KEEP BELIEVING

In the spirit of the what-else-can-come-our-way lifestyle that seems to plague my boyz and me, Tuesday evening brought more trouble our way.


Grant and Gavin were at a friend’s house playing and Grant came running home screaming and crying. He had fallen and bent a finger backwards. He was in terrible agony, but was able to move his fingers some. He can be quite dramatic at times, too, especially at the sight of blood. However, there was no blood. Because he could move his fingers some and the finger did not look out of alignment, I knew he had strained or sprained it and some time would minimize his pain. I googled ‘broken and dislocated fingers’ to confirm my theory and felt quite comfortable with my diagnosis.

Naturally, this all happened on a night when I had a babysitter line up due to plans w my bf and on the eve of a trip to see family in Kentucky and Missouri for a few days.

Because of our impending trip, I decided to take him to prompt care to have it looked at because he was quite relentless with his insistence that he could not move it without pain.

While at prompt care, he was able to regain some motion in the finger (his right hand ring finger) and started talking a lot about “if it’s broken, can I call Mommo as soon as we get home and tell her.” Or “if it’s broken, I bet Gavin won’t even believe it.” I began to get the impression that he WANTED a broken bone – as if it would be some sort of bragging right or some sort of kid-rite-of-passage into coolness. So, I explained to him that he did not WANT this to be broken and listed all kinds of things that would become a pain in the butt if in fact it WAS broken, not the least of which was our mini spring break vacation that may not happen. I was convinced as his range of motion continued to increase and his pain level continued to decrease that the finger had been strained and was getting better with time just as I had suspected.

I declared to Grant a few times in the waiting room that if his finger was better and it really wasn’t hurt, this was a waste of time and money. I told him that there was no way he would be able to keep moving his finger like that if it was broken or dislocated. I was increasingly convinced he WANTED a broken bone. When we were finally called back to the exam room an hour later, the nurse asked what we were there for. I retorted, “We are here to waste your time.” Yes, I really said that. The doc came in a few minutes later, pushed on and rotated the finger. It seemed to cause no discomfort to Grant until he pushed just below the first knuckle.

He ordered an x-ray. I knew after the x-ray that it was not broken because when Grant was demonstrating the poses he had to do with his hand and finger, he did them with the wrong finger. I quite sarcastically pointed out that he was holding the wrong finger. He said he keeps forgetting which finger. I knew it wasn’t broken or dislocated for sure then, as only a mom can know.

In fact, I KNEW it wasn’t broken or dislocated as only a mom can know until the doctor came in and said, “Well, he broke it.”


(gulp)

(deep breath)

(proverbial tail between my legs, head hung very low)


“Grant, I am SO VERY SORRY for not thinking it was broken,” I said, hugging him.

Grant looked kind of panicked then and said, “So it IS broken?”

“Yup. It sure is, Bud.”

“What’s gonna happen?”

“They are going to wrap it up and we will have to see a special bone doctor to get it looked at again and they can tell us how to take best care of it.”

He got kind of excited about entering the elite club of those plagued with broken bones asking me if he could call Mommo when he got home now and once again declaring that he bet Gavin would NOT EVEN BELIEVE it when he showed him. Having been a member of the elite club of those plagued with broken bones as an adult, I knew it was not a club of which you want to be a member. The glory wears off quickly, but the inconvenience continues for weeks.

This doctor mom realized her track record for diagnosing broken bones is NOT A GOOD ONE. And even though I vowed to stop practicing medicine and making home diagnosis that day, I did not learn from my own mistakes.

Today, I am awaiting call backs (over 2 hours later) from the pediatrician because our insurance situation requires a referral from the primary physician even though they did not even see Grant. Alas, we are slave to the system, so we impatiently await the return phone calls now. Our trip is inevitably delayed, but we do not know to what extent until we receive the appointment time.

My family's track record of broken bones always falls on dates when events are planned. Gavin broke his wrist on my anniversary. I broke my foot on home leave from Canada the day we were heading from Peoria to Perryville to celebrate Gavin's 5th birthday. Grant broke his finger the day before we were leaving for Spring Break vacation.


Today, Grant is also learning that a broken bone is not exactly as glamorous as he had originally thought and the litany of reasons I gave him in the waiting room (which I naturally regret) as to why he would NOT want a broken bone are all, in fact, true. Today I am working with a very grumpy 7 year old to have a better attitude about his situation because we have to make the best of it for a yet-to-be-determined amount of time. Still, a 7-year old who just realized he cannot easily feed himself or open the milk, and worse yet, operate the Wii remote control with his fingers, is a difficult audience to convince. I don’t blame him one bit, but we are all continually developing our patience and our come-what-may response and attitude.

Ironically, just 24 hours prior to said incident causing the broken bone (which was nothing more than running in a neighbor’s yard), he and his brother were doing this for the first time ever. They walked away from this without a scratch.

KEEP BELIEVING

A few weeks ago, during a conference with Grant’s teacher, I learned that Grant had failed a hearing screening at school. Not waiting for the official notification from those that performed the hearing screening, I took him to the pediatrician and discovered he had an ear infection, which was a likely cause for the hearing loss. After two weeks of antibiotics and an ear re-check, the pediatrician decided the infection looked relatively cleared up, but recommended a hearing screening again.




On Tuesday I received a call from pre-registration to get Grant registered for his appointment the next day. This was the first I heard of the appointment, so I had no time to think about the appointment and its location, which was probably for the best. On Wednesday, we headed out to Grant’s audiology screening.



At OSF-St. Francis Medical Center.



As we walked the corridors of the hospital getting to the appropriate elevator, it dawned on me this was the first time I had entered OSF-St. Francis since March 17, 2009. I scanned my memory quickly, thinking SURELY there was a time or reason when I had been there in the last 11 months. Nope. First time since March 17, 2009.



And since THAT wasn’t enough, the audiology group performing the test was on the 6th floor of the Illinois Neurological Institute just one floor away from where Brian had his last surgery and hospital stay in which he left the hospital ALIVE.



And since THAT wasn’t enough, Grant had to use the bathroom just outside the secured entrance to the Children’s Hospital wing where Gavin spent 3 days and nights just one day after Brian’s last hospital stay in which he left ALIVE.



