Therapy continues

Aidan has had a busy day of rehab today. Russell got to enjoy all of it with Aidan since Erin wasn't at the hospital.

This morning was Physical Therapy. The therapist worked mostly on Aidan's legs today. She bent his knees and worked his ankles and ended up upset due to the pain. She then put him in a stander for a few minutes. He seemed to enjoy that pretty well. She then put him in the Tumble Form chair. He stayed in that while the Psychologist and I had a chat (about 30 minutes). Dr. Colleen (the physiatrist) came in and did a checkup on Aidan during this time, as well.

Occupational Therapy then took over. The therapist put him in the wheelchair and took him to the gym. She placed him on a mat and had him sitting up, laying on his side, and laying on his belly. She also took the time to work his legs a little more. At one point he actually burped during therapy!

Next up: Speech Therapy. Aidan was actually asleep during this, but the therapist could still work on him. He actually swallowed for her during the session, which is vitally important if we want to see the trach removed anytime soon.

While speech therapy was going on, the new wheelchair for us to try came in. They got Aidan fitted for it and he turned all kinds of aggravated (heart rate 150+), mostly because they were messing with his still very stiff ankles. He also burped a second time in the new chair.

After that, a return visit from the Occupational Therapist, who spent most of the half hour trying to get Aidan calmed down. Russell had to finish the job by holding him while a nurse cleaned around his trach and G-Tube.

The social worker came in to talk with us, also. She setup an appointment with a private nursing firm on Thursday afternoon. She asked if we had any questions or concerns. She now is looking into the Katie Beckett Waiver for Medicaid along with finding out what equipment and "alternative therapies" will be covered by Medicaid. (UPDATE: We found out that the CAP/C Program here in NC is similar or based on the Waiver.)

Russell spoke with the Respiratory Therapist on duty and asked about when Aidan would be able to get an artificial nose. He said they may try it tomorrow, but it will be some time before he will get one on a regular basis.

Russell spoke with Dr. Colleen and she is checking to see if serial casting will be happening tomorrow. Aidan is now resting from his long and busy day. We will update more tonight or tomorrow.

A good night

Aidan had a really good night after we got his Clonidine patches replaced. It's amazing the difference. Now we're going to have to see about getting the Propanylol removed since it isn't necessary now that we figured out what the problem is.

I think the reason they didn't notice the patches on Aidan's arms is because we've kept him in clothes. The patches were dated when they were put on. With all of the medication that he is on to suppress his blood pressure and all his heart rate dropped into the 70's last night causing some concern to us. But he was OUT. The poor child hadn't slept for more than a couple of hours Friday night and had only taken a few cat-naps during the day.

Other than that bit of info, there isn't anything new to add. He is sleeping right now, so we're leaving him alone to rest. I think Nana is coming to visit today and then I'm going home to get Evan. I miss him. We've got to figure out our schedule for the rest of the time while we're here.

Please keep praying for Aidan.

~Erin

Evening Update

As Erin mentioned in the previous post, Aidan started storming a little yesterday and it got worse overnight. We found out the storms were happening because of a miscommunication between Northeast and Levine. Apparently, the orders for the Clonidine patches were set to be replaced every Monday, when they were supposed to have been replaced yesterday. This was partially due to Northeast changing the dosages. When the dosage was changed, the day for the patches to be replaced was reset. To quote Adam Savage of Mythbusters: "Well, that's your problem right there!"

They just replaced the patches a moment ago and they will now be replaced every Saturday. Wouldn't you know it ... they put the patches on and the storms have subsided! Isn't modern medicine incredible?

We just finished Aidan's bath and all I can say is there is definitely a learning curve involved when your active 28 lb. little boy is now 35 lbs. of dead weight. I thought getting ready to go somewhere was a process ... this is much more involved than that ever was! Between lifting/carrying him, supporting his head while bathing, changing his trach ties, and putting on new clothes, I was just about worn out! Throw in suctioning the trach when he was coughing and it was a massive production. I know this is something Erin and I will have to figure out, but today it was a lot more frustrating than I had expected.

Tomorrow we have yet another Reiki practitioner coming in the afternoon. There is no "scheduled" therapy on Sundays, so I gave them the OK to come. We can still do our own therapy session with Aidan, and will likely do some range of motion work before they arrive.

We just noticed Aidan moving his mouth in a chewing motion. He's done it before, but not nearly as much as he has done it this evening. Erin tried to give him his pacifier. You can see the picture of that attempt here. He took it for a little while, but he still "spit" it out. We think part of that is due to the weakness in the right side of his face. Erin was just happy to see him keep it in his mouth for a while. We were told by another POND (Parent of Near-Drowner) we need to introduce things into his mouth like pacifiers, baby toothbrushes, etc., so he will be used to the idea of that. It will help with therapy down the line.

Before I go, I will say that the therapists we saw today were very pleased with the range of motion Aidan has right now. He has almost full motion in both shoulders and his hips. His knees and elbows are also in good shape. His wrists are pretty good, but his ankles are very stiff. There are several possibilities for treatment of his ankles, including standers and serial casting (with or without Botox (yes, that Botox)). I am sure they will have a more significant plan of action for us come Monday.

He also has been coughing a lot more. He is swallowing some, but we will wait to see what Respiratory Therapy says about when they will start working on getting his trach out.

With that, I believe we will call it a night.

--Russell

an update

I apologize for not updating this sooner. Aidan started his therapies yesterday, although it was mostly assessments, they did do some stretches and the like. The physical therapist got a wheelchair for him to use (it needs some more adjusting, but will work), and Russ took him for a ride around the floor. There happened to be some reps here from a local company that makes wheelchairs and they had a new prototype that the therapist was excited for Aidan to try because it can grow with him and is adjustable to accommodate the flexibility of Aidan's legs right now and as he gains more range.

Different things have been mentioned to help regain the range of his knees and feet. Casts and splints and even botox. They're going to try putting him in a stander to help with this feet as well. They showed us how to do some of the stretches for his legs today too.

I think we're going to take Aidan down to the cafeteria for dinner to get him out of the room for a little bit. And then, he's going to get a REAL bath. Now, I just need to cut his hair. It's gotten SO long! With him laying so much the back has gotten pretty matted. Cutting it would just make it easier and much cooler for him.

I'm going back home tomorrow to be with Evan. Russell is going to stay here, and then we'll try to bring Evan up here Monday to see Aidan. We have to have the first sibling visit arranged with the staff for some reason though.

On sort of a bad note, Aidan had some storms yesterday evening and last night. He didn't sleep very well and neither did I. It is difficult to watch him have storms, but even more so when he really hadn't had any since Tuesday that lasted this long. He's had a few little ones but has been able to calm himself quickly.

The picture at the top is of Aidan on Thursday morning before we left the hospital. The other is of him sitting/sleeping in the Tumbleform seat on Wednesday. (He looks like my normal little Aidan in that pictures minus the trach and trach collar).

I'm still trying to deal with missing Aidan how he was before. It's hard, that's all I can say. I would love to have him run up to me and give me one of his hugs and his little kisses. I can only pray that one day he'll be able to do that again.

I guess I'll end here for now. We won't have any therapy tomorrow, but Russ and I will work with him on stretching and sitting him up for a little bit. I'm sure his little muscles and joints are sore. I'm hoping that a warm bath will help too.

Thanks for the continued prayers. We've gotten this far with them.

~Erin

Rehab begins today!

Today marks the official start of the newest chapter in Aidan's life. He has several evaluations scheduled, and we will likely have meetings with the social worker, Dr. Wunderlich (the physiatrist on duty) and others.

We'll fill you in with more information once we have met with all of the therapists and doctors today. The Occupational Therapist just came in and after she reads up on Aidan, she will begin her evaluation.

-- Russell

40 days and 40 nights.......

We are now at Levine Children's Hospital! It was bittersweet leaving the hospital. As you can see from my title, we were in the PICU at CMC Northeast for 40 days. We had so many awesome people there working with Aidan. Everyone was so great to us, we're going to miss seeing them and I know that they will miss Aidan. We will definitely go back to visit (JUST visit).

Today has been a good day, but it's been stressful on me. Aidan actually settled in well to his room. He's sleeping right now. We've met with the doctor and the nurses, but have yet to meet the actual therapists, although I'm sure we'll meet them either later today or tomorrow when they come to do their assessments.

