doctors appointments and updates

Aidan had two doctors appointments yesterday and one today. We met with the neurologist and one of the surgeons who did Aidan's trach and g-tube to discuss the Nissen procedure. Our neurologist wasn't feeling well, so he didn't really do an exam. He asked a lot of questions and said that Aidan is looking good. He's ordered another MRI, a SPECT scan and a 2-hour EEG. They haven't been scheduled yet, but it should be soon.

The surgeon wanted to discuss the surgery because he didn't think we would want to just jump into putting Aidan through an unnecessary surgery. From what we told him, he said that it didn't sound like Aidan has reflux anyway and the nissen wouldn't help throwing up. He was glad that I took the initiative in changing Aidan's formula. He also said that Aidan was looking very good. We weighed him and he weighs just under 35 pounds, so he's gained about 6 pounds since he went to the hospital last Sunday. We'll have to go back in June to have the g-tube resized but that will be an ongoing thing every 3 months as long as he has the g-tube.

A speech therapist came out yesterday to do her initial assessment and she is going to schedule a swallow study to make sure that Aidan is able to swallow different things and not aspirate them. This is a step toward getting him to eat by mouth.

Today was the appointment with the pulmonologist. This was the first time I'd met him and I really like him. He said that Aidan was a lot better than he had expected from reading his chart, and the fact that he isn't on a vent or oxygen dependant is great. He also said that he thinks Aidan will most likely move a lot faster than he had expected in getting the trach removed because he is doing so well right now. It's all good news to me and made me get teary. I'm so ready for his trach to come out. That will be a huge step.

We're doing a month of breathing treatments and then we'll go back for another check-up and the doctor will schedule a bronchioscopy to go in and take a look at Aidan's lungs along with some other things. The next step will be to get him a passy-muir or PMV. The PMV is a one way valve that fits over the trach and will allow Aidan to breathe in through the trach, but he will have to force the air out through his nose or mouth. This will allow him to talk or cry like normal. If he does well with that, then we can start putting a cap over the trach which blocks it completely. We've experimented with doing the capping while Aidan was in rehab and he did pretty well with it.

So far, everything is looking up. Aidan continues to surpass the doctors expectations, and we're seeing new things in him every day. Today for instance, I had a Thomas book that we had bought him the day before his accident and I took his hand to push the buttons on it that make sounds like the trains and he relaxed his hand so that I could help him push them again. He also rolled from his side where the nurse had propped him, to his back. He was well supported so it wasn't an accident. He also moved his mouth when Russell went in to give him goodnight kisses and squeezed his finger. It's little things, but those little things mean a whole lot to us.

I am so amazed at the power of prayer, and at everyone's outpouring of love and support for our family. Please pray that Aidan continues to supass all of our expectations and makes a miraculous recovery. God continues to prove to me every day just how great and awesome He is.
Bless you all!
~Erin

update

Since Saturday evening, Aidan has not had any episodes of reflux or vomiting. I decided to add some baby rice with bananas to his formula and decrease the volume of formula by the calories in the cereal. So far this has also helped him sleep better at night. He's still getting the same amount of calories but it's less volume and it's something semi-solid that his stomach can actually digest better. Liquids don't sit on your stomach the same way regular food does, and if someone were pushing your entire meal into your stomach in less than 2 minutes, it would make you sick too.

We still have the appointment with the surgeons to discuss the nissan procedure, but I don't think we're going to do it unless it's our last resort. I don't want to put Aidan through another surgery unless it's really necessary. If changing his diet will fix the problem, then that's what I'd rather do. It's been my plan all along to change it anyway- as I've said before, the formula he is on is nasty. All formula is nasty. The only good thing about it is that it is convienient.

Today is also our follow-up appointment with Aidan's neurologist. I'm not sure what to expect there. I'd like to see about getting a SPECT scan done as well as another MRI to see if there is any further damage. The SPECT scan is the one that shows the brain activity in color. It will help us get a better visual idea of the extent of Aidan's injury.

Russell's mom and brother head back to Oklahoma this morning. Please say a prayer for them that they have a safe trip. It's a long drive (about 18-20 hours), even though they are going to stop overnight.

We are trying to organize a golf tournament fundraiser for June. Russell has been working out the details so I don't know much about it. The bracelets should be here in the next day or so. I'll post a picture of them and post info about purchasing them as soon as they arrive.