And since THAT wasn’t enough, as we sat in the waiting room listening for Grant’s name to be called, I glanced out the window and peered directly into the building across the street – the one where Brian died. Not just the building, but exactly the ROOM in which Brian breathed his last breath. Birds-eye view.



And because I was completely caught up in the flooding of memories, I was giving a commentary of the events that unfolded on all three of those events to my audience.



Which was my 6-year-old son.



Yeah, really smart.



I even pointed out the room to Grant. He cleverly acknowledged that I had just minutes ago as we were walking the hallways audibly said, “I haven’t been here since Daddy died. He died in his hospital” and that building was across the street, so not part of this hospital.



I explained there is an underground tunnel system leading over to that building and it took us a long time to get there. He said he wanted to go see the tunnel system and walk through it. I said, no he didn’t and it took a long time and was confusing. He asked if Daddy walked over there.



Being a complete and total idiot, I kind of huffed and said, “No, sweetie, daddy was totally unconscious. he couldn’t walk at all.”

Then I looked down into his eyes.

And it was in THAT EXACT MOMENT that I realized what the hell I was doing and who my audience was. Holy Crap! I saw the look on his face as he tried to visualize the events of that day even though he was in St. Louis when it was all happening. I didn’t want him to visualize that in his tender little 6-year-old fatherless life.



So, I tried to smooth it over. “Daddy got to ride on one of those cool beds with wheels. We all had to walk but he got a ride. And sometimes it went pretty fast because there were kind of hills in the halls.”



“Mom, You shoulda hopped on and rode with Dad.”



“Yeah, I wish I would have thought of that. That would have been fun.”



We were called soon after that. He is still showing some signs of hearing loss in both ears. Minor and probably reversible. He also has pressure on his eardrums signaling he is either still recuperating from his ear infection or on the verge of another, which could be the cause. Regardless, it entails an additional trip to the pediatrician for another ear check and an additional hearing screening.



Anyway, on our way out of the hospital, Grant got to choose a snack at the gift shop or Spotted Cow ice cream. He chose the gift shop. He had been lobbying for gum earlier, so I assumed he would want gum and I was even willing to buy Hubba Bubba. Instead, he chose a Snickers. Grant rarely chooses anything chocolate so I was surprised at his choice and as I was paying he looked at me and said, “Mom, that was Dad’s favorite candy bar, wasn’t it?”



“It sure was, Buddy. He said it was the perfect candy bar because it had the caramel and the chocolate and the nougat AND the peanuts. You made a good choice.”



And it was in THAT EXACT MOMENT that I made some sense of the situation. Because I am ALWAYS trying to make sense of situations like these.



You see, as that flood-gate of memories opened and my mind raced with so many events I had lived and survived during the fall and winter of last year, as I glanced out that window peering into the room where I lay on Brian’s chest unknowing he was an hour from death, as I walked those halls audibly recapping the events of those months, I didn’t shed one tear. Not a single tear. I felt weird being at the hospital for a reason other than Brian’s cancer. I didn’t like sitting in the waiting room as I remembered so many times silently holding Brian’s hand knowing we were getting test results and any idle chatter just meant we were both nervous. Silence was best at those moments.  Yet even in the midst all that, I don’t even know that I felt particularly sad. Just strange.



I felt like I should be sad. I felt like I should cry, but there was no sadness for me.

Haven't had the time or energy to blog lately for various reasons.

The most dominant reason being this:

Thanking God for friends that are watching my kids, for inlaws that helped me last night and for my mommy who is coming tomorrow. I just want my mom.

The last few days have been incredibly up and down. We have reached summit of the coaster hills and plummeted to the bottom, then back up again. I feel like right now we are at the boring part of the roller coaster where you think must either end shortly or you are soon to be surprised with a hidden leg of excitement - maybe a loop or hill or a plunge. Who knows?


Plummeting:
Brian remembers NOTHING of what happened on Saturday night at Alexander's Steak House. He remembers nothing up to Monday morning and even that is sketchy. He is extremely frustrated with me and anyone else who thinks that he should take precautions or stay put. This is largely because at the most difficult moments of Brian's condition so far, he remembers NONE of them. He does not remember how bad he was in November just before he had surgery to install his shunt. He does not remember mid-January when he was unable to walk and forgetting everything before we discovered the tumor had progressed. And today, he does not remember what happened Saturday night and Sunday- how he was up all night and all the nonsense things he said like how he was going to request a change in management when I refused him a drink or how he was petting me on the head like a dog and he said at least he didn't call me a bitch when I asked if he was stroking my hair or petting me.

It is gone from his memory as are a lot of other short term things. He can't remember hour to hour if he took his medication. He can't remember moment to moment where I am heading or where the boys are if they aren't in the room. He looks for me all the time and constantly asks where I am. He didn't remember that Mom was here this morning when he woke. He doesn't remember whether or not he ate. And many other examples. He remembers long term things pretty well, though.

Summit:
He is able to move and walk a bit better. He is conversational and involved. His vitals are good. We slept in our bed last night and the hospital bed remains empty except for the kids when they play in it. He showered on his own last night as I stood by and watched. He is ascending and descending the stairs. He does not use the wheelchair, either.

Plummeting:
With his stability issues and the understanding that things can turn so quickly, I am insistent that he not walk around unless someone is close by him and that he not descend stairs unless a strong man is in front of him. He is not accepting this very well. He is not treating me very kindly saying some pretty harsh things, taking an incredibly sarcastic and defensive yet accusing tone. I know it is not the Brian I know speaking, but it is difficult nonetheless.

Summit:
Brian is very aware of his need for his medication. This has been such a part of his regular routine for 12 years that he cannot think without being engrossed with taking his medication.

Plummeting:
Brian does not remember if he took his meds. He thinks he took them, then he thinks he needs to take them - moment to moment. I hid all his bottles of medication and assured him I would be responsible for getting his right meds at the right time. He is not nice about it. I am developing some thick skin because I know this is what is safe for Brian.

Summit:
The boys went to school yesterday to Daddy sleeping in a hospital bed in the living room. When they arrived home, he was able to walk and lounge in the La-z-boy watching TV.