Right now, I don't have much to tell. I got an email from Teresa, Samuel's mom (www.samuelsmiracle.com). I was actually going to email her once I got finished reading Samuel's story, but she beat me to it. She stressed the importance of getting Aidan started on hyperbaric oxygen therapy. I completely agree and hope that we can talk with the physiatrist about it since Dr. Corbier suggested it too.

We will be able to post more later, but I just wanted to let everyone know that we're settled in here now. Evan is with my aunt Regina (aka, the "baby hog"), but he will be able to come up here to see Aidan and we can possibly include him in some of the play therapy sessions.

That's all for now. I'm amazed that we are at this point... I would still rather go back and make it all go away and go back to our normal life, but God has other plans for us. Please continue to keep Aidan in your prayers. We love you all!

~Erin

The Morning Report

<>This is the morning report
Gives you the long and the short
Every grunt, roar, and snort
Not a tale I distort
On the morning report

Sorry, I couldn't resist ... I loved "The Lion King" musical when we saw it in Tulsa. It also doesn't help that the theme for Jeff Gordon Children's Hospital is a jungle :)

There's a lot going on this morning, so hopefully I can remember it all!

I came in this morning and Aidan was agitated, but only because they had just changed his diaper. The nurse said he had another great night and only gave problems during diaper changes and position changes. Even then, he could still calm himself.

The nurse also informed me that the physiatrist had got back early. They got on the phone with her and she gave the all clear to move him to the Carolinas Rehabilitation Center at Levine Children's Hospital in Charlotte. So, tomorrow morning (approx. 10 AM), they will transport him there to begin his rehab!

The turnaround he has made the past few days has been absolutely astounding! Whether it was the prayers, the reiki, the valium, or a combination of it all, I have no idea; however, I am so glad that he has made such great progress.

Right now, Aidan is sitting up in a Tumble Chair. Occupational Therapy put him in it and he is doing very well. The last time they put him in it, he was storming and very uncooperative. Now, he is actually sleeping! He looks very much like he does when he would fall asleep in his car seat.

For those who are wondering, this is what the Tumble Chair looks like.


<>
There is a meeting scheduled for 2 PM today to do a "final debriefing" for here and prepare us for what to expect at rehab.

I want to take the time to go ahead and thank all the wonderful doctors, nurses, therapists, and staff here at the PICU of Jeff Gordon. All of you have treated us great and, most of all, believed in Aidan when it seemed at times like all hope was lost. I promise to get a picture of everyone who is here today or tomorrow and post it on here.

I also want to thank the First Responders who came so quickly to his aid that fateful day. I promise we will bring Aidan to see all of you sometime soon.

Most of all, I thank my mother-in-law for being a health professional first and Nana second. I would have never been able to do what she did knowing that it was my son I was doing it to. I love you, Sonia, and greatly respect you for what you do.

I also have to thank God for giving me the courage to jump in the pond to rescue my son, as well as the peace of mind to be able to talk to the 911 dispatcher when all hell was breaking loose around me. Maybe it was all my "training" through Boy Scouts that allowed me to go into auto-pilot that day, but believe me when I say it is a whole lot different when it is your child you are rescuing for real and not some First Class Scout or a Scoutmaster from another troop you are rescuing in a simulation.

Through it all, I have gained a much better understanding of my favorite verse in the Bible. What is my favorite verse, you may ask? Philippians 4:13.

--Russell

a few pictures

I wanted to post a few pictures of Aidan. The first is one I took of Aidan on the 20th, and the other is one my mom took this evening as Aidan was trying to fall asleep. He's been doing so much better the past few days. He's making amazing progress and I'm looking forward to getting out of the hospital and into rehab and then finally home with him. (No offense to the PICU staff- they are great!)





When I left Aidan this evening he was trying to fall asleep (his usual bedtime of 8pm, for a change) and my mom and I had to change his diaper. He only got upset when we had to raise his bottom up and then he settled right back down and went back to sleep. I pray that he sleeps well tonight and that we continue to see more progress in him as the days continue.

answers to prayers....

Aidan slept/rested well all night last night. He only woke up or got upset when his diaper needed changed or he needed to be repositioned. He was able to calm himself down and didn't go into a storm. All I can say is praise God! I don't think the storms are completely gone, but the medication is helping keep Aidan calm and is giving him more control over them.

Although the valium is a sedative, he's still very alert when he's awake. His eyes are wide open and he looks around the room. I bought him a huge Thomas the Tank Engine balloon last Friday and put it at the foot of his bed. He's been looking at it. He's also been following our voices. He'll look in the direction of the person talking and will occasionally actually look AT me.

It's taken me a while to get this posted as I've had to take several breaks to help with Aidan. The new trachs came in today so we were able to change his old one out with a new Buvona that fits him much better. The difference is like night and day. That is another prayer answered.

A meeting is being planned for Thursday for us to meet with our doctors here and also with the doctors from the rehab center so we can all make sure we're on the same page as far as Aidan's care goes. Our social worker here, who is just WONDERFUL, is getting the paperwork started for a program called CAPC which will help us with some of the medical supplies and care we'll need once we get home.

There is so much stuff to think about and plan for. We're going to have to have a special bed for him and all of the equipment we'll have to have. It just makes my head swim. I thought I needed to have a lot of stuff when he was a newborn! They've mentioned wheelchairs and things like that. I'm thinking how are we going to get a wheelchair in our van.... I'm looking at buying a new stroller to use for both the boys. I want to get one that is a side by side jogging stroller with the swivel front wheel. I think one like that will work well for a while so maybe we can hold off on a wheelchair (maybe).

Aidan had another reiki session today. Since then he's been really calm and relaxed. His heart rate is actually pretty low right now and he is sleeping well. We've been so blessed with the outpouring of love and support from everyone. I know that some might not agree with our choice of trying some alternative types of therapy, but from everything I've read it can be beneficial and I know that from the short session I had, I feel much better-just centered, I don't have the overwhelming sense of stress or guilt that I was feeling before. I'm ready to move on to the next stage and get Aidan home.

Thanks everyone. We'll be keeping you all updated. :)

Please continue to keep Aidan in your prayers. He's coughing a lot more today, which is a good thing. Please pray for him to be able to respond by looking and comprehending what he is looking at. Bless you all!

sleeping angel

Our boy is resting peacefully. It's so comforting to see him sleeping soundly. I have been reading about Abby, a little girl who nearly drowned 4 years ago (www.prayforabby.com) and I came across the blog site for a little boy who nearly drowned last year (http://prayforcaleb.blogspot.com). I started reading his page and immediately felt very connected to this little boy's story. I'm still trying to read all of the posts but when I am finished I plan to email his parents and tell them about Aidan. I think having other parents who have been where we are will help. It gives me hope that Aidan is going to be just fine. Both of these mothers have a strong faith in God and they have given me so much inspiration. Please, if you have the time read these blogs and say a prayer for them as well. I got the inspiration to start this page because of Caleb's page.

While reading the entries about Caleb, I saw that he is/was on valium for spastic muscles and I immediately said to myself, "I'm going to talk to Dr. Black about that when I get to the hospital." Right after I thought that, Russell called me to tell me that Aidan had been started on valium around noon. It seems to be doing very well for him because he hasn't had a storming episode all evening. He's gotten upset, but he's been able to calm down and his arms and legs are not nearly as rigid as they have been. The occupational therapist was actually able to work with him today. I'm so thankful for that.

God continues to answer our prayers. I just pray that the storms continue to calm and that our Aidan can shine through. We got a little glimpse of the life in his eyes this evening. He was calm and looking around at everything. He even looked AT me. He's also been coughing, which we are so happy about. That means we're just another step closer to him being able to have the trach removed at some point in the future. (we've been afraid he'd have to have it permanently) .

I just wanted to share this good news. Thank you so much for your continued prayers. I'm so grateful to everyone for their love and support.

A new blog!

Russell and I decided to start a separate blog because we like the layout of this better, and because we want to consolidate our postings. I think this will work better. We will try to bring over all of the old posts so that new viewers can read from the beginning without having to go to several different sites.

