The birth of my lovely son Jenson could not of gone any better, born on the due date 08/07/2013 weighing 9lb! His health check was great although he was born with very low sugar levels, it soon sorted its self out within a couple of days.
Jenson was doing really well with his development till the age of 4 months old, I then notice something was not right, jenson was stiff in my arms I was unsure what to do As he came round after a few seconds. I then rang my mum and she advised to ring ambulance if this happened again , few minutes later it happened again, I called an ambulance they was there within minutes but jenson was showing as a healthy baby and they was not concerned.
I wasn't convinced so they agreed to take us in. When we got there A&E they was still seeing nothing wrong but kept us in for obs for 4 hours. Half hour before discharge jenson done this stiffness thing again. They then took me seriously, and admitted him on the ward and started tests.
The test showed that he had Hyparrhythima (Infantile spasms) he then started a corse of steroids and many other meds. For about a month he stop having spasm , all was going we"ll, then we started weaning him of his steroids and his spasm came back. He was having double the amount of spasm a day (100) .
He then started to show his developmental delay he lost his grip and smile and other things he did before. Was very upsetting time for the family, as we did not no what was going on.
He spent his 1st Xmas in hospital due to bronchiolitis where he was in for 2weeks needed oxygen. On his 1st birthday he had cake, we tried him with some and he came out with a reaction to the cake which was egg and colouring.
He then stated to get many chest infection and we didn"t no why. We found out with test that he was aspirating into his lungs. It"s unsafe for him to have anything in his mouth so he is now ng tube fed. But he still has moments where he chocks on his saliva sometimes vomit causing him to have chest infections.
He has had over 45 admissions. Due to the chests infections and also his epilepsy.
He has been NG tube fed for 2months now and he is waiting for the peg to be fitted, he has been very unwell recently due to increase of seizure and new seizure that no one can help him with, he was in hospital On HDU for 1week trying to get them under control . He was in a constant seizure for 2hours and he needed 3doses of rescue meds through ivs and he just about came round from it gave us all a very big scare, was very close to going to ICU.
He still very unstable at the moment and he still has his seizures daily. His development is still very behind. He can just about hold his head up, also we had some bad news a few days ago that he may be VI/ Blind.
He is a very loved boy and very well known to all the nurses and doctors. We take each day as it comes. My little boy is a STRONG fighter.
Jenson loves a good blanket and we all know what hospital ones are like. One of his own will be a comfort for him during hard times for him.