prayers and vibes for my exbf and son

[blondrebel76]

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.

~Erin


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.

--Russell

 

[marianjela]

Originally Posted by blondrebel76

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!

 

[marianjela]

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.

 

[blondrebel76]

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.

 

[blondrebel76]

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.

 

[carolpetunia]

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.

 

[blondrebel76]

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

 

[blondrebel76]

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!

 

[blondrebel76]

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.

--Russell

 

[catsknowme]

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

 

[blondrebel76]

Tuesday, April 8, 2008
reflections
I've spent most of the evening reading Samuel's blog. His early days in the hospital sound so much like Aidan's. I got to the point where Samuel's mom mentioned she spoke with an ER nurse who was there when Samuel was admitted. Samuel's blood ph was 6.9. Anything below 7.0 indicates that the body is dying. I've mentioned before that Aidan's ph was below 6.5. It wasn't even registerable because the lab value only goes to 6.5.

It makes me sick to think of how close we came to losing Aidan altogether. The doctor never expected Aidan to live. When I arrived at the hospital, I just knew that they were going to tell me he was gone. I'll never know everything that the paramedics, the nurses and doctors did to bring Aidan back. I'm not sure I want to know.

I think I'm doing okay most of the time, and then out of the blue I'll get a flash of Aidan floating in the water and I'll get the same sick feeling I felt when I realized that my baby was probably dead. I keep trying and trying to get past this. I can't change it.

These feelings sneak up on me when I least expect it. I'm just so SICK of hospitals. I want to get Aidan home and get back to our lives. We've got to establish normal again. I want both of my babies under the same roof in their own beds at night.

Oh, well... Aidan is doing well tonight. He's sleeping peacefully. They did an EEG today to find out if the startling that I've noticed is seizure activity or if it's just part of the storming syndrome. I'm hoping that this is just the progression of the syndrome as his brain tries to heal and "rewire".

As for the hyperbaric treatments, it looks like they will have to wait until we are discharged. Because it is considered "experimental" therapy for brain injuries they don't want to risk our insurance to refuse to pay because we take him out of the hospital. Regardless, Aidan will be receiving his first treatment on the 17th on our way home from the hospital. I just pray that we see some improvement. I'm also ready to get him to the neuro-opthalmologist so we can find out if and to what extent he can see. We'll have to find out more about that. Maybe we can get scheduled for that while we're here and take him to that since the hospital will actually transport him for that visit.

Please focus your prayers on these startle episodes that Aidan is having, pray that they aren't seizures and this is just his brain's way of healing. Please also pray that the casts have done what they were intended to do and that Aidan won't have to have them done again.

Thank you everyone!
with love,
Erin

 

[mews2much]

Prayers for him to get better.

 

[blondrebel76]

Tuesday, April 8, 2008
Evening update and Russell's own reflections
Erin called me and said she was having trouble getting online from the hospital, so she asked me to post today's update.

Two more small victories occurred today. For the first time in weeks, Aidan smiled. The Occupational Therapist was touching his eyes, ears, etc. then making Aidan touch those same places. Erin said she saw it in his eyes first, but then actually saw his mouth turn up in a little smile. The therapists also informed Erin that it will not be necessary to get a hospital bed for Aidan to sleep in at home; a simple foam wedge will work fine for elevating Aidan. This is a big deal, since Aidan and Evan will still be sharing a room when Aidan comes home. When you consider the size of a hospital bed and the fact that the bedrooms are not very big, knowing that this is not a necessity is a pretty big deal.

The serial casts will finally come off tomorrow morning, followed most likely by a long stint in the stander. The Physical Therapist said the back half of the cast will be retained to serve as a brace until the ankle-foot orthotic (AFO) braces can be ordered. The order has been placed, so hopefully the person responsible for fitting Aidan for them will be in by the end of the week.

Surfer the Sheltie came to visit again today and will be back on Thursday. Just like last time, Surfer laid his head across Aidan's belly. Erin helped Aidan pet his muzzle and even had him touch his nose. Aidan stayed relaxed through the whole thing, which is good ... especially when you consider we have Bear, Paco, and Max here at home. A new dog (Erin believed its name was "Abby") is coming tomorrow. I hope it's a chocolate lab; Aidan loved playing with Bear.

