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Monday, June 22, 2009

If your tired of my whining, click off now.

I took Jax to his ped this morning. My main concerns were 1. He's been extremely pale, and dusky when he cries. 2. I noticed last night that stool is leaking underneath the bandage. 3. His extreme crankiness and screaming in pain fits he has.

She was going to call the surgeon, but she ordered a bunch of test first so she could pass on the info. They did an x-ray of his belly and chest. Because of the blue spells and his heart murmer is louder. They did a CBC to check his white count. That would help if he has an infection. His white count was ok, and she didn't see anything on the x-rays. His heart is a little bigger, so we'll have to watch that.

The surgeon said we needed to get a CT of his belly to look for abcesses. He said leakage is normal (thanks for telling me) so I had to run up to the hospital after I left her office to get the CT. The radiologist said he didn't see any abcesses, so I walked up to the surgery clinic to see how to change his dressing. The nurse also thought he looked pale. We changed the dressing. There was a little piece of gauze that had been sutured in, but it was soaked with stool so they cut the suture and pulled it out. We are watching him closely. We can't figure out why he is in so much pain, you brush your finger against his belly and he screams. But he has no signs of infection yet, so we watch. Great.
This is when he fell asleep on the futon after I had to put him down and walk away to keep from losing my mind. He'd been screaming for an hour.

The face of Jax these days.

The new huge dressing.

Why does it feel like things go great for a while and then God piles everything on you at once? I know they say he doesn't give you more than you can handle but I beg to differ. We only have one car right now. Rays motorcycle is having problems, my dad can fix it but its finding time for my dad to come over. Then it needs to be inspected and registered. Our other car needs to be registered but we thought we had some time because Ray rides his bike in the summer, but now thats out. The other car needs a battery, a windshield, and needs to be registered. How am I going to pay for all this stuff, if I take him to work I have to take him at 6 in the morning. And he has school on Mondays and Wednsdays, how is he going to get there? He is not quiting school. He's quit three times because every time he starts something happens to Jax and the whole world falls apart. I am about at nervous breakdown level. I've had a few people offer to bring dinner. I usually say no, I don't like to be a burden, but after the day I had today, I think I will give in and let people help. I can't afford fast food every night.

Sorry for all my whiny posts.

34 comments:

  1. Lacey, you are NOT whining. This sucks. I hate this for you and Jaxon :(. They need to figure out something to help him. He shouldn't be in pain and it breaks my heart to see him crying like that. I know it has to be tearing you up inside. I'm glad you're accepting help. I wish I were closer and I would be there with dinner (I promise I wouldn't do the cooking, you'd hate me! haha). We're praying for Jaxon every single day! Hang in there my friend, this too shall pass.

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  2. Lacey, I'm sorry that you have a reason to whine. And I think you deserve to. My heart aches for what you, little Jaxson and your entire family are going through. I hope the docs can figure out what is bothering Jaxson soon. I know that will take at least some grief off of your plate. Do ask for help and do accept it. It is okay, because you know you would do the same for others.

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  3. My little Jax..... :0(

    After I made that post on Saturday, I went downstairs and my brother in law and husband were reading my blog.....I think they were being Nosy...he he he.....Anyways, my brother in law asked me about Jax and I broke down in tears......My husband then had to take over and explain to him who he was..... (I tell my husband about him all of the time)........

    But after you said, with the possibility of having to "let him go" .....I was very upset......Even though I do not get to touch him and give him hugs and kisses....or even see him in person, I still have this bond with him...and you :0)......The thought of him not being here and his blog not having new pictures of his cute little face and outfits :0)....Is just really hard for me..... :0(.....I love little Jax and I simply CAN'T get enough of him!!....he he.....

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  4. I agree with everyone else. You are not whining. What you're going through sucks. Plain and simple. I feel so bad for all of you. Poor Jax, he should not be crying in pain. I pray the doctors can find out what the problem is soon.
    We will be praying for all of you. Try and hold tight to your faith. I know how hard it can get. But, just hold tight.

