First, let me say what happened at the surgeons office. He pulled off the dressing that held the tube in place. Like you saw, it was soiled with stool. He walked down and talked to the radiologist to see if we could just put the button in. We could put a new dressing down, but it would be soiled again in a day, so 5 more weeks of that would get old. The radiologist was hesitant, if it hasn't healed to the skin, stool could leak into the abdomen and then we are talking sepsis and emergency surgery. Our surgeon didn't think it was likely, so we went ahead and put the button in. We have to watch him for fevers and other signs of infection in the next few days. I will show you tomorrow the button, and what we do to flush it, its quite interesting. I've never seen this before and I'm sure you haven't either.
But first I have to give a big thanks to my blog world friends. I feel like I've been friends with most of you for life. I few I've met, and one day I'm going to buy an RV and travel the country visiting all of our friends. So thank you for your words of encouragement, and especially your prayers.
Thanks to Lily and her mom for dinner. And to our friend Barb for dinner. And thanks to Carter's mom for dinner tonight. And thanks ahead of time to Emily and Tausha, who are coming over on Tuesday.
Thanks to Michelle, who always offers to help, and is letting us come up to her house to visit to get away and let the boys run. Thanks to Melissa, who also always has kind words, and I can tell, even through the computer, that you have a spunky spirit. Thanks to Shelly, who had dinner sent to us from a whole other state, I told my friend about that in the store, and she cried. Thanks to Phenny and his mommy, who give me my fix of those big blue eyes and curly hair.Thanks to Alicia, who's Gavin has the same brain injury as Jax, and we have so much in common its scary. How I want to get to Michigan some day to meet you and Gavin, who is Jax soul brother. And finally, thanks to Heather, who I actually got to meet her and sweet Zoey. Hopefully someday we will be neighbors, and I love your family and especially you so much. If I forgot someone I'm so sorry, everyone has been so great.
As I tried flushing this tube for the first time. It was scary, I was basically winging it. No one really has a lot of experience with these, so its frustrating not knowing. He still has so much pain around that site. So I'm messing with the tube and he is screaming. And then when I finish that I stick him in the leg to give him his shot he gets twice a day. Why do I do this stuff to my baby? Does he really deserve it? Maybe I should have let him go when he had the brain injury, or in January 07 when he went into status and we almost lost him then. How do I know when its the right time? Sometimes I wonder if everything he needs done is all worth it to him. He's so small and so fragile. I just felt bad tonight when I had to poke my baby that was already upset, it makes me sad..
1 month ago
20 comments:
It's not his time to go yet. Hopefully it won't be for a long time, when it is time he will let you know. I know we talked a little about this the other day when I was there. I can't even imagine having to let go of a child. My mom and dad did it with my sister who was 45 when she died from cancer, it doesn't matter how old the person if they are your child it will hurt.
But, it's not Jaxson's time. Not right now, so while you are sad that you are hurting him also celebrate that he is still here with you and it's suppose to be that way. Be grateful that you can stroke those beautiful soft round cheeks of his, yes people reading this, get jealous again - his cheeks, his arms, his hair are all wonderful to touch and see in person! Be honored that you were chosen to be his mom and know that your courage and strenght along with his are encouragement and hope for so many others. Aren't you amazed by how many people Jaxson has brought together? All of our children with disabilites have taken us to a greater place. A place we never would have experiened had it not been for them. I will forever have a bond with a select group of people, because of their children. Children that the majority of the world write off. Oh, if they only knew what they were missing!
Lacey, I have never met you and I may never get the chance but you are a wonderful mom and doing more than most would ever imagine in a life time. He will let you know when it is time and God will let you know too. yOu and your family are doing a great job (those words don't seem to say enough)
Lacey, you are always so thoughtful! You make Blankies for children, even though you have a crazy, busy life and here you are going through some really tough things, and you take the time to thank so many of us on your blog! You are one in a million!
I've talked about renting an RV to go visiting all of my new and wonderful friends and their amazing children too! This would be the best trip EVER! It is so difficult getting so close to all these wonderful Mommas and not being able to ever see them and help them out in their times of need. Blogging has been such a wonderful thing, but it is also a sad thing, because you become such good friends with people and yet you can't really act like friends, because you are so far away! UGH!
I'm so sorry that you and Jax are having to go through such emotional and painful things! It's just not fair! I went through a time when I really just wanted God to take Gavin so that he could be free from pain and suffering. It was a very difficult time, right after his brain injury. Here we were making him go through all of these painful and uncertain things and knowing that his life was not going to hold a lot of hope anyway. I talked to my pastor about whether we should "just let him go?" Our pastor said that as long as there were procedures that could be done for Gavin, we needed to do them for him. We couldn't give up on Gavin. He said that God would take him when He was ready to.