I got back in touch with the lady who made the connection with Aidan previously, mainly to deal with the nightmare that is filling out the North Carolina and South Carolina state tax returns (believe me, Oklahoma's tax return is a cake walk compared to those things!). Erin asked that I have her make another connection with Aidan now that he is at Levine. She said she would do her best and email us as soon as she made the connection.

On a personal note, I watched the YouTube video Erin made again and realized that I am still very much in the grieving process. As I watched the pictures from before the accident, I saw the "smiling eyes" that would greet me even on my most down days and instantly cheer me up. My son -- the one who is most the mirror image of me -- is now in the hospital and I don't know how he is going to turn out, even though I have faith that God is going to do what is best. What made me the most emotional, though, was not the before pictures. It was looking at the post-accident photos and still seeing the same smile in those eyes (when they were open) that, as far as I know, can't even make out who I am. When I see that, I can still hear him saying "Hey!". Right now, that sound is both the most wonderful and the most painful thing I hear in my mind.

I oh so miss my little man. Yes, I have my other little man in Evan who is loving and playful and so full of life and energy and I love with all of my being and will move heaven and earth to make sure nothing bad happens to him; however, I would put myself in PaPaw's pond in an instant if I knew it would bring Aidan back to normal ... all so I could hear him say "Hey!" one more time.

Thanks for taking the time to read this. I know many of you follow this regularly and even cross-post to message boards, etc. that you belong to. All of that is greatly appreciated. Continue praying for progress and success.

Thank you,
Russell

 

[bella713]

Oh these poor people, what a long hard road they have traveled and will continue to travel, my heart truly goes out to them, Many blessings for them

 

[carolpetunia]

Thank you so much for continuing to update us... I find it difficult to visit Aidan's site, for some stupid reason, so it's a little less painful if I can keep up with him here. Please tell Russell and Erin that our hearts are still with them.

Y'know, it may be that Aidan isn't going to "come back" -- but he's so little, maybe he will just "become again" instead. And that's okay, because with all the love and care and hope he is being cradled in right now, he will surely become just as wonderful a boy as he was before.

 

[blondrebel76]

Wednesday, April 9, 2008
The casts are off!
Aidan did really well while the PT cut his casts off. She said that his feet looked great and that he won't need to be recast. Thank God for that! They are doing what's called bi-valving, which means they are using the back half of the cast to act as a splint or brace and securing it with an ace bandage to keep his feet in that position until the AFOs are made for him.

We got him in the stander and gradually got him upright. He was a little upset at first, but eventually fell asleep in it. The PT said that getting it right the first time generally doesn't happen and she was very pleased that Aidan responded so well.

Thank you all for your prayers that the casting did it's job. We're one step closer to getting him standing and hopefully eventually walking again. Right now, he's asleep in his wheelchair. Therapy usually wipes him out.

I also got news from the doctor that the EEG did NOT show any seizure activity. Another thing to thank the good Lord for. The startles seem to just be part of the Autonomic blah, blah, blah Syndrome we like to call "storming". All I can say is at least he isn't posturing with the sky high heart rate and breathing over 100 breaths per minute.

Only 8 more days here! I'm so ready to get home. 2 months of living between hospital and home and my babies not being under the same roof is about to make me stir-crazy. I'm ready to get into a normal routine and spend time at home with my boys. We've got such a long road ahead of us. We are planning to take Aidan directly to his first hyperbaric treatment as soon as we leave the hospital. Please pray that we see positive results from these treatments. I don't really know what I expect, but I know what I'd like to see. I'd like for his responsiveness to improve and I'd like for him to be able to smile and laugh again. I want his vision to improve.

I wish I could say that HBOT is a cure all, but it isn't. It can do some amazing things for people as far as I've seen, and maybe if it had been done for Aidan as soon as he was stable we wouldn't be dealing with the amount of damage to Aidan's brain. We'll never know... I can only hope that it helps him. At this point any step closer I get to having the old Aidan back is a step in the right direction and is a miracle.

