We are home but it has been anything but normal.
Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.
Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.
I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.
I seem to cry at the drop of a hat at the moment, just can't keep it in and found myself breaking down on Monday morning when it took me an hour to get through to the Dr's surgery, after being cut off and having to listen to an annoying robotic voice telling me I was number 6 in the queue. When I finally got through to the pharmacist, I just fell apart and could hardly speak through my tears but finally managed to blurt out what I needed to tell her.
The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.
Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!
Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.
They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.
So now we are back where we started 6 weeks ago, coping with the side effects of a new medicine. Hopefully it wont have such dire consequences as last time cos to be honest, I don't know how much more, we as a family, can take.
I am truly truly running on empty.
Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.
Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.
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| an apple a day, keeps the doctor away (source) |
I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.
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| Jack in HDU, first day off the ventilator |
The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.
Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!
Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.
They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.
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| Jack's teddy in ICU. He looks like I feel lol |
I am truly truly running on empty.
Lyndylou...I feel so helpless reading this and wish I could be there just to give you a hug and let you cry your heart out. I've gone through my own hell with my husband when he was sick so I understand your exhaustion and worry. We are tough women though and we just run on autopilot sometimes. If he is in the hospital, perhaps you can get some good rest at home for a day. It does wonders for making things feel more in perspective. When you're exhausted your brain doesn't let you think clearly. Know I'm thinking of you and sending you so much love and support. Let's hope for the best! Hugs my friend. XXOO
ReplyDeleteI am so sorry. You are all going through so much right now. I wish I could help, and I will tonight by praying for you and your family. It is certainly normal for you to cry a lot at this time. Hugs to you.
ReplyDeleteCry all you need to sweet. It is the bodies way of releasing stress and holding it in isn't good. Everyone around you will understand.
ReplyDeleteLike Barb & Belle, I wish I could take some of your load from you but all I can do is send you positive energy and hugs
Lynne...I don't have anything more useful or more profound than what others have said both here on the blog and on FB. I can only try and imagine as a mother what the last five weeks have been like and how tired and sad and low both you and Holly feel. The thing is you may be able to get some physical rest if others are available but mental and emotional rest will be so hard to get at a time like this. You are so in my thoughts as are Holly and Jack X
ReplyDeleteSo sad for all of you to read this, Lynne. You sounds so tired and emotionally exhausted. Someone needs to take care of you and Holly as well as Jack xxx
ReplyDeleteLynne - there isn't too much i can do from so far away and even less than i can add to what others have said.
ReplyDeleteI'm glad i managed to talk to you last night and at least managed to make you giggle. Would have been a cuppa as well, but i doubt my phone would have liked that.
Try and get a little sleep for yourself - and if the worst happens and you end up in the place we shall not name - you know who to ask for then holler for us - we'll be there!
Dear LyndyLou - Like the others above, I just feel so helpless and only wish that we could all be there beside you to give you some hugs and just let you cry and cry. Poor Holly too, she's bound to be affected by all that has been going on with her brother. It must be such a dreadfully worrying time for you all. I really do pray that Jack's new medication will actually do some good and HELP him, instead of causing yet more problems. His poor body has been through so much. It's wicked really that he has to suffer like this. I know that these words just aren't adequate enough, but it's all I can do, apart from pray for all of you to have the strength to get through this and that Jack will get stronger. Big hugs my friend.
ReplyDeleteIf anyone I know deserves a good cry, it is definitely you and your daughter. And it may not be depression with Hannah, but simply exhaustion. I can't imagine doing what you two do for darling Jack, but I do know he appreciates and loves you both so much.
ReplyDeleteNext time you need a good cry - do it - and hug your pillow. And pretend that pillow is all of us that love you so much and wish we were there to hug you back.
Good thoughts and prayers that this passes for Jack soon.
I wish I could find the words to say something that would make this stop for you even for a moment. I cry at far less - if you didn't you wouldn't be human. Keep smiling, keep laughing and cry when ever it happens. All thoughts and prayers are with you, Jack and your family x
ReplyDeleteDear LyndyLou,
ReplyDeleteOh, my heart is aching to read your post and like Barb said I wish I could be close with you and hug for your efforts. Her comment is perfect.
I was at a loss when my brother had mental sickness last year and in the year 2000 my mother was in bed for about 8 months before they passed away. But it is not the same situation you have now.
Big Responsibility on your shoulders, thinking about you and all of your loved ones, my friend in Scotland. Orchid*
Awww sweeite, I wish there was something I could do to make your load lighter. Know i am thinking of you and sending hugs your way. I wish I could do more but hope these words find you in a better place. Hugs.
ReplyDeletewhat more can I add that everyone has already said? I'm sending you a ginormouse hug (a word I think I invented that's a mix of gigantic and enormouse!!!)giving you strength and love. I hope it helps in some small way but I also hope you get some more practical help from people who are trained and can actually give you a break, when Jack returns home soon xx
ReplyDeleteOh LyndyLou.... I am so sorry to hear how very difficult it is for you all right now. It's no wonder you're weepy all the time, you are truly exhausted. I really hope things ease up soon and that you get the qualified help that you so desperately need.
ReplyDeleteHugs from me too...
((xx)) Jazzy
OH Lynne, I wish like everyone else I could be there to give you all a hug and some time off from all of this. You, Holly and Jack deserve a break. I hope you take advantage of every moment you can and catch up on your sleep. Oxygen first to the mothers on airlines!
ReplyDeleteSending you all love and prayers...
OH LindyLou! I'm so sorry to hear Jack is back in the hospital!
ReplyDeleteI'll be thinking of you all and hoping for the best!
Take care
xoxoxoxo
LindyLou, what a difficult time you're going through. So sorry. No wonder you keep breaking down in tears. I do hope that you get the right support very soon. x
ReplyDeleteohh Lyndy, for once I'm speechless,and now teary, not only your words but all your friends here.I too feel so helpless.I truly hope all the good thoughts, healing energy and prayers we are all sending as a job lot help.
ReplyDeleteI am late here , so it seems your are still in limbo. big big hugs Lyndy.
Thank you everyone for your lovely comments and your virtual hugs and your never ending support. You have no idea how much I appreciate knowing that you are all rooting for us, it's much appreciated.
ReplyDelete