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prayers and vibes for my exbf and son - Page 5

post #121 of 190
Thread Starter 
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. B 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.
post #122 of 190
Oh, those baby steps sound wonderful! Keep at it, Aidan, you're doing a great job, little guy!
post #123 of 190
Many Continued healthy & calming For sweet Aidan
We hope he keeps getting better & better Keep up the progress Aidan
post #124 of 190
I want to let you know that I have been following your story since the beginning of Aiden's accident. I am so glad to hear he is doing well. My prayers are with you and your family. I may not know what Aiden looks like but I invision a happy and healthy little boy coming home to you. Good luck and I will keep on praying for your sweet little boy.
post #125 of 190
Thread Starter 
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.
post #126 of 190
Thread Starter 
i didnt get an update about Aidan today, but i did get a message saying that someone has been going on their blog and posting some very hurtfull comments towards the parents. It breaks my heart hearing this and i can only pray for this person, and pray that its no one i know, because if i ever found out i would probably do some damage myself. These people have been through quite enough and dont need the abuse. I dont think at this time i am going to post the message that was sent to me, its not constructive in the least. All i can say really is please continue to pray for Aidan and his family and also for this person who felt it neccessary to bash someone who is already down.
post #127 of 190
Some people are just evil. I really hope that they get what's coming to them. I will continue to pray for Aidan and his family - he's come so far - I can only hope that he'll continue to get better. to everyone
post #128 of 190
Some people are inexplicable. Maybe you can get them to let you access their blog and delete anything upsetting before they look at it...?
post #129 of 190
Thread Starter 
they actually have the ip of the person who posted the junk yesterday and traced it to a NJ account. Stupid ppl anyway.
post #130 of 190
Thread Starter 
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'.

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.
post #131 of 190
Thread Starter 
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 practitioner 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:
post #132 of 190
Thread Starter 
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
post #133 of 190
ohh no ive just read the whole thread!
this is awfull all my prayers too little Aiden....
and vibes and support too Russ and Errin
post #134 of 190
Thread Starter 
thank you, and thank you to everyone who keeps informed and prays and thinks of the family. This little guy still has a long way to go but i believe anything is possible through miricles. Please keep praying and believing. (even if you dont believe in the alternitive techniques they are trying, please pray for him)
post #135 of 190
Thread Starter 
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. B 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.
post #136 of 190
Thread Starter 
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!
post #137 of 190
I'm so glad to hear some more positive updates on sweet Aiden! He's still in my prayers too!
post #138 of 190
Thread Starter 
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.

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.

post #139 of 190
There's no need to explain or apologize for trying these alternative therapies -- it's the right thing to do, to give anything and everything a chance to help. Bless these weary people for their dedication. I'm thinking of Aidan every day... I will make these special pleas tonight, and then continue with light and love, as before.
post #140 of 190
Thread Starter 
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. C 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!

post #141 of 190
Thread Starter 
Sunday, March 30, 2008
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.


Saturday, March 29, 2008
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.

post #142 of 190
Originally Posted by blondrebel76 View Post
There are a million different emotions that are now forever associated with that sequence of events: anger, fear, hopelessness, distress, sadness, and likely many many more I have yet to discover. Consider how you felt when the worst moment of your life occurred. Now, multiply that by a significant number. How significant? I don't know ... maybe a googolplex? That is most likely how you would feel if your child ... your first-born ... your own personal miracle ... were suddenly in your arms and when you looked down, you saw death.
Oh that last entry was so touching. Here's FAITH for the parents to find strength in their love for each other. WISDOM for the doctor's to heal his tiny body. HOPE for the family in their time of need and PRAYERS for Aidan to successfully fight the battle of his life!
post #143 of 190
I dont know if Erin and Russell are familiar with this already, but there is a journal site called www.CaringBridge.org that is free to families. It is a wonderful place to blog your feelings and to keep the family current on updates. We have a site for Joshua and it is very therapeutic and helpful. More thoughts and prayers for Aidan and his family.
post #144 of 190
Thread Starter 
actually they do have a site at caring bridge but they switched over to a different forum, i think they keep switching because they have had some abusive comments in the recent past and the new page allows them to better filter the comments and such.
post #145 of 190
Thread Starter 
Monday, March 31, 2008
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.
post #146 of 190
I'm just trying to absorb all the details of this incredibly complex therapy... it's fascinating, and so hopeful. Please know that Aidan is still in our hearts.
post #147 of 190
Thread Starter 
As mentioned numerous times in previous posts, we are looking into Hyperbaric Oxygen Therapy (HBOT) for Aidan as a supplement to all his other regular treatments. We have seen multiple positive reports on how HBOT has a positive impact with the treatment of damaged brain tissue. We checked with the doctor here at Carolinas Medical Center and gave an absolute thumbs down to the idea of performing HBOT on Aidan. We started looking into other locations (e.g., Miracle Mountain) for treatment after Aidan goes home.

A friend of Erin's connected us to a lady in Charlotte that does HBOT for children with autism. Her friend felt we would be perfect candidates. After calling the lady, she was all for it and even offered the first week of treatments (2 sessions per day for 5 days) for free! She suggested we call Dr. C to get the prescription written, which we did and he did almost immediately.

We thought we were well on our way ... then we talked to our physiatrists. Neither were for the treatment. We spoke with Dr. Colleen (this is her first name ... her last name is German and a little tricky to pronounce) when we were looking into the treatment and looking for someplace to get it done. She wasn't fond of the idea. Dr. N "rolled her eyes and scoffed" at Erin. Dr. Colleen quoted a single instance where a patient died due to aspiration when the child was fed before therapy. In our honest opinion, one death does not a "bad report" make.

