Surgery (lengthy, warning... )

Wow, so much has gone on since I was here last. I updated Nicholas' Caring Bridge site during the surgery as it was much easier to do. I am back now that Nicholas is home, but I have no idea what to say about what went on except that I am grateful it is over. Ok, I have a lot to say....

Nicholas' surgery went very well all in all. The most difficult part was that we didn't get a status update until like 6 hours into it. We thought at that point it was going to be done. When they came out to status us and they said, "ok, we are just about.... " , I thought I heard the words "done" but instead... "ready to put in the rods", the doctor said. I think I was wishing it to be done so badly that I was hoping he was going to say done. Nope, one more hour at least. Afterwards, they came out and said he did great, we could see him in about 45 minutes. I thought Thank GOD, the waiting was the worst. We left Nicholas at 715 in the morning, me in dreadful tears holding on to Ray, and didn't get to see Nicholas until 430pm.

He was intubated, which we knew he was going to be, but his face was not that swollen. The doctors said it would be as he was laying on his stomach during the entire surgery so this is normal. He looked angelic. Even though he was intubated, he looked very peaceful and straight!!! His back was straight. He was under covers, but was laying so tall. We all noticed that right away. He was already different in such a great way. When we saw the xrays, we saw the miracle that took place there that day.

from my cell phone of After and Before...



We were shown his lungs, the two black oblong things near the top of his chest cavity. Note how they are both different sizes due to his spine squishing one of them. It will take a while for things to look something even close to normal inside his body.

The first few days Nicholas slept for the most part. He was on morphine, an IV, had a central line and other lines that I can't remember what they were, and had a catheter. He came off of his breathing tube the first morning after surgery. Everyone was so impressed with his recovery from day one. He was such a great patient. All the nurses oooed and ahhhed over how handsome he was and what beautiful eyes he has. He didn't seem in much pain because that morphine was amazing! It is quite deceiving actually. He was in ICU for 2 days and nights and then moved down to the Step down unit which was a lower level ICU. He was there 5 days. Ray and I traded off staying the night with him so that someone was always there day and night.  

I am giving the quick version for sure. There was so much going on that it is hard to really put it down in words. We were exhausted, but we had great support from family and friends. Nicholas looked like he was 4 months pregnant due to him not going to the bathroom. It was terrible. They were giving him everything under the sun to go but they said it was very normal and we just had to wait. It did finally happen but the tummy remained swollen and large! It is finally back to normal as of today.

Nicholas is home now and we have a hospital bed from our insurance for him to recover in. Ray and I again are taking turns sleeping in the family room with him where we have his bed. We have to change his diapers throughout the night and give him pain meds as they only last 4-6 hours. I have wonderful friends who are helping take and pick up Maddie from school. It is hard to reach out but this is one time that I felt I needed to just let that go and ask for help. I am so grateful.

Speaking of my other baby. Maddie is doing great considering. She is just going with the flow so well. The Child Life specialists at Shriners were wonderful with her. Making pictures for Nicholas' bedside when she couldn't go see him. Each girl in her Daisy troop made a picture for Nicholas for us to take to his hospital room. Maddie couldn't see Nicholas for 2 days while he was in ICU so she was so excited when she did finally get to see him. She really is just as amazing as he is. She loves her brother so much. The hardest thing to do is try to give her as much attention as he is getting right now. I just don't think it is possible, I am so tired. I give her what I can and so does Ray, but Nicholas is really of course getting so much more right now. The guilt, it kills me.

Nicholas had PT yesterday for the first time and he did great considering. His pain meds though are a trial and error thing. I thought he could just take a 1/2 dose so that he could be more alert during PT but at the end he cried. I felt horrible. He has barely shed a tear during this whole thing and I make him cry because I didn't give him his full dose of meds. UGH

  

Over the weekend he was having back spasms so we gave him the valium the doctors prescribed at Shriners. Well, he starting having lot's of seizures. We paged his Neurologist to see what we should do. Unfortunately we had to wait it out. The doctor said he shouldn't have been prescribed the valium as they make his seizures worse. Again, guilt, felt horrible!! Ray and I couldn't keep our eyes off of him. Checking every two minutes to make sure he was breathing. It is just the worst thing in life worrying so much about your child  and knowing that you caused the situation. WE gave him those meds. I know the doctor prescribed them but it still makes me feel like a horrible parent when things like this happen. He is completely, solely relying on us for everthing. When it goes wrong, it breaks my heart and I tell Nicholas I am so sorry. I just hope he understands.

