Update: Brian O'Neill

This is Mindi, Angie’s sister. I am updated the post for Angie as she is unable to access a computer right now. I have briefly talked with Angie, so I apologize if some information is not accurate. Brian was having uncontrollable seizures this morning from 8:00 am to 12:30 pm. There was nothing they could do to stop these from happening. Even with the help of hospice and some other interventions, they would not cease. They took Brian to the hospital for this reason and soon after the admission, they got the seizures to stop with the help of Morphine. He is now a patient at St. Francis Medical Center in Peoria, IL (I am assuming, as that is where he always goes). He is now heavily sedated with the medications to have his body under control. His vitals are pretty good still, his blood pressure is normal but he is running a temp and his heart rate was 160 at the time of admission. I do believe his heart rate has come down slightly and his respirations have slowed down as well due to the medication. They have tossed around the idea of a PIC line to administer medications but the doctors and hospitals know the family’s wishes at this time for any other measures. They do want him to be comfortable and peaceful though.

The boys are with my mom, heading to Biehle tonight to return to Peoria tomorrow evening. We got to spend the weekend with the boys and had a wonderful birthday celebration for Grant as he turned 6 on Saturday. I think the boys have had a wonderful, enjoyable weekend. They got a little spoiled though. We took them to the city museum in St. Louis on Sunday and today they got to go to a place called incredible pizza where they rode bumper cars and played a lot of games. They have had a blast and it is such a blessing that they were not at home to witness the past couple of hard days that the O’Neill family has had. My mom will be staying all week in Peoria and longer if needed to help out Angie with the boys, so they are in good hands and will be taking care of with no added stress on Angie.

To the entire O’Neill family, we are praying for you. You have people all over this country/world praying and willing to help in any way possible. God will provide, weather it is for Brian to continue here on earth or for Him to provide you with strength during this though time, God will provide. Our God is an awesome God and remember to Keep Believing. We love you all.

night shift

Last night, Brian was awake again... all night. He slept from around 10am to 2:30 or so on Saturday afternoon. Up all night Saturday night. He slept again on Sunday morning from 7:00 to 11:00. However, we did not give him any more of the Ativan/Lorazapan, so he is no longer having the jerking motions and hallucinations and sudden hanging-on-for-dear-life urges. So, when he is awake, it is a bit more peaceful.



We gave him some more Oxycodone to see if he would sleep again as that seemed to do the trick on Saturday morning. It did nothing. We have not tried the Haldol yet as we really would rather him sleep at night instead of during the day. We may try tonight if he does not sleep later.





Today, he ate almost nothing. Same thing yesterday. He is drinking about 20-40 ounces per day. He is outputting WAY more than that, so I am not really sure what that means. One thing that could be attributing to that, though, is that his shunt from his brain would be draining the excess spinal fluid into the body which eventually needs to be voided.





Last night, Sean, his brother, and I bathed him. It was challenging, but we got it done. Brian is pretty much totally unstable on his feet at all now. He could not stand without total support. He felt like he was falling a lot. I had to lift his feet to get him into position while Sean would move him to and from the commode to the bed and back. He lays very sideways in bed as his sense of balance is distorted, too.





His speech is pretty poor. His voice is quiet and he makes little sense. The beginning of the conversation is okay, but he trails off to something you cannot understand or cannot follow. He wants so much and tries to be a part of the conversation, though.





He has been vomiting quite a bit, too. It is definitely worse after he has been readjusted in bed or if he has been up and down (like after the bath.).





Brian needs constant supervision as he often tries to get out of bed. I don't think he would succeed as he lacks the strength, but he often states how he is going to go to the bathroom, to bed or to take a shower while pushing his covers to the side. We have determined that the night shift is exactly that, too - a watch and not a sleep session unless he starts to sleep again.





I slept the whole night through last night as Sean was here and I knew he would know exactly how to handle Brian. I was AMAZED this morning when Sean informed me that Brian did not sleep at all and talked the whole night through.





The boys are in St. Louis with relatives having a grand time. In their first afternoon/evening, they had a birthday party, an Easter egg hunt, a dance session on the driveway to Crazy Frog, a sidewalk chalk fest, cake, party favors and a game of Ghost in the Graveyard. Today they went to the City Museum, then played Light Sabers and swords outside this evening. My family is giving my kids exactly what we need right now while Brian's family is taking care of all our needs on the home front.





Doesn't this picture of the group celebrating life and birth with my boys melt your heart?

It does mine.

The only thing missing is their Mom and Dad. That breaks my heart.