Please bear with us as we get this working. We appreciate everyone's support and prayers. I also want to take this chance to thank those who have sent donations to us. We've received cash donations as well as snacks and necessities for Evan. We greatly appreciate all of these and your generosity. It is so overwhelming sometimes. In this day, it's hard to believe in the kindness of strangers, but I do.

God has touched many individual's through Aidan and I pray that he continues to do so. Our little boy is a miracle and I just know that God is going to continue to work miracles through and IN him.

Thank you!

UPDATE: 99% of the blog posts have been transferred. You should be able to read everything here now. Old comments will remain on the previous blogs, since we can't really transfer those over. --Russell

Tonight has not been good

Erin left the hospital about 9:30 or 10 and I went to Aidan's room shortly thereafter. He was agitated/storming and was not wanting to calm down under any circumstances. I tried rubbing his belly, rubbing his leg, and even played some music for him. Nothing worked. The nurses came in twice to give him medications and they didn't calm him down. I talked to Erin before midnight and she told me that he had slept through most of the day apparently. Going back to my 3rd shift days at DecisionOne, I can remember what that's like when your sleep rhythm goes against convention. It's not pretty, I can tell you that much!

Finally, at about 2:15AM the nurse comes back in to give him his scheduled meds and tells she is going to give him a bath. So, I got to help with my first bed bath. He had peed really well, so we changed his diaper after we got him bathed. We then turned him on his side and he seemed to like that position.

Shortly after we got him settled in, his monitors started going off. He also started to pass gas. The nurse came back in and gave him mylicon and repositioned him slightly. She also redid the monitor sensor (I could have sworn I put it on right!).

Right now, the nurse is about to suction Aidan's trach tube. I am hoping that he settles down. I promised that I would not go to bed until I know he is settled. Last time I tried to go to bed before he was settled, I slept in fits and starts all night. I am really afraid this is going to be a long night. I sincerely feel sorry for the nurse taking care of Aidan tonight, especially since she has to deal with me being up while all this is going on.

I place my faith in God that He will give Aidan peace so he can rest.

UPDATE (10:30AM): I went to bed at about 3:30 AM. My body was completely spent. Aidan finally settled down at 6:30 AM, only to storm again at 7:30 AM. He settled down again about an hour ago

Aidan had an okay day today. He slept pretty peacefully from about midnight to 6am, and then he had some storms. Russell and I stayed at the hospital, but went to church this morning. We went in to see him before we left and I helped the nurse change his diaper. He had been pretty calm before he had the dirty diaper. For about 4 hours he was pretty upset and they ended up giving him some extra clonidine to help calm him down, and he settled down for a while.

Aidan got a LOT of Easter baskets today. He's got about 5 I think. I left the hospital and brought Evan home a few hours ago and when I left Aidan was asleep. I'm sure he'll be awake a good part of the night/early morning because he fell asleep around 6pm or so. I just hope he stays calm.

When he's awake he is calm for a while, he'll look around and all, but then he starts crying and that's usually when he gets himself into a storm.

I'd love to just sit and hold him and make everything all better, but holding him doesn't always help, it makes it worse sometimes.

We contacted a lady who practices healing touch yesterday. It's a very interesting practice. I'm not sure how to describe it, other than it is similar to Reiki, and is an energy type of healing... it can be done from a distance or through physical touch. This lady connected with Aidan's spirit from a distance this morning and she emailed us a 'transcript'. It is in Russell's Live Journal blog if you'd like to read it.

I know that some people might not believe in this sort of thing, but I firmly believe that energy healing is effective. I've not tried this or Reiki personally, but I have done acupuncture and it helped me. We're willing to try anything and everything to help Aidan. This certainly isn't going to hurt him since the person doesn't even have to be there or if they are, all they do is gently touch him. If anything a nice person is there comforting him with their touch.

I just got Evan down for the night a little while ago and he's fighting sleep really badly now. He was crying and standing up in the crib when I went to check on him. I settled him back down and handed him 'Bubba's' (how we refer to Aidan instead of 'brother') Bedtime Care Bear. He immediately wrapped his arms around it and fell asleep rubbing it's hair. It's bittersweet. You don't think about a 9 month old really being able to understand or really realize that someone is not here but he does. He knows that Aidan is not at home and that things are different and I know he misses him. Especially the 7am wake up call when Aidan would climb in the crib with him.

Please continue to pray for Aidan. Pray for the storms to calm and for his brain to continue to heal and rewire itself so that the storms can end. We're making baby steps, but I have a feeling that once these storms are gone, we'll see a lot more progress in Aidan.

We love you all!

Alternative Therapies Starting

As Erin stated in a previous post, we have been looking for various forms of alternative medicine to use on Aidan before, during, and after rehab. She found information on a therapy called Healing Touch. This and Reiki are both forms of energy therapy. After doing a search, we found a couple in the area and contacted them for more information. One lady emailed us back and then spoke with me Saturday. She said she would attempt to connect with Aidan's spirit within 24 hours, as well as relay our information to some therapists in our area that have a little more availability at this time. We are waiting for calls back from those individuals.

For those who are wondering, the lady I spoke with has a background in religion and is a Christian. She believes that what she does is no different from when Jesus laid hands on the ill. This site helps explain the connection between Christianity and Reiki and helps answer questions you may have. Also, Erin and I have a couple of friends who practice Reiki in Oklahoma; both are master level practitioners and have been performing distance healing.

In the meantime, she did make that connection with Aidan this morning and called to talk to us about it. She also emailed the text from the connection she made. That follows below. Aidan's response is in italics.

Precious Aidan, so many people are praying for you, your mother, your father, and your brother Evan. I hope you feel the love and light that surrounds you and reminds you of your forever connection with God.

A month ago you fell into a pond. You got water in your lungs and your brain did not get oxygen for a long time. All this caused your brain and body to forget its natural human abilities.

Your spirit is beautiful, Aidan. It still needs your physical body in order to be here on earth. You used to run and play as most two-year-old humans do. Right now your body cannot do that. Your brain needs to heal in order for your body to enjoy the freedom and abilities it is used to.

Your mid-brain has some dead tissue in it and your cortex is partially atrophic. This means those parts of your brain are not getting normal messages to your body. Your motor skills are compromised and your body is tense and rigid. That is why you are in the hospital attached to tubes and machines. That is why the doctors and nurses are giving you medication and doing all they know to help you heal.

Know that you have touched the lives of everyone in the hospital, Aidan. So many people know you and are praying for you.

Momma and Daddy, please do not blame yourself or anyone else for my falling into the water. I know you are heartbroken and have re-lived my tragic accident time and time again. Please turn those thoughts loose. Reliving my accident does not help any of us. Help me erase those images. Help me relax in the loving arms of God.

I love you dearly and I want to see you smile again. It must be hard to see me like I am right now but I still need you to smile at me.

I wish I could crawl up in your lap and be your healthy baby boy again. I am glad Evan has you to hold him and love him. I love him also and want him to remain healthy. I believe Evan is a wise soul. He is here to watch over us in many ways, although he needs you to care for him right now. Tell him his big brother misses him and loves him dearly.

Thank you for getting so many people to work with me, Momma and Daddy. I will accept everything they share with me and I will touch their lives gently and lovingly. I know my healing is part of everyone else’s healing so we all work on this together.

Aidan, every cell in your body contains complete memory of everything that has ever happened to you. Please give your body permission to release everything you no longer need. Thank your precious physical body for releasing the trauma of your drowning and all the negative disoriented energy that settled in your mid-brain and cortex.

We believe in miracles, Aidan. We believe your body can regenerate itself. We believe your mid-brain can release the damaged tissue and rebuild its circuitry. Just like the computer work that your dad does. A computer will not work well or at all if it is not plugged in. It will not work right if some of its circuits, some of its components are not connected properly. That is what is going on with your brain. It lost its life source and needs to be plugged in again. This is how we do that.

Aidan, remember how you were before you came to earth as Aidan Wright. Feel how light and perfect you were simply being in spirit, being with God and all the angels. That is the life force that can feed you now, that can reverse your traumatic brain injury.

God created this earth and all creation and made it part of His song. He will help you remember your unique song, Aidan. He will help you be within the creative, loving rhythm once again.

Listen to the heavenly music as it plays within your being. Feel its vibration and accept its healing energy. Let a rainbow of healing energy envelope you and comfort you while your body heals.

