Youngster in critical condition

[Fat Bones]

I keep praying for this kid every day, I just can't imagine what the parents are going through right now. My heart goes out to them.

Same here, this is first thread I look for when logging on, and I open it hoping for the best but dreading the worst.

[MajorMike]

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.

[RashoFan]

My heart, thoughts and prayers go out to Aidan and his family!

[MajorMike]

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.

[Soul_Patch]

I am going to raise some controversy here, but i think (and grant it, i dont know because im not there) if this was my son, I'd rather him pass on and be peacefull, than to live a life like this.


This is just a long agonizing march to the inevitable, and it is soo sad...


my heart really go's out to these folks, and most importantly that poor young boy who's life has ended so abruptly.

[MajorMike]

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.

[MajorMike]

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.

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.

[MajorMike]

[marini martini]

I am going to raise some controversy here, but i think (and grant it, i dont know because im not there) if this was my son, I'd rather him pass on and be peacefull, than to live a life like this.


This is just a long agonizing march to the inevitable, and it is soo sad...


my heart really go's out to these folks, and most importantly that poor young boy who's life has ended so abruptly.

Such a sweet little soul! Hope all ends good for this little fella!

[MajorMike]

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 is eventually eliminated. -- 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.

We have received numerous inquiries about assisting our family financially during this time. In response to those inquires, an account has been setup to help with Aidan's expenses. Due to problems with the bank processing deposits to the appropriate account, we decided it best that if you wish to make a donation, it will be best to mail it to us directly.

Our address is:
Aidan Wright % Russell Wright 1700 Cline School Road Concord, NC 28025
For those that find the internet easier, a PayPal account has also been set up if you wish to use PayPal to make a donation. The email address is [email protected]

[MoSpur]

Thanks for sharing. I'm still praying.

[MajorMike]

TUESDAY, MARCH 18, 2008 11:25 PM, EDT
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 gabbering 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.

[Mijo]

I've been following thread for awhile now. They are complete strangers to me yet it breaks my heart when I look at the photo to the point my eyes well up with tears. I hope he is able to recover...

[MoSpur]

Thanks for the update. "Weeping endures for a night, but joy comes in the morning." Psalm 30:5

I know that morning is going to come soon for that family.

[MajorMike]

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!

[MajorMike]

Thanks for the update. "Weeping endures for a night, but joy comes in the morning." Psalm 30:5

Thank you, I will pass that along.

[MoSpur]

Do that. I'm not letting go.

[MajorMike]

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.). 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 on here in the guestbook 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.

[MoSpur]

Thanks for sharing. I can related to these people in a way. Its been a couple of years since my sister had a stroke. We almost lost her, but God saved her. We had to be patient. Very patient. She was in the hospital for a long time and then in rehab. She is finally home and trying to live a normal life as possible. It was a long road, but one well worth it.

They have to pray for patience. Again, thanks for sharing.

[MajorMike]

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.

[MoSpur]

Thanks. I am very pleased with what I read. Its awesome. PRAISE GOD!!!

[MajorMike]

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; one is even a master level prac ioner and has 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.

[MajorMike]

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.

[MoSpur]

Thanks for the update. I keep praying for him and his family. I pray that his family never let go of their faith in God. They can move mountains with faith.

[MajorMike]

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!

Tuesday, March 25, 2008
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.

at 11:35 PM