Thank you everyone for your prayers and your efforts to help raise money for Aidan's treatments, gas to those treatments and special equpiment not covered by insurance. We would not be able to do this if it weren't for your generosity.

I'll post more later after we meet with the doctors.
~Erin

New blog address

I have setup a new domain name for the blog. If you now go to http://www.prayforaidan.com, it takes you to this blog. Eventually, I will work on turning it into its own stand-alone site.

--Russell

possible surgery

I got a call yesterday from the pediatric surgeons office. It seems Aidan's doctors have been discussing the option of him having a device called a "Nissan" put in his tummy to prevent the reflux that he is having. This device is usually put in place at the same time as the g-tube surgery, but it wasn't in Aidan's case. They want to do the surgery this coming week, and we have an appointment to see both surgeons on Monday afternoon, after our appointment with Aidan's neurologist.

I think the surgery is a good idea because Aidan is having multiple vomiting episodes every day. It still has a lot of mucus in it. I don't know what is going to make the mucus go away, but he just has SO much of it.

Russell's mom and brother arrived yesterday evening. I'm glad that they got here safely. We've missed them both so much, and our nephew, Seth, as well. It's a toss up. Being closer physically to one family over the other one. We had planned to get back to OK sooner, but with the whole job situation leading up to Aidan's accident and then the accident itself, nothing ever seems to work out.

I'll be able to post more on Monday once I know more about the surgery and get a chance to talk with the neurologist about things. I don't really know where things stand at this point. Sorry I don't have better news.

Please pray with us that this surgery will help Aidan's reflux problem and that we're able to get the secretions to dry up so that he is more comfortable. Thank you, everyone!

we're home.... again

I got Aidan home yesterday afternoon around 3pm. Dr. Black diagnosed him with tracheitis and constipation. Basically, Aidan has an infection around his trach site and it's been causing the increased secretions, combined with seasonal allergies, the extra mucous is collecting in his tummy and making him sick. He's been put on Augmentin for that.

Now with the constipation. We've been having problems with that since he was put on the formula, but a lot of the meds he is on add to the problem. We've got him on colace for that.

I took Aidan to his primary doctor this morning, and she gave me a script for Zyrtec, for the allergies and Zantac for the reflux problem because he is still spiting up or vomiting occasionally after eating.

His feedings have also changed and we've now dropped to only 5 feedings a day but we went up on the volume to work in dropped feeding and we're supposed to increase the volume gradually over the next week or so. The doctors and nutritionists think that Aidan needs more calories, so we'll see how he does on their schedule, but I don't want him to gain back up to almost 50 pounds either.

I'd like to get away from using the formula as the bulk of his diet anyway. That stuff is NASTY! There isn't any reason why I can't blend up his foods or make my own "formula" that has real food and vitamins in it that work for him and his needs. I'm still hoping that one day Aidan will be able to eat normal foods by mouth and not through a tube in his belly, although, I'm okay with the tube for as long as he needs it.

The trach is another story altogether. Aidan is able to breathe on his own when the trach is capped. He is able to swallow, and he coughs... really well. I'd really like to see the trach removed by the end of the summer. I'm asking you all to pray that Aidan continues to do well and is able to be decannulized by then too. I think it is just a source of irritation to him, both in terms of his health and his overall mood.

The hyperbarics resumed today. Aidan did really well, as he has been doing since we started. I went in with him today and he fell asleep while I watched a movie and kept an eye on him. I am so appreciative of everything that Dr. Rebecca is doing for us and for Aidan. For us to be able to do 2 sessions a day, we have to drive almost 3 hours a day to and from her location, so she has been working to help us raise the funds so that we can get our own hyperbaric chamber at home. I was absolutely floored by the cost of one of these units as it seems like just like everything else Aidan needs it's extremely expensive. We could buy a brand new vehicle or put a down payment on a house for what one of these things costs.

