Today is my venting day, so if you want you can skip this and just see the cute picture of Jax and daddy sleeping away, like boys do so well in any place.
My gripe, well its the only gripe I've had in the last 6 months. The stupid trach!
I hate it, I hate it with a passion. Has it helped Jaxson's health? Yes, tremendously, and for that I'm very grateful. But indeed it has taken over our lives.
I stewed about whether or not to trach Jax, and all the doctors that I trusted told me it was necessary. But all of my fears that I had about the trach are coming true. It is much harder to include Jax in family things like we've always done. Do you know how hard it is to take him to a movie? The suction machine is so loud that it just echos in the theatre. And sleep, well you might as well just kiss that one goodbye. Especially now that I have no nursing care, even though I know people that have much easier children and get nursing care! I have to drug my baby at night to sleep, and even that doesn't always work. Like this morning, I've been up since 5:00 because thats what time Jax thinks he needs to wake up even after having trazadone last night! I used to be able to turn his mobile back on and he would just hang out in bed. Now I have to sit in the chair next to his bed so I can suction him every couple of minutes! You go to the grocery store, suction! Your driving down the street, you have to pull over and what, suction. Suction, suction, suction!
Thats what our lives have become. Just ask Mondo, he is our suctioner if we are all in the car together. He sits in what we call the suck seat, the seat next to Jax!
I hate it!!
Aww, I feel better now that I got that out of my system. Now I'm off to have a huge cup of coffee because its going to be a long day!
oh Lacey!! i don't have a clue about trach's. Does everyone have to suction so much?
ReplyDeleteHope you feel a little bit better after your vent. And coffee.
Here's a hug and a prayer!!
I'm sorry for your frustration, but you had me seriously laughing out loud talking about the "suck seat"
ReplyDeleteSo sorry Lacey....you definitely deserve a gripe fest! I would be going nuts! You are one amazing Momma!
ReplyDeletePraying you get some much needed sleep and that the trach thing starts getting better soon!
CUTE, CUTE pictures of your guys sleeping together! LOVE and HUGS!!!
Lacey, I am so sorry .... I wish I could share our nursing hours with you! The state of Utah is f'ed up. Do you guys have Regional Center, have you talked to them? Do you qualify for some respite hours at least?
ReplyDeleteI'm sorry about the trach and suctioning. At Disneyland it was obvious how time consuming that is. You definately need some help. :( I wish you lived here, I would sit in the "suck seat" and help you out!
Hope it is a big cup of coffee with whip cream on top.
ReplyDeleteSorry about the struggles with the trach. I am laughing too at the "suck seat" comment too funny. Thankful for your sweet boys who step up and help instead of run the other way.
hugs to you especially today!
Jax is just getting you ready for Makayla to come home you know babies don't sleep :)
I wish I had some powerful words that could make Jax healthy and not need that stupid trach! I wish I had words that could make you feel like the uber strong woman that you really are! But, it's just me and my simple words, but here is my attempt...You are an amazing woman and mother and Jax loves you with all his heart and soul. We all have our good days and bad days and for you to go 6 months without a gripe is beyond impressive seeing as your life is definitely more complicated than mine and many other mom's out there.
ReplyDeleteI'm hoping you already have a huge cup of jo and are enjoying it without having to suction! :-)
Go ahead and vent. Its healthy to vent. I'm sorry that you are having so many troubles with the trach. I wish you had nursing. I know things are different between Jax and Maggie but seriously for the first year that she had the trach I wouldn't go anywhere unless I was sitting next to her is our "suck seat" and someone else was driving. I finally got up the courage just this fall/winter to drive by myself. Hailey is only five so she isn't allowed to suction just yet even though she wants to but she sits next to Maggie and tells me how things are looking. I totally understand your frustration with having to pull over to suction her. Its so frustrating. Especially if we are in a hurry. I don't think I suction as much as you anymore because Maggie has learned to cough a lot out but there is still a bit of the suctioning. I so wish that they would give you nursing. I can't believe the system here. Its still hard but much easier if you have some rest. I guess I'm just letting you know that I know that the trach is frustrating and have experienced changing my life for the trach. So I just want you to know that I'm here if you want to talk and I'm glad that you vent about it. Other people that aren't around it all the time don't realize how much time it consumes. I'm thinking about you and I hope things get better!!
ReplyDeleteThis is Joyce. As weird as this sounds, I went through withdrawal after loosing the suction machine. After seven years we were joined at the hip:) I made all kinds of cute bags to haul it around and then they become worthless. Vent all you want Lacey. I hear ya loud and clear. Oh here's a another little tid bit, I used to threaten people who complained about the noise, that I was going to dump the collection container in their lunch. If it makes you feel any better, we never had a nurse.
ReplyDeleteWe all keep reading because we all have those days where we need to vent. Sometimes it helps just enough to get it out and purge it as I like to call it. I'm a purger...
ReplyDeleteLove the cute pictures at the end!
HUGS Lacey!
Love the suck seat bit! You crack me up. Gripe away girl! You have been through so much a little pissy party is indeed in order! I cannot believe you still do not hav enursing! That is so frusturating! That kind of stuff makes me so mad! I have the same dilemma with respit care. Why does a family who no longer has a child with "special needs" still getting it? the system is wacked! Ok, thanks for letting me chime in on the griping thing! Hope today brings joy... Looks like things are going good over on Macs blog!!!
