prayers and vibes for my exbf and son

todays update from Russ:


Erin and I just had a meeting with Dr. B Here is what we can tell you:

As stated previously, Aidan will be "paralyzed" (i.e., drug-induced) until Friday. At this point, they will start easing off the drugs and begin assessing how well he responds. The paralysis is so the trach will "mature" (i.e, the skin surrounding the hole can get used to it being there) and reduce the chance of any scarring.

Aidan has been placed on Clonidine in an effort to further control his sympathetic storms. This is being done transdermally (like a nicotine patch), and the patch works for a week before it has to be replaced.

Erin and I will have to learn how to change his trach tube. They hope to have us watch Dr. H do the first one so we will have an idea of how to do this. Dr. B assures us that once we learn, that it will be easy to do and we won't think much of it down the line. The best thing is that after the first change, we'll be able to hold him!

Dr. B is looking at Aidan leaving PICU and moving to an inpatient rehab facility (we have firmly decided on Levine) by the middle to end of next week. Rehab time is still looking at 8-12 weeks, but he said to not be surprised if Aidan takes as little as 4 or as many as 16 weeks to get through this next stage of recovery. We hope to have him home and starting outpatient therapy by Evan's birthday (June 22).
We have another family conference at 1PM on Friday. Dr. B wants to do these on a weekly basis for as long as we are at the hospital.

todays update: sounds like the stress is really getting to the family now. Not sure if Erin or Russ wrote this, couldnt really tell and i missed them online because i had a ton of errands to run today.


10:15 AM -- Russell leaves for two interviews. He doesn't return until after 4PM. Erin has to stay in the sleep room "pretty much" all day (see next time stamp).

Noon -- After Evan went down for a nap, Erin goes to see Aidan. His nurse lets her know that they had taken him off of the medicine that was keeping him paralyzed. The reasoning behind doing this was because Aidan has a pretty large air leak around his trach and they are hoping that with him breathing more on his own it will help "seal" that leak. They also lowered his sedation meds. He was doing really well this morning, and was really calm this morning. When Erin was back there his heart rate was low and he was resting.

Sometime between Noon and 4PM -- The people from the Rehab Center come in to do an initial assessment. The case manager couldn't tell Erin for sure that Aidan would be accepted into the rehab program. They said the call was up to the doctors at the rehab.

4PM -- Russell gets back from his interviews (both went well, but he is leaning toward the latter one since it has the possibility of going permanent). The nurse comes in a little later to tell us that they took Aidan off the ventilator at around 3 and that he had been doing pretty good on his own, but was having some storming episodes. Erin goes back to see him, while Russell keeps an eye on Evan. Nana, Uncle Matt, Aunt Bev, and Mamaw arrive a short time later.

5PM -- Erin comes in with dinner and lets everyone know that Aidan had been having the storming episodes. The first bolus of Ativan was given at that time.

9PM -- After trying to feed Evan baby food, getting him to take a bottle instead and finally getting him to fall asleep, Russell comes to Aidan's room to check in after hearing Erin was crying. Aidan's heart rate was well over 200 again, and his respiration was over 100! This had been going on for 2 hours (2 hours previous, his heart rate was at 180). He was posturing severely (i.e, very rigid) and red as a beet (remember, elevated heart rate = elevated temp). Nana is holding one of Aidan's hands, while everyone was wondering why the hell nothing was being done. Russell was ready to have malpractice lawyers on speed dial and just about ripped the nurse and respiratory therapist (RT) on duty a couple of new bowels until Erin proceeded to rip him one and accuse him of being more concerned with listening to the Bedlam basketball game online (Pokes lost 68-56 -- darn) than Aidan's condition (for the record, Evan was fighting sleep and Matt doesn't do well when the kiddos are crying). Aidan's nurse proceeds to get on the phone in an attempt to get Dr. B in STAT.

9:30PM -- Russell comes back in to the room after a few minutes. Dr. B is there. He explains that he feels terrible about what is happening to Aidan, and can only imagine how we feel. Russell apologizes to the nurse and the RT, and the nurse proceeds to start crying not because he hurt her feelings, but rather because she feels as helpless as we do (it doesn't help that she, too, is pregnant). The RT is even tearing up. Obviously, the past 4 hours have taken an immense toll on everyone. Dr. B assures us that Aidan is not getting any further damage from these storms. the "secondary brain damage" referred to in many of the documents we have read about this condition would only happen if he was not getting oxygen to his brain. His oxygen saturation has been at least 95% since they revived him. Dr. B increases the drug dosages again, and orders boluses of Ativan to be issued every 2 hours.