KEEP BELIEVING

Eyes Wide Open

Since my last post, Brian has become increasingly confused and fidgety. He had not slept at all until about 9:30 this morning. That means from 9:30 on Wednesday morning to 9:30 on Saturday morning, he had slept a total of about 5 hours.

Upon hospice orders, we gave him Lorazapan/Ativan to help with restlessness. It appears after two night of this and increased doses of Lorazapan/Ativan, he is having an exact ADVERSE reaction to the drugs. Within a half hour of the dose, he is even more jumpy, fidgety and agitated than before. An increased dose simply exacerbated the problem, exponentially. We are now moving to another drug called Haldol. See ya later, Ativan.

Some very loving and caring relatives stayed the night last night so I could sleep as I was supposed to take the kids to their soccer games and to meet my mom to get the kids to St. Louis today. Well, when I realized Brian hadn't slept at all, I woke around 4:00 and laid with Brian, praying for peace to come over him. It was as if every time he would start to fall asleep, he would jerk and jump and convulse a few times and then his eyes would roll and he would start talking again over and over again.

Yesterday, Brian had a sudden surge in appetite. He ate a hamburger, half a milkshake, some sausage, an egg, a piece of toast, a pancake and some vegetables. He also drank quite a bit.

As of right now, my boys are in St. Louis being spoiled rotten by aunts and uncles. There is a birthday party scheduled for Grant and I truly believe this is the best place for them. I can't believe how much I relaxed and how free I felt knowing they were with people who know them and love them and are keeping a constant eye on them for a few days. It is liberating for me, so thank you to those of my family that I know desire to be with Brian and me, but are filling the needs of my children which is therefore helping Brian and me. I hope you have fun doing it.

Right now, Brian is sleeping peacefully for the first time in a few days. Tonight his brother is going to stay over helping out. I intend on cleaning up Brian and changing his bed. It is a two person job and a complicated one at that.

Well, that is about it for now. I feel terrible that I don't have a birthday post for Grant. I have it written, but have pictures that I need to insert as well. Maybe I will get it finished later.

I apologize this post is a bit all over the place. The last two days have been exactly that - all over the place.

KEEP BELIEVING

sleeeplessness

Brian's decline seems to continue.

Last evening and night he had several issues with vomiting. He is drinking less and not outputting very much. Not to be too graphic, but he only pees about twice a day and hasn't had a BM since Sunday. Also, since Sunday he has only taken in about 8-20 ounces of fluid per day and about the equivalent of one package of Ramen noodles or half a sandwich in any given day. I offer every and anything to him as does anyone. He is just not interested in food or drink. For Brian not to drink shows serious signs of a change. He normally drinks about 64 ounces of fluid a day.

Brian is becoming weaker and less stable. He can not walk even a few steps anymore. He needs help getting in and out of bed and his chair. We take the wheelchair to and from the hospital bed to the La-Z-Boy now. When he does eat, it is in bed or in his chair. He no longer attempts to make it to the table.

Last night he became incredibly confused talking about the "help desk" at one point in time. Also, he and Sean and Murph - his brothers - were doing something related to cash. At one point in time he was doing a project for which he needed scissors. When I told him I was not getting him scissors, he got irritated with me and told me to stop talking to him like he was stupid. I felt bad and suggested he work on it later instead.

Brian seems to be fighting sleep like he did this night in February. I have given him a few different drugs to attempt to assist him with this. It seems like EVENTUALLY, when he finally stops fighting it, they work. He was up most of the night last night very restless. Trying to get out of bed a couple times, asking for his IPOD, trying to control his IPOD with the TV remote control, turning the TV off and on, looking around for the source of what he thought was a strange noise, etc.

He finally fell asleep around 10:30 this morning.

Brian's parents have spent the night every day this week. Brian's Aunts and Uncles are coming to the rescue this weekend while his parents attend a funeral. I have decided to send the boys to St. Louis to play with some cousins and aunts and uncles in lieu of staying around here. This is a tough decision as I do not know what phase Brian is entering and how much longer he has. Still, I think, with it being Grant's birthday and a couple days off school, they can have a nice time being spoiled and distracted in St. Louis. I pray it is the right decision.

Everything in me tells me this time is it. I know there is no way of knowing for sure. I spoke with his hospice nurse this morning to inform her of Brian's current condition. She suggested increasing some doses of Lorazapan which can help with vomiting and restlessness. The suppositories will also be effective in managing this. She stated, however, that we need to be prepared that Brian's confusion with his bodily function needs, his instability, his restlessness, his weakness and his lack of appetite are all signs of his entering a final stage of life. Not that we haven't experienced this before, but this week we have seen a continual decline in Brian unlike the other times.