Your mother and father want to hold you and play with you again. Even though you cannot be on their laps like before, you can still feel them holding you and loving you. You WILL be able to sit in their laps again. Hold on to that truth.

Aidan, no matter what happens to your physical body, you are always and forever connected to God. His loving spirit is with you always just as your parents’ love is with you always.

Imagine God’s loving, healing hands being on your forehead and the top of your head. Feel his miraculous energy connecting with and recharging your brow and crown energy centers. Keep your mind and your heart open to all the healing powers of creation.

Much beauty surrounds you and mirrors to you your own precious loving beauty. See yourself whole and healthy. See yourself as the beautiful spiritual being you are enraptured by all the healing love that comes to you from your parents, your brother, your family and friends, and from millions of people who know you only through their prayers and thoughts.

Know that your doggies miss you, Aidan. Feel their tongues licking your face and drying your tears. Let your doggies lie down with you and ground the healing energies that come to you. They want to help you so let them gather everything they can to bring to you spiritually to help you heal.

Bear, Paco, and Max [our dogs ... she asked for names of any pets living at the home]: Aidan is in the hospital right now. He is hurt and needs you to understand why he is not home. He loves you and wants to play with you again.

We will do everything we can to help Aidan heal. We will be calm and peaceful and send that peace to you, precious Aidan. We love you dearly and hope you relax and feel the healing energy of our love.

Nurses, doctors, friends, and loved ones, thank you for helping Aidan. Thank you for allowing him to touch your lives and thank you for seeing his beauty and courage. Thank you for being part of his healing.

With love……………

I share this with everyone here because you are friends and/or family who have been keeping up with Aidan though this site. You have just as much an impact on Aidan's healing as we have here. We ask that you keep up with your prayers, but also ask Aidan to do what work he needs to do. Once you have asked, never ask again; begin thanking him for allowing his body to let go of the trauma done to his body and brain. Also, if you feel any guilt regarding the accident or continually replay the incident in your mind ... let it go. It does not help Aidan to keep putting him in that place continuously. I myself still work with this, even though I have forgiven myself for what happened.

As for myself and Erin, we may start looking into training in at least the first two levels of Reiki so we will be able to administer it to Aidan ourselves. We may also seek training in Healing Touch. Again, we appreciate everything everyone has done for us so far. There is definitely a light at the end of the tunnel, but right now it looks more like the sun from the perspective of Pluto:

Now that I've had a chance to calm down

I figured now was a good time to replay the events that led up to Aidan's accident, because some people act like I directed my child to go play near the pond he nearly drowned in. I don't want anyone to think that I'm a bad mother. I love my children more than anything else in this world (sorry, Russell).

We arrived at my "step-dad's" house around 3pm (an hour before the party) to set up everything. I drove and Aidan's carseat is behind the drivers seat, so I got him out. As soon as I put him down on the ground he ran toward the swingset . I had to go get him because we were having to unload the car and all and I knew that I couldn't keep an eye on him. I was planning to take him in the house to play with his cars, but my step-dad said to let Aidan stay outside and he would watch him. Aidan is with Papaw playing in the rocks in the driveway and looking at the tractors and things so Russell and I continue to unload the car. I set Evan up in the living room in his exersaucer and went to finish unloading. My grandparents arrive during this time and Aidan is still with his Papaw and now his great-Papaw.

I start unpacking the deocorations and blowing up some balloons with a helium tank on the front porch, and Russell is in the front yard setting up the bounce house that is our gift for Aidan. My mom and grandmother are in the house getting the food ready, and Aidan is still around the side/back of the house and shop with Papaw and my step-dad (I assume).

I get a bundle of balloons for Russell to take down to the bottom of the drive to tie onto the address post and he puts them in the van and will attach them when he is on his way back to our house to pick up some things that I forgot. I still think that Aidan is with his Papaws. Russell went inside to use the bathroom and when he came out, I gave him the keys and asked "where's Aidan".

This is where the terror unfolds. All I heard was "we thought he went around front, with you" (to the bouncer where Russ had been). I believe I said, "find him"... all I remember was looking at Russell and his head turned toward the pond (down the hill and some uneven terrain) and he started running. I see something floating in the water that looks like a blanket, and the realization hits me that it isn't a blanket, it's Aidan and I take off running behind Russell. I almost fell running down the hill because I was going so fast and had to stop because I almost collapsed. My mom passes me as I see Russ diving into the water and grabbing Aidan. The bank is covered in rock to keep it from erroding and he has a hard time getting out and carrying Aidan so he hands him to my step-dad and he lays him on the ground where my mom immediately began CPR. All I could do was scream for my grandmother to call 911 (Russell yelled too, after he gave Aidan to my step-dad).

I was hysterical, so I won't even pretend that I wasn't. I couldn't even get near Aidan. My mom was pumping on his little chest and he was pale and blue. I was begging her to make him breathe, and pleading with God not to take him. I couldn't even cry at that point. I was up and down, pacing the hill, praying. What seemed like forever (only 3 minutes) later, a truck barrelled down the drive and around the pond and a volunteer fireman jumped out and took over CPR for my mom. The ambulance (well several of them) were right behind the truck.

There is a driveway all the way around the pond and there were first responder vehicles everywhere. Several family members had driven up during this time as well. Remember, birthday party... family and friends hadn't all arrived yet. The paramedics worked on Aidan for a long time, I don't know what they were doing because I wasn't allowed near him and I didn't try. I just knew he was gone. I was still pleading and begging God to bring my baby back.

The ambulance takes Aidan away and I'm told to go back up to the house and get my stuff so we can go to the hospital. At this point I'm just numb. Aidan is ALWAYS with me. He's never out of my sight. I wanted to blame my Papaw and my step-dad because they had been watching him. I still blame myself because there were so many opportunities to bring Aidan inside the house, but I didn't want to upset him when he was playing and happy.

Now, this is my perspective of the events. This scene plays out in my head many times each day. I have nightmares about it, I have anxiety attacks about it. I've played out every "what if" scenario, but I can't go back and change any of it. Would I? In a heartbeat! If someone offered me the chance to go back and change one event in my life, despite all the heartache I've experienced, this would be the one. As much as it hurt me when my dad was murdered, I've dealt with it, and I know that he's with me always. But Aidan, he's my son, my miracle baby, my heart and soul. God took a tiny little cell from my body and Russell and he grew inside of me. I felt him kick and move and I prayed I wouldn't lose him. He took everything he needed from me to grow into a beautiful, amazing, precious little boy. I can not imagine my life without him in it.

If I could go back and fix everything yes, I'd have put a fence around that pond, I'd have tied his little 2 year old butt to my leg if it would mean that he wouldn't go near that pond. We were only there for 30 minutes when this happened and Aidan was only out of someone's sight for a few minutes. It happened that quick. It was a miscommunication as to who was watching and where he was. It only takes a minute and it could happen to anyone. How many times have you heard, "I only turned my head a minute"... whether it be the child was kidnapped, or got lost, or, God-forbid, an accident like ours. Kids are curious; they will get away from you before you have a chance to figure out what happened.

What made it difficult to see Aidan was the terrain going down to the pond. He's so little that he was able to slip down there without being seen. I was on the front porch almost the whole time, and his Papaws were outside the whole time. They thought he had come around the back of the house, where he was last seen, and down the far side and around to the front yard where Russell was putting up the bouncer. We thought he was with them playing with the tractors and stuff, since that's usually where he goes.

Unless you've walked a mile in my shoes and relived this nightmare over and over and over, don't judge me. Believe me, I beat myself up enough for you and me and everyone else, but I can't change it. I have to move on and I have to help Aidan the best way I know how. I'm trying to be strong and I'm trying to put my faith in God to see him through this. Making me feel like crap and blaming me doesn't make me stronger, it only hurts me more and makes me even more useless to Aidan. So keep your hurtful comments to yourself.

I have apologized to God for my retort, and asked forgiveness. I'm only human. I don't care if you think I'm to blame, I don't care if you think any of us are to blame ... we are ... we know it. AIDAN needs prayers to recover, not me. I'm not asking for anything for myself.

I'll get off of my soapbox now ... Sorry for going on so long.

--Erin

To the smart ass who posted the rude comment on Russell's LiveJournal ...