Plummeting:
I opened Gavin's backpack to find a card for Daddy that he had made at school because he had wanted to come home and see his Dad afraid he may die while Gavin was at school. His wonderful teacher had encouraged him to express his feelings on a card and share them with Daddy when we got home. The card had Dad written on it no less than 15 times. It made me proud and broke my heart at the same time. I had a conversation with Gavin that if I thought Daddy was getting close to dying while Gavin was at school, I would come get him. I cannot even believe my 7 year old has such a heavy burden on himself as he is learning that "igh" makes a long "I" sound.

Summit:
Yesterday, Grant had two great-aunts and his Memaw here to distract him and spoil him. He got some Spotted Cow Ice cream - one of our favorites and Taco Bell - his first time, but he loved it.

Plummeting:
Yesterday, I felt like crap. I had nausea and ahem, other, issues that plagued me for about 24 hours.

Summit:
I had plenty of relatives here to help yesterday.

Plummeting:
Today, my mom (Memaw) feels like crap.

Summit:
Today, I feel great.

Both:
If I think this is confusing for me, imagine how it is for the boys. Gavin came home to find Brian out of his hospital bed and walking around and asked me, "he is still going die, though, right?" Grant looked over at Brian watching TV and said, "it looks like Daddy is dead in that chair with his mouth open and not moving." These are some of the normal statements spoken in our house. It is like we all have to convince ourselves that this is real because we realize moment to moment things can change so drastically. We have to keep ourselves guarded and prepared. They are watching AirBud on the big screen as I write this. Moments ago, Grant was telling me to cry in his shirt. I explained I didn't need to cry right now. He said that I should cry because of Daddy. I explained that sometimes I feel like crying and sometimes I don't. He can cry to me and in my shirt any time he wants. Sometimes he will feel like crying. Sometimes he won't. I don't understand my own emotions and my own valleys and hilltops. To get them to understand is a whole other issue.

My boys are confused about sickness. They think sickness is the reason you give if you don't feel like doing something. If Daddy misses a game, it is because he is too sick to come. If Daddy doesn't eat, it is because he is sick. If Daddy sleeps late, it is because he is sick. And those things are true because Daddy doesn't want to sleep late or miss their games or be unable to stomach food. Daddy misses those things only if he is too sick to do them. They think they have to say they are sick if they don't feel like going to a game or if they don't want to eat. They are both constantly saying they are sick. I try to make sickness be something they DON'T want to be by saying things like, "that's too bad because if you were feeling good we could play this game instead of (whatever), but now that you are sick, you will need your rest instead." Things like that. Still, sickness is confusing in this house. As are lots of things.

Some days, as terrible as this may sound, it would just be easier if Brian consistently felt awful.

But that's not how I want him.

KEEP BELIEVING

Then another girl came in and said she had something for me in her car.

Chicken and Rice with Hawaiian Rolls.

Then another girl asked me when I was leaving because she had a frozen dinner for me in her car.










Then one more girl asked me when I was leaving because she had just a "few" breakfast items for me in her car to help with the mornings.

blueberries, strawberries, cantaloupe, bagels, 30 small boxes of cereal, 24 cookies, 15 double packages of muffins, 12 breakfast biscuit sandwiches, 10 coffee cakes, 6 English muffins, 6 bagels, 1 bottle of wine, and a partridge in a pear tree (only not really.)

My favorite part: the bottle of wine since the theme of these "few" items is to help with the mornings. Now, THAT is a good friend!

Aren't these girls beautiful? Inside and Out?

KEEP BELIEVING

Bloggonit, it has been a VERY long time since I last posted. And there is good reason for that. I have not been home. And we do not own a laptop. We are stuck in this house to the old computer desk (which is now in the same room as the new Wii after some rearranging) if we want to cop some computer time.

I am sure I have lost just about every reader I had that read this blog for any reason OTHER than to find out how Brian fares. Since that is the case, the remainder of this post will be to update you on exactly that.

I had said that Brian was going to start chemo on Dec. 29th. We delayed that a week. He is now to start tomorrow, Jan 5, 2009. He has an appointment sometime in the morning. Only I have no idea what time because the last few weeks my brain has been in the toilet or covered in vomit or something along those lines and I don't know where I wrote it down but I didn't write it in my calendar and don't ask me why - I am sure it has something to do with vomit. I will explain.

On Wednesday night, Dec. 17th, Gavin complained of an upset tummy. He began vomiting around 10 pm that night and proceeded to upchuck no less than 7 times until around 10:00 am. He was on the mend, but missed school Thursday. On Thursday night we received one of our many recent ice storms, so school was cancelled on Dec. 19th. Gavin's Christmas break therefore started at the end of school on Dec 17th. When none of us showed signs of the stomach bug for the next three days I assumed we were in the clear. Not so. Brian woke up vomiting all day on Sunday, Dec 21. Grant began vomiting on Sunday evening. I never did. I told Brian, however, that it would be nothing short of a Christmas miracle if I didn't end up with this stomach virus. When I didn't get it for the next three days, I assumed that was the case. Rather, I awoke on Christmas morning with feelings of nausea and illness all day. The good news is that no one else in our extended family was plagued with the illness. No, there seems to be a special place reserved for us on Satan's hit list for ailments.

We were hopeful that Brian's episode that Sunday could be attributed to the bug, but we are not sure. You see, Brian has been having many of these episodes lately. Sometimes it is limited to once or twice in the morning with a pleasant afternoon. Other times, it lasts all day - for instance Dec. 13, Dec. 21, Jan 1. He had smaller episodes on Dec 24th, Dec 30th and Jan 4th. He just vomits. It is strange. It is scary. It is annoying for him. He can't make it to the bathroom in time, so he keeps a bucket nearby and that is embarrassing for him if the boys are around. We can't keep them away all the time, though, and we never know if or when he may be overcome with an urge to vomit. And I know this all sounds gross with the overuse of the word vomit, but it isn't really nausea. He is fine one moment and then just throws up the next, so the term 'vomiting fits' is the only way I know to explain it.

In addition, his right side appears to be getting weaker with some balance issues. Walking for much of a distance is growing more challenging and any sort of uneven surface is just about out at this point in time. He struggles to open most cans and his pill bottles, but insists on trying. He still navigates stairs as long as there is a railing.

He is tired a lot. He watches a lot of movies, TV and football right now. Sometimes he watches it like our dads have been able to do for so many years through closed eyelids and between snores.