Other things that are going on right now--Russell's mom and brother are on their way here to visit as we speak, and should arrive sometime tomorrow evening. Our van has been acting goofy. It's a 2005 but it's got a lot of miles on it and today I felt what I think is the transmission starting to slip. The blower to the a/c fan in the front went out last summer and then the locks stopped working. We've been able to deal with that, but I'm just praying that the tranny doesn't crater on us. That would really be bad since it is our only vehicle. We're going to have to find another vehicle once Russell finds a job (which I hope is soon.) And finally, I'm looking at taking an online course in medical transcription so that I can work from home. Anything right now to help bring in more income will help, but I have to come up with the $1800 to pay for the course. I don't want to take out any loans right now (and I don't think I could even if I wanted to.) Anyway- we shall see how things go. Right now the most important thing is taking care of the boys.

Please pray that Russell finds a job soon, that we are able to raise the remaining funds for the hyperbaric chamber, that Aidan's trach will be able to be removed in the near future and that he continues to progress. Thanks to everyone for your love and support and the many, many prayers. We are so grateful to you all!

~Erin

Aidan is on his way back home

I just called Erin and she told me Aidan will be discharged at about 1:30 this afternoon and should be home by about 3:30 (we all know how long it takes to discharge someone from the hospital!). We'll get back into the swing of this with HBOT and everything else tomorrow. Aidan has an appointment tomorrow morning with his primary care physician (Dr. Pons), so myself or Erin will most likely post another update tomorrow after that.

link to additional pictures from newspaper article

http://salisburypost.mycapture.com/mycapture/category.asp?CategoryID=7199

This is the link to the page where you can find more pictures the photographer took during the newspaper interview.

Thanks everyone!

Minor setback not so minor

It turns out that the minor setback from yesterday was not so minor after all. Erin called this morning and informed me that due to the constant secretions and attention required to take care of them, they decided to move Aidan back to the PICU. In a strange twist of irony, he is in the same room he was in when he was admitted to after the accident.

At this time, they are doing chest x-rays to see if he actually has pneumonia (previous x-rays were to see if he aspirated and, if so, did that cause pneumonia) and blood cultures to see what is causing the high white blood cell count. They also have him hooked up to an IV for fluids.

When Erin came in to pick up some things so she can stay at the hospital, she informed me that Aidan weighed 28 pounds. This is low, but not low enough to be of concern; however, he has definitely lost a lot of weight ... quite a bit in the last day or so due to the vomiting.

Erin was told by Dr. Cacerras that we should not expect Aidan to be discharged today or tomorrow. Dr. Black comes in tomorrow, so we will have another assessment done soon. Once they rehydrate him and find out where the infection is coming from so they can start the antibiotics, he should be able to keep his formula down and we'll be able to come home.

A minor setback

Since Aidan came home Thursday, he has thrown up several times since Saturday evening. When he throws up, there is a lot of mucous in it. He also was running a low-grade fever. Erin called Dr. Pons and she said to take Aidan to the emergency room. She is there now with him.

She just called me a moment ago and this is what I know:

Aidan is not in the PICU ... he is in a regular room back at Jeff Gordon Children's Hospital and being held for observation. He does not have pneumonia according to x-rays taken this evening. They will run x-rays again to make sure. His white blood cell count is up, but this could most likely be due to the trach tube. The doctor asked Erin to give Aidan 5-10 mL of formula every 10 minutes or so to see if he tolerates it. She told me that he was tolerating it pretty well, but was about to go to bed. Feeding will continue tomorrow.

At this point, Aidan is set to be back home tomorrow, but it all depends on the next set of x-rays. This is a minor setback, as it puts a damper on HBOT and we may have to reschedule the appointment on Wednesday, but we should be back in the swing of things soon.

Article from the Salisbury Post

A journalist from the Salisbury Post came to the hospital a couple of days before Aidan was discharged to interview us. Below is the story that appeared in today's paper. I'll have to scan the pictures from the newspaper and add them later. Anything shown below in parentheses are corrections/discrepancies I have made to the article.

Toddler recovering slowly from near drowning

Sunday, April 20, 2008 1:11 AM

By Shavonne Potts

Salisbury Post

February 16 is probably a day Russell and Erin Wright would like to forget. It was the day they lost their son and found him — only to lose pieces of him again.

Aidan, just five days shy of his second birthday, nearly drowned in a family member's (somewhat accurate, since it was Sonia's boyfriend's house and he is practically Erin's step-dad) pond near Kannapolis.

