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prayers and vibes for my exbf and son - Page 4

post #91 of 190
Oh I so hope he is okay!!!

post #92 of 190
Thread Starter 
SUNDAY, MARCH 09, 2008 07:01 PM, CDT

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

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

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

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

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

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

I'll post more later.
post #93 of 190
Yes yes yes! That sounds so good! I'll be thinking of him and hoping for a smooth surgery tomorrow!
post #94 of 190
Thread Starter 
The surgery to replace Aidan's trach tube went great. They went up a full size, and you the difference in his breathing is noticeable.

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

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

-- Russell
post #95 of 190
Thanks for keeping us posted.
post #96 of 190
That's wonderful! Thank you so much -- I'm hoping very hard that the news keeps getting better!
post #97 of 190
Thread Starter 
TUESDAY, MARCH 11, 2008 02:16 PM, CDT
I don't even know where to start with this entry. Aidan had several storms overnight that weren't too bad. Mainly just the rigid posture/stiffening up. This morning when I got here he was having another storm. They are having a hard time getting the vent tubing to stay on the trach tube and it pops off continually.

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

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

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

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

post #98 of 190
I'm still praying for Aidan He seems to be making very small steps in the right direction though. It's going to be really long, slow and painful at times, but he's a fighter and I'm sure he'll keep on fighting every step of the way.
post #99 of 190
Well... for whatever it's worth, I'm glad to hear the doctor is being more cautious with the morphine. But it doesn't seem right that the treatment protocol changes with whatever doctor is on duty -- shouldn't there be ONE doctor who is the final authority, with whom decisions have to be cleared?
post #100 of 190
Thread Starter 
WEDNESDAY, MARCH 12, 2008 01:20 PM, EDT
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. C came into Aidan's room a little later this morning and told me a lot. Hopefully I got it all:

The central line had been removed recently due to Aidan having a high fever. When they pulled this, his fever started going down some. As a result, they cultured his blood and started him on antibiotics. That is almost completely cured
They are trying to get Aidan more awake. They feel this may help with the healing of his brain, but we are wondering how this is possible when he has 4+ hour storms
His Ativan has been moved to his G-tube along with some of his other drugs (Colace, antibiotic, etc.). They had also taken him off the Versed, but it is back on now.
Feedings have started again, and he will be on full feedings by tomorrow.
The MRI/MRS is scheduled for sometime tomorrow morning (not sure of the exact time, but it should be mid-morning unless an emergency pops up).
They have setup a protocol for administering certain drugs should a storm start lasting too long. They issue each drug then wait an hour before giving the next drug. The order of the drugs is: Ativan then Fentanyl then Propyphol (sp?).
Aidan is off the ventilator more now, though they may put him back on it of an evening. He still gets oxygen, though. I may try to hold him a little later today.
Next family conference is scheduled for midday Friday (11:30 or noon). I don't have a definite time yet, but may later today or first thing tomorrow.
Frankly, things have started to get more difficult for me. This Sunday will be one month since the accident. I can't help looking at Aidan and while thinking of how far he has come along, also think of how far he have yet to go. It is depressing, demoralizing, and just flat-out difficult to deal with all of this. While sitting in the room with him, his Aunt Regina, and his great-grandma and great-grandpa, I bowed my head. I could barely pray, I was so tired and emotionally drained. I am doing everything I can to remain strong and keep up my faith, but it has not been an easy week. Last family meeting, they were looking at two more weeks here. I'm really afraid that it is going to be closer to two more months. I know Aidan needs a lot of prayers, but please pray for me and Erin that we will be able to get through this very difficult time. Also, concentrate prayers tomorrow morning on Aidan that we will have a good result from the MRI and MRS scans.

-- Russell
post #101 of 190
Thread Starter 
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
post #102 of 190
I'm holding onto hope that Aidian's youth may allow his brain to rebuild... and oh, may there be some mercy from above.
post #103 of 190
Thread Starter 
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.

post #104 of 190
Sending prayers from Mississippi for your little boy, I am hoping that he will recover from this.
post #105 of 190
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.
post #106 of 190
Thread Starter 
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
post #107 of 190

Bless his heart! I will continue my thoughts and prayers for Aidan and his family.
post #108 of 190
Thread Starter 
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.
post #109 of 190
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.

post #110 of 190
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
post #111 of 190
Thread Starter 
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.
post #112 of 190
Thread Starter 
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.
post #113 of 190
Keep going Aidan!!
post #114 of 190
I'm so happy to hear some good news for Aiden! He's in my thoughts and prayers often!
post #115 of 190
I just feel so strongly that he's coming back to you -- it may take awhile, but I truly believe he's in there.
post #116 of 190
Thread Starter 
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.

post #117 of 190
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.
post #118 of 190
Thread Starter 

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!
post #119 of 190
YES! So glad to hear this positive sign!
post #120 of 190
Oh what wonderful news!!! I'm so happy to hear he's had a great restful night!
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