Still in the ICU as of 02/27

I came to Cleveland on Monday evening very late since Nick had his own quarterly doctors appointment at Children’s today. He had great numbers on everything. He blows pfts in the 111 range (probably a lot better than I would do!). Since I got in so late I did not visit Alicia until Tuesday. On Tuesday she was quite restless. She could not get comfortable since everything hurt. Her stomach hurts, she cannot speak yet, her legs are quite puffy  and she has “foot drop” in her feet. She is getting some PT for her legs and feet but the right foot in particular is impossible for her to move. She had an MRI the other day and it was negative so we feel it’s an issue of not moving much (really laying flat this entire month). To make her more uncomfotable though she has to wear stiff boots to hold her feet straight up. These are very uncomfortable and she is constantly telling me to take them off. To top off the day she had to get a pic line since they had taken out her port during surgery. The pic line nurse was amazing and got it on the first try! This was not done without Alicia going thru some pain but we were relieved she got it! I had even warned the pic nurse Alicia would be very hard to poke since her veins are tiny and they roll. Apparently pic lines are the only job that particular nurse does all day! After Alicia’s pain meds kicked in she was able to sleep all night!

On Wednesday the doctors restarted her tube feeds since they were stopped due to stomach pain. She really was restless again today. She wants to eat, drink, talk, and basically be out of all this pain. The doctors stopped her pain pump so she would not sleep all day. That really didn’t work since she slept most of the day! She was in the chair for an hour today and did ask for her kindle. She still really does not want her phone. At this point it is a little too much for her to comprehend since she is more alert and in a lot of pain. Her stomach still hurts but seemed better so the doctors felt good about starting her feeds and she indicated that she was hungry. She still has two chest tubes that continue to drain. Her stomach hurts and the boots on her feet are really bothering her. Once she has been successful in restarting the tube feeds she should be moved to the rescue area to wean her off the ventilator. She will probably go the step down unit with the trach in but she cannot go to the step down on the vent.

I did ask about child life and other services we were getting at Cincinnati Children’s. They will start some massage soon and the step down unit has music and art therapy so that is encouraging.

Thanks for reading our blog to get the most up to date information. We appreciate everyone’s interest in Alicia’s progress. Thanks for all of your kind words and well wishes. Also, thank you for making sure we have everything we need! We could not do this without all of the support we have gotten: financially and emotionally!

Thanks,

Mary Kay (mom)

9 Responses to “Still in the ICU as of 02/27”

  1. becky buescher says:

    Thank you mary Kay for the update! I think of Alicia and your family everyday. I’m sorry she is in such pain, but she is such a strong young lady. Tell her to keep up the good work moving forward and soon the pain wil be a distant memory. She has so many people praying for her!
    Glad to hear about Nicks appt. Wow! 111%? I know I couldn’t blow that. I love how Alicia said she thought he was faking cf. Lol. Too cute! Take care of yourself and tell Alicia to keep pushing forward!!

  2. Cindy Hayden says:

    Dear Lang Family,
    Thinking and praying for all of you and especially Alicia! Here’s to hoping Alicia is pain free very soon and can be weaned off the vent! If there is anything that you all need please let us know! Alicia …….your strength, perserverence and courage are amazing to all of us! Keep up the good work! With Love, The Hayden Family!

  3. Holly Acuff says:

    With everything you are going through I know everyone appreciates the updates. Those boots are common, with people who have fasciitis in their feet, to where at night. I think about Alicia and you everyday. Please take care of yourself.

  4. Thinking of all of you and especially Alicia. If I can do anything, I mean it, please let me know. Love and positive energy to you all. Shery

  5. mia hughes says:

    Thanks for all of the updates. Praying for her daily and you all. Love you guys so much!

  6. Jen Buescher says:

    Sorry to hear you are still in the ICU. And I remember that pain all too well. I know I told you about the 2,3 or 4am back rubs I made my mom give me while I was recovering. You probably have everyone telling you this, but moving will help with the pain. It’ll take some of the swelling down by moving the fluid, too. Getting home to my dogs was my motivation, maybe it could be yours too! To all of the Lang family, I’ll be up there in 2 weeks for my appt so please let me know if I can bring anything from home to you all. Much love and prayers!

  7. Cynthia Wesselkamper says:

    Hi, Mary Kay, I have been following Alicia’s blog through Ashleigh Baker. I read your post about Alicia being tender headed, like me. I have had long hair for years, so I made it my mission to find the perfect hairbrush. The ones I like are from Sally’s. They are small and inexpensive. I’m happy to send you a couple. It might help to braid Alicia’s hair to keep it contained and prevent knotting. I think of Alicia and your family daily. Sending prayers for health, peace and comfort. Cynthia Wesselkamper

  8. Janet Den Herder says:

    Keep up the good work Alicia! Thanks to mom for updating your progress as often as she can. It gives a clear picture of where you are and how far you have come. Your fight to get well is amazing. I think of you every day and miss your beautiful smile.

  9. Carol Robbins says:

    Sounds like Alicia is making great progress. It is a marathon, not a sprint for her so each day will bring more progress. I will keep your family in my prayers. Good karma coming your way.

Leave a Reply