods they also think it could be a rectal prolapse. They specialists who saw Jake decided he needed to see the surgeon. Who came and explained that hemorroids are extremley rare in children, and that rectal prolapse is usually associated with aging. But as Jake suffered a high blood loss, the sureon wanted Jake to be seen by the lead surgeon, Who came and was just lovely, made Jake feel really relaxed, and he explained at the moment, he agreed that in both possible cases it is rare in a child, but as the blood sac as gone back in to the bottom, with surgery he wouldnt be able to get a clear picture. And as the bleeding has stopped, he wanted to wait untill Jake can open his bowels to see if there is any more blood loss. And if there is Then Jake will have to have surgery. They kept Jake in hospital untill saturday night, but he had'nt been to the toliet. We decided maybe he felt to much pressure from everyone to go and was'nt relaxed enough so we said could we take him home, and as we able to get back to the hospital they allowed us to fetch him home. So we were given laxativs for him to take to help soften his stools so he would feel easier going, But we are now 08.36 monday morning and he still hasnt been. He is terrified of going, he keeps crying and everytime he even pass wind he wants me to check for blood. Im hoping that today we have some luck at getting him to go. And that it is all okay when we do, as it will make Jakey feel alot easier. So as for now Jakey is house bound untill futher notice.

Hard to say today but in the words of Jakey Bee Happy

Our Little Super Hero

Hi everyone, well as you know its wednesday and Jakes usual trip to hospital, Well we got some more good news today, Jakes blood was 11.4 which is amazing. His hb has only dropped by 0.2. So we are now on week 3 without a transfusion, which feels amazing and a really nice break for Jake too. Meaning they are holding off on taking his bloods for more tests untill he is ready for his next transfusion, so then he is only needing 1 canular fitted. They have indicated today that Jake maintaing this week could be a late response to the meds, which would be great, but they have lowered his dose of predisolone from 17 and half down to 10mg a day. But they also mentioned that it could be that the transusions are maintaining him longer, which would also be good. This weeks appointment was a nice and short one, it was great to be and out, alot quicker than usual.
Jake is in his second week of school, and seems to loving it, he seems to settling in well, he is exhausted and sleeping loads once home, but for now he is enjoying it. Its nice that he is getting that normality in his life too.
He is still nice and chubby and his appitete does'nt seem to slowing down at all, yet. But they do say once he is weaned off the predisolne his appitete will diplete. And his weight will go back down. But for now he is loving his food.
We have noticed tonight though that he is looking a little yellow, which he didnt this afternoon. So will be keeping an eye on that. As we know how quickly Jakes levels can drop. So for now thank you for following Jakes journey and will update soon.

In the words of Jakey
Bee Happy

Sorry for the late update everyone

Hi well as you all know jake was back in hospital and had another transfusion, And then as always we go for his blood check up, and on wednesday last week it was good news, YES I said good news, His levels were good they were 11.6 the highest they have been in 4 months. I know they are still not within the normal range but we were close. So they have given us 2 week off, Before Jakey has to go back. So then they have started to slowly decrease his meds predisolone he has been drooped by 2.5 so he is now on 17.5 a day instead of the 20mg. And will keep reducing the dosage till Jake is off fully. As this happens his hungar will decrease too and the amount he drinks, so instead of our little chubby boy who looks really healthly at the moment, we will start to see Jakes weight decrease too, and his colour fade. Well we are back on the 14th and he will have another transfusion, if his levels have dropped low again, and he will be having a new lot of bloods taken. They discussed at the last appointment about Jake having his kidneys checked, and booking him for another bone marrow test. They want to keep on top of everything. They are really good and very supportive of us all. And its really nice to know. He is starting to look alittle tired around the eyes but he is holding up really well.

On another good note, YES I said another good note, Jakey got to start school yesturday and he loved it. The school are great too, and Jakeys TA seems really nice. He looks really grown up in his little uniform,  and loved telling me all about his day, he even drew my a picture for the fridge which was lovely.
I must admit it is really hard letting him go, I know it will be good for him as he gets that interacting with other children, and it brings some normalitilty in to his life too. But it wont stop me worrying.
Jake didnt have the best night, after his first day, he was shattered like most children after there first day, he was asleep early and kept waking throughout the night needing cuddles and saying his legs and arms hurt. And was extremly warm and clamy too, It found it very hard to settle fully. But it could have been worse. All in all Jake is amazing, and very strong and I hope he loves school, no matter what weather he can make it 2 days aweek or 4. And no matter what its nice to know that the school are there for us aswell as Jake.
So I will update next week when have had his appointment. unless before he needs to go in. But we have had a good week, fingers crossed for another one. xx

In the words of Jakey Bee Happy

Just a quick update, we did'nt get far into jakes week off, but we made a good start we mananged to go swimming saturday which jake loved. But looked so washed out after. And then sunday he seemed to really be tired and extremley pale, monday came round and he looked like he was auditioning for casper, so took jake for a check up at the hospital. And his blood had dropped again by 1.2 in 5 days of last being there. So my poor little man has had to have another transfusion.
I just hope his blood goes up enough for his appointent next week, so he doesnt have to have another transfusion then too.
His transfusion went went well enough, except he cried alot throughout it, as he does'nt understand why he has to have his orange juice. But he seems alot brighter this morning so fingers crossed. I have 1 brave little man, and he keeps is mummy strong. x
Interesting fact of the week Jake has had  the equilevent in blood transfuions to a large bottle of pop.

Bee Happy