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  5. How frustrating. It must be very difficult to see Jax crying and wanting to make it all better for him. I am glad there are people who are willing to help even though it can be hard to accept it at times. Just think of all the things you've done for others. Praying that things will get better soon.

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  6. You're not whining, but no one would stop you if you wanted to. Why can't they figure out why Jax is in so much pain, what the heck! Lacey, take any and all the help you can get right now.You need to stay strong. Hang in there, we're praying!

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  7. Lacey I so wish I was closer to you. It stinks that you are having a sucky time right now. Hopefully they can figure out something to do for his pain to give both of you some much needed rest. You need to express what you are feeling and blogging is a perfect way. I'm praying for you guys and do take people up on their offers. You deserve and so does your family! Hang in there and try to find peace that so many people are praying for you and Jax. We love you guys!

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  8. Lacey, I'm so sorry you are having to go through all this. I know that everything we have experienced with Isabelle really has made me a stronger person and mom. Jaxson is so lucky to have you as his mom.

    I also know the whole thing about husbands putting off school. My husband, Jeff has put it on hold now with both of our kids. I'm not allowed to even talk about having another child until he is done with school. :)

    With all this being said, I figure we moms of these special kids have all the rights in the world to complain every once in a while. We are given so much to handle all the while being expected to stay strong, process it, and move forward. That's never an easy thing to do.

    So go ahead and whine a little. It helps take the tension off. Know we are all here for you - praying for you each step of the way.

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  9. My heart is breaking for you, Jax and all of your family!!! I hate hearing that he is suffering and that you guys are going through so much, especially all at once!

    As for God not giving us more than we can handle.....I have always believed this to be true. Although many times since having Gavin in our lives, I have wondered the same thing that you are asking. I've felt like I was going to absolutely break down and that God must think that I'm stronger than I actually am! Recently I read a comment on another blog that said something like, "God DOES give us more than we can handle, because only then do we break down enough to give Him all our worries, fears and stresses." This made perfect sense to me! I have always been a little bit of a control freak and thought that I could handle it all or should be able to handle it all, but since Gavin and my many times of breaking down, I've learned that I am NOT in control and the only way that I can get through things is to give it ALL to God! He will supply the grace if we give Him our problems. It may not be easy in the process, but good and peace will come!

    Plus, God uses others to help us during these times. I also have a hard time accepting help from others, but have learned that I can't do it all! I was also told by someone that by my accepting help from others, I was also helping them! People feel so helpless wanting to be able to change situations, like the one that your family is in, and they need to feel like they are doing something to help. So, by accepting their offers of help, you are actually helping them too!

    I am feeling SO VERY helpless, being many miles away from you and I wish that there was something that I could do for you! Just know that I do think of you and Jax often and pray for you lots! Please let me know if there is ANYTHING that I can do!

    HUGS and PRAYERS!!!

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  10. You're not whining at all. I think writing helps get out the frustrations and feelings of helplessness. Even though the Lord doesn't give you more than you can handle doesn't mean it's going to be easy for you to handle. Lily and I are bringing dinner tomorrow. it will be something yu can eat or freeze until needed for later. We will call before heading out:-)

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  11. You're not whining Lacey. I am soooo sorry this is happening. When I had my C-section, I had horrible pain like what you are describing on one side of the incision. The doctor finally figured out that they nicked a nerve instead of cutting all the way through it. I wonder if something like this is happening with Jaxson?

    I wish we lived closer.....we could tag team the kiddos. LOL!

    We will keep praying for you. Let me know if there is anything we can do.....I just thought....did the docs ever give you any Emla or lidocain creme? Like they use before they give shots? I wonder if rubbing some of that around a little and numbing the area would help?

    Hugs!