All that being said, he is in decent spirits. Admittedly, we are both getting frustrated with the frustrations in our lives if that makes sense. We didn't let them get us down for the holidays, though. We went to my mom and dad's for several days and Santa came there. We spent the new year in Kansas City with Brian's entire family which was very pleasant. There was a lot of driving involved and since I am the ony driver now, it can be taxing on me, but we work through it. The last two weeks went by very quickly. Unfortunately, Brian woke up on New Year's Day with a full day of his vomiting spells. That wasn't the way he wanted to ring in the new year. He was much better most of the next day. He doesn't have much of an appetite in general, though. We were able to squeeze in many games of Euchre and a few board games with the kids. Let me just say that Brian is the best one handed Euchre dealer and player around.

I don't know what all of these issues mean for starting a new round of chemo. I have no idea if the episodes are something more to worry about or if the doctor will suggest we forgo chemo longer. I just don't know. He has his appointment SOMETIME tomorrow, so we will ask tomorrow. In the meantime, the surgeon also wants to meet with us on Tuesday to discuss whether or not he attempts some surgery in an effort to debulk and maybe give Brian some more time.

As you can clearly see, things are the same ol', same ol' here for us. Don't know what we are doing. Brian doesn't feel great, but tries his darnedest not to let it get him down. Kids start school again tomorrow. We mange some time for friends and family. We play each day by ear.

That's about it from here for now. I will write more this week.

KEEP BELIEVING

Our interview about finding peace in the midst of life's storms was played at church this past weekend.



Here is a link to the audio file. Go to message player and click on the audio file for Finding Peace on Dec. 14. I could not figure out how to embed it directly in here because I am stupid about such things, so to listen to this will take you a couple of steps. I am sorry.



This link is to the entire message which I would naturally encourage anyone to listen to because I think it is powerful, but our interview portion starts with approximately 10:30 remaining (about 32 minutes into it) and plays until about 4:00 minutes remaining. The entire message is a little over 40 minutes.



You can hear some of the issues Brian has with his speech here. Prepositions are one of his most challenging issues - he uses the wrong one often. He knows what he wants to say, but the words just do not come out all the way he intends - Expressive Aphasia.



There were so many things I wished we would have said after the interview was finished, but I think the guy that did the editing of the interview did a fantastic job making it coherent and meaningful. One day I will post the letter I wrote when I got home from the interview that afternoon of all the things I wished I would have said. For now, though, I want you to listen to the interview in its purity without knowing the "coulda, shoulda, woulda's" of it.



KEEP BELIEVING

Things are getting back to normal here at Chez O'Neill. When I look back over the last two weeks, I really can't believe we all survived with our sanity.

I would say sanity is relative, though.

Thursday I spent half the day crying my eyes out. I don't know why. I was overcome with emotion that I believe was FINALLY released when I got home from the hospital, felt like all my men were relatively healthy or at least improving and BREATHED for the first time in 14 days.

Gavin now has a phobia of the hospital. He is afraid to tell me when he doesn't feel well. I have explained that just because he doesn't feel well doesn't mean he will necessarily go to the hospital. Also, I have explained that the hospital is, in fact, what helped him get better. At home, he would have become sicker and sicker and could have died from his lungs not working right if we hadn't gone to the hospital at some point in time. He said they lied about putting a straw in his arm. It was really a needle first. Ah, true, wise Gavin. Necessary evils to get kids to cooperate.

Brian looks like he got in a bar fight. He has a raging black eye. Behind his ear is an enormous bruise - black and purple. His abdomen looks like he took a couple of kicks to the gut with its bruising. And the top of his head has a stitched up slit that looks like a beer bottle had its way with his scalp. This is all from the surgery - the bleeding that was not visible from the procedure making its way out of the system.

Grant is acting out. He has become a bit aggressive and destructive. Saturday, while I was away at a baby shower, he had his way with the big screen TV downstairs. Nerf gun war, apparently. There were little Nerf dart marks all over that were easily wiped away. However, the large scratches, MOST, but not all of which buffed out were a result of the NERF GUN attacking the screen. Grant's hand was on the opposite end of the gun.

Then Grant threw a fit in the store yesterday when I explained he was not getting a cookie because he disobeyed me again about keeping his jacket out of his mouth - the same jacket which now has an inoperable zipper due to the same mouth and teeth that can't stay away from it. He took off his jacket and swung it wildly in the air as hard as he could hitting an innocent lady as she walked by. When she heard my horror and shock-filled gasp, she sheepishly looked back and said it was okay. I think she was afraid of what might happen to the adorable, wide-eyed little boy whose mother was foaming at the mouth if she would have made a big deal about it. He was obviously going to have a consequence for his actions.

I threw away an $85 tennis ball today. On purpose.

When I arrived home from the baby shower on Saturday, I was told our basement toilet was clogged. The guys had spent a large portion of the afternoon trying to remedy the problem to no avail. One of my nephews had taken a large dump and it was thought this was the culprit. Plunging did nothing. I bought a sort of snake de-clogging tool and it also did nothing. In fact, it would not penetrate the neck of the toilet. So, I called the plumber today. The plumber tried the same things unsuccessfully. He then shop-vac-ed out the poop water and found a TENNIS BALL lodged in the neck of the toilet. INTERESTING. I am pretty sure my 8 year old nephew did not use a tennis ball to wipe his messy little bum. I know from this post, I wanted the boys to work on their aim, but I meant it a little more anatomically than athletically.

When Grant got home from school today, I explained that the plumber had been here and fixed the toilet.
Me: Guess what? He found something in it.
Grant: A tennis ball?
Me: Yes. How did you know that?
Grant: I guessed?
Me: Uh- huh. I see. How did the tennis ball get into the toilet?
Grant: I don't know?
Me: Yes you do. How?
Grant: I think I don't remember.
Me: I think you need to remember.
Grant: Ummm. I THINK I was going pee and I had the tennis ball in my hand, but I set it down on the edge of the toilet and I think it probably fell in. Then I finished going pee, I think.
Me: And you flushed the toilet with the tennis ball in it?
Grant: Yes, I accidentally forgot to get the tennis ball out first.