The family had gathered at a home to celebrate Aidan's birthday when he wandered off. He was found sometime later, floating face-down in the pond. The family isn't sure how long he'd been in the water. There's about 10 minutes unaccounted for from the time he was last seen to the time they knew he was missing, they said.

"Everything went into fast forward and slow motion at the same time," Russell said.

It was Russell who dived into the water to pull his son out. By the time he reached Aidan, the toddler was blue and unresponsive and his eyes were wide open, images that Russell said are "permanently burned in my soul."

A phone call to 911 which took minutes felt like an eternity, Russell said.

Sonia Sinclair, Aidan's grandmother who is also a nurse, performed CPR until EMS arrived.

Erin said her mother closed Aidan's eyes and, while she tried to revive Aidan, he opened his eyes twice on his own.

Medical personnel could not immediately find a pulse. Before loading the toddler into an ambulance they worked for 30 minutes to resuscitate him, his parents said. He responded on the way to the hospital (at the hospital, not on the way).

"We thought it was going to be a day were going to celebrate," Russell said.

The day was a blur for them both, Erin said.

Good and bad days

Aidan has been recovering and undergoing rehabilitation at Levine Children's Hospital, a division of Carolinas Medical Center in Charlotte.

He was able to return home Thursday.

In a way, the family is still in mourning. Aidan is no longer their "rambunctious, curious, independent" boy who played with Tonka trucks and likes Curious George.

Aidan suffered significant brain trauma. He cannot walk or talk. His parents are unsure to what extent he can hear or see them. The portion of the brain that is damaged controls sensory input, sensation and perception.

There are good days and bad days, Russell said.

The family is just glad to be able to see him and "know he's alive," he said.

He works with speech, occupational and physical therapists two to three times a week, with sessions taking up three or four hours each day and spread across the morning and afternoon.

In occupational therapy, Aidan is working with his vision and sound. Therapist Ellen Hobbs purposely turns up noises like the radio and jingles a bell beside his ear. Many of the activities they work on are also for range of motion actions.

"We switch things up and change to different positions," Hobbs said.

During his sessions, therapists place Aidan on a "stander," strap him in so he won't fall and get him used to standing on his on feet. The stander looks similar to a mini gurney with a place for Aidan to rest his feet. The equipment is designed to increase muscle tone in his feet and legs, especially his tendons.

Physical therapist Anne Mumaw massages his legs to soothe any pain Aidan feels while putting pressure on his feet.

The stander also prevents any bowing or stunting of his bones, Erin said.

"The staff here have been nothing short of incredible. They have shown they care and want to see him do well," Russell said.

Dividing time

Erin and Russell divide their time between Aidan's therapy appointments and caring for his younger brother, Evan, who is 9 months old. However, one or both show up for his therapy sessions.

The sessions have recently included a tutorial for the parents that will enable them to work with Aidan at home.

He wears a (two) Clonidine patch(es) to work in conjunction with taking Valium to control the neurological storms he experiences.

His father explained that when he has a storm, his blood pressure and heart rate get elevated and the medicines help keep it and the seizures under control.

When Aidan was taken by ambulance the day of the accident, he had to be intubated and a tracheotomy tube was put in place. When doctors tried to remove the tube, he struggled to breathe, so they left it in place (the trach tube was added at the hospital after they tried extubated him and he showed troubles breathing on his own).

The family is also looking into Aidan undergoing hyperbaric oxygen therapy.

Some studies involving brain conditions have shown that pure oxygen pumped into the blood (at higher atmospheric pressures) improve the condition, Russell explained.

"We've joined support groups who recommend we do it two times a day," he said.

The hyperbaric therapy is not covered by the family's insurance.

According to an insurance oversight committee, this type of therapy is not on the insurer's list of approved treatments, he added. But it is where the largest chunk of hospital expenses will be incurred.

"We're looking at an estimated $1,500 a week," Russell said.

As to other expenses, the family said many of the bills have not come in yet and so they they aren't sure what to expect, though they do expect them to be high.

Making strides

Aidan's feet began pointing downward since most of his time was spent in a hospital bed.

He recently underwent serial casting, which is a non-invasive procedure where Aidan wears a well-padded cast that will help him have better range of motion and get his feet positioned to a normal stance.

It will also help to get him to the point where he can walk, his father said.

Aidan has made notable strides in what could be a lengthy recovery.