Thanks again everyone! I just want to end by saying that Russell and I really appreciate everything that you all have done for us. The continued prayers, love, support and generous donations. I have been trying to work on thank-you's to those who've donated, but unfortunately I lost part of my list. I'm trying to remember it or locate it, but I didn't want people to think that we aren't appreciative, because we are. I've been so overwhelmed by people's generosity and I really want to thank each and everyone individually, so I feel terrible that I lost my list. So, if you don't receive a thank you card from us in the next week or so, please, please forgive me and know that we greatly appreciate your kindness, generosity, love and support for our family.

Thanks!
Erin

 

[blondrebel76]

Taking the good wtih the bad ...
Aidan had a pretty good day today. Physical Therapy put him in the stander the first part of the day and then speech therapy worked with him. In between, Respiratory Therapy came in and actually put a Heat-Moisture Exchanger (HME) on Aidan's trach tube. They said he had a great response to it, which means we will be able to use that on him instead of the humidifier from time to time.

I had to leave at noon to get ready for an interview. I thought the interview went well, and they said I would hear something by 5PM today if I was going to go in for a second interview. Well, 5PM came and went with no calls from anyone other than the Social Worker. Guess I know where that job opportunity went.

Please keep up the prayers ... both for Aidan's recovery as well as my job hunt.

Thanks,
Russell

 

[glitch]

He's still in my prayers!! Is there a video on this thread of him?? I would like to see it if theres one out there!

 

[felinelady]

Sending some additional vibes your way

 

[blondrebel76]

Monday, April 14, 2008
preparing to come home
2 days left! I've been counting down the days until Aidan comes home. It's almost like bringing home a new baby, except mine is 2 years old and he weighs about 35 pounds. We're in the process of getting the boys room repainted and new carpet put down (long overdue), so it is chaos in the house. The new carpet will be installed Wednesday.

Aidan is doing well. His feet are great and he's been in the stander every day to stretch out the muscles and tendons that were so tight before. In OT today, the therapist had him sitting, supported, in front of a mirror. He doesn't have any head/neck control so she had to hold his head steady. He does pretty well with the position changes, and it gives him a chance to strengthen his neck, back and abdominal muscles by sitting.

During his afternoon therapy sessions today, a reporter from a local paper came to do an interview with us about Aidan. A photographer also came to take pictures of Aidan. We're not sure when the story will be printed, but we'll let everyone know when and we can post a link to the story on the paper's website.

I had an appointment at the Social Security office today to apply for SSI for Aidan. What a pain in the BUTT! I don't know what happened to the people that work there, but I think they were replaced with robots because they lack any personality, empathy or compassion. And did I mention how picky and technical they get!? And when was the last time a 2 year old had income? I don't know how many times I had to say, Aidan doesn't do ANYTHING on his own. No, he doesn't talk; No, he doesn't walk, run, sit up, stack blocks, etc. ; No, he isn't affectionate--- I don't even know if he sees me, let alone him being affectionate. After repeating this about a dozen times the lady again asks me in this rather surprised tone, "He doesn't say No, or shake his head... he doesn't run?" UMMM, NO! He doesn't. My child lies in a bed, or he sits in a special seat to support him or he sits in a wheel chair. He has to be positioned so that he doesn't develop sores because he CAN'T MOVE! I'd love for him to sit up in that bed and say "hey." But unless God works a pretty major miracle, I don't see that happening any time soon. After going through this and his extensive list of medications and doctors, I started to get upset. It took everything I had not to just sit there and cry. And the woman didn't say a single word to me about the fact that her stupid questions were upsetting me!

Okay, now that I've had my rant- I'm sure that not every single person who works for the Social Security office is like this.

We thank you for your continued prayers. Please pray that we see some improvements in Aidan once he starts the hyperbaric oxygen treatments. Also, please say a prayer for Evan. He's not been feeling well today and was running a fever. If he is the same tomorrow, I'm going to take him to the doctor. We appreciate all the love and support from everyone!

~Erin