So, I explained that accidents happen and it is gross when things fall in the toilet, but he should have told us this happened because we could have saved a lot of time and money if we knew what the problem was. If he ever drops something in the toilet again, he needs to tell us RIGHT AWAY and NEVER FLUSH IT FIRST.

So, does anyone know the going rate for 5 year old child labor? I have $85 owed to me.

Lessons learned from this: If you want to save some money and not call the plumber after your toilet does not respond to plunging and snake routing for declogging, you can wet-vac the water out and find the lodged item. However, having someone else suction dung-water out of my toilet to find a feces covered tennis ball is worth EVERY BIT OF $85 for 25 minutes of work. EVERY PENNY.

KEEP BELIEVING

Home again.

From the hospital again.

Gavin was discharged last evening after his second dose of antibiotics. He improved most of the night on Tuesday night and into Wednesday. He began running a low grade fever on Wednesday early afternoon which responded very well to Motrin. He also began eating and drinking. And then he began peeing. A ton. Like every 45 minutes. It was as if his little body finally said, "okay, I believe you will keep giving me a drink, so I will now release this fluid I have been holding onto for the last three days." and the floodgates were raised.

I gave him Motrin last night as a precautionary measure to ensure he didn't wake with a high fever again. He is keeping everything down now and really appears to be on the mend. I am keeping him home from school for the rest of the week so I can watch his breathing and listen to him to ensure the fluid is not building up. I also just want to keep him adequately rested for another few days. We follow up with his pediatrician this afternoon.

My Mom is going home again today. We were going to have a house full of people this weekend (my family) but I cancelled. I cancelled as soon as I realized things with Gavin were pretty serious and now I am glad I did. We just need time to be a family. A family of 4 with no doctor's appointments or hospital stays or houseguests. We need to be normal. Well, as normal as a family of 4 fighting cancer and pneumonia can be. As normal as a family of 4 who have not all slept in the same house for 7 nights can be.

Brian is doing pretty good. He is having a lot of issues and discomfort with his joints. The steroids can cause this and we are tapering off the steroids, but we are thinking we might be tapering too fast. It is always difficult to know if the weakness is from the cancer and the brain or from other causes. This is difficult to manage.

Brian's oncologist appointment on Wednesday went well. Gavin was doing okay, so my mom stayed with him while I left the hospital for the first time in 54 hours. Plus, he was a grump (rightfully so) and I needed a little break from him. At the appointment, it was decided to repeat the scan in about a month and determine what chemo to continue based on those results. The chemo he was taking and we are considering continuing inhibits healing, so whenever there is a surgical procedure, the chemo is discontinued for 3-4 weeks prior and 3-4 weeks after the procedure.

Then I picked up Grant from school since I had not seen him since Sunday at bed time. I missed him terribly, and he needed his mommy. We went to the hospital together and visited his grumpy brother. We got an ice cream and went up and down elevators, explored the outdoors on a walk and raced each other in the walkways connecting the building.

Still, today we have an appointment for Gavin and Brian has an appointment on Friday to get his stitches and staples removed.

I am tired. Tired of hospitals. Tired of issues. Tired of making appointments. Tired of cancelling and rescheduling everything else. Tired of no routine. Tired of worries. Tired of illness. Tired of choosing which member of my family I spend my time with. Tired of deciding where to sleep. Tired of germs. Tired. Tired. Tired. Tired.

This weekend we are doing nothing. We are going to be a family. We are going no where. We are making fires in our fireplace, playing games, cooking our own meals, doing our own laundry, cleaning our own house, going to church. Because we can. Because we want to.

KEEP BELIEVING

Okay, Where to start.

First of all, Brian is doing great. Just great. He gets stronger each day and is improving quickly. He gets stitches and staples out on Friday. We see the oncologist tomorrow to talk about further treatment. His speech is improved and he is walking better each day. In fact, just today, he walked the corridor of the hospital there and back twice.

The hospital, you ask????

Hospital. That's right.

Sunday night, Gavin lay in bed with a 103.8 fever not responding to Motrin or Tylenol. He lay there shivering and trembling and shaking. At 2:30 am, I had enough, and I left for the ER. Thank God I had asked Jan to spend the night at our house in case of an emergent situation because an emergent situation we had.

I knew this was beyond a bug. He was sick. Very sick.

In the ER, he was given a bolus - a large amount of IV fluid quickly. He responded well and got another one. It took two tries to get an IV because he was so dehydrated. I could not get him to drink much on Sunday. Mom said she had the same problem most of the weekend. He ate almost NOTHING since Wednesday night. They told us they were calling our Pediatrician to follow up with him the next day and were sending us home since Gavin kept down the juice and crackers and could continue to hydrate at home. They took out the IV, so naturally, about 5 minutes later he vomited everything and they said we needed to watch him for 23 hours.

For the next several hours, Gavin underwent an IV infusion of a potassium mixture to bring back up his electrolytes and hydrate more. HIs urine and throat were tested. He had labs drawn. It was assumed this was a nasty stomach bug. He was given Tylenol and Motrin IF his fever spiked. Which it did. However, Friday through Monday he was FINE from about 10:30 to about 3:30. At 4:00 on Monday while we were here, his fever spiked to 103.2 again and they said they would keep him overnight - they were just about to let us go home, I guess. Anyway, all through the night last night, unless he was sleeping, Gavin complained of tummy and back pain. He would tremble and shiver head to toe and moan. The only relief he had was when his body would succumb to exhaustion and he would sleep. It was a long night. At about 1:00 am, his nurse noticed he was dripping with sweat, came in to uncover him and noticed his IV was falling out. So, he was poked for a FOURTH time to insert another IV. I sure hope this one holds out. He hates the pokes as he says.

This morning, his pediatrician came in and said it was pretty obvious by his trembling and his fever that will not break this is more than a stomach virus and is some sort of infection. He ordered more tests that probably should have been done the day before, but what's done is done. The test that FINALLY came back positive was the chest X-Ray. Gavin has pneumonia. He is now being treated with a broad antibiotic and an additional antibiotic in case it is a sort of atypical pneumonia. The good news is that that it appears so far the pneumonia is not growing. Gavin is not having problems breathing and isn't coughing a lot. The cough really just started last night. The pediatrician said this can happen with pneumonia - once the body is hydrated, the fluid can build up.