"We've come a long way," Erin said.

"He's our miracle. He's been giving us little miracles day-by-day," Russell said.

His parents said he sometimes follows people and objects with his eyes.

"Sometimes it's as if he's looking at you or he's looking through you," Russell said.

Aidan also seems to recognize their voices, Erin said.

"He's had one time where he smiled when the therapist touched his face," she said, stroking his cheek with the back of her finger.

He's also made efforts to lift his head, and has begun small mouth movements leading them to believe he's trying to swallow.

"We have significant hope that he is making progress," Russell said.

There are no concrete goals in this recovery process, except Russell and Erin would like to have a routine of treatment and therapy sessions for their son down pat by next week.

Outpouring of support

Although they accept what could be many months of recovery, Russell said they do wish for things to be as they once were.

"We want him to be our normal little boy again," he said.

As part of that routine, they'll also have to incorporate the care of younger son Evan, who has been spending time with an aunt.

It pains them to split their time between the two boys, but they are grateful for support.

"It's been a fortunate thing we've had a lot of family support," Russell said.

Erin's brother, Matt, helped build a wheelchair ramp at the family's house and friends have organized a donation table at Carolina Speedway in Gastonia (The table was setup at a Carolina Speed football game, not at Carolina Speedway).

Outfitting their home to accept the different equipment such as the stander, a crib and wedges to help with therapy are the biggest adjustments for the family.

The family expressed their appreciation for the many prayers, concerns and donations made to them. They ask that the prayers continue.

"We've had an outpouring of support. It renews your faith that there are good people in the world. It renews my faith that there are people willing to do a good turn for others," Russell said.

There is a Wachovia account in the name of Erin or Russell Wright set up to help with some of the family's medical expenses.

Russell explained there was some confusion about how to spell Aidan's name, so the account was put in theirs.

For updates on Aidan, the family maintains a blog about his recovery at http://prayforaidan.blogspot.com.

Contact Shavonne Potts at 704-797-4253 or spotts@salisburypost.com

AIDAN IS HOME!!!

Aidan is finally home after 2 months and a day of being in a hospital. We were supposed to be discharged from Levine around 10am but we didn't actually leave there until right at 1pm. We got our new car seat for Aidan and had to get it installed in the van, and we had to get all of his meds from the pharmacy.

We went straight to his first hyperbaric treatment. It went pretty well, and if he hadn't soaked his diaper and his clothes toward the end of the session he would have handled it really well. Aidan seemed to handle the pressure on his ears really well. So we're scheduled to do 2 sessions tomorrow, 1 on Saturday, 2 Sunday, Monday and Tuesday.

They are trying to figure out a way to get us a portable chamber at home, using the funds from HUGS and the other additional treatments we have lined up. That would definitely help with the travel time involved in doing these treatments. It's 45 minutes to and from the location. I'm sure that we'll have to raise some additional funds to facilitate getting our own chamber, but it would be well worth it.

The doctor said something that really made me feel very good today. She said that Aidan has shown a "non-traditional" response to his type of injury; meaning that he is doing much better than other patients she's seen with similar conditions. She said that she hopes and she really thinks that he'll continue to progress in this "non-traditional" way. It gives me hope to hear something like that come out of a doctor's mouth. Aidan has proven what a fighter he is. He overcame the odds that were against him and he survived near-drowning. Despite the brain injury, he is still fighting and I know that he will continue to do so. He's a tough, stubborn, little boy.

I wasn't going to drag this out because I'm exhausted, but I just want to thank everyone for their prayers.... the endless prayers, love and support for our family. I know that we wouldn't be where we are now without the power of prayer. God has truly worked some miracles through our little boy, and will continue to do so. We are so blessed to have so many people who love and care for us. Our journey is just beginning, so we hope that Aidan will continue to be in your hearts and prayers. Thank you, everyone!

love,
Erin

Evening Update on Aidan and HBOT Redux

Aidan had a pretty good day today. He went through his usual rounds of Occupational, Speech, and Physical Therapies. He was also finally fitted for his AFOs and will presumably have them by tomorrow.

I had a visit this morning from the home health nursing group. They brought in the portable suction and pulse-ox meter we will be using when transporting Aidan and taking care of him at home. They'll visit the house tomorrow to bring in and setup some of the more "permanent" equipment (oxygen tanks, supplies, etc.).

