William

August 20, 2010

William

Before i start i want to make it clear that i have Sir's permission to write this post, and that i'm not doing it to get pity or whatever from people who read this blog. i feel sad about what is happening but that doesn't mean that i or Sir or William or any of our family need to be felt sorry for. i was going to write this in my private paper journal but i have found in the past that writing here on my blog tends to get my feelings out better and i could really do with that right now, so that's the option i've chosen. If you choose not to read or don't want to comment, that's up to you.

Lets backtrack a little first. Since he was born William has been having some difficulties getting used to breastfeeding. i have been lucky that Poppy and Finn both took to it like naturals and seemed to know instinctively what to do with only a little initial guidance from me/ the lactation consultants, but William finds if tricky to latch on properly and to co-ordinate the sucking pattern where he actually gets milk for anything beyond 3-4 sucks at a time. This means that he takes 45mins to feed compared to 20mins for Finn and i have been needing to physically help him achieve the latch and hold his head in place to prevent him sliding back to a more shallow position, plus express some milk before bringing him to the breast to prevent him choking on the fast flow. With time and practice though i think he will learn what he needs to do and be able to latch on better himself and finish feeding quicker than at the moment. i'm going to persevere with the breastfeeding because it's the best thing for William and whilst Sir is at home with me i can take the time to let William nurse to his own schedule. Oh and the problems with getting William settled down in his cot after feedings? We seem to have solved that by swaddling him tightly in a blanket in my arms immediately after a feed which instantly relaxes him and makes him sleepy, so that within a few minutes i can lay him in his cot still swaddled and he drifts off without any problems. So that's one thing that's going well.

Now for the not so good news. Yesterday i noticed 2 strange episodes from William that i thought might be seizures. During a feed he suddenly stopped, brought his arm up and into his body and then had repeated little jerking movements of his left arm and left leg, with his eyes fixed to the left and his eyelids flickering. This lasted about 10seconds and he came out of it and continued with the feed. Then he did it again a couple of hours later when i was snuggling with him on the sofa and Sir was able to see it that time and agreed that it didn't look right. i phoned up the doctor and he said that it's possible they were some type of seizure, given William's condition, but that the best thing to do would be to make a note of any episodes which i think could be seizures, writing down the date, time and appearance, and take that with me to William's appointment with the specialist, with any video footage if we can get it. He also said that probably other people wouldn't have noticed it, just me because i work with special kiddies so know what seizures can look like. He said that so long as the episodes were brief, they weren't affecting William's breathing and he didn't keep going in and out of them repeatedly, there was little point in us taking him to the surgery or to the hospital as they wouldn't be able to do anything for us, and the best person to talk to would be the specialist in TS who we already have an appointment with. i felt worried about the seizures, but understood that there isn't much that can be done at the moment.

Then during the 1am feeding last night William had another episode but this time it was more severe - his body seemed to be trying to fold in the middle, his head and legs came in, his arms came up, his eyes rolled up and his lips went very blue. That lasted a few seconds, he seemed to come out of it, then he went into another one and then another one. Sir and i decided to take him straight down to the hospital, so we bundled all 3 children in the car and drove, with me in the back looking after William. He was still going in and out of the seizures for the first part of the journey, but had stopped by the time we got to A&E. They were very good and saw us right away, with a doctor asking lots of questions and checking William's heartrate and breathing and temperature and all that came back fine. He said that from our descriptions it definitely sounded like a seizure but as he had come out of it by himself there was no point in giving him any drugs. William was kept in observation for a couple of hours but he just slept peacefully and there were no more episodes when i next fed him, so we were allowed to come home. i phoned the specialist first thing this morning and he is trying to move William's appointment forward, but as he will need lots of tests including an MRI scan and an EEG he needs to find quite a big chunk of time for it and he wants to be able to give us the results on the same day, so he is going to try to do some juggling of appointments. He is phoning back later to let us know. Otherwise we have to wait a month until the appointment we already have (Sept 20th) and i am scared that William will continue to have these seizures in the meantime. i have seen plenty of seizures before in older children, but it's scary when it's your own child and he is only a tiny baby, plus he isn't on any medication for them and i don't have the emergency meds to give him like many of the other children i have worked with had, and the fact that he had breathing problems during the last episode really worries me. So that's where we're at right now. William has been fine since the 1am problems, but i am keeping a careful eye on him today, and hoping for an appointment soon when the specialist rings back.