So, today, he spent a lot of the day trembling and uncomfortable. He appears to be doing a bit better tonight. I pray the antibiotics continue to work and other drastic means are unnecessary for his recovery. Please pray with me.

I had no idea how painful it was to watch your child in pain. I pray you never do.

I will write more when I have time.

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Saturday morning, we were given our marching papers from the hospital. Just 19 hours after Brian's surgery, he and I were driving home together.

We were surrounded by family and friends this weekend - a weekend with cool, fall weather, a warm cozy fire and good company.

Unfortunately, Gavin is still sick. He does fine most of the day, but spikes a fever in the evenings, all night and in the early mornings. Since Wednesday night, he has eaten a sleeve of Ritz crackers, a small bag of McDonalds french fries, 1/4 bowl of mac-n-cheese and several tortilla chips - most of which was consumed today. He drinks about 5 cups of fluid a day and pees only twice. The call center today told me I HAVE to push fluids through him or he will get dehydrated and his body is probably on the verge as it is. His fever this evening was near 104. I will call the doctor's office in the morning to get him seen. He has almost no other symptoms.

Tonight, Sunday, Jan, Brian's mom, is spending the night with us to be here should any emergent situation arise with Brian or Gavin. I feel so much more at ease knowing she is here that I can attend to whomever needs me most. Right now, surprisingly, it is not Brian. It is Gavin. He trembles and shivers and sort of moans off and on. Also, she will be here should I need assistance in the morning with getting Grant off to school and tending to Gavin and Brian.

Please pray for Gavin right now. Pray for God's protection over the rest of the house, as well.

Please praise God for his amazing work in Brian right now. We have an appointment on Wednesday with the oncologist again to discuss possible further treatment. It has been 4 weeks since Brian's last chemotherapy treatment. He is feeling stronger and not as symptomatic right now causing him to consider further treatment in the near future. His legs are weak as he did little walking for the last 7 days. He still has some surgery recovery to do, but he gets stronger each day.

KEEP BELIEVING

There are more examples in my life than I can take the time to outline of times when our desert places were turned into the land of plentiful through faith, trust and prayer. God orchestrates our lives in ways unimaginable to us when we are willing to let it go and hand over the reins to Him humbly. The last two weeks, we have spent much time reflecting on God's plan for us, talking about peace, faith, our love, salvation, death, our past and the kids' future. We have shared tears and heartache and desperation and devastation as we struggled to let go and rest that Brian's life is in God's hands.

Today, after many hours of conversations and intentions made known to everyone that we would like to move forward with this surgery that would so obviously help Brian, Brian was taken to surgery around 3:30 pm. The surgery itself lasted around 30 minutes. Total pre-op, post-op, surgery and recovery time was around 2 hours. Brian was under general anesthetic. The procedure involved putting a permanent tube into Brian's right ventricle.

this is Brian's MRI two times ago - mid October labeled to show you what a ventricle is

Otherwise he is doing well and is recovering fine. He is still speaking better than last week, is alert and feels good.

The quality of life given back to us is immeasurable. What we have just done has not at all affected or addressed the cancer, but has alleviated Brian's fast developing symptoms causing a rapidly deteriorating condition.

And I believe God orchestrated this entire event:

Brian and I were inches away from canceling the consultation with the surgeon last week since we were not seriously considering a surgical resection at this point in time. Had we done that, we would not have personally met Dr. K and I do not know that he would have so rapidly read Brian's scan and personally called us with his finding and recommendation. We were not supposed to get the results of that scan until this morning. I shudder to think of the condition Brian would have been in today given the rate of the spinal fluid building up in his ventricle. Instead, Brian's complications were eliminated by Wednesday night via a temporary drain and now with a more permanent shunt.

I had the ball rolling for hospice assistance on Wednesday morning, but now we are considering further treatment.

Wednesday morning, Brian could barely tolerate light, wind, noise and movement. Today he wants to get out of bed, get home and play with his boys.

Last Friday, I had told my mom that she didn't need to stay past the weekend. We didn't need that help yet. Sunday, Monday and Tuesday she stepped up helping my kids while I attended to Brian's needs which were quickly and unexpectedly growing. Wednesday, Thursday and Friday she was here to get my kids to and from school, homework finished and baths and meals administered, including tending to my very sick Gavin. Today, she took the boys to her house for the weekend. It gives her time with Dad and back in her environment. It allows me the freedom to be with Brian instead of choosing between the boys and Brian. It gives the boys a welcome change of pace and some fun. Also, it gets sick Gavin out of our house and allows the house a couple days to lose the germs before Brian comes back home.

I know I made my voice very well heard at the hospital on Brian's behalf. Before each conversation as Brian's advocate, I felt the peace of Christ guiding me to use a respectful approach, logical wording and calm demeanor. My words were His words and because of making our desires known, I find it no coincidence that Brian skipped lunch despite the urgings of both a Physician Assistant and a Resident to go ahead and eat since he was not scheduled until Saturday only to discover that there was a cancellation and Brian's procedure took its place this afternoon. Had I not made our heart's desires and our frustrations known in such a manner, I do not believe Brian would have been placed on today's schedule. Had Brian eaten, he could not have had anesthesia.

Also, Dr. K. is a Christian man. Just prior to surgery, he came into the room and said he prays before each surgery and asks the patients to join him in prayer if they do not mind. He prayed for Brian's recovery and his performance and in thankfulness for the gift of salvation through Christ. It was a moving moment and one that we have never experienced before.

It was as if God himself laid his hands right on Brian and said, "I'm not done with you yet. I have more plans for you and I will be glorified even more through you." And I have come to understand that even through death, God can be glorified.

While this surgery has not done anything for Brian's prognosis from the tumor, it has restored within Brian a new hope and a spark to live his life, however long it may be, even more humbly and in greater service to the Lord with continued dignity and character. It has allowed him to come back home as the Brian we all know and love continuing his exemplary life and legacy.

Romans 8:28 “And we know that all things work together for good to those who love God.”

KEEP BELIEVING

The decision is not official, but I believe Brian will have a shunt installed soon. When I say soon, of course, I mean I HAVE NO IDEA WHEN, because that would require an answer and commitment and I can't obtain that. When I say I have no idea when, I mean sometime on Friday or Saturday. In which case, Brian would be released sometime on Saturday or Sunday. So, I guess technically I have SOME idea of when.