Please remember that Brian loves to hear from you - even if you have written in the past - especially fond memories:

brianoneill1972@yahoo.com

I don't know how to creatively end this post.

Please pray for us. I just want the peace and love of Jesus to surround us -ALL of us - including every one of YOU - in this time.

KEEP BELIEVING

weak and weak

The last blog entry I wrote, I did so in a hurry and did not proof it, or 'do my REVISION stage' as Gavin calls it in his own writer's workshop. When did first graders learn about REVISION??? Anyway, as I re-read it, I had to laugh at my own haste and the following sentence:

'We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.'

I would like to clarify, that I, indeed, meant I would like BRIAN to try the suppository and not myself.

By the way, he did and I think it worked.

Brian is doing much better today. He has not had any vomiting fits for the last day and a half now, which is, naturally encouraging. However, he is incredibly weak. He is quiet and a tiny bit withdrawn. He is upset regarding all the "fussing" over him - all the hovering when he gets up to walk to and from his chair, all the offers for food all day, all the "are you doing okay's?", all the hullabaloo. I explain why - he hasn't eaten much, he just about falls when he goes from point A to point B, he is weak, etc. He understands, but isn't happy about it.

Many of you asked about more hospice help. Until Brian can come to better terms with what is progressing and his weakness and instability, I don't want to bring in others to do what I can do. He WANTS to use the stairs and share a bed. He WANTS to take a shower. It kills him that he cannot. I don't want to bring in someone else to take care of those few things that I can do for him. I can clean him for now. We have a hundred family and friends that can come and spend the night to help out. We are going to take up those closest to Brian that love him the most before hospice help for such intimate functions. There may be a time when I need that assistance, but right now, I want to help Brian ease into this transition with as much dignity as possible. Does that make sense?

The boys are off school Monday and Tuesday, and we were supposed to try to go to St. Louis for an extended weekend. I do not see that happening unless Brian shows considerable improvement. His movement in any given day consists of getting out of bed and walking to the bathroom. Then he walks to the family room to watch TV. Then he walks to the table to eat lunch. Back to his chair. Back to the table to eat dinner. Back to the chair. Up to go to the bathroom and bed in the evening or night. That is it, and it takes a lot of effort and assistance for that to happen. Doing all that in another city doesn't appeal to me right now. Putting him in the car for 3 hours by myself isn't something I am willing to tackle given his current state. I would much rather be at home where we have what we need in case of emergency. Although, hospice has said they would give us support in any city we chose to visit, and we are coordinating it just in case. If it is something Brian feel passionate about, I will not deny him that and I will figure out a way. I know there are many that would assist.

Grant's birthday is Saturday. We are thinking of sending the boys to St. Louis anyway so that they can have a distraction and some time away from all this. I am not sure exactly how we are going to handle the timing of all that yet. We are waiting to see how Brian is doing each day.

Well, once again, the time has escaped me. And my typing fingers are keeping up my sleepy hubby. I will write more tomorrow.

KEEP BELIEVING

dizzy and sick

Brian awoke on Monday morning and vomited right away like he has been doing every morning for the last week. Most days this lasts until around 11 or earlier. Then he is fine. He has been getting a tad weaker - probably due to not eating much and small progression. However, on Monday, he suddenly lost his balance around 9:45 and vomited all day - about every 20 minutes until around 3. Then he stopped vomiting for a few hours until we moved him to the hospital bed around 8:30. He was unable to walk without significant assistance and even then, we were pretty much holding him up. There was no way we were going to get him up the stairs. He was not happy about the decision, and after a few caddy remarks, he agreed - JUST FOR ME. Whatever. I will take it.

Anyway, he began vomiting again around 8:30 and continued to do that every half hour until around 10:00. He fell asleep around 10:30 and slept most of the night. I lifted both the bed rails, put the bedside table next to one side and slept on a mattress next to him on the other side. I did this so he would not unexpectedly try to get out of bed in the middle of the night without my hearing him as has happened in the past when he was not in a good condition. So, I slept rather fitfully afraid of the above circumstance occurring. He wretched and coughed a couple times throughout the night, but slept pretty well, I think, all in all.

This morning, he woke and was extremely dizzy getting to and from his chair. He has not had any more to eat than 1-1/2 Ritz crackers since last night. He feels like he is going to vomit just about as soon as he takes a bite of something. Naturally, this makes him weaker. He vomited twice today as well. It is nothing more than stomach bile and whatever water he recently drank. We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.

One big issue right now is getting him cleaned up. He has not had a shower or shaved since Friday due to his condition. He would like to, but he is unable to get up or down our stairs to do so. Even if we did have a way to transport him up and down the stairs, the wheelchair doesn't fit through our bathroom or bedroom doors, so no matter. I guess I will need to sponge bath him as best as possible soon.