As stated numerous times previously, we are starting Aidan on Hyperbaric Oxygen Therapy (HBOT) on Thursday with his first visit as soon as he is discharged from the hospital. Our therapist already gave us 10 free sessions, which is equal to one week of therapy, but we wanted to get more sessions lined up before Aidan was discharged. You know, one less thing to worry about.

Erin has been in contact with HUGS for Near-Drowning Children since we got to Levine in an effort to get assistance in paying for some HBOT treatments. After relaying various pieces of information to them, Erin received word that they will pay for a month of treatment (40 in all)! Erin also informed me that efforts are currently in place to pay for another 30 treatments. This means 2 months of treatments taken care of already!

Like Erin said, in two days we start yet another new chapter in our journey with Aidan. Honestly, I don't know what to expect or hope for at this point. All I know is there will be a lot of adjusting going on for the first few weeks when you consider the nurses and therapists coming in and out, doctor's visits (I know we have 2-3 already lined up in the first week), and the simple process of getting into a routine at home. I am pretty sure Erin and I will be asking for advice from some of our new friends in the near-drowning (ND) community on how to make this transition as smooth as possible.

To those of you offering to help, we greatly appreciate any and all assistance you can provide. Continued prayers are welcomed and encouraged.

-- Russell

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.

I'll leave you all with a picture of Aidan I took Sunday evening after Nana gave him a haircut and he had a bath. His little cheeks are red because he was mad at me for moving him.

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

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

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

Evening update and my 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

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

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 put the info on here 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

some new pictures

Russell took a few pictures of me holding Aidan last night, and I thought I'd share them with you all.

The past two days Aidan has been rather agitated. His heart rate goes up and down and his cheeks are really flushed. He looks like he's crying most of the time. This started when they put the serial casts on his legs. I don't know if he's just frustrated and uncomfortable or what.

He rested well last night from what the nurses told me. They gave him some Ativan along with his other meds last night and he slept most of the night.

The physical therapist said that if Aidan is tolerating the casts well, they would like to wait until Wednesday morning to take the casts off. The plan is to get him into the stander as soon as they get them off to maintain the stretch in his calves and ankles and then see how he does from there. If he does well, they won't have to recast them. I'm praying that the casting works to help his ankles so that he doesn't have to go through this again. He just looks so uncomfortable right now.

Thank you everyone for your supportive comments and the continued prayers.
~Erin

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!

We have a discharge date!

Aidan will be discharged on April 17th. This means a week longer in therapy, but this is actually a good thing. We found out that Aidan will begin serial casting therapy tomorrow and the later discharge date allows them to properly assess him during this therapy.

On the HBOT front, they are checking with Risk Management regarding the ability to have us take him out of the hospital for therapy. Again, if it doesn't happen, we'll simply start when he is discharged.

Also, we have been assured that all the equipment we will need (save the medical car seat) will be ready for us when we get home. If the medical car seat isn't here by the time he gets home, we will buy a regular car seat based on our therapists' recommendations and use it until the medical car seat gets here. Medical car seats are different in that they have higher weight limits and other special modifications for added stability. They are also quite bulky and even a bit heavy.

We have two important meetings coming up. The first will be a meeting with the vendor regarding getting Aidan fitted for his car seat and wheelchair. The other is with the private nursing group that will provide home nursing care after he goes home. More to come later today!

What could possibly be harmful about OXYGEN?!?!?!?!?!

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. Corbier 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. Nelson "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. Nelson, 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. Corbier. Hopefully, we can take him while he is here. If not, he'll be going the day we leave the hospital.

Aidan's New Ride and Animal Therapy

Erin got some pictures from today of Aidan in his new "ride". We will not be taking this one home, but we will get one exactly like it. Unfortunately, the seats don't come in orange ... I already asked :( Oh, well.

Also, Animal Therapy came in this morning. A Sheltie named "Surfer" came to pay Aidan a visit. They put the dog up on the bed with Aidan and he laid still beside Aidan. Erin said that when the Occupational Therapist came in to work on Aidan, "Surfer" proceeded to lay over his belly and gave a look to say, "I'm not done with him". Erin caught a picture of "Surfer" with Aidan.