prayers and vibes for my exbf and son

FRIDAY, MARCH 14, 2008 12:34 AM, EDT
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

I'm holding onto hope that Aidian's youth may allow his brain to rebuild... and oh, may there be some mercy from above.

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. F) 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. C, 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

Sending prayers from Mississippi for your little boy, I am hoping that he will recover from this.

Oh this is so sad. My heart just breaks for this family. I hoped so hard that there would be a quick recovery... but okay, if it's going to take awhile, so be it. There's no giving up. Our thoughts and prayers will stay with Aidan as long as it takes.

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.

-- Erin

Bless his heart! I will continue my thoughts and prayers for Aidan and his family.

btw i have the link to the pictures, i just cant stop looking at them. i will send the link if you wanna see in pm but they are on myspace so i cant post them on the thread.

I admit I'm not very up-to-date on this thread and Aiden's progress b/c I haven't been online much at TCS due to personal reasons, and I've been involved in other things here and elsewhere. But I just wanted to say that I'm hoping & praying for the best for Aiden. Bless his little heart.

Get well soon, Aiden.

~KK~

Poor little kid, he sounds like a fighter. His poor parents, how stressful for them. I keep thinking of them all and sending lots of vibes that he'll show some signs if improvement. I can't believe it's been over a month now

17th-Mar-2008 05:15 pm - 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.

MONDAY, MARCH 17, 2008 09:47 PM, EDT
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. 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.

Keep going Aidan!!

I'm so happy to hear some good news for Aiden! He's in my thoughts and prayers often!

I just feel so strongly that he's coming back to you -- it may take awhile, but I truly believe he's in there.

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. B 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.

~Erin

You have them, and will for as long as you need them. Next time you get to hold Aidan, please give him a special kiss from all his friends here on TCS.

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!

YES! So glad to hear this positive sign!

Oh what wonderful news!!! I'm so happy to hear he's had a great restful night!