Couple of Pictures

This was pre-transplant before she went into surgery:

This was her first time sitting in the chair after surgery!

Morning of Day 3

We found Emily this morning still struggling with her pain but a visit from the NP and the doctor, brought a new strategy. They are adjusting how often Emily receives her main pain drug from every six to every four hours and switching to a new in between pain drug that has worked for Emily before. With her many previous lung collapses and constant medical and physical battles, she is no stranger to pain or pain meds and knows quite well what she needs. I think she was heard well this morning and are hopeful that this change will work. If not, the next option is an epidural.

The doctor also said her xray looks good. She has received a blood transfusion this morning as well as her blood counts are a little down after surgery. This is usual after surgery and should help her feel a lot better this afternoon.

She did get moments of sleep last night in between the usual interruptions. Thank you so much for those who prayed last night. It truly helps. Sleep, pain control, and no infection or rejection of the lungs are some great things to continue to pray for at this point.

She sat for another hour in the chair this morning and was about to try to walk for the first time when they came in to do the transfusion. So, she will rest awhile, and then try this afternoon.

I forgot to mention last night that she was able to briefly meet Clay, a 25 year old male with CF who had a double lung transplant 2 weeks ago. He was up walking around on his own and had lots of encouragement for Emily. He said he had a few rough days at first but it was great now and they will probably get to spend some time together in clinic/rehab. Also, Emily knows so many of the patients and nurses here because of her previous dry runs and calls. She has many people rooting for her!

Jason will be here soon to bring Faith! Emily is very anxious to see her sweet girl. He will be moving everyone and everything into the town house. And it is the Presidential Suite, not the Pent House. :-) Stephanie and I were able to stay there last night and even though it was probably built in the 70s it feels more like a home than a hotel. It has 2 full bedrooms, 2 full baths, a fairly large living/dining room and a complete kitchen. It will make life so much easier for them.

Evening Update

Emily spent about an hour sitting up in the chair in her room from 6-7 PM. The faster she can move around, walk, and get her breathing capacity up, she can be moved down the hall to step-down unit and then be released for her rehab. She should be in the actual hospital for 10-14 days and then be in rehab for another 6 weeks.

While she was sitting up, she had a liquid meal of chicken broth and cherry jello and even took pictures. The doctor came by and said everything looks perfect and that she is a few hours ahead of schedule as far as her recovery goes. She continues to have great color in her face and is able to talk and communicate fairly well. There is a chance that she might get rid of some of her tubes tomorrow.

There have been a few frustrations along the way too. It is very difficult when you are told one thing by one person only to be told something completely differently by someone else. When your expectations and hopes are not met and you don't feel good, that can be discouraging. One of the biggest discouragements was that Em was told that someone would be able to stay with her in the Transplant ICU overnight and then was not allowed to. I can only imagine how difficult it is to answer questions from so many patients and get it "right" all the time but I know how information is power and giving Emily a goal or something to look forward to is helpful. She was also in a lot of pain tonight and had to wait a couple of hours before she could have anymore pain medicine. We hope that she is able to sleep tonight.

Emily's Dad, Tim arrived in time for her last visitation as well. Jason and the boys went back home to pack everything that they will need for the next 8 weeks or so. The townhouse is ready for them to occupy and will be there landing place for the duration of their stay for Jason and family while they are taking care of Emily in the hospital, and for Emily once she is released for rehab.

The goal for tomorrow is to get her up and walking!

Prayer Request

Please pray right now for Emily to SLEEP! She really needs her rest tonight as this is going into her third night of basically no sleep. Also, she is currently trying to wait for her next round of pain meds and is really anxious to get them to take the edge off. Thanks! A longer update will follow soon. ~Emily T

The Princess Chair

Emily is currently sitting up in a chair eating some of her liquid diet...at exactly 24 hours post transplant! More to follow and possibly even some pictures!

A Post from Ryan (Emily's Brother)

Its amazing that I'm just here visiting Emily for a short time but that she was called during my visit. Its just incredible to be able to be here and do what i can to help out. I'm so grateful to be here with Emily through this experience.

