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