Wednesday, January 27, 2010

Trach resentment!

Look at what a certain boy gets to do while I get meds and feeds ready, after keeping me up all night AGAIN!

Friends, I think I'm starting to hate the trach. I don't know if this is something every parent goes through and I'm just going through it later because I had taken care of trachs before Jax. So I knew what we were getting into. And after he got the trach, his lungs immediately looked better, and he had a few nights were he slept all night! So we thought the trach was our dream come true..

Errgghhh, wrong!!

I don't think I've gotten a great nights sleep since he was trached in October. And after last night being my third night in a row of NO sleep, my sanity string has broken!

Yesterday, after my long night with my worthless nurse, I had to go to the boys school first thing in the morning to see Carter get an award. Since Jax is doing this hacking cough thing the last 3 days I was not looking forward to taking him. I didn't sit down with the other parents, I had to suck Jax out a few times, and lets just say the suction machine is about as quiet as a Mac truck driving by! Luckily the lady walked by and put Carter first on the list so I could see him and then get the heck out of dodge with my hacking baby!

And Jax slept most of the day yesterday. He would wake up, cough his brains out for about an hour, and then go back to sleep, exhausted! It really does show how little strength he still has, it just wears him right out. So last night before bed I thought I would give the duoneb another try, just for kicks and giggles. So I gave it to him about 10, and put him in bed. He actually did not cough! And fell right to sleep. I couldn't believe that it worked, either that or the prednisone is starting to work. Then he woke up at 1am, but still didn't have the hacking cough! I was practically singing. But then he woke up at 3am with the hacking cough! I gave him another neb, but this time it did nothing. He coughed for the rest of the morning. I finally fell asleep around 6:30, and woke up late to get the boys up for school. I'm really going to try and lay down, but finding the time is hard.

Did I mention that I HATE the trach right now? And its probably a good thing you only know me through the computer, because today I'm quite the Grouch!


The VW's said...

I'm so sorry! Go ahead and be a grouch.....I'd say that you deserve a few days of being grouchy! I hope and pray that this gets better for you and Jax! Love, Hugs and Prayers!!!

Rochelle said...

You have the right to be a grouch! So sorry for the cough and no sleep for you. I get grouchy after a couple nights and you deal with this all the time. Praying for peaceful sleep for everyone and that the meds help his cough.

ANewKindOfPerfect said...

Lacey, you have ever right to be a grouch! No sleep SUCKS - I know first hand! I know I've said this before, but I wish we all lived hear each other. Could you imagine if we could help each other out on bad days? It would be awesome.

I hope his cough eases somehow. Have you talked to pulmonary, and told them it isn't getting better? Poor bub. All that couhing is wearing him out!

Alicia said...

Oh Lacey, I am so sorry I just now read your post from yesterday. Not that I would have been much help. I am going to "second" what a lot of other people have already said: forum is the best place to find answers to just about any question you may have. Chances that someone there has dealt with a similar situation as yours is very great.
~Pulmicort: Marissa is only on a small dose in the Winter months to boost her lungs but I know of several trach kids who are on a stronger dose year round and it really helps with their junky lungs and cough.
~ Xoponex: A good substitute for Albuterol for kids with heart issues. Albuterol (as I'm sure you already know, can cause increased HR)

Other than that, I don't have many answers. Marissa has always been a dream as far as her trach goes (knock on wood). She got her trach when she was 2 mo old and was able to tolerate her speaking valve when she was about 1 yo. The speaking valve really clears up secretions and reduces the coughing (once they get used to it). Before the speaking valve, she had a lot of secretions and we would have to suction her only about 3-5 times during the night, unless she was sick. The only thing I can think of is check to make sure that the length of the trach is the right size for him, although I think you mentioned that he gets custom trachs.

Sorry I'm not much help, I know this is beyond frustrating and maddening for you.

You are in my thoughts and prayers for sure.

Junior said...

Oh Lacey so sorry things are so tough right now. Feel free to grouch, you have earned the right.
Lots of hugs and prayers.

Loren Stow said...

Oh Lacey! I don't blame you for being grouchy, there is only so many sleepless nights a woman can handle!
I really do hope it gets better! I don't know how you do it!
Best of luck!!

Kristin said...

There's nothing worse than trying to function on no sleep. Hope you find a solution - fast! :)

Trina and Jophie said...

Ugh it's OK girlie. Hate it all you want. I seriously HATED Jophies for 6 months and really thought I had made a mistake but now it's a whole nother story.....Jax does seem to follow along the same path as Jophie so lets just pray he continues on to no probs at all. One thing I have noticed with Jax is how MUCH better he appears. Color, swelling, eyes are brighter, personality is showing through. He seems so much happier too. I know with me I look at Jophie 24/7 and it's so hard to see he improvements be it subtle or slap you in the face ginormous improvements. I'm forever asking my friends ... "Does he look OK?" "Can you see a difference?" "Do you think he's pale?"...They know this and try to always encourage and reinforce those things especially when they see me getting down. Lack of sleep is a norm here too and that alone can tend to fog things up a bit. I really can see improvements in Jax. LOTS....Hang in there girlie. I truly think it will get better. Keep after the docs though if that cough persists. Jax like Jophie can't express anything and I'm certain your voice for Jax is as loud as mine is for Jophie ;) My reputation does precede me at the hospital and docs office! LOL ... Just keep a heads up for the trach(Style/type) and such to make sure it's not causing problems. Hugs, Trina and Jophie

Heather said...

