quick post

I didn’t make it down to the hospital today as planned, but Courtney and I went back and forth with txt and it just made my day.  I’m so glad that she has the energy to txt.  Tomorrow I am taking my kids down to the hospital and we are going to attempt for her to see them.  She says she’s ready and we are going to try and convince the nurses to let them in to see her.  I told her that it will be hard for her to talk to them, but to stay calm and just let them hang with you.  The kids are so excited.  Shaffer just lost his first tooth tonight and he can’t wait to show her!  Lindsay spent a good amount of time with Court last night for the late visiting hours and she said that Courtney was in good spirits, but just really tired and slept off and on while she was there.  She said they watched SYTYCD together.  It’s just so good that Court is starting to feel and act more like herself despite all the battles she still has to overcome.   Thanks again for all your loving comments and support.  I will be reading them all to Court tomorrow.  She just loves it! 

Thank you ALL!

❤  MeGs

PS, Mom is down with her right now…so I may post some more if she calls me with more updates.

Advertisements

McDreamy

As I walked into your room today, Angie was visiting and Dr. McDreamy (as we want to call him) was in your room asking you questions.  He was asking you when was the last time you had Pneumonia and how often and so on.  He’s so attentive and pays attention to everything.  He’s a 29yr old Doctor who has been watching over you this week and I know he has to be one of the reasons your spirits are up, if you know what i mean… ;o)

Anyhoo, today was another good day.  When I walked into your room you immediately told me that you were tired but you had a good reason why…

They are trying hard to get you off of the vent and breathing on your own and started last night by dropping your vent levels to Pressure Peak 15 and 16 breaths per minute.  Which is about 20% less than yesterday.  Dr. “McDreamy” said that he wants to have you off the vent in the next few days and is going to put a device in so that you can communicate a little better with us.  I’m so proud of your determination and strength.  They didn’t get to do PT (physical therapy) today because you were so tired and sore, but I’m so proud of you.  I’m honored to say that you are my Sister!  I love you so much!  They are going to do scans on your arms just to make sure you don’t have blood clots in your arms but could be soreness from PT. 

You requested to hear more from the blog and to see what was posted.  So I read to you all the new news.  Thank you all for posting comments.! I read all of them out-loud to you and it brought you tears of joy.    I know you just enjoy hearing from your friends and family and old friends and strangers.  It’s truly amazing!  When I brought you your cell phone late this afternoon,  you were so happy to have it back in your hands that you fell asleep with it when I left.  You didn’t want to set it down!  You had over 19 VM and several txt messages. 

I apologize now if this post is all over the place and doesn’t make sense…I’m tired and overwhelmed with JOY!  OK, so I’ve had a couple of beers…anyhoo…I love you Courty with all my heart and soul. 

So CF’rs, if you want to send Court a message, she has her phone and laptop.  I don’t know how much she will be able to respond to you at this point, but she will see your messages.  She has her phone and can read txt messages.

As always, THANK YOU for your thoughts and prayers!  Keep them coming!  Our GOD is an Awesome God, he reigns from heaven above and with the power and love he will answer! 

Good Night, Megs

SHE has Hope!!!!!!

Have you ever had the feeling like you have a heavy chest, or a heavy heart and then something AWESOME happens and it feels like it goes away?  

I just had the BEST visit with Court ever since she has been in ICU.  When I arrived down at St.Paul/UTSW Hospital my heart was heavy because I was worried about how Courtney was doing today.  Was it going to be a good day or a restless, uncomfortable, anxious day?  As I walked up to the 7th floor and entered the ICU, Courtney’s daytime nurse Carmen greeted me with a “Hey, I need to talk to you before you go see Court”.   She pulled me aside and said, “We have a new Court today”.   As she proceeds to tell me that although Courtney had a rough morning of sadness and loneliness, she was extremely strong today.  Courtney actually had the chance to walk a little around her room, sat in a “normal” chair today (not the cardiac chair) and got to use the restroom on the portable toilet next to her bed.  She sat in the chair in her room for an hour 1/2.  Courtney told her nurse (via lip reading) that she wants her phone to txt her friends, she wants her laptop and a stuffed animal to hug.  Sister Kelly arrives just as her nurse catches me up on the day with Court and we stood at her bedside and talked.  Now the time is 5:45pm and visiting hours end at 6pm and Courtney begins to wake.  Her nurse felt so bad that visiting hours were about to end so she let us stay if we promised to stay behind the closed door to her room because Court had missed us so much all day.  As Courty starts to wake, she looked at Kelly and I and smiled.  She proceeds to tell us that because of other CF’rs she knows like Trisha and Patti and others who have had double lung transplants that she can make it through this.  She was showing us that she wants to fight this!!!!  Can you believe it????  She was showing us her hope and determination.  Today was the strongest, hopeful and happy I’ve seen her since this ever started.   I just wanted to hug her so hard.  If it werent’ for the trach around her throat, and IV tubes all over her I would have!   She wanted to hear more comments from the blog, so Kelly and I sat there reading to her comments after comments from all of you who have shown your support and she LOVED, AND I MEAN LOVED every minute of it.  We sat there for another hour just reading it to her and talking about all of you who have been praying for her.  There were tears from her, but I know they are tears of thankfulness.  She misses her Cysters and CF’r brothers so much.  She told us tonight that she misses you all.  She said she misses Alyssa and Tate, the kids she nanny’s for sometimes.  She told us she misses her nieces and nephews!  She misses her life and this is why she’s fighting it tonight as I type.  As we sat there talking, I could tell Courtney was getting tired.  She started to get the heavy eyes and I knew it was time for us to go.  She was comforted with the comments we read and a little company.  