Today, Nicholas is sleeping lots. Again this morning he had a bout of seizures that were "different" than his normal type of seizures. Sounds weird to say but it is true. I talked to Ray and we decided again to call the Neurologist just to make sure. We hadn't given him any more Valium since the first time we did but he was still on his Tylenol with Codeine. The doctor had told us though that he should be fine with that and since he was on this in the hospital I just wasn't sure what was going on. Anyway, the doctor said to just hang in there, Nicholas has been through so much and his body might act weird for a while. Ugh, more waiting.... the seizures finally did ease up.

We are taking this day by day for sure. I want things to happen so fast but it just isn't going to. I want all of this pain stuff to be over for my baby but I think it is going to be a long time before that happens. I am trying to look at the big picture when I get into this mode of thinking. I just have to remind myself to do so. Bless you Shriner's for giving this gift to Nicholas. We are forever grateful and honored to have you in our lives.

Surgery Day

Please check Nicholas' caring bridge site for status updates. I am having a hard time updating both.

WWW.Caringbridge.org/visit/nicholasasbell

Thank you all for your love.

- Posted using BlogPress from my iPhone

Location:Shriners Hospital

Cherishing Precious Moments

Well today I find myself being a bit emotional. Not sure why. I have known this is coming. We have planned and organized and talked about it until we just can't do anything else. I have been cherishing every precious moment with Nicholas since he has not had any programs going on in our house. It is just him and I while Maddie is in school. When she comes home, it is all Maddie. She needs special time with her Mom and Dad and after school and into the evening is hers. When Ray comes home from work, it is his time to cuddle with Nicholas and get his special time in. Maddie and Ray have their thing which is rough housing. Pretend Kung Fu and just general roughing around. Although at times it literally drives me nuts, I know they both love it. Both my kids love cuddling and there isn't a day that goes by where Maddie doesn't say, "let's cuddle mom". I love that. I know it won't last forever. I know that even though Nicholas can't speak, he is always up for a good cuddle. That is just what we have been doing every day for the lasts few weeks.




I know that soon, I won't be able to hold him and cuddle with him like I can now. Eventually it will happen, but it will be a while. Today we listened to my Pandora radio ambient music station while we cuddled on the couch. It is hard to imagine a 75 pound 4 foot 8 inch tall boy, cuddling on his mom, but it is true. We have the kind of couch with recliners on the end. I pull out the recliner, bring Nicholas up and he literally lays on my side with his head right in the crook of my neck and just snuggles right up. He gets the biggest smile when we get settled. We pull up our favorite throw and he grabs one piece of it and makes his little cuddling sounds; it is his self soothing sound. To me, it is music to my ears.

I realize this sounds like something that happens with your 2 year old, but Nicholas' functional level is that of about 1-2 year old so it just makes sense. He loves body contact just like a baby does. It is his comfort zone. Ray and I laugh about how it will look when he is 15, but I am sure we will just make a few changes and still be able to cuddle.

Today before he fell asleep, which he always does, we looked at each other in the eyes and sat there for a while like that. He has the most beautiful blue eyes. I always wonder what he is thinking. I tell him how much I love him. I tell him he is the best boy in the whole world. I tell him how much he is loved by so many. It is our time together. Sometimes we laugh. I tickle him and he just cracks up. Other times I do "light touch", Maddie's word for it, on his back of his arms. Just lightly dragging my fingers up and down. It puts him to sleep so quickly most times. He gets goosebumps, which are my only way of knowing that he really does like it, other than that he turns his arm different ways to make sure I get all areas. It really is so sweet.