"Maybe you should have thought about a frigging fence and gate. Sad that HE has to endure this suffering because of BOTH OF YOU"

Russell deleted this comment from my most recent post, but I feel it necessary to reply to your insensitive, ignorant comment. Do you not think that we've all beaten ourselves up for this accident? This didn't even occur at OUR house! I will live with the guilt of this for the rest of my life. Kids are kids and accidents happen. I guess you don't have children or you wouldn't have posted such an ignorant statement. So I will promptly say :

GO TO HELL!

Until you've walked a day in our shoes, keep your mouth shut and stay off our blog or own up to your comment and quit posting anonymously (although we do know that you have a roadrunner account based out of Herndon, VA).

To everyone else... I'm sorry... I am not going to tolerate anyone bashing me or my family for something like this. I feel guilty enough for this whole thing without someone rubbing my nose in it. It's not the most Christian thing to do to reply back as I have, but I've had a bad couple of days and I as I said, I will NOT put up with this. If I knew exactly who this was exactly, I'd let them have it some more. I'll take up my actions with God later.

Evening Update

UGH! I hate the hospital computers! They time out if I take too long to type an update and then I lose everything I've spent so long typing (I was posting the previous blog, so I was on the laptop. --Russell).

Today has been a bad day. I'm mad at the world; I'm frustrated that I can't do anything to help Aidan. He's been here for 5 weeks now. A month ago today was his 2nd birthday. A day when we should have been celebrating his birth and having fun, we spent it praying that he would live.

It isn't fair.... It isn't fair that he lays in a hospital bed day in and day out, sweating and breathing like he's running a marathon. His little body has to be exhausted. I'm exhausted just watching him.

They are adjusting Aidan's meds again because his liver enzymes are elevated. They are backing off of the medication that affects the muscle tension because they think it is the one causing the problems. They are also increasing the clonidine which is supposed to help with the storms.

I have been looking into every non-invasive alternative therapy I can think of to help with these storms. I want to see Aidan get past this hurdle before we deal with any of the other ones that are ahead of us. I'm looking at Reike, healing touch, accupuncture, accupressure, reflexology, massage- anything that I can do to help him at this point. It surely can't hurt.

More than anything we need your continued prayers. Pray that these neuro-storms are calmed and that we can move to the next step of recovery. The prayers for his bladder to start working have been successful, he's been able to empty his bladder today without needing to be catheterized, so please pray that he continues to be able to do so.

Thank you everyone. We have been so blessed by so many people, I don't think I can ever say thanks enough.

Why Russell believes in God

In a thread on one of the message boards I frequent, the following question was asked: Why do you believe in God? Now, I realize that some who are reading my blog are not believers of God, but please allow me the opportunity to preach a little ...

First of all, He has presented me with many showings of His awesome power and grace. For those who may not know, Erin and I were believed to never have children of our own due to her PCOS. Now, we have two beautiful boys. One of those beautiful boys should be dead, but he is alive in the hospital and making progress.

Second, He has shown what kinds of things can happen when I give him control of a situation. I share a testimony from my youth when I was at Falls Creek. During an alter call, the preacher decided to extend it a bit longer. I went to stand and I literally could not ... it felt like I was being pulled back down. After several attempts, I denounced Satan for trying to hold me back and asked God to help. I went to stand and literally felt two things happen:

1. Something "broke" underneath my chair (no, it was not the chair itself)
2. I was lifted out of my chair ... yes, physically lifted to the point I felt like I was off my feet

To this day, I believe that when I stood, God saw my faith in Him and pulled me up the rest of the way. I still get chills when I think about it, and this was around 15 years ago!

But, I think one of the greatest reasons I believe in God is because he verifies His presence in some of the most amazing ways imaginable. A prime example happened just today.

As I have mentioned in a previous post here, "He's My Son" by Mark Schultz has been a song that has been both my personal prayer and a source of hope for me. When I first heard the song, I could have sworn that the song was God talking about Jesus, at least in the first verse. When I finally got Mark's first album, I learned the song was about a sick child.

Last night, Erin received a couple of gifts from one of the nurses here in the PICU: a journal and Mark's live album (she had heard me playing the song on my cell and found out from Erin how big a fan of him I was). It just so happens "He's My Son" is one of the songs on this album.

Before singing it, he tells the story of how the song came to be (I'll obviously be paraphrasing a lot here):

Mark was a youth pastor for about eight years prior to becoming a performer. One of children in his church went to the hospital with a sore hand. When Mark was called to the hospital, he and the family found out the child's hand would be OK, but he had Leukemia. The family spent a year and a half agonizing over whether their son would live or die. The child's mom would go into his room and rub his back to help him sleep, only to end up crying because she was unable to cure his cancer. His father would constantly pray to God to give the cancer to him so his child could live a normal life.

Mark spent three months trying to write a song about this situation and couldn't get it finished. At one point, God comes to him while he is at the piano:

God: Still having trouble with that song?
Mark: Yeah. It's just not coming to me.
God: Let me ask you something ... Do you have a son?
Mark: No.
God: Do you have a son with cancer?
Mark: No.
God: You need to slide over ...

45 minutes later, the song was written. Mark says now that he laughs when he looks at the liner notes and says that he wrote the song, because the only thing he did was get lucky enough to be in the room when it happened.

When I heard this, I had chills and started crying at the same time. This story verified for me how much God was involved in the song! Even more so, it verified for me how present God can be in our lives if we let Him.

Just so you know, the child the song is about is now 21 and 100% cancer-free.

The baby steps continue ...

Today was an okay day. Aidan has had some episodes that I would consider storms and some that I would just call agitation. He gets upset when he has a dirty diaper and when his bladder is full (because he's not able to empty completely). He is usually able to calm himself in a short amount of time.

This morning he was really relaxed after having his diaper changed. His nurse had to give him an extra dose of one of the medications for the storming (not a sedative). It allowed him to calm down enough that he was able to fall asleep and his muscles actually relaxed enough for them to reposition him and change his diaper without getting upset.

Russell, mom and I went to a support group meeting at the hospital that our neurologist invited us to. The group is targeted toward autistic children, but also deals with other children with neurological problems. It was very interesting.

When we got back to see Aidan he was upset, but his trach extension had come off and his trach was completely covered so he wasn't getting enough air. He was very upset and once I got the extension put back on and got his neck dried off he calmed down and stared at Nana for a long time. The nurse said that he actually peed a lot on his own, which is great!

He's been much more alert and looks around, but he is not tracking objects. I don't know that he focuses on things, but he looks around. He really likes his fan we put in his room. It helps calm him down, but only if it's blowing on him (he's exactly like me). He calms down when his favorite cartoons are on TV, so I know he recognizes certain things. He was also swallowing a lot more today, and he yawned several times, and he moved his mouth kind of like he was chewing. He even made a cute little sound when he was yawning.

We're making baby steps... teeny, tiny baby steps. But I'm praising God for every one of them.

There is no family meeting this week, but we hope to talk with Dr. Black tomorrow since we didn't get to talk to him at all today.

Please continue to pray for Aidan, and please focus on calming the storms, his muscles relaxing so that it is easier to do therapies, his bladder continuing to work on it's own, and his continued progress however slow it may be.

More small victories

Another few baby steps that for some reason I've failed to mention. Aidan has been swallowing. To me that's a big thing. It means he's able to deal with the secretions (saliva, etc) on his own. He has not been coughing as much as we'd like to see him, but we are praying for that to improve. Also, Aidan has been moving his toes and his foot when we tickle it. He doesn't move it much, but it is a step in the right direction.

Today, Aidan had some small storms. Usually when he was upset because he had a dirty diaper or his bladder was full. He was able to calm himself down after a while too. I put in a movie (Curious George) for him this evening and he settled down and opened his eyes for a while and looked around and then fell asleep. He woke up because the nurse moved his head to check his trach and it upset him, and he had a dirty diaper. Once that was changed he was fine.

As I mentioned yesterday, they have been straight cathing him because he hasn't been emptying his bladder completely. They brought in a chair called a 'tumbleform' for Aidan to try. It fits him perfectly, but he got very upset about being put in it. His legs are so stiff that it makes it hard to work with him. We're going to keep trying to sit him in it. I'm sure his little body aches from being in the bed for almost 5 weeks and being so tense all the time.