I really struggled with this! I hated watching my child suffer! I still do, but I am so glad that we followed our pastor's words of wisdom! God has a very big purpose for Jaxson! I KNOW that He does! Jaxson has touched so many lives! God is using your sweet boy for His plan and purpose and even though it is SO VERY hard on you and your family, it is a perfect plan! God's plan is always more perfect than our own! I can promise you this!
Please know that you and Jax are thought of and prayed for so often in my day! I can't wait until the day that we can hold each other's special boys and give each other a hug! Keep fighting Momma! You and Jax CAN do this! God WILL supply you with the strength! LOVE AND HUGS!!!!!
Lacey, I won't have my computer, well my husbands computer for a few days, so I won't be able to check in on Jax. Sending all our prayers and love to you to last the weekend. Lacey you are an extraordinary mom, doing everything possible for the son you love. Stay strong!Hugs to Jax.
Lacey, sharing your joys and sorrows with Jaxon has put an imprint on our hearts. It's clear that God has plans for you and Jaxon. You are in our prayers.
Like I've said before... you are such an amazingly strong woman. I've met your sweet Jaxson before. You feel an amazing amount of peace and love from him. I honestly am so thankful for this "blog world" too. I look forward to meeting you Tuesday. You are doing amazing things for your little boy.
Lacey: Hey, I don't know how religious you are but I wanted to share something that my Father came across when reading some words from one of our church leaders. I think anyone whether religious or not would be comforted by these words as I was.
Blessings promised to mothers of children with disabilities. I speak a word to mothers who have little children who are handicapped, children whose little bodies were born incompletely formed or whose little minds are limited. No one knows the depth of agony that you have suffered. By way of consolation, I read from scripture:
Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation. For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory;the hour is not yet, but is nigh at hand. Blessings will be extended to mothers such as you who have given tender and affectionate love to handicapped children. Trials such as these bring a reverence for life, a new depth of compassion and motherhood.
I hope this brings you peace. I also feel, personally, that in the next life blessings, we can't even imagine, will be given to our little children who have had to suffer here on this earth. I can't wait to meet you on Tuesday. Keep your chin up.
Dear Lacey, This is Joyce. We have been traveling so I have not been able to comment lately but we have been reading each night about Jaxson's medical trials. My heart breaks with yours each time I read that he is having so much pain. That is such a hard thing for any mom, but especially one who has fought so hard to keep her son alive.
I so remember days when I looked at Sarah's frail little body after being in and out of the hospital for months and thinking she just cannot take one more day of treatments, poking and clapping. Her poor little arms had no more unbruised spots left for IV lines, yet she needed them. and I too wondered why were we continuing this fight. Why did we immediately call the squad each time she stopped breathing. Why did the professionals go thru heroic measures to reinflate her already damaged lungs and siphon the fluids. Then when the monthly infusions of IVig started and she would scream in pain, I questioned our judgement again. My husband and I would take turns being depressed. Fortunately never at the same time so the other could pick up the pieces and keep our family going. When I look at Sarah today it is hard for me to accept that I questioned the master plan.
The emotional tool this all takes is exhausting. You are doing such a great job for Jaxson. He obviosuly has something yet to show us all. I am guessing it is hard for you to really care about that right now as you struggle to get up everytime you're needed. Struggle for physical and emotional strength. Struggle for clarity of mind. Please just know there are many of us praying and thinking of you each and every hour. Jaxson is an inspiration to so many.
Jaxon has a beautiful plan...it's hard to see when you are right there in the middle of 'it' all the time, the doctors, the pain, the hosptial stays, the long nights, the tears. But Jaxon, through his journey has blessed the lives of many...so many. He has changed us all for the better. I pray for his peace, for your strength and knowledge that you will never be alone in all of this...never and that when it is time, Jaxon will return home just like the rest of us...but you are doing what you need, being a wonderful mom to him and a great friend to all of us...God will take care of the rest...never 2nd guess that!
FINALLY. I had to go to someone else's computer to do it...we can get everything BUT post entries to show up on Jaxson's blog. I'm so frustrated.
This stinks. Rotten, rotten, rotten stinks. But something tells me Jaxson wouldn't give anything for the look on your face when you greet him in the morning...and connotation of love and tenderness he associates with you and everyone in his family surpasses even the pain he associates with all the treatments he's going through.