Nicholas is innocent to the core. I said he falls asleep fast and it is true. He has no cares in the world. He doesn't lay there thinking of what he has to do tomorrow. He doesn't think about his friends and if they like him or not. He only knows love. He is truly always in the moment. What a way to be. There are times when I wish I could not have any cares in the world. It is such a blessing for him. He doesn't know any hate or jealousy or envy. He isn't aware of all the tragedy going on worldwide. He doesn't see the depressing stories of murder and devastation on the news. He can easily fall asleep because he is just pure at heart. Completely pure at heart.

Today I cried watching my baby sleep. Not crazy, just tears. Tears of everything coming to a boiling point soon. Tears of sadness that I can't explain to this beautiful child what is coming his way in a week. I pray to God every day that he helps everyone get through this. That he watches over Nicholas and helps him understand, somehow that this is something that has to be done and he will be so much better after.

Baby Mine dry your eyes, baby mine don't you cry, rest your head close to my heart.......

Surgery Countdown

Why I ask, is it that as we get closer to Nicholas' back surgery, everyone in the house decides to get some sort of cough, sniffle, sore throat, runny nose thing? Poor Maddie has had it for a month and at this point I probably have to admit that it just might be allergies as Ray has said for a while now. The cough though is terrible. It just can't be "drainage". Really? Making her cough so much that throwing up each day is the norm from a bout of coughing?

When she was a baby she had bad colic. Why do I bring this up? I just happened to remember her Peds. doc saying when he put her on Zyrtec for GERD, that this is something that will probably be with her for life. Now as she coughs and then throws up from coughing so much, I think it is all related. Poor baby. She is so good about it, but I know she is just over this cough. I know the rest of us are not getting any sleep and neither is she. Ray took her to the Urgent care clinic over the weekend because she had a low grade fever. I panic thinking, RSV, Bronchitis, Asthma, walking pneumonia. The doctor says it is probably just allergies. Keep her on Antihistamines daily blah blah blah. Not that I wanted her to have something other than that but is she going to be coughing all through allergy season? I have left a message now with our Peds. doc to see if he can prescribe at least something for her at night. My Grandmother's old remedy of a little whisky, lemon juice and honey was sure sounding good the other night in the midst of a coughing spell.

Yes, the title to this blog is Surgery Countdown.  And why does someone want to stress me out and bring all this coughing and sneezing and sore throat stuff into my house when we only have a few weeks to go? Nicholas has been healthy for a while. We are giving him extra vitamins each day and echinacea drops as well. If he gets sick, his surgery will be postponed. It just isn't an option. We have all geared ourselves up for this as much as we can. My Dad is coming out to stay with us for 9 days to help, tickets have been purchased. It would be horrible.

Although my heart breaks thinking about every moment of this surgery and all that it entails after, I just know in my heart we have to get through this, for Nicholas. He will need us to coddle and love him so much more than we do now. I give him and Maddie all I have but somewhere, we will need to find the extra from within to give even more so to help him. Our voices are the only thing that will soothe him other than pain meds.

We had our Pre-Op last week and met with so many people. Shriner's is awesome and they really do care about their patients and their families. They want to be able to help Maddie get through this and understand why her brother is going to be in so much pain. She loves her brother so much and it will be very difficult for her. It sounds terrible to say but it will be hard giving her the much needed attention during surgery time when I know we will be spent physically and emotionally with Nicholas and being there for him. When we were in the hospital for Nicholas' G tube and when he had a bad flu in December and was admitted, Ray and I made a major effort to take her out to lunches and dinners while the other one of us was with Nicholas. She likes that and I know it helped her feel just as special as Nicholas is. To Ray and I, she is a bright light in a sometimes dark room. But when we go through these things, I can see her little brain thinking "he gets so much attention". We know this is always the case of a sibling of a special needs child. We have read about it and are prepared for it. Right now, she is great about everything so we try to head it off at the pass and do special things now, knowing it won't always be so easy.

Shriner's asked how do we know when Nicholas is in pain? Our answer since he cannot talk is that he cries. It is true. Nicholas literally never cries unless he is hurt or just doesn't feel good. This will be our ultimate test of advocacy for him. We have fought hard in the past and have won so many battles on his behalf but this one, is huge. I have high expectation's for Shriner's. Our main concern is that Nicholas' pain be managed effectively. I am sure with his pain meds and seizure meds, he will be sleeping a lot and that is fine with us. Just sleep through it baby, just sleep through it.

