Tuesday, September 29, 2009

We're home, but frustrated

We're home, but we left on a bad note, like we always do. We never had a care conference. They couldn't get everyone together. ENT was in surgery all day. We talked to people seperately, and ENT was supposed to come down after his day. Of course he never showed up.
They talked to his resident, who said the Dr. had left, and that he would come up. Well I didn't want to talk to him, he means nothing to me. So I went in the bathroom to pick up my stuff because I knew we would be going home, and the resident walked in and yelled HELLO. And then came over and knocked on the bathroom door! Can you believe that? What if I was on the toilet? He was going to sit there and pound on the door the whole time?
You know we've been wanting to move to California since we first got married. He's from there and has never felt at home here, and I've lived here my whole life and ready for a change of scenery and no snow. But now its become moving to get our child some decent health care. Our childrens hospital was number 1 in 1996, and in the last few years its fallen off the charts. We are not even in the top 25 anymore. That tells you something.
Anyway, I called my pediatrician and she said just to go home, and we would talk to ENT by phone. I believe we are going to go ahead with the trach. Everyone is in agreement that thats what he needs. I talked to his pulmo doc yesterday and she agreed. She said she hates trachs but there is no other option. Even if we could take his tonsils and adnoids out it wouldn't help the airway and the tongue problem. The trach lady came down and talked to us and eased all of my fears. She reminded me that he will always have an upper airway. He's not one of those kids that their face was totally smashed and the trach is their only airway. If his trach was to come out he could still breath so it wouldn't be an emergency. He can also still swim, you just cap off the trach. Plus she said it wouldn't be much more work than he already is. You pack up your g-tube stuff, your oxygen stuff, and now your trach stuff. Simply as that. The only thing that breaks my heart is losing his voice. I know I will get used to it and as time goes on he will learn to make noise around it, but I know I'm going to totally break down the first time he cries and I hear nothing.
So today will just be waiting for ENT to call, and find out when the surgery will take place. Here's some pics from our stay.

Just out of the cath lab.



That night extubated to bi pap.


The next morning off bi pap waiting to go back up to the floor.

Back to the floor, trying his hardest to get his hand out of that blankie to get at his face.


26 comments:

Tammy said...

and......uh.......who else told ya that Jax would always have an upper airway? Don't ya LOVE Chris? I do!

ABandCsMom said...

Such a sweet little guy. Precious pictures. We continue to pray for you. All of you.

Denise said...

Well...the good news is that you are home!!! I am so sorry that you continue to get frustration from your docs. You just about broke my heart when you said that he won't make any sound when he cries. All along, I just thought it meant he wouldn't be able to coo...never thought about crying too. But still...it has to be about what is best for Jax. Hang in there, somehow the answers will come. I am thinking about you constantly.

Michelle said...

Well, I've been reading your blog for a long time, quietly lurking, commenting here and there. I am a trach kid Momma, and yesterday or when I read yesterday you were looking for advice. I'm sorry I didn't leave a comment, but I just wasn't sure what to say. In our case, I really didn't even ask questions, Lillian couldn't breathe and they said the only way was a trach, I just said yes. Having no idea what life would be like...to live she had to have it. I just jumped in. It has not been an easy road....Lillian happens to be in that group of trach kids that gets sick very easily. Now, we are looking at possibe decannulation by October, she is almost 3. It is so wild for me to think she has actually had this thing for almost 3 years. I think his voice will come on pretty quick, since he is a bit older than she was when she got hers. When she did start making noise, I couldn't decide what was more difficult...crying with or without sound, lol. Anyway, I don't know if you read Lillian's or my personal blog (or have time to..lol) but if you have time maybe you can get a glimpse of what our time has been like. I don't know, I don't know if anything I said is helpful, but I just felt lead to leave you a comment. Please know for sure that I pray for your family and know God will have his hand upon you all. oh yes, and our children's hospital turned out badly for us and we transitioned to another one in another state...it has been a very positive move for us. I know it's more complicated in that respect for you being a total move, but it has been a good decision for us.

Phoenix's Mom said...

I'm so sorry your not getting the treatment he deserves. Give him big hugs from us. Hang in there.

Kristin said...

Oh Lacey, I don't even know what to say. Prayers and hugs.

Kristen's mom said...

Last December Kristen needed a procedure by the ENT at Primary. The resident came in to do what should have been a simple 15 minute procedure. Over an hour later I found Kristen is such a bad state that I seriously thought we were going to lose her that night. It was one of the worst nights of my life. So after that...NO MORE ENT residents doing procedures on Kristen! I can honestly say that the Hemoc/Oncology Doctors have been amazing. I love all of them that have seen Kristen. They are truly amazing and on her side. I am sorry that you have been so fustsrated. I have 3 blankets to get to you. I still have your cell I will call and get your address in the next day or two and drop them by and maybe even some dinner.

Baylee and Blair's page said...

