Just Another Day…

Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.

Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!

There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.

Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!

On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.

Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.

He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.

We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.

The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.

Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.

Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.

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10 responses

  1. and through it all he still has that great smile. hang in there you are doing great. I just cant imagine how you must be feeling. I have issues with my son, with his severe GERD and feeding (lack of) we have a g-tube also. I am now considering the Fundoplication at this time and the knots in my stomache I get with this, Oh how you must feel. You give me strength, and I thank you. Tracy

    December 19, 2009 at 2:52 am

  2. Amanda

    We’re praying for you and the little guy every day. We hope this weekend has been full of rest and healing for everyone.
    Amanda, Tom, and Duncan

    December 20, 2009 at 4:23 pm

  3. S,
    I keep thinking about you and A. I hope everything is getting better. Wishing you a Merry Christmas seems silly as I don’t think there is anything merry about having A in the hospital. Big hugs. Keep us posted.

    December 27, 2009 at 9:38 pm

  4. S, I haven’t seen an update from you and I’m really worried. Please know that you are in my thoughts and if there is anything that I can do, please feel free to contact me. If you add me on Facebook you’ll see that my cell number is on there.

    Hugs to you all.

    Stacy

    December 31, 2009 at 2:42 pm

  5. so happy to get your update s…I’m so sorry A is just not improving…

    January 3, 2010 at 2:03 am

  6. Angela

    Just thinking about you guys, and hoping A is making positive progress. Continued prayers for his recovery and healing, and for your ongoing strength.
    ~ Angela

    January 3, 2010 at 3:26 pm

  7. Oh my! I haven’t checked your blog in a while, I had no idea A was having so many challenges. My heart broke for your family while looking at the picture of A with his trach. I’m so sorry it has come to this, but I hope it will make A more comfortable and better able to breathe.

    Thank goodness you finally got a doc who listens to you and takes A’s problems seriously. That would make any mother crazy!

    I hope A starts feeling better very soon and his blue spells stop, and you get some rest and you can all go home! (long sentence, sorry)

    -Patty
    (Abby’s mom)

    January 6, 2010 at 5:13 pm

  8. I’m thinking about you both too and I hope everything is okay.

    January 7, 2010 at 7:06 am

  9. Just checking on you. I hope all is going well.

    January 7, 2010 at 9:25 pm

  10. Jennifer

    Hey! I am thinking and praying for you guys. I hope A is doing better. I think about you guys daily. I hope to get an update soon!

    Jen
    (Landon’smom)

    January 9, 2010 at 6:22 pm

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