Amber is out of ICU!!!

www.amberjoygiles.blogspot.com

Amber has been transferred from the ICU to Rehabilitation! This is such a huge step for her. The doctors felt she was doing so well with the recovery process, that she could skip the in-between step of acute long-term care, and go straight to rehab. What a blessing!

Watching Amber's progress is truly amazing and humbling at the same time. Though she tires very easily, her mind is quick and she’s definitely "all there." We are so grateful to Heavenly Father, that her mind has been protected through all of this. She is doing remarkably well both physically and emotionally, considering all she has been through over the last six weeks. Admittedly, this is incredibly hard for her, but it is clear that she is strong and will do what she needs to do to get through this. "I'm alive," she said gratefully, "and Heavenly Father is blessing me. I know I can do this." With that kind of resolve, coupled with the support of her family, the doctors, and all of you, she is taking giant steps forward every day!

In talking with Amber about all the people (you) who love her and are praying for her, she said, "Tell them that I love them. I can hardly wait to write on the blog, myself." Amber wants to be able to talk so badly. She mouths everything and is so patient with our weakness in lip-reading. Talking with the speaking valve in her trach is very difficult, although she works at it. The removal of the trach will come in time, as her body is able to master breathing 100% on its own. Her diaphragm and other muscles involved in breathing continue to get stronger and stronger and she is close enough that they have removed the ventilator machine (at least for periods of time) and allowed her to work at it all on her own.

Now that Amber is in the rehab stage, she is able to have visitors. She spends the daytime hours working (exercising), but is able to have visitors after 4pm. She would love to see you! So that we can ensure that she isn't overwhelmed at any given time, if you're interested in visiting with her, please call JP, Greg, or Julie to make arrangements. Also, please keep in mind that shorter visits (15-20 minutes) are best, so that we don’t exhaust our patient. Amber's workouts, combined with the continued effects of her medication, still tire her more quickly than normal, so we just want ensure that we don't add to that.

Amber's recent (incredible!) progress includes lots of hand/arm movement, lifting both legs one at a time on her own, shifting of her head back and forth (neck muscles kicking in!), taking several assisted steps in the physical therapy room, standing up and sitting down three times (with help) from her wheelchair, and much more smiling!

Truly, she is just amazing us (and her whole medical team) with her rapid progress! We're so proud of her and know that she can do it!

Once again, thank you for all your love and support. Please continue to remember her in your prayers. We love you all!
.

Amber Giles- Good Day

Here is an update from Amber's blog.

www.amberjoygiles.blogspot.com

Today was a good day.

No seizures! We are overjoyed! She remains on phenobarbarbital and one other seizure medication, which seem to be working really well today. The doctors have taken her off the antibiotic, since they feel they have taken care of the infection. They will still monitor her white blood cells and other inflammatory markers to ensure that nothing else flares up. One of the doctors mentioned yesterday that sometimes when a patient is on an antibiotic, an infection might be masked and show favorable results. So they are cautious, but really do feel they have gotten it under control.

Today marks one month to the day that Amber went into the hospital. She is much more alert today, and was even awake for nearly four hours this afternoon without going back to sleep. What incredible strength! The pento is working itself out of her system, allowing her to wake up. Although it is still a slow process, she seems to be making progress each day.

She is responding to voices and questions with her eyes and eyebrows. We have wondered if she has been able to see, but today her eyes are now tracking movement! When you speak to her, her eyes will slowly track toward you and it even seems like she is trying to move her head ever so slightly. Greg asked her if she wanted to see a picture of Corbin and Kayla. She responded "yes" with her eyes, but began to cry with a quivering lower lip before he even returned back to her bedside from retrieving the picture from her bulletin board. It seemed clear that she could see that picture and even more clear how much she loves her children.

When the physical therapist came in to work with her, which he has been twice a day every day for the last month, he held her hand and asked her to squeeze. No response. Then Greg encouraged Amber, telling her, “Amber, this is your exercise,” and told her how important it is for her to work hard with the physical therapist. Amber, the determined one, then mustered all her strength and squeezed his hand. I can only imagine how difficult this was for her and am once again amazed by the strength and determination Amber has. She is such a hard worker, always has been.

