Ben Kennedy

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=200 BGCOLOR="#FFCC80" TEXT="#080000" bgproperties="fixed" background="1088e8e3.jpg"> <div> <IMG SRC="10995810.png" border=0 width="149" height="129" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> <A HREF="id32.htm" TARGET="_top" TITLE="My Initial Thoughts"><U><B>My Initial Thoughts</B></U></A></div> <div> <A HREF="id34.htm" TARGET="_top" TITLE="Our Worries"><U><B>Our Worries</B></U></A></div> <div> <A HREF="id35.htm" TARGET="_top" TITLE="The Scares"><U><B>The Scares</B></U></A></div> <div> <A HREF="id36.htm" TARGET="_top" TITLE="The Joys"><U><B>The Joys</B></U></A></div> <bR> <bR> <bR> <bR> </td> <td valign="top" BGCOLOR="#FF9900" TEXT="#080000" bgproperties="fixed" background="10e00c82dwnjbj.jpg"> <div> <FONT SIZE="5" COLOR="#000000" FACE="Arial" ><B>TSNI</B></FONT> <FONT SIZE="1" COLOR="#3366FF" FACE="Arial" > </FONT>   |     <FONT SIZE="1" COLOR="#CC0000" FACE="Arial" ><A HREF="index.htm" TARGET="_top" TITLE="TSNI"><U>home</U></A></FONT></div> <div> Ben Kennedy   |   <A HREF="id62.htm" TARGET="_top" TITLE="Update"><U>Update</U></A></div> <div> Ben Kennedy</div> <div> <B> </B></div> <div> <I><B>Overview</B></I></div> <bR> <div> Ben was born on the 16th December 2003 at only 25 weeks gestation (15 weeks premature). Ben was born with many complications such as: Heart Murmor (PDA), Chronic Lungs Disease, Bilateral Hernia, Subglottic Stenosis (severe narrowing of the airway).  When Ben was 7weeks old he also contracted MSRA during his time in hospital. In February 2004 Ben was given a Tracheostomy due to the Subglottic Stenosis.  Since this Ben has been improving greatly.</div> <DIV ALIGN="LEFT"></DIV> <div> **********************************************</div> <div> Ben was born at 24 weeks and 5 days gestation. At 7 weeks old, (32 weeks gestation) Ben contracted the MRSA superbug. After several attempts to take Ben off ventalation, CPAP and Low flow Ben deterioated as a result of the MRSA. This then had its toll with Ben as it caused a severe narrowing of his airway, 'Subglottic Steniois'. Ben was then transfered to another hospital at just 9 weeks old, 34 weeks gestation, to undergo surgery to insert a tracheostomy.<IMG SRC="05b12ce0.jpg" border=0 width="274" height="206" ALIGN="RIGHT" HSPACE="0" VSPACE="0"></div> <bR> <bR> <div>  After 2 weeks Ben was then transferred back to his home town hospital in which he was born. At this stage we were given training in looking after the tracheostomy. We thought 'we are never going to be able to cope with this'! But such as life, you just have to. After we were confident enough in caring for Ben and knew all the procedures we were finally allowed home in May 2004, which was a great joy for us. In June 2004 Ben was taken back into hospital to have a Bilateral Hernia repaired, but allowed home soon after. We were worried at this time about the MRSA and the effects it would have on the wound healing. But after a few weeks things were fine and Bens wound healed perfectaly.                                                                   (<FONT SIZE="1" COLOR="#000000" FACE="Arial" ><I><B>Ben Febuary 2004 weighing 2lb)</B></I></FONT></div> <bR> <div> <I><B>Well we are finally home.</B></I></div> <bR> <div> <I><B>1st month home ( May 2004)</B></I></div> <bR> <div> It has taken a long time to get here but here we are... Its fantastic!!</div> <bR> <div> Ben has come home on oxegen (only given when required with the tracheostomy)</div> <div> Hard to go to the shops with monitor, oxygen & bagging set, suction unit, catheters, spare tracheostomy, saline, Ben and the normal baby stuff like - nappies, wipes, bottles etc...</div> <div> Ben is still on a monitor day and night at this stage. He weighs just 5lb 5onz. Alot of sleepless nights to look forward too</div> <DIV ALIGN="LEFT"></DIV> <div> .<IMG SRC="063f4b70.jpg" border=0 width="244" height="183" ALIGN="LEFT" HSPACE="0" VSPACE="0"></div> <div> Ben needs 24 hour care, which means Bens father and me are taking nights in turn to sit up with Ben as he still requires frequent suctoning during the night.</div> <bR> <div> Counted the catheters the morning after the night before.............. 19 catherters... God I am tired today. Cant really go back to bed as daddy has to go to work, and we are waiting for the community nurse to arrive with supplies and for a check up.</div> <bR> <bR> <bR> <div> <I><B>2nd month home (June 2004)</B></I></div> <bR> <div> Ben is off to Royal Hospital for Sick Children to have a Bilateral Hernia reapired.  Also when in theatre, Proff Cinamond will do a broncoscopy to see if there is any change in Bens condition.</div> <bR> <div> There has been no change in the Subglottic Stenosis, we dont feel too down about it as this is still early days yet.