We wanted to start HBOT while Aidan was here at Levine, but there may be a kebash put on that. According to Dr. N, Medicaid will likely not approve transporting Aidan to and from HBOT 2x/day. She said it was "up to Social Services". She also feels that if we transport him even 1x/day for HBOT, then why should we have him here in the hospital?

Here is my take: HBOT has been done for years! The Undersea and Hyperbaric Medical Society (UHMS) has thirteen accepted indications for HBOT. Only one involves the brain directly, even though studies have been performed that shows it is effective in brain injury, cerebral palsy, and stroke patients. It's OXYGEN, people!

Needless to say, we have already contacted the lady who offered the HBOT and I asked her to be in contact with all parties involved. We'll also be in contact with Dr. C. Hopefully, we can take him while he is here. If not, he'll be going the day we leave the hospital
post #148 of 190
Thread Starter 
Friday, April 4, 2008
Therapies, Throwing up, and Thunderstorms

Today was a somewhat eventful day. Aidan was in Physical Therapy when he threw up suddenly. We're not sure what caused it: the fact that he had a feed at 8AM and went straight into therapy, Russell suctioning a little too deep, or a combination of the two. At least he proves that he has a gag reflex!

Then, Aidan got his serial casts on his legs this afternoon. As you can see from the picture, they are just like any other cast. The only difference is that these aren't being used to fix broken legs; rather, they are to reset his ankles so he will better be able to stand and, eventually, walk. He did not like having the casts put on, as they were really pushing on his ankle. They will remain on until Tuesday. After that, they may recast him depending on his progress after this round.

On the HBOT front, it appears we may be able to take Aidan while we are in the hospital at least once a day in the near future. We have to show we know how to suction and change his trach (the nurses have seen us suction, but they have not seen us change a trach here) and we have to have a car seat for him so we can perform the transport (will ask the vendor about that loaner seat Monday or Tuesday). Once one of the physiatrists talk with Dr. Corbier, we should be all set. We'll keep you advised.

To our friends and family back in OK, KS, MO, and TX, we have seen what all you have been going through with the weather. As usual, it's a double-edged sword: appreciative of the much-needed rain, but wishing all the other nasty stuff wasn't joining the party. We've had our share of rain here in NC, but not nearly as much nasty weather. Considering the drought that has been going on since even before we moved here, I definitely appreciate the wet stuff finally getting here. Be safe out there!
post #149 of 190
Thread Starter 
First an appology from me, i have had a long weekend helping my folks in the garden, so i havent had alot of time online. I am sorry for not posting updates sooner. But here are the last two i missed.

Sunday, April 6, 2008
Evan visits
Today my aunt, uncle and cousins came up to the hospital and brought Evan with them. Evan has been staying with them during the weekend and they take him to church on Sunday. This was the first time that Evan has really seen Aidan since the accident, 7 weeks ago. We were able to take him back once in the PICU, but it was only for a minute or two.

Evan was happy to see Aidan. He studied him for a minute or so and then got this huge smile on his face. The other night when I was working on Aidan's video, Evan was sitting in my lap and he kept waving to Aidan's pictures on the screen and kept saying "hey". It was cute.

Today made me sad though. I'm so used to telling Aidan to be gentle with Evan, and now that is reversed. I want the old Aidan back. I want him to run around the house jabbering nonsense and screaming. I want to hear him laughing and I want him to be able to play with his baby brother.

I always want what I can't have or what I'm not supposed to have yet. It was that way when I wanted a baby. We kept trying and trying and I'd cry and cry because I wanted a baby so badly. Finally, when the time was right we were blessed with Aidan. I just need to remember that God answers our prayers in His own time and in His own way. We may not like His answer but it's always what we need.

I just miss our old, boring, normal life- Staying at home and being lazy, playing with the kids on the weekend. I miss Aidan climbing up in my bed to snuggle with me when he'd wake up in the morning. I'm just feeling really down right now. Sorry to drag everyone with me.

We've ordered some silicone wristbands that say "Pray for Aidan" on them that we are going to be selling to help raise money for some of the treatments and for some equipment that insurance won't cover. When they come in, I'll have the info along with a picture. We got 5 different colors to choose from (royal blue, green, red, orange and navy.)

Please continue to keep Aidan in your prayers. He's made a lot of improvements and I'm hoping that we'll see even more once we start the hyperbaric treatments.

A gift from the Carolina Speed

The father of friend of Erin's works as a trainer for the Carolina Speed. He helped arrange for his daughter to do a fund raiser at their game last night. I also got to go to the game since her dad scored a pair of tickets for me and my wife's aunt. The fund raiser went well, though it was hard to listen to the video Erin created for the hour we were there before the game started.

Towards the end of the game, Ashlyn (Erin's friend) found me and told me her dad had something to give me. We went down after the game was over and he gave me a game ball (like the AFL, game balls lost to the crowd become souveniers). We then went down on the field and I got the ball autographed by all the players, coaches, and cheerleaders to give to Aidan as a gift from the team. When I get the, I'll post some pictures of the ball.

In an interesting twist, I found out one of the players went to NWOSU in Alva. I talked to him during the autograph session and told him I was getting the ball autographed for Aidan. He proceeded to tell me that his son was also named Aidan.

I plan on going to another game when my mom and brother come to see us from Oklahoma. I hope to take Aidan along so the players can meet him.

post #150 of 190
Sending prayers and vibes for Aidan and his courageous family! Such challenges & hard work for you all
My gfriend's granddaughter is 5 now, and she took her first steps the other day. To me, those kids are as heroic as any Olympic athlete
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