Throughout the afternoon after the PT's visit, when JP slipped his hand in hers, she squeezed back with both hands and repeated again with her dad. This is clearly a workout for her because she is only squeezing when prompted, but what an amazing achievement today!

Greg and JP introduced her to a few different nurses today, letting Amber know that each has been helping her and taking care of her. Sweet Amber responded, as if to say "thank you" with a smile! Her smiles have increased, but are still a huge effort on her part, as not all the muscles in her face have started working again. But when have you ever known Amber to shy away from something that is hard?

Amber likes to have her feet rubbed, which is no surprise to those who know her well. JP and Greg were taking turns giving her foot massages today and they began to joke back and forth about who gave a better massage. Amber smiled and looked as if she was laughing inside. How wonderful to add humor to the list of emotions she is expressing to us, as she's waking up. Such a wonderful sign.

She is still sleeping a good portion of the day, which is to be expected during this waking up process, especially since she is on the phenobarbital. The doctors are maintaining her temperature at a normal 37°C. She still gets chills and visibly shivers every once in awhile, but they have a warming blanket on her to help keep that under control.

We know that Amber is not yet out of the woods. We still have a long road ahead and a lot still has to happen on that road to recovery, but she seems to be responding and showing some good improvement. The doctors are very pleased with her progress, but are still monitoring her closely. They are still concerned with the possibility of her seizing again and are now focused on seeing gradual improvement in her motor functions, but they remain optimistic and feel that she is doing very well.

She IS doing well. Today was such a good day. For that we are so grateful. Every achievement she makes is a reason to give thanks to our Father in Heaven. He is mindful of Amber and mindful of all of us. We feel His blessings pouring down upon us and hope that you, too, can feel that as you have grown closer to Him in your thoughts and prayers over the last month. He has been with us every step of the way.

As Latter-day Saints, we use the first Sunday of each month as an opportunity to fast. As we have mentioned before, we believe that fasting combined with sincere prayer can strengthen us spiritually, bring us closer to God, and help us prepare ourselves and others to receive His blessings. Tomorrow, we will be fasting for Amber's full recovery, but with a special focus on our gratitude to our Father in Heaven, who has heard every one of our prayers. We invite you to join us. Amber is in His hands and what better hands than His to take care of her. We continue to pray in faith for her full recovery and are so grateful for the progress she is making, undoubtedly, with the constant help from God.

Please know we have been so touched and inspired by you, the many people who are following Amber's situation right now, and supporting her and our family in prayer and thought. We have felt loved and strengthened by those near and far: family, friends, neighbors, and those we have never met. Not one comment on this blog has gone unread. You are an inspiration and strength to us. Thank you so much.

Smile

http://www.amberjoygiles.blogspot.com/

Hello! I know you are all eager to hear about how Amber is doing. As I mentioned before, Amber has been having ups and downs each day, but overall making progress, little by little. Overall, she's doing quite well and we just wanted to share with you an update and some of the “ups” of the last couple of days.

We are so grateful for the miracle we've witnessed with the cessation of the continuous seizures. This is such a blessing. However, since Wednesday's update, she has had a couple of really intense, though non-convulsive, seizures that manifest themselves clearly on the EEG machine. Yesterday, they were unable to control one that came in the middle of the night with the medications she's been getting, so they began her on phenobarbital.

Phenobarbital is an anti-seizure medication from the same family as pentobarbital, which is the medication that induced the coma when she was having continuous seizures. Phenobarbital does not have as strong effects as the pento (thank goodness!), but it does have a sedative effect. It allows her brain to be calm without sinking her into a coma. Since the pheno makes her tired, it's definitely slowing the waking up process, but she is still doing very well, showing great signs of waking up.

Yesterday, they were able to remove the ventilator and give Amber a tracheostomy, which means the breathing tube is now hooked up at the tracheotomy site. The doctors said that they typically would have done this earlier, but they did not anticipate her being in the hospital this long. Amber is successfully breathing mostly on her own, but the tracheostomy machine kicks in when she needs a little help.