ReplyDelete*Jonah takes Trazadone as well, and I have found that if I give him 1/2 at night and the other half when he wakes up (around 2am) he will sleep till about 7am*
that sounds so frustrating Lacey! I don't understand why the ones that really need the help can't get it but, the ones with less of a need often times do. And why does Utah spend so much money on making our roads look pretty I see that down here anyway who cares if our free ways have pictures carved onto the bridges. what a waist of money. They need to use that money to help families and our schools. sorry, I am just really bugged by that. I hope your day goes better and you get some sleep. I put my blog back up so if you get a chance come visit us.
ReplyDeleteLacey,
ReplyDeleteI'm so sorry you are having to deal with that. We are in the same boat with no sleep. We have are up all night long venting, suctioning his nose, and rocking him to calm him down. It hasn't been any fun and I'm really getting crabby quick. I don't know about the trach but I know about the sleep. Oh how we need our sleep especially if we need to make it through another day. Our thoughts are with you!!
Vent away Lacey - that sounds like a real pain. I can't believe you don't get nursing care!?
ReplyDeleteIf its any consolation Ashlea woke up at 3:30 this morning...and stayed awake. I'm having some caffeine right now with you!!
The "Suck Seat" sounds like a great place to ride in the car - that is a funny name for a seat! Sorry about all the suctioning going on around there.
ReplyDeleteOur neighbors have a boy with a trach and I was asking them if he had nursing care - they do every night and it is through medicaid. It is Thomas.......something something waiver - have you heard of that one? If you haven't maybe I should go back over and ask them what it is so I can pass along the information. They said their nurse comes every night at 10 and leaves at 8 in the morning. I think that would benefit you greatly - we will just have to figure out how to get that available to you!! Let me know if you want me to go get more information from them!
I'm so sorry for your frustration. I wish I had magical words of wisdom. Sending big hugs.
ReplyDeleteI also want to tell you that Phenny's Mickey blanket goes everywhere with him. They even laid it under neath him for his CT scans and other tests. Thank you so much!
all i can say is that sounds like it really sucks... not trying to be funny, that stinks that you can't do the things you did before, but i am so happy to hear that it is helping his health. i do hope that coffee helped. i do believe talking/typing about the things that are getting to us really does help in a strange way.... so gripe way:)
ReplyDeleteLacey I'm so sorry! I feel so bad since Addy does have nursing care. She does only have it while I'm working but she does have it. She quailifies for Medicaid due to being a special needs adoption, however, she would have it regardless since MO has the Katie Beckett waiver. I wish so much I could send her care to Jax, YOU need it so much more than I do.
ReplyDeleteLacey - I am so sorry. I wish I could fix Utah.
ReplyDeleteI loved the suck seat!
It really is incredible that you don't qualify for ANY kind of care. How could that be??? I hope you get some much deserved rest soon.
ReplyDeleteI don't know how you do it. I'm so sorry it has become such a nuisance. Hopefully at some point it will ease up. It's not easy functioning when you get little sleep at night either so gripe away sister. Sometimes we need that outlet. For me venting can be like therapy for me. So hopefully it has helped you a bit. Hang in there!
ReplyDeleteI am sooo sorry for how you are feeling. I REALLY know what you are going thru even though Christopher isn't trached. We have a suck seat in the van too! I have slept in a recliner in Christopher's room for the past 6 years. Wish we lived closer, we could tag team.
ReplyDeleteHugs to you.
Steph & Christopher
Oh Lacey sending you loads of hugs, that's all I can do since I know nothing about the trach, but it does sound frustrating...I admire you so much for all your patience.
ReplyDeleteYes go get that coffee, it may not help in the larger picture but it feels so good for the moment, and we are all here to listen to the venting, any time any day.
So great that you get to go to California soon and see Ella.
Oh....I forget to mention the cute cute pictures of the two boys passed out..father-son bonding I guess!!
ReplyDeleteI can't imagine not having a nurse for mr. man...I would be beyond exhausted. Is he able to cough the stuff out? The trach got easier as the Isaac got bigger and was able to cough his junk out instead of having to suction as much. I really hope you can get some rest tonight:)
ReplyDeleteLacey, you have EVERY right in the world to gripe! I hope that you feel better and I wish you could get some help! The insurance / nursing care system in our country SUCKS! Don't get me started. I'm sending some positive mojo your way and hope you're feeling better! Hugs to you and Jax!
ReplyDeleteThere is nothing like a good vent to help make you feel better and I don't mind listening at all!! I too really wish I were closer - it's the only thing I don't like about the "cyber world". Prayers and hugs to you and Jax! - Maureen
ReplyDeleteI can totally and completely relate to your frustrations about the trach and suctioning. I can only pray that Jax can learn how to use the PMV or a cap someday. Using these virtually eliminates the need for suctioning. For Marissa's first year, she could not tolerate the PMV and driving to a doc appt alone with her was a nightmare!
ReplyDeleteI am sorry you are dealing with this, friend. The trach truly is a double edged sword.
Keep griping, we are all here for you!