We met with the neurologist, Dr. Corbier, today at his office to talk more about the alternative treatments that we've read about. We mainly discussed the antioxidants, but we discussed others as well (craniosacral, hyperbaric, accupuncture/accupressure, etc.). He also let us know about a support group he started for families with neuro paitients. The meeting is tomorrow at 6:30PM. We plan on going and hope to learn a thing or two. I feel a little better today knowing that Aidan rested well last night and when I left him an hour ago he was resting comfortably and had been for almost 2 hours.

He looked so peaceful and sweet. I wanted to just pick him up and love on him. He looked like he was asleep in his bed at home. I wish that's where he was.... I see his little car bed and I can't help but feel a huge pang of sadness.

I've been reading on another site that was posted in the guestbook on the CaringBridge site about a little girl who had a similar accident as Aidan. It has been very insightful and has helped me greatly, and in many ways I relate to her even though our experiences are somewhat different. It's a lot of reading but if you are interested the site is www.prayforabby.com.

I ask that we focus our prayers on calming the neuro-storms, and for Aidan's muscles and body to relax so that the therapists can work with him. Also, pray that he begins making more movements on his own.

Thanks!
Erin

The power of prayer is amazing!

For the first time since the doctor attempted to extubate Aidan, he had a peaceful night without storming. I am so relieved that my baby finally was able to rest through the night. Russell was with him at the hospital last night.

My faith is being slowly renewed. Russell was telling me that he had an overwhelming urge to pray for Aidan last night after he had gone to bed. He sat up and prayed for Aidan and again, put everything in God's hands. I also had the overwhelming urge to pray for Aidan last night, and as hard as it was for me to do, I did the same thing. I put it all in God's hands. Despite what I want for Aidan, God knows best, and he has his own plan for Aidan. I know that, I just have a hard time giving up control. I asked for healing, I asked for a miracle, I asked for my baby to smile and laugh and recognize me again. I prayed for the storms to calm so that the therapists can help him more and so that we can work with him too. I asked for him to be responsive to our voices and our touch and for him to start making movements on his own. I just have to trust that God will provide. (When I talked to Erin on the way back from the morning interview that never was, I found out we had the urge to pray happen at the same time. It's amazing how God works! --Russell)

Russell has another interview today at 4PM Eastern, so I am hoping to get back to the hospital soon. I'm anxious to see how Aidan is doing today. I just wanted to share with you all this tiny little glimmer of hope.

Please pray that Aidan continues to remain calm and that the storms improve and go away and that his muscles are able to relax. Pray that he is able to start coughing and gaging so that he can eventually have the trach removed. Pray that he starts responding to us now that they are decreasing his sedatives and other meds. And please pray that Russell finds a job soon. Thank you, everyone!

A glimmer of hope ...

I tried earlier this afternoon to update the journal but the internet connection at the hospital timed out on me and I lost everything that I had typed.

Aidan has had a pretty good day. He's had some storms but has calmed himself very well. Dr. Black has discontinued all IV meds. This means that Aidan is no longer getting the Fentanyl to sedate him if a storm gets bad. They want to see what he can do on his own.
Also, his meds are being revised again. This is going to be an ongoing routine, I think, until we find the right combination. They are taking away the meds that they don't feel are as effective and increasing those that are. As I mentioned yesterday, Aidan is on 11 different meds. That's a LOT for a 2 year old. We are adding some antioxydants to the mix. Vitamin C and Co-enzyme Q-10.

Aidan had to have another catheter inserted last week, but it was removed today, although he will have to continue being cathed because he isn't emptying his bladder well on his own. He had been but I think the tension from the storming and posturing are making it more difficult now. He also has something called C-diff. It's a bacterial infection in the intestines caused from taking antibiotics for so long. It is very contagious so we have to gown and glove up when we hold him or change a dirty diaper.

I held Aidan twice today and both times he fell asleep on me. It was nice to know that I was comforting to him, but he is so HEAVY! My arms fell asleep both times. Russell and I have learned how to give Aidan his medications through his g-tube, I know how to suction his trach, and I helped change his trach today. It wasn't as difficult as I thought it would be, but it's something I never thought I would do. I was afraid of doing the trach change because I don't want to hurt Aidan, but it was really quick and easy.

We've gotten responses back from some of the other rehabs as well, and they are all saying the same thing. They can only offer a few weeks and because of funding they really think that we should stay in the state. So it looks like we'll be going to Carolina's Rehab in Charlotte. The case manager is coming tomorrow to review Aidan's chart again and we should know something in a day or so.

Russell still has not had any luck finding a permanent job. He has an interview in the morning, so please say a prayer for us that he gets a job soon that will support our family. Having him around 24/7 through this whole ordeal has been a blessing despite not having an income for over a month now, but the bills are not going to pay themselves.

Today has been a particularly stressing day for myself. The grief that I feel is enormous. I feel like a part of myself has died, even though Aidan hasn't. All of the things I had hoped and dreamed for Aidan before this accident are gone. A part of him is gone and we may never get it back. I have to come up with new hopes and dreams for him now, and pray for a miracle for his shining personality to come back to us. I know I sound like a broken record when I say this, but I miss him. I can hold him and I can love on him, but he isn't able to hug me back or give me his little kisses. He used to sit in my lap and kiss me over and over and over until I had to tell him stop, or that it was enough.... looking back, it could never be enough. I miss the way he'd run up to me and wrap his arms around my leg to give me a hug, and I miss his jabbering because he absolutely refused to talk. I know that Aidan is a strong, tough, and stubborn little boy. I'm praying that he has enough fight in him to prove the doctors wrong. God has blessed us with the love and support of our friends and family and perfect strangers. He's graced us with the miracle of Aidan's conception and his survival from this accident and we're praying for even more miracles in Aidan's recovery and in his life.

We greatly appreciate all of the prayers, love and support we've gotten from you all, and we ask for your continued prayers.

~Erin

Evening Update

I just left Aidan's room a short time ago, and on my way out was handed a huge stack of papers. This is a list of all of his medications and information about each of them. There are 11 different meds total (This will most likely change as time goes along, especially when the Fentanyl and other drugs are eventually eliminated or replaced. -- Russell). The nurses showed me how to give Aidan his medications this evening through his g-tube. It wasn't that difficult, but I'll probably need a checklist to follow the first few times I have to do it on my own at home.

It's nice to feel like I'm not completely unable to do anything for him. I've been feeling like I'm just in the way when the nurses come in to do their thing. It's all just very overwhelming. Never in a million years did I think I would be in this position.

I keep trying to have faith that Aidan is going to get better. He's made it this far when his doctor didn't think he'd even survive the first day. He's here for a reason, and I hope he proves everyone wrong and we're able to come back and see these nurses and doctors and show them how much progress he's made. Aidan has a ton of angels watching over him, and I've said it before ... He's a Miracle.

~Erin

Some positive progress

We've made some tiny baby steps today. Aidan is doing pretty well. They've removed some of the monitors, specifically the ones keeping track of his heart rate and respirations. They've adjusted his medications some, trying to get him off of the sedatives and to adjust the ones helping to control the storming episodes. Moving him to the regular pediatrics floor has been discussed since he is stable and isn't requiring the IV meds and sedations. I'm not sure when that will happen for sure.

We are still looking for a rehab, but I got some clarification on Charlotte's Rehab Center. They said he would probably stay about 2 weeks, but if he shows improvement they would keep him there longer. They also said the longest they usually keep patients is a month anyway. Most of his long-term rehab will be done at home by us. We are still looking at other options, though.

As always, we really appreciate your continued prayers and well wishes.

Small victories

I apologize for not updating yesterday. Time just seems to get away from me sometimes.

Aidan had a pretty good day yesterday. He had a few episodes of 'storming' but they really weren't too bad. A few of them I wouldn't even consider storms because he seemed to be upset and crying. He opened his eyes a lot more yesterday and looked around without getting upset. The only time he got upset was when he had to have his diaper changed.

Russell, my mom and I got to hold him yesterday for the first time. I held him first and for a while he was relaxed but he got upset and you could tell he was crying. I don't know if it is the neurological problem that triggered it, or if he's just confused and scared maybe. It is heartbreaking, but it was so good to hold him again. (This is one of many "small victories" we have seen/experienced and hope to see/experience many more as time goes on. --Russell)

I've begun looking into alternative therapies and will talk more with his neurologist on Monday to see what he recommends in addition to the standard rehabilitation therapy. I'm willing to do anything at this point to make Aidan better. I know the chances of him being like he was are slim to nil, but I have hope that we can get some of that back. He's a tough little boy with an infectious personality.