He hasn't been out of his chair for any reason as of yet today, so I have no idea how his stability will be tonight.

And now I just looked at the clock, realized we have to leave for soccer in 30 minutes and I need to feed the kids, so that is all for now.

KEEP BELIEVING

wit and wisdom

As promised, I have decided to bequeath you with some Angie wisdom and wit.

I was going to start with my evaluation of The Bachelor, ABC's ridiculous reality show. I can think of nothing more UNrealistic than this reality show. A man speed dates several women, makes out with most of them and in 6 weeks' time falls in love with several, proposes to one and usually breaks up a few months thereafter. I refuse to watch this show as I believe it exemplifies perfectly what is wrong with our relationships and marriages today - a lack of commitment and earnest effort towards making things work. Anyway, I did attend a bachelor party - or a Bachelor VIEWING party. I went to make fun of my friends who actually DO watch this show - for reals. I dressed in all white, carried my lace clutch, donned my pearls and wore my hair in an up do with my wedding veil - all in the spirit of total mockery. (and I would post a photo, but I didn't remember my camera and my friend that took the photo STILL has not sent it to me.) I also gave a running cynical commentary during the entire airing. That'll teach my friends to invite me to their earnest partyn for the sake of "some color."

What upset me most about this particular season was that this man, who subjected himself to a public breakup and on-screen heartache in a previous season of the Bachelorette, thus bestowing the same humiliation and pain to several women this season, is a single father. And he exposed his 3 year old boy to this confusion and unrealistic view of relationships and morals ON SCREEN. ABC, you have sunk to new ratings lows allowing this child to be brought into this mockery of courtship.

On Saturday night, I saw this perfect summary of this season of the Bachelor and how Jason will explain it to his son some day:


I figure why go through all the effort to be witty and wise when someone else has done it for you.

My second snippet of wit and wisdom is in regards to the child's haven, Chuck E Cheese's, which I am renaming Future Gamblers of America. I am convinced that Chuck E Cheese's is owned by Harrah's Casino and is grooming the next generation of Riverboat Regulars. Whatever happened to the Showbiz Pizza of yesteryear - the place where we played Pole Position and MsPacman, etc. - games that took our token and we actually PLAYED? My children now go through 20 tokens every 12.7 minutes mindlessly dumping them into random games of chance - games in which you watch the mesmerizing wheel go round pushing a blinking button 1.4 seconds later hoping it lands on the jackpot of 25 tickets so you can get a sub-standard dollar store piece of junk that will be destroyed before you reach the car to go home - causing a melt down of epic proportions. And I pay money for this - lots of money. Honestly, Chuck E Cheese's has morphed into slots for youth. Unfortunately, it is one of the only places to go in this town on a cold winter day and still get out of the house with kids.

You're welcome for walking away a little more bitter insightful today after reading this.

KEEP BELIEVING

overdue

Realizing that I am overdue for an update on Brian, I apologize for not getting to this blog lately. I tried to go off my medication these past weeks to see how I did. Well, combine that with a certain time of the month, Brian's condition, fighting children and bleak weather and you have a recipe for disaster. I should have known. Now that I am back on my medication, I am going through getting my levels adjusted which includes headaches and fatigue for me. I am getting along better now.

But, enough about me, I know you come here to read about Brian.

In the last week, Brian has continued to get just a little worse. His speech is hit or miss. His mornings are awful - he is dizzy and often has vomiting spells. He has fallen three times in the last week. He is getting gradually more unstable and slower. He is very tired, but doesn't really nap. His memory is awful. He must ask me 20 times a day what we have going on that day/evening. He does not remember many recent visitors, but does remember some. He pretty much eats two meals a day still - one small and one microscopic. He doesn't really snack, either. And he is still stubborn as hell. Where 'stubborn as hell' apparently means 'stubborn as his Grandpa(s)'.... 'or Dad'.... 'or nephew'.... 'or Mom' depending on whom you ask.

One thing that brings much joy into Brian's life right now is reading the emails people are sending to the account we set up for him. His brother, Sean, brings them over once a week and Brian lights up when he hears from a total stranger that is touched by his courage and faith. He laughs and nods when he hears from an old friend relaying a particular memory or reliving old times. He delights in seeing pictures from friends and family of old times or their current families and locations.

Please keep sending those. Seriously, Brian's long term memory is not affected, so he takes great pleasure in reminiscing since he knows his short term memory is failing him.

brianoneill1972@yahoo.com

When I get more motivated, I will write something profound again. I know you are all dying for my wisdom and wit again.

KEEP BELIEVING