    Steph

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  12. Don't apologize sweetie, that's what friends are for. I wish there was something to give Jax some relief. Is he on any pain meds? Or would that affect his heart issues? I'm sure if he felt better it would help you to relax some.
    I wish so badly that we were closer to you. Don't ever worry about sounding whiny, I'm always here to listen and to help any way I can. Kiss the lil man for me.

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  13. Oh Lacey you are not whining, we are all here to listen, and pray. I wish we lived close enough to lend a hand and bring some meals.
    We are praying hard for Jax and you. Big hugs.

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  14. Oh Lacey... I do live close and I can help you. I know we have never met, but I would be more than happy to help. My heart goes out to you during this hard time.
    My car just broke down tonight. I might be with out a car while my husband goes to work... but I can work something out. Hang in there.

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  15. Lacey,

    All of us who follow Jaxson's story love him, you and your whole family. You are not whining - you are simply stating facts that life is not easy right now. I am so sorry that Jax is in so much pain - why can't they figure out why it is hurting so much. Do they say it's normal to be this tender at the incision site? Is he on pain meds? Hang in there - there has to be a light at the end of the tunnel coming up soon. We will keep praying and praying.....

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  16. I agree! You are NOT whining! You are stating the facts and it's hard times for you right now. Down right difficult! It breaks me that Jaxson is suffering so much. I can't imagine what you are going through caring for him each day. Poor babe! I know some others have probably said it, but I wished I lived closer. I could help somehow. This is your blog and you need an outlet. Please know we are here for you supporting you as much as we can from where we are at. Much love to you! And yes, sometimes God gives us a little much! I believe that!

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  17. I would walk to the ends of the earth to help you guys.To help Jax.Alyson spoke of the post the other night and it has effected me the same way.My heart breaks for you all and I want someone,anyone to figure out what's going on with this little guy.Keep talking and venting and please keep accepting help.It is all people know to do when they feel so helpless.Love to you and kiss that sweet boy.

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  18. My dear friend...my heart breaks. Iwish I could offer answers, offer peace, offer a solution. The only thing I can offer is a place to escape to this week, to get out of the city and to God's beautiful country. come up here and let your boys run. also, please let me know if anyone contacted you about dinners. I want to make sure they are 'handling it' like I was told! :) Let me help the only way I can!

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  19. Lacey - I am so sorry things are so difficult at the moment. You are not whining at all. You should DEFINITELY let people bring you dinner...and clean your house, do your laundry...whatever they offer you need to say YES!
    I hope Jaxson is feeling better soon and that you get some answers.

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  20. Oh no! It kills me to think that Jax is so sore! No wonder you feel the way you do - anyone would!
    I am really sending every happy and positive and good thought your way - I really hope that there is some improvement or sign that things are getting better soon!

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  21. OMG Lacey! I am crying as I write this. I know what you mean about God not giving us more than we can handle. I have been feeling overwhelmed about my situation lately and then I come back and read about Jax and think how lucky I am. I pray that God will give you the strength to carry on. Sometimes we don't understand why God is allowing us to go through the tough times that we do but we need to trust in him and know that he will see us through and we will come out on the other end much stronger. He loves you and he cares for you, your family, and most of all Jaxson! Hang in there and here's sending lots of hugs and prayers your way!

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  22. My heart is breaking for you right now. For one thing, it would be horrible to see your child in pain like that and not know how to help him.

    I understand the financial aspect, too. My husband get's so depressed about our financial debt that he just rebels and makes things worse and I just can't handle it.

    Yes, let some people help you!

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  23. Oh, Lacey, go on and whine, scream, rant, cry... get it out. I am going to pray and pray and pray for you two... for peace and strength for you and Jax.

    If you get a moment, could you email me (ds.mama at yahoo dot com) your address. I want to send you a little something to cheer you.

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  24. Oh Lacey! You are not whining. I wish there were something that I could do. And poor Jax...You are in our thoughts and prayers. Hugs and kisses!