I have plead our case to every single solitary person that crosses our path - this has helped Brian, we are thankful for this, now we just want the shunt put it so we can go home. Brian tells everyone, too. I explain that we are dealing with advanced Grade IV cancer and have finally come to peace with that after many years of dealing with it. We want to be at home surrounded by our friends and our family. We want to be together in OUR environment. No alarms and tubes and beeps and blips and things that go ping. No one seems to be in any sort of urgent mood except us, but I continue to do my best.


Brian is feeling so much better. He was up on his feet a bit today. He was still very unsteady and his right side was weak and slow, but his mood is night and day different. Yesterday being night and today being day. He is having conversations with people and eating fine and feeling so good. He says he is stronger and feels clearer in his thoughts, etc. In fact, we were watching (or attempting, anyway, with cell phone calls and vital sign checks constantly interrupting) RENDITION. We began watching this yesterday before we were told to come to the hospital. Part of the movie is subtitled. Today, Brian remarked, "I can read the words today." I inquired, "Could you NOT read the words yesterday?" He said, "Not really." In addition, his speech is improved, but still not what it was a few weeks ago. He is still struggling with some number functions. He had no idea what the year was, but he assures me he had no idea what the year was before, either. I said, he probably had at least an idea.

He is getting no sleep. He had a roommate that has been snoring and unresponsive since he arrived last night. The roommate has more alarms and machines that go ping than Brian does. Anyway, after telling every single person that would come into the room and ask what they could do for Brian that he wanted to be moved to another room, he was finally moved at 4:15 this afternoon.

The biggest restriction Brian has is movement right now. This drain is coming out of his head and into a reservoir bag on a pole next to him. It works by gravity. If the brain does not drain the spinal fluid through normal means, it is picked up by the drain and into the bag. There is a level and a laser attached to the bag contraption and they point it at Brian's ear. His ear needs to be level with the bag to keep the equilibrium and pressure correct. If he raised or lowered above or below the bag, the spinal fluid could drain faster than it should, or fill up in his head faster than it should. Either is not something that is pleasant or desirable. That is a nice way of saying, it could be bad. So, if Brian is going to raise or lower his head, he has to tell a nurse so s/he can clamp the drain until he is repositioned, reposition the bag and finally unclamp the drain. This would basically suck to have to endure for another day when we know it is working and we want to just move on.

Gavin is vomiting today. Awkward segway, I realize, but hey, facts are facts. He is sicker than a dog. I have no idea how or why that term ever came to be, but he feels awful. He turned down a chocolate chip cookie and a Hershey Bar today. For those of you that know Gavin, you KNOW he is sick when that happens.
Regardless, due to this sickness, I am not taking him to the hospital to see Daddy. I think I may take Grant for a couple minutes. They have a Spotted Cow (one of his favorite ice cream shops) in the hospital, so I have effective good behavior bargaining power. He is packing a Twinkie to take to Daddy. I am pretty sure he plans on eating it, though.

Anyway, when we know more about when the surgery may be, I will keep you posted.

KEEP BELIEVING

Today I had my yearly visit to the girly doctor. My Ob/gyn has historically been only that to me - a yearly checker of my nether-regions. I have never been pregnant and when we attempted pregnancy all those times, we went to reproductive specialists and by-passed my OB/GYN altogether.

So, my visits are usually short and to the point. Small talk, expose breasts, get felt up breasts examined, scoot to the end of the table, insert feet in stirrups, awkwardly small talk while doctor sticks large q-tip type thing in my hooha, take deep breaths, wash up, dress, go home.

Today, was no different, except that my small talk consisted of Brian. My doctor seemed shocked even though we have small talked about Brian in the past, but like I said, I only see the man once a year. Also? the past small talk visit was 2 years ago and Brian wasn't diagnosed with his recurrent tumor at that point in time. He sat down and we talked in earnest for a while.

I coldly, matter-of-factly and without emotion spoke of Brian's condition, his problems, his diagnosis and how it affects our current lifestyle. I am getting good at this, honestly.

He wanted to know how I was doing emotionally. I hate that question. I know people are looking to find things in me that signal signs of depression. Everyone wants to fix me. "It's the least they can do," I feel it all around me. I found myself babbling on and one somewhat like this:
"Just fine... I think, anyway.... staying strong..... worry a lot..... take care of myself..... tear up out of nowhere..... occasional resentment..... good, though, for the most part.....considering....it sucks.....fine, though...... it's not fair.....holding it together for the most part... "

He looked at me with tender compassion and asked about my support. I found myself replying a lot like this:
"I talk to my family in great length about my worries for the future.... can't really talk to Brian's family about it..... my family is a few hours away, but we talk every day..... have good friends...... Brian's family is close by..... would help whenever..... don't need help right now.... I worry because Brian's family travels a lot if I did need long term help....Good support, though...surrounded by those that love us...."

He looked at me with even more compassion, handed me a tissue for the tears I didn't even realize were running down my face and said:
"You know, there are lots of things you can do to help with the feelings of sadness and despair. I'm not saying you're depressed, but lots of times depression can set in suddenly after feeling just kind of blue for a while. There is counseling and many medications that could help if you felt like you wanted to try that."

Me: "Oh, I think I am fine. Honestly, I have been doing really well. Sort of, since the boys went back to school, I have been a little sadder. I also had an Uncle die of cancer two weeks ago just a couple months after diagnosis. That was hard and made me think a lot of thoughts I don't want to think. But, really I am fine. I am."

Him: Do you think a lot of thoughts about "what if"
Me: Oh yeah, constantly.
Him: Constantly?
Me: Yes, constantly.
Him: Do you sleep?
Me: Actually, I do sleep these days. Probably because I am getting up before dawn to get the kids to school, but I do sleep.
Him: But, you have a lot of worries?
Me: Of course. We are under-life-insured putting me in a position of having to go back to work full time if something happens to Brian. With school starting back up and trying to allow the boys extra-curricular activities, I can't fathom how I could possibly do it by myself and so, yeah, I pretty much worry constantly.
Him: You go to bed worrying, wake up worrying and worry throughout the day?
Me: Yes. All. Day. Long. Every. Day. No. Matter. What. I. Try. To. Preoccupy. My. Time. With.
Him: You know, there are some anti-depressants that can just help with that blue feeling, help your mind to stop thinking "what if" all the time. Just take that anxiety edge off.
Me: Will they make my thoughts and judgement cloudy?
Him: No. They will make the "what if" thoughts cloudy. They should anyway. Do you want to try something?
Me: I'm really not sure. I'll take the script, but I don't know yet.