Last night, Amber showed us one of the greatest signs of “waking up” when she responded to the voices of JP and her parents with a quivering lip and tears streaming down her face. Amber is not yet able to focus her eyes on anyone or track movement with her eyes, but we do believe she is listening. Julie and Greg were able to calm her, but I'm sure she's pretty scared and confused, as she is starting to take in everything that is going on around her.

This morning, when Greg called in to the hospital early, the nurse who cared for Amber during the night said she blinked her eyes and nodded ever so slightly when spoken to. She had no seizures during the night.

Today, she showed similar signs of recognition and emotion when JP was talking to her and then also when her mom and sister were talking to her. One of the medical team told us that these signs of emotion were very positive signs, as emotion points directly to Amber's personality, which is a good sign that she is doing well waking up.

But best of all so far?

This afternoon, JP and I were talking to her telling her how much we loved her and were so happy to see her. She was wide-eyed, still not tracking yet, but listening. Then JP asked her to take a long blink if she could hear him. She very deliberately opened and closed her eyes slowly. Good job, Amber! Her eyebrows even arched up a bit.

Elated and encouraged, JP then asked, "Can you smile for me?" With every ounce of energy she had, she slowly pulled her cheeks and the corners of her lips up and mustered one of the most beautiful smiles I've ever seen! She can hear us! She is responding as well as her body will allow right now, and we are overjoyed with every effort she makes. About thirty seconds after the huge achievement of smiling, she was back to sleep.

Amber spends most of her time sleeping. The phenobarbital makes her drowsy, but this is okay because we all know (thanks to our moms) that sleep is often the best medicine. That's right, just rest Amber. Rest and heal.

Our hearts are filled with the wonder of life. Thank you everyone for your faith and prayers. Great miracles do still happen, as has been witnessed in Amber's critical situation. Amber still has a long recovery ahead of her. We are full of faith and trust in our Heavenly Father and know he is watching over Amber and blessing us at every turn. She will pull through this.

“I, for one, have never known a woman with more strength and courage than Amber once she decides to do something,” Julie said. It will take time, but we can be patient and put our trust in our Father in Heaven. “We have truly been blessed.”

We love you all and are so grateful that you have joined with us in supporting Amber! We love her, and we know that you do too. Thank you. We love you all!
.

Ups & Downs

www.amberjoygiles.blogspot.com

Amber has had some ups and downs over the last few days since our last update on Sunday evening, but overall, she is doing pretty well.

She has been experiencing several little seizures, which have been successfully controlled with the anti-seizure medication. However, this morning, she had a fairly severe seizure and her brain could not be calmed down with that same medication, so they tried a couple others until it worked. The doctors are doing all they can to avoid, if possible, inducing a coma with the pentobarbital, so they are managing all of the seizure activity with other medications. It is promising that the seizure activity is no longer “continuous” as it was each other time they attempted to wake her up, but this additional medication does slow the “waking up” process. Obviously, the goal is no seizures, so this is what we're continuing to pray for.

The doctors believe that the severe seizure Amber experienced this morning may have been caused by a fever she has, and that the blood clot they found early this afternoon in Amber's right arm caused the fever. The fever is hanging on, so they have hooked her up to some cooling devices to keep her temperature at 35°C (95°F) to help calm her brain. They will probably keep this up for 24-48 hours, depending on how her brain responds.

Amber's recovery will be slow. Her days are a mixture of ups and downs, but we continue to keep our hopes up and have faith that she will make a full recovery. Amber is alive, and for this we are all very grateful. She had a better day yesterday. We hope that we continue to see progress each day, no matter how little.

Please keep praying, and when you do, please ask for Amber's brain to be healed. We believe that our continued prayers do make a difference. As Julie said, “Why this has to happen, I'll never know, but we stand united in prayer and faith to help Amber fight the greatest battle she has ever fought. Thank you one and all for your love and concern.”

Love you all.