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  25. Sigh. I love ya sweetie. I know this sucks, as Brynn would say 'it's a Dog Pile Trial', and you are stuck at the very bottom.
    Arna misses Jax tons, I don't want her to steam-roller him, so we can't come play :( I will take any of the boys if you want, Kenna is bugging me to play with Carter.
    Maybe Matt can help with the motorcycle, I will talk to him and find out when he can take a look at it.
    Hugs!!
    Juls

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  26. oh Lacey! This is terrible. Something is wrong with that boy. Ugh! I hate that they can't figure it out and fix it right now. These little ones suffer so much.

    All I can do from here is pray. Pray for you and your family. We all love ya - hang in there!

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  27. Shawna - Round Rock, TexasJune 23, 2009 at 12:25 PM

    My heart goes out to you and your poor sweet little boy. May God keep his healing hands on your baby and may He give you the strength to get through these tough times. Your family is always in my prayers.

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  28. I just read your comment on my blog...I'm still here and have thought of several things to post about in the last several days, but they just seem so trivial compared to what you are dealing with and what other people are dealing with!

    Who really cares about our little issues or cute pictures of my naughty boys when so many others are suffering so much right now?!

    I'm here thinking about you, Jax and others and praying lots though! I pray that your sweet little man is doing a little better today! I tbreaks my heart to think of him being in pain or uncomfortable! It just isn't fair for him to have to suffer so much!

    Hang in there! Love, Hugs and Prayers being sent out for you!

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  29. Hello dear Lacey, where do I start? I have really grown to love you and your little family and to log on each morning and see Jaxson's smiling face and to read up on all his new adventures, so when I log on and see your little guy in pain, it really does hurt! So I am praying for you all and hoping that Jax has a better night and keeps getting better! As for you, I wish I lived at least in your country so that I could order you dinner and have it delivered! I will work on it - he he! Hang in there my friend - when the going gets though, the though gets going! God bless and hugs to the boys! Megan and Keaton

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  30. Okay. Listen up. Seriously, k?

    You need to email Marc Levitt from CCHMC.

    marc.levitt@cchmc.org

    He is a SPECIALIST in this field. He will email you back. He is nothing less than amazing. You can even send Jax's records to him for review.

    Also, CCHMC has an excellent heart reputation too.

    I would get in touch with Dr. Levitt asap.

    And who was the surgeon who performed the cecostomy? I needs to know.

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  31. Lacey, It is NOT a whine, it makes me angry that the docs cannot figure out why he is in pain and I can't imagine being in your shoes right now, things have to start working out "right" soon. Saying a prayer for you and your family tonight. Try to keep your chin up, I know it can't be easy, accept all the help you can get.

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  32. LACEY, please girl....you are not whinning, I WOULD HAVE LOST MY MIND a LONG time ago!!!! You are such an incredible Mom!! You're always on top of it all & are able to keep us all posted so well....Jax is so lucky to have you! Do you know that MILLIONS of parents out there wouldn't be able to do what YOU ARE DOING!

    I know that this is overwhelming, but someway somehow Jax will get over this...HE'S A FIGHTER!!!! UGH, that picture is just too sad:(

    As far as the meals....GO FOR IT!!! think of the energy you're saving by not cooking;) I know that when I had meals for me, UGH....it was such a relief...COMMON, you most cetainly DESERVE IT HONEY!
    {{HUGS}}

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  33. Oh Lacey, my heart goes out to you guys. Poor, poor Jax!! I am so sad that he can't be more comforatble while all this is going on. And yeah, you can vent all you like, what else are blogs for? Make sure you find time for yourself in all this even if it is when you have to put him down and walk away. Just try not to overwhelm yourself if you can!!

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  34. Lacey, I am so so sorry that you and your family is going through this and that poor little Jax is soo uncomfortable and in sooo much pain. It breaks my heart just reading all your posts and seeing Jax like this. I have been having a problem lately getting onto your sight but I think about Jax all day long and have been praying for him. I really hope he starts feeling better soon. Hugs to you all. Sweet dreams Jax!
    Christine and Jonathon

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