Corey’s CP Blog

3rd Treatment Down 3 To Go

August 17th, 2008

Sorry its taken so long to write again but we have had a interesting few days.  Corey had his second spinal last Wednesday.  The spinal injection was early this time.  He was scheduled for 10.30am.  He was in and done by 11.30am so it was lay still till 5.30pm.  This was difficult as it was daylight and he didn’t want to sleep even with the Valium.  Anyway after 5.30pm we had something to eat.  He ate well and eventually went to sleep.  In the morning he had breakfast in bed so as to keep his activity to a minimum to help with his recovery.  At approx. 10.00 we got up to make some pancakes and Corey became unhappy and unsettled.  I gave him a bit of pancake and he ate it and started gaging so I took him back to the room for a drink.  He had a drink and began crying and gaging again and then vomited.  I cleaned him up and laid him down again.  Laying down he would settle it was only being upright that he was sick.  The doctors came and said that he has a spinal headache caused by possibility low intracranial pressure.  This is why he needs to lay still for at least 6 hrs and drink lots of fluids following treatment.  When they do the treatment, they actually remove 3mils of spinal fluid for testing and replace it with fluid containing the stem cells.  This has to be exact to ensure that no intracranial pressure is experienced.  The way they inject the spine (angel etc) can also affect how the patient feels.

They thought it was best if he go back onto a IV for fluids and keep his activity to a minimum.  So we had to put a IV back into his arm, and considering that he wasn’t feeling well anyway he got quite upset.  They administered some Valium to calm him down.  By this stage I felt like I could do with some myself.  Anyway the Valium worked and he was a lot more relaxed.  We watched a lot of Elmo.  The next day he seemed fine but to be on the safe side they continued the IV fluids.  I was able to get him up and stuff, but their is little you can do with a 3yr old with a tube coming out of his arm and dragging around a IV bag.  Corey was bored.  He felt fine and couldn’t understand why he couldn’t do things and to top it off where they put the IV was very uncomfortable.  Anyway by Saturday morning Corey was fine, he was scheduled for PT but I explained that he couldn’t do it with the IV in his arm in such a uncomfortable spot.  So they removed the IV.  By lunch time Corey began feeling discomfort again giving the same signs as he did when he had the spinal headache.  So it was back to bed and drink lots of water.  You know how hard it is to get a three year old to drink water even though he is not thirsty.  After his midday sleep he woke up feeling fine, so we again kept the activity to a minimum and drank lots of water. Today is Sunday and Corey is back to normal.  No problems all day.  Tomorrow Corey has another spinal.  His fourth treatment overall.  I  am hopefully prepared with my dozen bottles of water.  They say that the stem cells in his system are increasing in concentration which is even more important to make sure he is very well hydrated.

His Progress-  Well its so hard to tell because just when he is feeling better following a treatment he has another one.  This is another reason why they say not to expect anything while your here.  But in saying that, his talking is getting better, his trunk control seems to be a little better also.  The photo below is of him today playing with blocks.  He was actually sitting on his own and playing with one hand and supporting himself with the other.  Something that we have been working on at home for sometime.  I still had to be close so as he felt secure as he will still throw himself back when he thinks he is about to fall.  Also we did some walking today with his walker.  It was a challenge to get him to use it again since he has had a spell from it for a few days.  But he is starting to get the turning.  I have to place my hand in front of his chest as he hasn’t mastered the balancing while turning but he does the lifting and turning of the frame on his own.

Once again thanks for all the comments, they give us a boost of confidence and energy which is great.

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