So, I am filling the script. I have to decide if I am going to take it because I have to take it every day for it to be effective. I don't know if I am depressed. I really don't. I know lately, these are the feelings and events that are dominant in my life:

• tears out of no where
• resentment towards those that are able to do the things we used to be able to do, but no longer can due to Brian's issues.
• constant worry about the future
• short tempered and easily irritated with kids
• unmotivated to do housework and organize
• desires to be around friends and family
• overwhelmed with existing duties
• impatient towards Brian when he is overly sleepy and not feeling well
• self-pity
• lonely
• feel like I always want to do something more fun than what I am currently doing

Do not judge me, please, for feeling any of the above. And, honestly, besides the worry, which I think is pretty normal for anyone in my situation, none of these are overly dominant in my life. I go about doing everything else - grocery shopping, helping with homework, running the kids around, scheduling appointments, paying bills, making dinner, cleaning house, etc.

Yes, I feel more blue than I did a month ago. Also, in the last month, I lost an uncle to cancer and it kickstarted my worry factor again. Brian has not been feeling well due to what we hope and assume is a bad cold for about 3 weeks. Brian has tests coming up in two weeks and that always makes me anxious. My kids started school. I am waking up and going to bed two hours earlier than just one month ago. The days are shorter, the air is cooler and my damn tomato plants never really turned red. I have about 25 green tomatoes sitting out there taunting me.

So, I am asking any readers and lurkers to help me understand. Am I depressed? Am I on the verge? Or am I just dealing with a lot of shit in a time of a lot of change?

KEEP BELIEVING

So, Mindi called on her way out of the cardiologist office at St. Louis Children's today. Hannah had her echo today with the pediatric cardiologist (pc for future reference in this post). Her echo was normal. They almost let them go. The pc said, let's do a ECG (electrocardiogram) before you go. They did. It was not normal. Here is what they found.



WHAT IT IS:
Hannah has a condition called Wolff-Parkinson-White (WPW). It is a condition in the heart where-in an additional electrical pathway exists between the upper and lower chambers. Many people with WPW have no issues or problems. However, WPW can set people into different conditions called arrhythmias. The most common of these caused in children by WPW is called Supraventricular tachycardia (SVT). This is a condition in which that additional pathway/conductor sends an extra signal to the between the chambers of the heart causing an extra beat and keeps doing it until basically the heart is racing extremely fast. It has to be stopped by external measures or it will continue and get worse. WPW can also cause Atrial Fibrillation in more extreme cases. Hannah's ECG at the hospital last Thursday night also showed this condition. However, they do not think she was in SVT that night. Personally, that surprises me, but just because I spend a lot of time with Brian at the doctor and researching medical stuff for us, does not make me a doctor. Regardless, what happened with Hannah that night is what led to this diagnosis, so thank God for that.



WHAT TO LOOK FOR:
Signs of SVT in infants are sudden increases in heart rate, difficulty breathing, lack of interest in eating, lethargy, and noticeable chest palpitations. Naturally, since the child is an INFANT, the INFANT, by design, is unable to tell you he/she is experiencing such symptoms. So, Mindi and Matt are to acquire a stethoscope and periodically check Hannah's heart rate. If the condition continues as she gets older and sets her in SVT, dizziness, uncomfortableness, difficulty breathing, etc. can occur.


WHAT TO DO:
You are the lucky parents of a baby with a diagnosed heart condition! What do you do now?!?!? Nothing. mmmhmm. Nothing. Besides watch for symptoms of SVT or more serious heart arrhythmias, the instructions are to do nothing except follow up with the pc every 6 months. Hannah COULD outgrow this. Hannah COULD never have a problem from WPW. She COULD go into SVT, and if they think she is in SVT, then they are to try home external measures stimulating the vagus nerve to bring her out first such as ice on the face and neck, gagging her and taking her temperature rectally. (Wha??? cuz apparently having something up your butt calms the heart stimulating the vagus nerve?) As she grows, if she is in SVT, she will be able to communicate it as it is a rather unpleasant condition to be in. She may also be able to stop it on her own with cold, fizzy drinks, popping her ears, holding her breath, etc. Yes, strange, but google it, you will see. If these measures don't work and she has been in SVT for a while (hour) they are to calmly take her to the ER where medications will be administered to bring her out of the arrhythmia.



LONG TERM:
Many children with WPW never have any SVT or other arrhythmias. Some do. There is no evidence that being in SVT damages the heart long term. Some require medication because of complications. Some don't. There are procedures such as an electrical impulse attempting to close the extra pathway available. Hannah should stay away from stimulants like caffeine, smoking, alcohol and certain medications. There are no restrictions to her activity, but as she is older, she will be able to tell if strenuous activity causes her problems.




HOW ARE THE PARENTS:
Good question. They were stopping for lunch at Buffalo Wild Wings to Mindi's dismay when she called because Matt needed a beer. Mindi was doing okay. Taking it all in. I was googling stuff and reading her stuff as she listened on the phone. As with researching ANYTHING, you are going to read best and worst case out there. So, you have to take it in stride. Then you are going to read a site that says MEDICATION NEEDED only to realize you are on a drug company's page, etc. You have to filter and do what is best for you and your family. I am so glad I will be able to see them Sunday and a couple days after.



Please keep them in your prayers:
For Hannah to outgrow the condition and God to remove it from her life
For the condition to give her NO complications
For easiness and rest of those surrounding Hannah. (china doll syndrome, as I am going to name it)
For ease of mind of the parents.
For a normal life.




I would love to close this post with a recent picture of beautiful Hannah, but as luck would have it, she has also been plagued with a vicious case of baby acne, according to Mindi. So I will leave you with a photo which I have posted before:





Thanks for your thoughts and prayers and wishes. Mindi reads these comments, too, so please direct your comments as though they are for Mindi today.



KEEP BELIEVING