We got some pictures of us holding him and I will add a few to the photos.

Thank you all for the continued prayers.

3/14/2008 Family Meeting

As we knew, from yesterday, the results from the MRI were not what we were hoping for. The MRI showed that Aidan's brain has atrophied (shrunk) and that several areas deep in his brain (basal ganglia) have infarcted (died). During the meeting Aidan's doctor told us that his goal is to get Aidan off as much of the sedative drugs as possible and get him "awake." The neurologist (Dr. Ferraris) said that cerebral palsy is possible and that a prolonged coma is possible. From my understanding, she is making it sound as if Aidan will be in a permanent vegetative state. We also spoke with the social worker and none of the rehab facilities are willing to take a chance on Aidan. They are only willing to take him for a week or two so that we can learn how to take care of him at home.

Our other neurologist, Dr. Corbier, came in after the meeting and spoke with us. He seems a bit more optimistic and is upset that the rehab facilities have just written off Aidan's case. He is definitely willing to try alternative therapies and has asked us to make a note of Aidan's responses to the medications he is given so that he can come up with a different drug protocol for him, since some of the medications don't seem to be effective. He also wants to try to preserve the rest of Aidan's brain function by treating him with antioxidants, etc. I mentioned some of the research I've found about Hyperbaric Oxygenation Therapy and CranioSacral Therapy and he knew about both. I think that he would be willing to try either type of therapy for Aidan in addition to other therapies.

At this point, we are all just very overwhelmed by the meeting today. We are disheartened by the results of the MRI and are still praying for the best outcome.

Aidan did have some storms today, but he was able to calm himself down and from 4pm until about 9pm or so he was sleeping peacefully. We even saw him smile and yawn in his sleep several times.

We called his nurse just a little bit ago and she said that he did have a little storm but settled himself back down after they changed his diaper and went back to sleep.

After everything that happened today and as horrible as I've felt, seeing Aidan smile in his sleep while Russ and I were stroking his hair made me feel a million times better. Knowing that he was able to settle down without medications is a big relief as well. He will be completely weaned off of the Versed tomorrow. They've been decreasing it by .1mg ever 8 hours. When we left he was at .2mg, so by 10am tomorrow morning he will be off of it completely.

I just pray that he has a good weekend, and these storms continue to calm and he is able to find his way back to us. Aidan is such a shining light and has such an amazing, happy personality. You can't help but fall in love with him. I just hate to think that we may lose that.

Please continue to pray for him, and our family. I, personally, have been having a very hard time keeping my faith through this. We appreciate everyone's prayers, love and support since this whole ordeal began. We'll continue to try to update on his condition each day.

~Erin

Brief update - more tomorrow

I just wanted to post a quick update, but I don't want to get into everything until we have our meeting with the doctors tomorrow morning.

Aidan's MRI/MRS scan was this morning. There were a lot of changes from his last scan. These were not good changes. The lack of oxygen to Aidan's brain has caused some of the areas we mentioned as being hypoxic on the last scan to infarct (die). My brain shut off after hearing cerebral palsy and coma for a long time.

Right now we all are just trying to deal with this and come up with questions to ask the doctors tomorrow.

On a more positive note, Aidan is still off of the ventilator and is doing pretty well. He is still having the storms but they are less severe and he is better able to calm himself and get rest without having to be given large doses of extra medication to sedate him.

We just ask that you continue your prayers. We don't know how severe any of this damage is right now, and I don't think the doctors can even tell us much at this point until they get him more awake and we move on to rehab.

Thanks for keeping us in your thoughts and prayers. We'll post more tomorrow afternoon.

~Erin

Afternoon Update

I went into Aidan's room this morning about 10AM. The nurses informed me that he had been storming since 8:30AM. Once again, his respiration rate was high, but his heart rate was normal.

Dr. Caceras came into Aidan's room a little later this morning and told me a lot. Hopefully I got it all:

• The central line had been removed recently due to Aidan having a high fever. When they pulled this, his fever started going down some. As a result, they cultured his blood and started him on antibiotics. That is almost completely cured
• They are trying to get Aidan more awake. They feel this may help with the healing of his brain, but we are wondering how this is possible when he has 4+ hour storms
• His Ativan has been moved to his G-tube along with some of his other drugs (Colace, antibiotic, etc.). They had also taken him off the Versed, but it is back on now.
• Feedings have started again, and he will be on full feedings by tomorrow.
• The MRI/MRS is scheduled for sometime tomorrow morning (not sure of the exact time, but it should be mid-morning unless an emergency pops up).
• They have setup a protocol for administering certain drugs should a storm start lasting too long. They issue each drug then wait an hour before giving the next drug. The order of the drugs is: Ativan then Fentanyl then Propyphol (sp?).
• Aidan is off the ventilator more now, though they may put him back on it of an evening. He still gets oxygen, though. I may try to hold him a little later today.
• Next family conference is scheduled for midday Friday (11:30 or noon). I don't have a definite time yet, but may later today or first thing tomorrow.

Frankly, things have started to get more difficult for me. This Sunday will be one month since the accident. I can't help looking at Aidan and while thinking of how far he has come along, also think of how far he have yet to go. It is depressing, demoralizing, and just flat-out difficult to deal with all of this. While sitting in the room with him, his Aunt Regina, and his great-grandma and great-grandpa, I bowed my head. I could barely pray, I was so tired and emotionally drained. I am doing everything I can to remain strong and keep up my faith, but it has not been an easy week. Last family meeting, they were looking at two more weeks here. I'm really afraid that it is going to be closer to two more months. I know Aidan needs a lot of prayers, but please pray for me and Erin that we will be able to get through this very difficult time. Also, concentrate prayers tomorrow morning on Aidan that we will have a good result from the MRI and MRS scans.

-- Russell

Afternoon Update

We don't even know where to start with this entry. Aidan had several storms overnight that weren't too bad. Mainly just the rigid posture/stiffening up. This morning when Erin got to the hospital he was having another storm. They are having a hard time getting the vent tubing to stay on the trach tube and it pops off continually.

Dr. Caceras came back on duty today so everything is being changed up again. They are switching most of Aidan's meds from IV form to oral form so that they can be given to him through his G-tube. That is a step in the rehab direction. Dr. Caceras doesn't want to give Aidan the morphine to help calm these episodes. He wants the nurses to give him Ativan and then Fentanyl and then if those aren't effective (which they usually aren't), then they can try the morphine or propofal(sp?). Right now, the morphine is working to calm him down.

It's a lot to try to keep up with, and frankly, we're getting frustrated with it all. Either Aidan is completely drugged up to keep him from having the storms or he is more alert and constantly has them. He can sometimes calm himself, but for the most part he only calms down for maybe 5-10 minutes, sometimes it's less than a minute before he's back into it.

If they were able to get them under control to the point that Aidan is only having one or two episodes a day, we can deal with those. He could go to rehab and they can work with him. But to constantly have these things unless he's just completely out of it ... we don't see how they are going to do anything with him in rehab.

We just don't understand it all. We're praying for these storms to just go away completely so we can move on to the next stage. We think the best thing for all of us to realize is that Aidan is not going to just jump back from this. It's going to take time, a lot of it, and he may never be like he was before the accident. But then again, he can surprise us all and come back completely. That is what we're hoping and praying for. We miss our little boy.

What happened yesterday/last night

The surgery to replace Aidan's trach tube went great. They went up a full size, and the difference in his breathing is noticeable.

They have now added morphine to his drug cocktail. They had to give some boluses of meds yesterday to help settle some storms; however, since replacing the trach tube, there has been a difference in things. As of last night when we called the nurse's station (approx. 11 or midnight, I think it was), he had a 20-minute storm where all he really did was become rigid; his heart rate and respirations remained low.

Erin is on her way to the hospital now. I'll give her a call a little later and find out if anything happened overnight.