Thank you Lord for your strength and answering prayers!  Thank you friends and family and even you strangers for your thoughts and prayers!  Thank you Courtney for keeping the faith and showing us you want to fight this!

So on my 45 min drive home tonight I realized I could breathe better.  I felt this extreme weight that I’ve had on my chest come off, literally.  I knew that Courtney is going to make it through this because I saw it in her eyes and I read it on her lips.  

Courty, Cheers!   This deep breath is for you!

XOXO,  Big Sis’ Meg

Good day

Courtney is having a good day today!  When I got to the hospital around 5:15pm today she was sleeping so I had some time to talk to the nurse.  She said Courtney had a really good day today – no fighting, no pulling at the tubes, no trying to get out of bed, she was a good patient today.  The nurse even said that she didn’t have the restraints on Court at all today!  So that was very good to hear. 

The vent is still our biggest hurdle right now.  I can’t remember if this was mentioned in an earlier post or not, but Courtney is back up to 22 breaths per minute, and that has been the case for the past several days (I think since Friday night or Saturday).  One of the doctors yesterday told me that the vent is pretty much doing all the work for her.  We are STILL waiting to hear from Courts CF doctor, Rosenblatt, to see what his thoughts are.  (He was on vacation last week, but should be back now – yes, he did just get back from a week long conference for those who may be wondering.)  I realize doctors are people too, who need vacations, but this is just a little frustrating for me.  :-}

Anyway, Courtney did wake up just as visiting hours were over, but her nurse let me stay for another 30 minutes so I could spend some time with her.  She was in a good mood and never cried, so that made me happy.  She apparently had been coughing a lot this morning, so she had a headache, but she didn’t mention anything else was bothering her.  (The RT said Court was getting “muca-mist” during her treatments, so that’s probably why she was coughing so much.  For those who don’t know what muca-mist is, it basically breaks up all the mucus in her lungs so it’s a little easier for her to cough it up.  The RT said the mucus must have been too loose, which was causing Court to cough more than usual, so she cut back on giving it to her.)  Another thing that has made me very happy is that for some reason we can kind of hear Courtney when she’s talking now.  I don’t know why this has changed, but I don’t really care why.  I’m just so excited to hear her voice!  …even if she does sound a little like a robot.  🙂

Keep the prayers coming!  I love you Courtney!!

Love, Kelly

Relaxed and Smiling

Sorry guys for not updating the blog at all this weekend. My mom was out of town so my sisters and I all split up the shifts at the hospital Saturday and Sunday.  Courtney is acting more herself this weekend. It was so nice to see that right when I walked in the door she had a great big smile on her face and if I said anything she just would look at me and smile. I asked if she was feeling better and she said no but better than other days. I asked if she had been having some good dreams because she just kept smiling and she said yes!  It was such a nice thing to experience because she has had such a rough month. She rested a lot this weekend and seemed pretty relaxed. On Sunday I talked to Dr. Galowski and he said that he is going to try and put her on a different pain medicine than the Fentanyl because they can’t seem to get a happy medium with her and the meds to make her comfortable its either too much for her or her body is craving more. They are going to try a longer lasting pain med so she will have it less often but last longer. They are also going to try and give her some of the meds through a patch or even pill rather then  through IV so she can be more mobile. They are going to start doing physical therapy with her on Monday so she can get out of that BED and move around a little bit. He mentioned something about putting something in so that she can be verbal and talk to us too. I think that if they can get her moving around and vocal then she will definitely be less anxious and be a LOT for comfortable. So mentally she was a lot better on the other hand her health hasn’t really improved. They increased the numbers on the vent and one of the doctors told Kelly that the respirator is still doing most of the work and even when she does take breaths on her own the vent still helps out with those. He said that it will be a while before she is strong enough to breathe on her own. But the pneumonia is all cleared up and they are just treating a UTI that she has but she is off the antibiotics and her kidneys are still working great.  Their main focus is eliminating IV medications and getting her comfortable and mobile. I think I covered everything if not my other sisters will fill in.