10PM -- Erin leaves to go home after Aidan calmed down.

11PM -- Russell goes to Aidan's room to keep vigil. He was having a storm when he came in, but has since calmed down. His heart rate is back down to the 120 range and his breathing is much better at 40 bpm.

Everyone who has been keeping a prayer vigil over Aidan, we ask that you concentrate your prayers on ending these sympathetic storms. We will not be able to make ANY significant progress until those are COMPLETELY GONE and he is off the ventilator. We don't care what the intake people said about it being likely that he may not be admitted ... we want to leave no doubt that he is ready to go when the time comes. We can't even begin to describe how hard it is to watch him have these storms. Imagine the worst temper tantrum a child can have and multiply it by at least 20. The sad thing is that he can't control them and we're all helpless and can only sit and watch.

We appreciate everyones continued prayers. With them and God's grace, we've gotten this far. Things usually get worse before they get better, so we're hoping and praying that this is just the worst of it.

Poor little darling is fighting so hard The stress must be absolutely unbearable! I'm continuing to pray for the wee man and I really hope that his episodes stop soon.

3am update: of course i was asleep when it was posted but here it is now.


No, I'm not going to break into the Matchbox 20 song "3AM", but the time stamp is appropriate for how things have been so far today.

I was in Aidan's room maintaining my vigil when I fell asleep just after midnight (and listening to "He's My Son" on my cell phone and bawling my eyes out). At 2AM, the nurse had come in to start her follow-up on Aidan when I heard one of the unmistakeable tones coming from the many machines around him. I asked the nurse if she did something and she said she had put mouthwash in his mouth. The pain from this (Aidan has bitten his tongue a few times) set him off into a storm. She spent the next hour trying to get him to calm down and was overall unsuccessful. Once again, his pulse peaked at 200 and respirations were consistently over 100.

About 45 minutes later, I went up to his bed and attempted to calm him by rubbing his leg and talking as softly as possible to him. That didn't help matters much. I told the nurse I was going back to my room; I couldn't stand seeing him like that. I tried to sleep, but it was more in fits and starts until the nurse called and told me he had settled down. At that point, I finally got to sleep.

Fast forward to this morning. I went to see Aidan when I got towels so I could take a shower and he was, once again, having a storm. This time, the nurse was telling an EEG Tech what meds Aidan was on (He'd make most rock stars green with envy when you start counting the number of drugs he's on ... wow!). She proceeded to tell me that he had been in this storm since she came on at 6AM. At this time, they are preparing an EEG while it is happening to find out if the storms have actually turned into seizures. they also have decided to put Aidan back on the Versed, since multiple boluses of Fentanyl and Ativan really haven't had much of an effect on him.

Pray that these storms are still storms and not seizures. If they are seizures, it will be a major setback.

Now that I think about it, I guess Rob Thomas actually did write an appropriate lyric in that hit song:

well I can't help but be scared of it all sometimes

It's so hard for me, a total stranger, to hear this and be unable to do a single thing to help... I can't imagine how helpless Aidan's folks must feel. Please give them our love.

i always do, i pass along any messages. i am so scared for the baby, i hope and pray things turn out well, but i see a long road ahead. i had a friend in college who as a baby had the same tragity and i look at him and can only see sadness ahead for Aidan and his family. i am so scared everytime i hear something that i have to take a deep breath, afraid of what i am going to hear next. i pray that day never comes, but i still have that fear in my heart. Russ and Erin tried for so long before they had Aidan, she was PCOS positive(as am i), so i know this is extra hard for them, to have your dream finaly come true then to have something like this happen is unimaginable to say the least.

Here is a quick update on what is up right now:

Dr. C looked at the EEG and informed us that the scan showed more activity than the previous scan. This is interesting to note, especially since he is on even more sedation than his previous scan.

They are continuing to increase the meds again (Versed, Ativan (UPDATE: Aidan is no longer on the Ativan. It was replaced by the Versed, which he was on before), and Fentanyl) in an effort to better control the storms. We realize they likely can't completely stop the storms. Also, he is hypersensitive to touch. The nurses told us that even when they try to take his temperature under his arm, it does not take much to get him to go into a storm. Fortunately, they have been able to get enough meds in him to keep his heart rate under 180.

We are waiting for the nurses to finish rounds before we go back in to see Aidan again. After that, we'll likely head to the house so we can get a decent night's sleep. Since we have the meeting tomorrow morning, we want to make sure we are well-rested.

another update:


We had another family conference this morning. Highlights:

Monday, they are going to insert a different trach tube. Aidan needs a longer tube because of his stature (he's barrel chested). They've ordered several different sizes and will try to get the best fit. They will be doing this under general anesthesia again and it will require that he is monitored for another week after the procedure. This also means another week before we can hold him.