Well, I think if you have to move or take them out of state to get better healthcare then JUST DO IT! At least you won't have any regrets later in life.

We are looking to stop using our Cardiologist in Little Rock and do our local stuff out of St. Louis. Little Rock doesn't seem to have their $hit together and I'm just not gonna take it anymore. I don't have to!

Also, wouldn't the drop in altitude help his Pulmonary Hypertension? I know our Card in Boston doesn't want us traveling >1200 feet... we live at 900 feet! YIKES!

Hugs - Tiff

PS - Keep us posted... it's good that you are home!

stephanie said...

I'm glad you're home, wish you had escaped without the bs, but that seems to be par for the course. Love the last pic of Jax. Always praying for your peace of mind. Kisses to the sweetest little man.

Simply, Sarah said...

I'm glad you're home. And no, I don't think the bathroom is the greatest place for healthcare conferences.

Thank you so much for sharing your experiences on here. It really helps me to know what to be thankful for, and what things mean if/when they are brought up in medical situations with our baby.

Shari said...

Hi Lacey: it sounds like things are super frustrating. I am praying you can get to CA quickly somehow. I am not done blogging. My new web address is www.thebeautyoflife5.blogspot.com.

The VW's said...

I'm sorry that you had to leave feeling frustruated, but I bet it's good to be home! Sometimes doctors have no consideration for families! They really need to be in our place, at least once, to understand the emotions that a family in continuous crisis goes through!

Some doctors are just naturally good at it, but others just don't seem to care! FRUSTRUATING!!! On the other hand, I'm sure that their job is extremely difficult and everyone has bad days, but they really need to keep their attitudes in check when they are in the presence of families!

I'll be praying that everything goes smoothly with the doctors and the trach! Hang in there!

How do they think the surgery went? Is there any change at all since he had the surgery?

Love, Hugs and Prayers!!!

Stephanie said...

I'm so sorry that the folks at your hospital are such idiots.
Harsh, yes, but it is what it is.

I really hope you can get to a place where the docs recognize Jax for the special boy he is.

Until then.. that "wipe me booty" shirt made me laugh so hard I just about wet my pants!!!

Alison said...

I'm glad you're home, although sorry to hear things ended on a frustrating note. I can only imagine how sad it must feel to think about Jaxson losing his voice. I would find that really hard too. Big hugs.

Cammie Heflin said...

He looks really good Lacey, I'm so sorry things didn't go well with the meeting, that is so frustrating!

Emily said...

Oh Lacey... I wish I had some encouraging words. I will continue to send prayers your way. (((hugs)))

MichelleH said...

Lacey, I can't even begin to imagine your frustration! But on an extremely positive note, Jax is home just days following a procedure!!!! Yay!

Praying for peace as you explore your options and opportunities.

Love,
Michelle

sturpin said...

I am so sorry they are so clueless. I've been wondering about your conference all day - sorry it never happened - so frustrating!

Watching and praying and loving from a far, Shelly

Kim Rees said...

Continue to pray. You are on my mind.

Tina said...

God how frustratng and infuriating I'm so sorry to hear that things turned out the way they did. Sometimes one wonders if doctor's even care, or feel for what parents are going through, if they did they would be more a little more humane.
I continue to pray for Jax and ask God to give you the strength to get you through this. It seems like everything is indicating that you move and perhaps all your answers will come with it.
Adore the last picture of Jax!!

The Lehnick Family said...

I know you must be exhausted and your mind is weighing heavy...I am glad you are home...I will be sending lots of prayers your way still...

Conrad, Megan and Our Precious Keaton said...

Thanks for your sweet comment, so happy you got my moms message! Lace - I continue to lift you all up in prayer! Sometimes we humans dont need to voice things, we can connect much stronger by just looking into each other eyes or holding each others hands.... Happy your home and I realy hope that your dream is achieved soon to move to California! God bless you all! Megs and Keaton

Deqlan said...

HI LACEY I AGREE WITH MEGS. PRAYERS CONTINUE FOR YOU AND YOUR GUYS, ESPECIALLY JAXSON, LOVE AND PRAYERS SAMM MARK DEQLAN LOGAN

Melissa said...

Oh Hunny, I'm so sorry...it'll be ok! I can't fathom the thought of being in your shoes...You're AMAZING!!! Keep on being you & being strong for Jax!
Praying here in CT~
Love you guys!
xoxo

jjpsmommy07 said...

Wow Lacey, I didn't know you would not be able to hear Jax cry. I have not been around a child with a trach. I knew an adult with one many yrs. ago. It would kill me too not to be able to hear my baby cry. Many hugs to all of you and we will continue to keep Jax in our prayers.

Do the tshirts come in little guy sizes too?(for Jonathon) can email me at jjpsmommy07@gmail.com

Michelle said...

I would be so frustrated too! I'm so sorry ENT never showed for the appt! ugh!