Courty your doing great and staying strong. We love you very much can’t wait till your up and walking around!

Love you!! Lindsay

Yep, Lindsay covered the bases well.  The only other thing is that Court is Jaundice because of her bad liver.  Lindsay and I washed her hair which made her really happy.  We brushed it out really well and after Lindsay left I braided it above her head.  The Dr’s also mentioned that they put Court on some anti-depressent meds which has helped with her anxiety and stress.  I could tell she was a lot more relaxed and resting more.  Sorry I haven’t posted much.  After me being out of town most of last week, I’ve had a lot to catch up with.  I will jump back on the blog wagon.

Love you Courty!  It was sooooo good to see you smile and relaxed.  Keep resting good and I’m happy you will be able to get up and out of the bed a little more with the physical therapy.  Stay Strong! 

Love, Meg

One down…

Hello everyone.  Thank you all so much for keeping up with Courtney through the blog.  I know Courtney really appreciates all the support from her friends and family, and it means a lot to us sisters and our mom as well.  A special thanks to all of Courtney’s CF family who have shared their experiences with us and have clued us in along the way.  We try so hard to feel and understand what Courtney is going through, but we will never really know how she feels the way you do.

Courtney is having another tough night at the hospital.  She is swelling again and she’s running a fever today of 100.9.  Not to bad, but knowing from past experience, it will probably go up before it comes down.  The nurse said they took some cultures to see if there is an infection, but the results hadn’t come back yet.  If she does have an infection, they will start her on antibiotics again.  Court was sleeping when I arrived, but she woke up after the nurse swiped the thermometer across her forehead to take her temperature. She was agitated at the nurse and started to cry as soon as she woke up.  I talked to her for a little while and she was able to fall back asleep.  My mom is going up there during tonight’s visiting hours to keep her company.

On a good note, the nurse said they are going to remove Courtney’s Perm Cath tomorrow becuase she no longer requires dialysis.  I think this will make Courtney happy, becuase this particular line has been annoying her for some reason.  One down…  As for the vent, it is set at 11 breaths per minute and Courtney is taking about 34-39 breaths per minute, so she’s doing pretty good there too. 

Just to clarify the medications she’s on, the nurse told me her sedation med, Versed, hasn’t changed in quite some time and it is currently set at 11 mg/h.  They have been lowering the pain med, Fentanyl, over time and it is currently set at 8 mg/h.

I want to thank everyone again for your constant thoughts and prayers for Courtney.  Please keep them coming! 

I love you, Courty!  Stay strong and keep your hope alive.

Love, Kelly

Clarify

Hey Friends and Family,  I have missed you all and have had a rough couple of days not having the chance to see Court and write to you all.  I have been and still are in Phoenix, AZ for business training.  It has been intense training with little to no breaks and when I was on a break I was checking my work email or calling my Hubby for a sec, my Mom for a sec & Sisters for a sec for check ups.  I’m just now having a chance to read the blog since Saturday on my last post.  I left for Phoenix on Sunday around noon.  Let me clarify my unwanted addict post…they were and have been weaning Court and didn’t completely stop.  It was just that her body was so used to getting so much meds and when they started weaning it was a shock for her.  She was so used to getting so much more.  Just like and Alchoholic…used to drinking a twelve pack every night, but can only have a few.  Your body would want more and feel like it needs it.  Anyway, I get home tomorrow afternoon.  I will be finishing the day at work, but I’m hoping to spend  half of the day on Friday with Courty.  (Especially since I had to spend half of MY Sunday on work time)

I MISS HER SO MUCH!  I can’t wait to be back with my family, my wonderful hubby and adorable kiddos.  This has probably been the toughest away trip of my life.   

Courty, See you soon!          Love, Meg

Previous Older Entries