Aidan has developed a sinus infections because of all the tubes and stuff and they are starting him on an antibiotic today to deal with that.
Dr. C would like to get another MRI next week along with an MRS. He reiterated the fact that what damage we are seeing in the brain (the hypoxia) has still only shown up in the diffusion MRI scan. For those who are not aware, a diffusion MRI creates its images by measuring the amount of oxygen in the water molecules within the brain. The MRS will give them a better idea of what the prognosis is. Dr. C did say that the areas that are hypoxic are reversible. The next MRI will give definitely give us a much better idea of what we're looking at.

Some new drugs are being added to the fray (Dantrolene and IV Clonidene along with the Clonidene patch). It will be another 72 hours or so for them to really access the effectiveness of the combination of medication. This is really all trial and error.

Aidan has started receiving feedings through his G-tube (they will also be able to start giving him some of his long-term medications through the g-tube as well)

Charlotte Rehab has not been cooperative. They said they would only take him for 2 weeks, and that would pretty much be to show us how to care for him. Needless to say, Dr. B was livid! He has suggested we start concentrating on rehab locations out of state again. Russell had got a call from the Atlanta rehab center and he found out that they have scholarships available. The social worker is also going to look into other options within NC, the main one being Pitt County Memorial Hospital in Greenville, NC.

Dr. B also wants to try to start weaning Aidan off of the sedatives (fentanyl, versed, etc) again, because he will not be able to go to a rehab facility on these medications.

We are looking at probably another 10 days to 2 weeks here in the hospital, at least. This is just taking a lot longer than any of us anticipated. Had Aidan not started having these sympathetic storms, everything would be a lot different.


I (Erin) just wanted to add that everyone here at the hospital has been wonderful. The nursing staff, the respiratory staff, the doctors, they've all been doing a great job. I know that this is stressful on them as well. I can tell that they all really care about Aidan, as I'm sure they do with all of their patients. This whole thing is just indescribable... the range of emotions that I feel. I go from guilt, to anger, to just sheer depression all in the same day, several times a day. I don't know that I'll ever understand why, or how- I just have to pray and trust that he's going to get better. It is very frustrating, though when a rehab facility that deals with brain injury doesn't think that your child is treatable.

On another note, Russell had another job interview this morning. He could possibly know something today. As for the interview that he had last week, it could be next week before he hears anything.

For now, this is what is going on. Aidan is currently calm and the symptoms of the storming episodes are under control. His heart rate is around 110 or so and his breathing is good. It's a little fast because of the trach (which is why they are changing it). He seems to be resting comfortably right now. We're just continuing to pray that these storms disappear and in the meantime we pray that the doctors have found the right combination of medications to control the symptoms of the storms

Focusing all my hopes on an end to Aidan's stormy weather...

SATURDAY, MARCH 08, 2008 05:31 PM, EST
Today seems to be going pretty well. Aidan has been taken off of one of the sedatives (Fentanyl). They've started him on Methadone to deal with any withdrawal symptoms he might have which could trigger more storming episodes.

He's had a few mild storms today, but they haven't been nearly as bad as they have been. He goes into them rather quickly and just as quickly calms back down.

They will start weaning the other sedation med (Versed) tomorrow. The plan is to do it slowly, although I'm not sure how slow they are talking.

Aidan will go back under general anesthesia on Monday (not sure what time yet) to replace his trach with a larger one. This should solve the problem he's having with the leak. They are putting in one that is more custom fit for him. I think the doctors underestimated how big his chest/torso is for his age.

He's been resting comfortably for most of the day, but did have a slight fever a little bit ago. He is on antibiotics for the sinus infection as well.

Evan has gone home with my aunt and cousin. I decided to transition him to formula so that it would be easier for others to take care of him. They all but ran out of here with him. They like to spoil the boys. It's hard to be away from either of the boys, but it's nice to have a little time to myself (even if only for an hour or so).

If Aidan is still resting well this evening, I think that Russell and I are going to try to get out of the hospital for a little while. I'm not sure what we'll do, but Aidan is being well taken care of and the baby-hogs have Evan (you know I love you!).

We'll update more tomorrow. Thanks for the continued prayers and support. Love to everyone!

~Erin

Oh I so hope he is okay!!!

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.

Yes yes yes! That sounds so good! I'll be thinking of him and hoping for a smooth surgery tomorrow!

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

Thanks for keeping us posted.

That's wonderful! Thank you so much -- I'm hoping very hard that the news keeps getting better!

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.

~Erin

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.

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?

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