Aidan had a good night last night. Russell and I left the hospital and went out to dinner at Logan's Roadhouse. We actually ran into our social worker, Betsy, there. We came back to the hospital and sat with him for a few hours. Russell read a few chapters of Narnia to him and he was calm the entire time.

We went ahead and went home for the night and got back to the hospital early this afternoon (the time change really messes me up). The nurse said that Aidan had just calmed down from having a pretty bad storm that lasted about 2 hours. She said that the doctors had decided to adjust his medications a little more. I think he had one other storm during the night, but I don't think it was very bad.

On a good note, his nurse said that this morning when she and another nurse were moving and changing Aidan he had his eyes open and she felt like he was actually looking at her, she started talking to him and said 'hey, Aidan.' and he smiled at her. The other nurse saw it too. He even smiled at Russell this afternoon. I haven't seen it myself, yet.

He's had several storms today, and they've started him on another medication, bromocryptine. I'm not exactly sure what it does specifically, but it works in conjunction with the other meds to help control the storming.

The neurologist came in to check him and he said that he thinks Aidan is getting better. His last EEG show more brain activity and he's wanting to get another MRI done later in the week.

Aidan is scheduled to go down into surgery at 7:30 in the morning. That may change if they have outpatient surgeries.

I'll post more later.

~Erin

Today seems to be going pretty well. Aidan has been taken off of one of the sedatives (Fentanyl). They've started him on Methadone to deal with any withdrawal symptoms he might have which could trigger more storming episodes.

He's had a few mild storms today, but they haven't been nearly as bad as they have been. He goes into them rather quickly and just as quickly calms back down.

They will start weaning the other sedation med (Versed) tomorrow. The plan is to do it slowly, although I'm not sure how slow they are talking.

Aidan will go back under general anesthesia on Monday (not sure what time yet) to replace his trach with a larger one. This should solve the problem he's having with the leak. They are putting in one that is more custom fit for him. I think the doctors underestimated how big his chest/torso is for his age.

He's been resting comfortably for most of the day, but did have a slight fever a little bit ago. He is on antibiotics for the sinus infection as well.

Evan has gone home with my aunt and cousin. I decided to transition him to formula so that it would be easier for others to take care of him. They all but ran out of here with him. They like to spoil the boys. It's hard to be away from either of the boys, but it's nice to have a little time to myself (even if only for an hour or so).

If Aidan is still resting well this evening, I think that Russell and I are going to try to get out of the hospital for a little while. I'm not sure what we'll do, but Aidan is being well taken care of and the baby-hogs have Evan (you know I love you!).

We'll update more tomorrow. Thanks for the continued prayers and support. Love to everyone!

~Erin

03/07/2008 Family Conference

We had another family conference this morning. Highlights:

• Monday, they are going to insert a different trach tube. Aidan needs a longer tube because of his stature (he's barrel chested). They've ordered several different sizes and will try to get the best fit. They will be doing this under general anesthesia again and it will require that he is monitored for another week after the procedure. This also means another week before we can hold him.
  
• Aidan has developed a sinus infections because of all the tubes and stuff and they are starting him on an antibiotic today to deal with that.
• Dr. Corbier would like to get another MRI next week along with an MRS. He reiterated the fact that what damage we are seeing in the brain (the hypoxia) has still only shown up in the diffusion MRI scan. For those who are not aware, a diffusion MRI creates its images by measuring the amount of oxygen in the water molecules within the brain. The MRS will give them a better idea of what the prognosis is. Dr. Corbier did say that the areas that are hypoxic are reversible. The next MRI will definitely give us a much better idea of what we're looking at.
  
• Some new drugs are being added to the fray (Dantrolene and IV Clonidene along with the Clonidene patch). It will be another 72 hours or so for them to really access the effectiveness of the combination of medication. This is really all trial and error.
  
• Aidan has started receiving feedings through his G-tube (they will also be able to start giving him some of his long-term medications through the g-tube as well)
  
• Charlotte Rehab has not been cooperative. They said they would only take him for 2 weeks, and that would pretty much be to show us how to care for him. Needless to say, Dr. Black was livid! He has suggested we start concentrating on rehab locations out of state again. Russell had got a call from the Atlanta rehab center and he found out that they have scholarships available. The social worker is also going to look into other options within NC, the main one being Pitt County Memorial Hospital in Greenville, NC.
  
• Dr. Black also wants to try to start weaning Aidan off of the sedatives (fentanyl, versed, etc) again, because he will not be able to go to a rehab facility on these medications.
  
• We are looking at probably another 10 days to 2 weeks here in the hospital, at least. This is just taking a lot longer than any of us anticipated. Had Aidan not started having these sympathetic storms, everything would be a lot different.
  

I (Erin) just wanted to add that everyone here at the hospital has been wonderful. The nursing staff, the respiratory staff, the doctors, they've all been doing a great job. I know that this is stressful on them as well. I can tell that they all really care about Aidan, as I'm sure they do with all of their patients. This whole thing is just indescribable... the range of emotions that I feel. I go from guilt, to anger, to just sheer depression all in the same day, several times a day. I don't know that I'll ever understand why, or how- I just have to pray and trust that he's going to get better. It is very frustrating, though when a rehab facility that deals with brain injury doesn't think that your child is treatable.

On another note, Russell had another job interview this morning. He could possibly know something today next week (I called the recruiter and they informed me that it will likely be Monday that I find out something -- Russell). As for the interview that he had last week, it could be next week before he hears anything.

For now, this is what is going on. Aidan is currently calm and the symptoms of the storming episodes are under control. His heart rate is around 110 or so and his breathing is good. It's a little fast because of the trach (which is why they are changing it). He seems to be resting comfortably right now. We're just continuing to pray that these storms disappear and in the meantime we pray that the doctors have found the right combination of medications to control the symptoms of the storms.

Quick Update

Here is a quick update on what is up right now:

Dr. Corbier looked at the EEG and informed us that the scan showed more activity than the previous scan. This is interesting to note, especially since he is on even more sedation than his previous scan.

They are continuing to increase the meds again (Versed, Ativan (UPDATE: Aidan is no longer on the Ativan. It was replaced by the Versed, which he was on before), and Fentanyl) in an effort to better control the storms. We realize they likely can't completely stop the storms. Also, he is hypersensitive to touch. The nurses told us that even when they try to take his temperature under his arm, it does not take much to get him to go into a storm. Fortunately, they have been able to get enough meds in him to keep his heart rate under 180.

We are waiting for the nurses to finish rounds before we go back in to see Aidan again. After that, we'll likely head to the house so we can get a decent night's sleep. Since we have the meeting tomorrow morning, we want to make sure we are well-rested.

It's 3 AM

No, I'm not going to break into the Matchbox 20 song "3AM", but the time stamp is appropriate for how things have been so far today.

I was in Aidan's room maintaining my vigil when I fell asleep just after midnight (and listening to "He's My Son" on my cell phone and bawling my eyes out). At 2AM, the nurse had come in to start her follow-up on Aidan when I heard one of the unmistakeable tones coming from the many machines around him. I asked the nurse if she did something and she said she had put mouthwash in his mouth. The pain from this (Aidan has bitten his tongue a few times) set him off into a storm. She spent the next hour trying to get him to calm down and was overall unsuccessful. Once again, his pulse peaked at 200 and respirations were consistently over 100.

About 45 minutes later, I went up to his bed and attempted to calm him by rubbing his leg and talking as softly as possible to him. That didn't help matters much. I told the nurse I was going back to my room; I couldn't stand seeing him like that. I tried to sleep, but it was more in fits and starts until the nurse called and told me he had settled down. At that point, I finally got to sleep.

Fast forward to this morning. I went to see Aidan when I got towels so I could take a shower and he was, once again, having a storm. This time, the nurse was telling an EEG Tech what meds Aidan was on (He'd make most rock stars green with envy when you start counting the number of drugs he's on ... wow!). She proceeded to tell me that he had been in this storm since she came on at 6AM. At this time, they are preparing an EEG while it is happening to find out if the storms have actually turned into seizures. they also have decided to put Aidan back on the Versed, since multiple boluses of Fentanyl and Ativan really haven't had much of an effect on him.

Pray that these storms are still storms and not seizures. If they are seizures, it will be a major setback.

Now that I think about it, I guess Rob Thomas actually did write an appropriate lyric in that hit song:

well I can't help but be scared of it all sometimes