Transplant ICU

I made it to the hospital in just enough time to see Emily get settled into her new room. She was in some sort of post-op ICU last night and was moved to the Transplant ICU (a step up or a step down depending on how you look at it) ...which is a definite positive move. She is very alert and aware and is able to talk! She took her first breath of her new lungs around 2 AM this morning when the took out her vent and her feeding tube (I think that's what she said) all at the same time. Ouch. Our visit was brief because of the end of those visiting hours and so that she could get some rest so I didn't get a chance to ask her how it felt to breathe with her new lungs.

Her new room is quite large and has a sliding door that closes. She will hopefully be able to sleep better because of that. The other ICU was completely open with no privacy so sleep was basically impossible. She has 4 chest tubes and her nurse was installing a lidocaine pouch that automatically sends pain med to the actual incision area to take the edge off. Jason & Eric were just leaving the room and her mother Stephanie and brother Ryan and I were able to go back. Her dad gets in later today.

She has a little table fan to help keep her cool (transplant patients seem to get hot easily) and is sipping on water and ice chips. Her main concern while I was in there was that her mouth was dry and chapped so chapstick and a wet cloth were in order. She said it doesn't really hurt to swallow but that it gets kind of caught in her throat.

Before Emily was moved, she had a bronchoscopy to check her lungs. The scope found very little fluid in the lungs which is great. Stephanie commented on how amazing it is that everything is falling into place. Also, she said that the doctor mentioned that these were the best lungs post surgery that he may have ever seen! How incredible!

Another huge answer to prayer also took place this morning. Once Emily is out of ICU and the normal hospital care, she has to stay at UAB in order to complete her rehab. I believe the estimate is 8 weeks from the time of surgery until she is officially released to go home. But, the medical town homes that they are supposed to live in for the last of those weeks is very difficult to get. However, Jason went to check on them this morning and they were able to get the last one and not only that....it is the pent house two bedroom suite! How cool is that?!?! This is such a relief and encouragement and will be so helpful with Faith too.

That's the latest. The reception in the hospital is good so I will hopefully be able to provide more updates than I was expecting. I told Emily about your comments and she wanted me to read them to her but we decided it would be best after she had a chance to rest. But, I can pull up the blog in her room, so keep commenting!

Moving!

Emily did so well last night and this morning that she is being moved to the transplant floor right now!

Dear Emily,

Today is hopefully the day that you will get to take your first breath with new lungs! Oh what a wonderful joy. We are so excited, humbled, grateful, and blessed by your life. Know that we are praying for you and love you!

[Messages for Emily & Jason have been printed as of right now...at 26 messages. Please continue to write comments for them though so they can read them during the recovery process!]

9:15 PM Update

Emily is doing awesome! The nurse says she has minimal bleeding and that she is doing really well. They may try to excabate her tonight so by morning she should be off the vent. Jason says she is looking great and that the color in her face looks good and her once blueish finger nails now look more like the normal pink that most of us are used to. He is VERY encouraged and believes she is doing wonderfully. She's very alert and aware. As she tried to communicate to Jason (she cannot talk on the vent), she was holding a clipboard in one hand and writing with the other hand and although it was a bit slow and not very neat, it was quite an accomplish for just coming out of a lung transplant surgery! Jason & Emily's friend Eric went in with him and Emily wrote, pointed, and motioned until Jason finally understood she was referring to a past card game called Wizard that they had all played. Although it was not specifically clear what she was saying, they finally figured out she was joking about something and she ended up rolling her eyes at Jason...something she does very well. Sorry Em! :-) It seems like her personality and spirit are shining through despite everything she has been through today.

Jason's parents have been able to see her today and Emily's mom arrives tonight and will be able to see her in the morning. This is possibly the last post until I am able to get to the hospital tomorrow and then find a way to update the blog. In the meantime, please be sure to post comments on the previous post so I can print them off and give them to her tomorrow. Thanks for your continued prayers! ~Emily T