</div> <bR> <div> Community and Social Services cannot identify a carer to give us respite, as they state this is not a service they provide. They have offered us a home help to free us up with the house work to spend our time with Ben. Lee works 9am - 5pm which is hard as he is up all night with Ben every other night then comes home about 5.30pm and tries to give me time to myself to get a bath or shower.</div> <bR> <div> Bens suctioning has still not decreased, we are still up during the night several times.</div> <bR> <div> However Ben is doing really great and came around from his Hernia operation quite quickly despite having the MRSA.  </div> <bR> <div> <I><B>3rd month home ( July 2004)</B></I></div> <bR> <div> Still no carer!! We are really tired at this stage. We have had no choice but to go to our DUP councilors to give the Social Services a little push. </div> <bR> <div> We have been referrered to the Northern Irelands Childrens Hospice.  We will wait to see if Ben gets accepted.</div> <bR> <div> <I><B>Middle of July 2004</B></I></div> <bR> <div> Still no success. But they have got us respite at Altnagelvin Area Hospital at ward 6 for the weekend - Sat & Sun. Feel a bit uneasy at leaving Ben back to hospital for whole weekend so we decide we will leave him only for Saturday night and maybe go out for a meal. Cant bring myself to take him up so Lee has taken him at 7pm.</div> <bR> <div> We have been out for a nice meal and a few drinks.</div> <bR> <div> Cant sleep - Have to get Lee up to go with me to collect him - really miss him.</div> <div> As we walk in to the ward Ben has a really big smile for us! When children give you a smile like that it feels really rewarding. Ben had a good night, required frequent suctioning, but otherwise normal.</div> <bR> <div> We have also been accepted for 1 year at the Northern Ireland Childrens Hospice.  This is were Ben will go every few months or so to give us a break for a few days.</div> <bR> <div> <I><B>4th month home (August 2004)</B></I></div> <bR> <div> Finallly the Social Services have identified the carer. Her name is Linda she has come from an agency called 'Angels' and she has been with previous child with a tracheostomy for 9 months so Linda has all the training but may need a refresher.</div> <bR> <div> Linda is great with Ben. She has taken to him and he has taken to her really well and really knows her job.</div> <bR> <div> <B>October 2004</B></div> <bR> <div> We have had another visit from our social worker.  The trust has experienced a few problems with contracts and Angels Nursing agency, they are going to have to withdraw Lindas services from us.  For replacement we have been offered 2 inexperienced carers from another agency.I said I would give it a go.</div> <bR> <div> The girls will have to be trained in our home with Ben.  This may take a while.  </div> <bR> <div> This is putting even more stress on us, having people about your home who dont realy know what they are doing, you are trying to supervise them and what they are doing and caring for my son.  I dont think this is going to work out.</div> <bR> <div> <B>7th November 2004</B></div> <bR> <div> We have made Social Services ( Foyle Trust) Aware that we are most definately not happy with the service we are being given.  It is giving us undue stress, having to supervise an adult in our own home to ensure she is giving adequate care to our son. </div> <bR> <div> Ben dislodged his tube, fist scare at home!!  Ben turned blue finding it very difficult to breath.  Due to the Subglottic Stenosis, Ben needs the trachy in place to breath.  Bens trachy was out for a while and we found proving very difficult to get in a new one in.  We called for an ambulance but in a blind panic jumped in the car and spead off to the hospital.  Lee was driving, <I>ie speeding,</I>  whilst i was giving Ben BLS (Basic Life Support) in the back seat.  Ben still had no Tube in at this stage.  The hospital was 5 miles away.</div> <bR> <div>  We got him in to A&E, doctors rushed him to resusatation, were they revived him and put an ENT tube in as Ben still had the 3.0 NEO tracheostomy, before taken him to theatre to replace the normal sized tracheostomy.</div> <bR> <div> Definately, i was not having inexperienced carers in my home having to deal with this.  I, Bens mother,  found it very scary and would not want to put anyone in that position.</div> <bR> <div> We have called together Bens consultant, the Social Worker and Community Nurse.  We once again express our concerns about having inexperienced careres in our home looking after our son.  It was really not benificial anyway as i was not allowed to leave the carer alone in the room!!!!!! now were the respite there??</div> <bR> <div> I express that after this incident I cannot have them in my home and that i wish them to withdrawn there services. This was arranged and we decided that I could get a home help to take some of the housework pressure off me.</div> <bR> <bR> </td> </tr></table></body>