Don't feel like you need to be talked out of having doubts or feeling angry. You're entitled to whatever emotion springs up and it isn't any reflection of your talents or the level of compassion you're feeling. You have a heart that's hurting like his. He needs that more than anything.
I'm sure you can get through the next five minutes. And when they're up, if nothing else you're STUBBORN enough to make it through the next five. You have our blessing to curse as much as you need to through them and we'll keep praying that a little sunshine is in store very soon.
I think Jaxson's in good hands, so Boom Booma and I will be remembering your heart in the days ahead and praying for a little rest for you all...
Never thank me.I must thank you.You share your heart,you share your words of comfort and most especially you share your precious little guy.Jax is here today and there is reason and purpose for that.Even on a day like today that I struggle to find it,it is there.Softly and often dimly showing us the way.Jax is a fighter and a miracle and his presence here allows us to see that something far bigger is in control.The difficult paths that have been chosen for these children is often questioned.I know I do it daily.But I still must circle back to the gift and perspective we have been given because of their live.No matter how long that life is.One foot in front of the other.One now at a time.You do this with grace and honesty and courage and this is why Jax was given to you.I am here always Lacey and perhaps one day you will be her,closer in distance.lifting each other when we need it most.THANK YOU for being the friend you are to me from afar.Love you.
oh Lacey - we all love you. I talk about you, Jax, and your family often with my Father in heaven. It makes me so sad that he and you go through so much.
I'm praying..always
I'm glad he put the button in. I am so hoping it helps and that the pain will subside very soon.
I can't even begin to imagine what you're all having to go through. I'm glad people are delivering dinner! You really deserve it! I wish I lived there to help! HUGS!
I don't believe it is his time to go either. He has such an amazing spirit and blesses your family so much. You are an awesome Mom who is great at taking care of not only your family but many others - some of whom you have never met. You know the meaning of paying it forward and you have touched the hearts of many. Jaxson has also touched the lives of many people. He is so special and so beautiful. Make as many happy memories as you can - he will remember those times - and hopefully he won't remember the countless procedures and shots. Thank you for allowing us to bring you dinner - it was a privilege. Please, please let us know if you need anything - we are here to help if you need it!
Sweetheart, you're his Momma.. if that time comes, you'll know. It's never a comfortable or simple decision to make, but in your heart you'll know it's time. I've never had the priveledge to meet you or Jax in person but I firmly believe that he still has alot of fight left in that fragile little body. He may be small but his spirit is mighty.. just like his Momma's.
AAAWWWW, Thanks Lacey, that was so nice of you to say that...but seriously, YOU'RE THE ONE that's awesome!!! you ROCK girl!
So, I'm glad that it went ok today..Poor Jax though, that HAS to hurt:( Still praying that you'll hear something from BOSTON though, what the heck??
So, this Mickey Button thing...it's supposed to be easier...really??? It's really freaking me out! Just pluggin Dillon in & it's already looking like it's going to come out...YIAKS!! Please Lacey, calm my nerves down when you have a moment of your already crazy schedule...LOL (I'm really not freakin out...just like, ok...this is NOT going to last long..?)
Lovins & huggins your way!
Melissa & Master Dillon
After being through what my little one has been through (not nearly as much as Jax has been)....i get VERY overprotective when people want to poke at him.....I almost would rather do it myself.....because then I know it will be more gentle....but it's still so hard......It is NOT Jax's time to go....NOPE NOT AT ALL!! God has a plan for him and little Jax is too busy teahing and touching the lives of other's.....He doesn't have time to go anywhere :0)
With Avery.....It all depends....When he doesn't swallow I think he's being a stinker......When he vomits....Sometimes it is because he doesn't like the taste of something.......So I am on that 60/40 thing,.......60-reflux 40-his stinker attitude :0).....It's rough.......
The doctor just approved Pediasure for him so we'll try that tonight.....Hopefully it will work out for him and he will LOVE IT!!!....ha ha......
*keeps fingers crossed*
Lacey - I am so sorry you and Jaxson are going through all of this. I believe that IF the time comes for Jaxson to leave for heaven, then both he and God will make it clear. I pray that I will never have to make these decisions - that God will take it out of my hands. I will pray the same for you.
Lacey,
You're amazing! That little man is so special. Thank you so much for taking the time to update your blog so regularly. I'm so glad I found it. I try to follow it but I must have missed something. Can you give a brief recap of what the button is for (or direct me to the entry that would help explain)?
Thoughts and prayers--
Patty
That is so wonderful that you have made so many good friends.
I hope to get to meet you and Jax one day!I'm continueing to pray for Jax and your whole family.
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