A Is Sick Yet AGAIN!

Well my little man is sick again. It started last weekend with him not sleeping very well and having a lot of desats. Sunday night we started him on oxygen which seemed to help so I figured he was just needing some extra support. It wasn’t really until Wednesday that he started with the coughing, going off colour a lot more and just not being himself. When he got up that morning he was not looking well at all. Daddy cuddled with him on the couch and when I happened to come in the room after about fifteen minutes and look over at A he just looked BAD. I went upstairs to get his monitor and he had very low sats that would not come above 60. I got the nasal prongs out and put him on oxygen and that really helped him. I called his doctor here in town but they could not see him until yesterday.

Grandma and I took him in for 1pm and A did not want to be there. He was also tired as I had just woke him up before we left. He was going off colour and the doctor did not like what he was seeing. I have to add that this doctor has seen A go off colour MANY times and never ONCE has he been concerned like he was yesterday. I really think that he received a letter from Sick Kids about how we were treated the last time that we were in Guelph emergency.

Anyways, he told me that he wanted me to take A to Toronto or to Hamilton emerg and have him seen there. I started crying of course because I absolutely HATE hospitals and it just was the last thing that I wanted to deal with. It breaks my heart every time that we go there and they have to poke and poke him for IVs. He suffers SO much and there are times where I really just can’t do it to him.

Anyways, we ended up leaving the doctors with a note that I was to give to the emerg doctor telling him about what he saw while we were there. I was very upset because it is always the same old thing when we go. People rush around like mad when they see A’s oxygen sats but as soon as they hear that he has a history of them it is like they don’t give a crap. Very frustrating as a mom but I cannot lie to them as all of these hospitals have record of A.

We came home and I called his team at Toronto Sick Kids. The NP that I deal with did not feel that A was at the point of needing admitting. We had put on his Wonder Pets for him and he was only on half a litre satting 100. He was smiling and just not seeming sick enough for me to want to deal with emerg doctors on a long weekend. After speaking to her I decided that I was just going to keep him home.

We had a nurse on last night and she said that A had a pretty good night. He was restless between 3-6am but other than that he was satting well and sleeping well.

I have had to do some suctioning and for once in my life I am actually getting things up and out of there! Makes it much easier for me to do it knowing that I am helping him.

Today he woke up not so happy and I thought we would be heading into emerg today but once I got him dressed and settled he was fine. We went for a nice long walk and he went down for a nap at 3pm and is still sleeping soundly now at 5:30pm. I have the compressor on with a mask near his face and he has not dipped below 90 once.

I just hope and pray that things get better for him before they get worse. I don’t know why on Earth he keeps getting sick so much this year. It is the crappiest year of my life EVER! He has only been home now for just over three weeks from his last ordeal and I really don’t know if I can handle being in there again so soon. I keep wondering when we are going to catch a break around here and have good things happen?

In other A news, we started speech therapy on Tuesday. He will go every Tuesday for eight weeks to start off. It was interesting but I really do wonder how speech therapy works with a child that is non verbal and very stubborn?! We’ll just have to see how it goes.

These were taken March 25th…I had been feeding him and his extension came undone so the food went everywhere!

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Look at what he did with physio last week!!!!! First time EVER!!!!!!!!!

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Is he not just amazing?!?!?!?!?!

I have been getting a lot of emails from people all over the Internet asking how I am doing since losing H. It was two weeks ago tonight that I went into labor with him. I can hardly believe that fourteen days have gone by. There are times when I am so heartbroken and just cry and cry. And then there are other times that I just feel like everything wasn’t even real. I just wish I knew WHY it happened.

I have been doing pretty well though I think this past week. I have started a blog for Hunter, more of a diary for me to write my thoughts and feelings. I have always been a big person for writing a journal and I think this has really helped me already in dealing with my grief. It helps to get it out. It is a private blog that only I can get into right now but in time I may open it up to some of you that would really like to read it. Let me know if you are interested.

I have also contacted my social worker that I have dealt with on and off since A came home from the NICU. She will be coming next week to talk. She is a wonderful lady and it really helps me to talk to her. I have not seen her since before our wedding so there are a lot of things to talk about.

I also wanted to say thanks to those moms in my Internet world that have been there for me and talked very openly with me about losing their babies. It always helps to talk to others that have been through it. Makes you understand that you are not the only one. That you are not to blame. You guys know who you are!!!! Huge hugs to all of you!!!

Another thing. People seem to be so afraid of asking me how I am when they see me. Afraid of saying anything really. Do NOT be afraid. I want to talk about H. I want to remember him. When people “ignore” asking me anything I feel like he didn’t matter. I know that is not what people intend at all but it hurts me more to hear nothing than to hear something else.

I don’t want to hear that God wanted it this way. I don’t want to hear that it wasn’t meant to be. I don’t want to hear that God doesn’t give me more than I can handle. I don’t want to hear that he is in a better place. I don’t want to hear that I am young and still have lots of time to have babies. I don’t want to hear that I can always adopt. I don’t want to hear that we are supposed to have an angel. These are all things I have heard yes. And honestly it drives me mad.