Wishing we were closer so I could give you a break.Hoping that as some others have said,that you,or rather Jax, is just in an adjustment period.Cuz he seriously ooks ggod.Sorry you have a worthless nurse ... you know what I say to that .. time to cut loose.

Glad his cough has let up.Prednisone is sometimes the ticket.Love to you my friend.


CFMama said...

First of all, I am so sorry that the trach is wearing you out. I know how difficult it must be to take care of everything while you are so tired and frustrated. I admire your patience and you have a right to be grouchy. Your poor baby is not feeling well and if you don't be careful, you will find yourself sick too. I wish I could come by and give you a break - you really deserve one.

Second, I love your blogs new look, I must have dropped off the face of this earth to miss this change.

Thinking of you guys. Christina.

Becky said...

I'm wondering if you went through the SAME thing we did with our trach. For 6 months, Ben had a horrible cough. We ended up putting in a 'cuffed' trach - bivona tight to shaft, sterile water filled balloon - trach. It helped SO much. Talk to me if you want to know more. Thinking about you!!! xoxo

Denise said...

You are stronger than anyone I know!!! Just think...Disneyland is right around the corner :)

My Three Sons said...

I'm so sorry that your going through all of this. I have had lots of sleepless nights but not because of trach problems.

I'm saying a prayer now that Jax can get some rest and that the trach starts doing it's magic.

Tammy said...

Oh, Sweetie, I'm so sorry. While we do have to sleep in the same room with Parker, the trach has still been the best thing for him.

And Jax looks sooo much better.

Perhaps, as time goes on, and the swelling in Jax's neck goes down the irritation will also subside.

Ah, night nurses. I feel your pain. Is this nurse trach trained and has she had trach experience?

Parker does xeopenx and pulmicort. He did Tobi once when he had a respiratory thing going on.

ds.mama said...

I am sorry to hear you and Jax are going through this. I'll pray for sleep for you both.

Colleen said...

Oh man, I totally feel for you. I have a love/hate relationship with the trach too. There are days that really stink sometimes. I like how you described the suction machine. I does sound just like a mac truck.

There is also a trach board through yahoo called trachparents. It's been very helpful for me. I hope you get some rest soon!

Alison said...

Sorry things are so rough right now! I really hope his cough improves and that you are able to get some sleep.

sturpin said...

oh Lacey - I've been thinking.
Bella's vomiting is caused a lot of the time from the coughing. She just coughs and coughs and then vomits. Her sats drop and she is exhausted afterwards.

Glad you got rid of the clueless nurse. We have had a couple that we asked the company to not send back.

I'm thinking out loud here. His air is humidified, right? Because that will irritate otherwise. The Biovanna cuffed is what we started out with. But they told me that very few patients are cuffed outside of the hospital, but Jax does break all the rules. You have checked for post nasal drip, I'm sure. And no one is sick at home. We use QVAR and Xopenex and the pulm throws us on gent if she even smells bad. We tried Robinol to lessen secretions - and that seems to have helped us a lot. We had to play with the dose, though. Not much actually made things worse, but the perfect dose is a good thing for her. Her vomiting and coughing are much better this week.

I also agree with the RT that said don't use perioxide on the stoma. I had to get an order to get the nurses to follow that one. It is too irritating.

I wish I knew what to tell you. You know you need sleep. Hugs to you and Jax

sturpin said...

Sorry - I'm clueless. I just went back and checked and saw a temperature probe on her trach collar tubing, so yes it's heated. Darn! Wish it was that simple!

stephanie said...

OH, Lacey so sorry. I'd be a lot more than a grouch by now.

I can't function at all with no sleep. I don't know how you do it night after night.
Saying a prayer right now for a better night.

Conrad, Megan and Our Precious Keaton said...

Hope things get better dear Lacey! Thinking of you all! Congrats to Carter for his award! God bless!

Tina said...

I really don't know how you do it all, juggling so many things, you have amazing strength and I am in awe of you, one bad night yesterday and I am feeling quite the grouch today. I do hope things ease up a bit and Jax settles down to better sleep and less coughing. I shall keep him in my prayers as always. Hope you get some sleep, you can't expect to keep functioning otherwise and the kids all need you!!

ABandCsMom said...

So sorry to hear you're having such a rough time with the Trach. I can't even begin to imagine what you're dealing with. I do know, that you have every right to be a grouch! Not having sleep night after night, well it just plain stinks! Praying you get this Trach thing worked out, so you get some much needed sleep. I hope the nurse gets a grip. I can't believe she woke you for a temp of 99+ Wow!

Deqlan said...

aw shame poor mama poor jax hoping things go a lot better tonight!

sara p said...

i'm so sorry to hear that:( hang in there, no sleep is tuff. i hope jaxson is doing better soon.