Actually, this makes me think of a poem I read on the Internet. Here it is:

Don’t Tell Me
Please don’t tell me you know how I feel, unless you have lost your child too,
Please don’t tell me my broken heart will heal, because that is just not true,
Please don’t tell me my son is in a better place, though it is true, I want him here with me,
Please don’t tell me someday I’ll see his face, beyond today I cannot see,
Please don’t tell me it is time to move on, because I will never be there same,
Please don’t tell me to face the fact he is gone, because denial is something I cannot stop,
Please don’t tell me to be thankful for the time I even had, because I wanted more,
Please don’t tell me when I am my old self you will be glad, I’ll never be as I was before,
What you can tell me is you will be here for me, that you will listen when I talk of my child,
You can share with me my thoughts, you can even cry with me for a while,
And please don’t hesitate to say his name, because it is something I long to hear everyday,
Friend please realize that I will never be the same, but if you stand by me, you may like the new person I become someday.

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10 responses

  1. Justinich Family

    First, it totally sucks that Ashton is sick again, my guy is sick again as well, he was sick in the middle of March so it is the 2nd time in a month. Now he is not sick like Ashton was but I can relate to the frustration of you kid getting sick consecutivley. So frustrating. I am so excited to the pics of Ashton at physio he looks great. I am so sorry about what people have said about Hunter. I have not lost a child so this is something I can’t even imagine going through. Sometimes it is hard to know what to say. It is like when people find out you have a special needs child and say things that really do not help and often make you feel worse. I hope things settle down and the rest of the year is uneventful as far as sicknesses etc go. Stacy from CP Moms

    April 11, 2009 at 12:47 am

  2. Laura

    I am so sorry to hear that Ashton is sick. He looks amazing in those pics, I really love the gtube pic I am so happy to know I’m not the only one that has done this except your kiddo is smiling mine was screaming!I am so so so sorry about Hunter I know how it feels and your poem made me cry because all those things are so true, I miss my Preston everyday and its been 16 months. I don’t understand why these things happen especially to parents that DESPERATELY want them, will love them and care for them, so again I am so sorry!

    April 12, 2009 at 12:54 am

  3. Our little Miracles

    Thank you so much for adding me to view this blog. I am so sad to hear Ashton is sick again. But glad he is out of the hospital and you are having success treating him at home. His PT photos were amazing. So nice to see. I also cried many tears reading the poem. I’ve never seen that one before.

    April 12, 2009 at 3:58 am

  4. Amanda Lawrence

    Happy Easter, everyone. My family has been praying for yours. I’m deeply sorry that Hunter isn’t with you on earth anymore, but you know he has the best seat in the house to enjoy the celebration in heaven today. I hope Ashton feels better soon and that he continues to do the amazing things that he has been at physio.Take care,Amanda

    April 12, 2009 at 12:01 pm

  5. Nancy Brown

    I am totally interested in your other blog. TOTALLY THERAPEUTIC

    April 13, 2009 at 3:22 am

  6. abby

    The poem is beautiful and captures a lot of how I feel, too.I also miss hearing Olivia’s name each and every day and nothing really will change that. I don’t think a day passes when we don’t think of her around here.Anyway, I hope Ashton is on the mend and that things improve for him as the spring sets in. And I just want to send you guys some hugs and let you know that I am thinking about you a lot even if I’ve been a total flake about writing lately.

    April 13, 2009 at 4:32 am

  7. Shannon

    I hate to hear that he is sick again. I hope and prayer that he can remain at home and not have to be admitted to the hospital.
    I know thats the last place yoy want to be. You are such a strong woman and a great mother.
    Ashton is lucky to have you.

    April 14, 2009 at 11:51 pm

  8. Nathali

    I sent that poem to my friend who lost baby Noah, and it is like you said, if you have not lived it, it is so hard to imagine. I feel guilty sometimes that Michael is still with us, because everybody expected him to pass and for Noah to be okay. It’s so cruel!!
    Maybe people don’t want to talk about Hunter, because it makes THEM feel uncomfortable. Just know, that he has touched many many hearts and he will NOT be forgotten!!!

    I am so proud of Ashton lifting up his head like that, wow!!!! Hope he’ll catch a break soon, being sick all the time sucks!!! I wish there was a hospital in your area where they would take his symptoms more seriously!!!! We are all praying for you and your family for better times!!!

    April 17, 2009 at 3:05 am

  9. Heather

    Oh, that boy is squeezable. Love, love that smile. If we lived close we’d set up a play date just as soon as Ashton felt better. By the looks of his smile, my daughter, Daphne (Oct’05), and your Ashton, would be in cahoots instantly.

    April 24, 2009 at 5:35 am

  10. Jaclyn

    I hope Ashton feels better soon. It is great to see the pictures of him in therpey. I remember the first time Preston did that i bawled like a baby. Now everytime he does something new I cry. I love watching preston in Speech therpey when you can tell he is picking up new sounds or trying to mock them. It makes me so proud.
    People can be very rude when it comes to losing a child. It has been almost 2 years since i lost my son Hayden. I still get that from family members and friends. They never bring him up and it seems like they are still afraid that their children are going to die also. It is very heartbreaking to me that they act like he didn’t even matter. When we do cards and stuff I still sign his name to them and put a halo around it. He was very much part of our life and if people don’t like me talking about him to bad. If they are uncomfortable how do they think we feel. We are the ones living through this he– everyday. Please email me if you need to talk or anything. smacky81@yahoo.com

    Jaclyn

    April 25, 2009 at 11:35 pm

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