"Baby mine don't you cry, Baby mine dry your eyes, rest your head close to my heart never to part, baby of mine." The Dumbo tune I have sang to Nicholas since he was in utero after we found out he had a stroke. I have sang it to him since and Nicholas knows it is me and OUR thing when he hears that song. It always soothes him. I will be relying on it.

"Number 2"

Wow, pretty funny that I would be so excited about "number 2", but I am. Nicholas just went "number 2" in the potty!! This was huge!!! He hasn't gone poo in the potty in I am guessing 2 years. A little background before I get right into the nitty gritty. If I have already lost you, I am sorry, I just had to note this special day with a blog.

Nicholas is still in diapers. He is going to be turning 11 this summer. Don't get me wrong, he has had so much success with potty routine. He has come a long way, but it has also been a very long road. Most people are done with the joy of potty training by age 3, maybe 4 if you are unlucky. Maddie was pretty much done at 2 and I remember being so thrilled to not have 2 kids in diapers any longer.

Nicholas' situation is a bit more difficult. He is neurologically impaired, and so the doctors didn't know if he could even go potty on command or have the capability to "hold" it and stay dry for a period of time. But the doctors also said he may never walk, make sounds or be able to communicate in any way also, and he has proved them wrong little by little.

I remember when Nicholas was younger, potty training age, I had hope that he would totally get it. Hope is something you never ever give up but over the years, I have to admit it has wained a bit when it comes to potty training.

Nicholas is brought to the potty every 45 minutes during program which is M-F for most of the regular day hours 8-5. The rest of the time with us during off program hours, we do what we can by bringing him to the potty. We track data every time he goes to the potty. He has an entire potty schedule depending on if he goes, if he is dry, if he is wet and goes, if he initiated and goes, on and on, etc. etc.

i.e. If he is dry and doesn't go, we take him every 15 minutes until he goes, or is wet. If he goes pee, and is dry he gets a break for 5 minutes from his program. If he is wet and doesn't go, he doesn't get a break. It is sad to see him try to get to the living room (where he likes to take a break) when he goes pee but was wet. I still don't think after all this time he understands that he doesn't get a break if he is wet. If he goes poo, he gets a 10 minute break. This is what he got today. I saw on his face that he knew it was an awesome thing that he did.  I still have hope, but not sure that it will happen again any time soon.

I have to say, for me, it is heartbreaking though to have to sit right there with him while he is having such a private moment. Unfortunately, with his seizures and instability sitting up on the potty, for his safety, it will be like this for a long time. 

Potty routine is not only "going" potty on the toilet and being dry in the diaper but it also includes everything from turning on the light switch to washing hands after. All of these things are prompted and originally started with a hand over hand prompt and are now anywhere from an elbow to a bicep prompt.

It is getting more strange to do the diaper thing. Ray and I have gotten it down to a science after all these years. Which diaper is best, how to tape them the best, how many we need to have with us when we go out. We have boxes and boxes of diapers in our garage along with chux and diaper pad inserts and boxes of wipes.We are diaper aficionados I have to say. I remember moving from the cute baby type diapers to the more industrial looking ones as he got older. I was sad. It was something that I really didn't imagine. It felt very "old-folks-home"-like to me. It really is minor in the whole scheme of things now that I look back at it. But at the time, it was like losing a little bit more of my dream of having a child who might "grow" out of these special needs he had as a toddler.

Now, he is in early puberty in all its' glory. This is very weird. It just doesn't seem right for me to see my son like this. He is completely dependent on us though. He doesn't know how to wipe or to stay clean without our help. Very sad but all the more reason for Ray and I to step up to the plate. God knew that he would be in good hands with us, I truly believe that now after all these years. I wonder what it will be like when he is 15 and I am doing this. We will just take it day by day as we always do. At 15 though, I know lifting him off the floor to take him potty will be much more difficult on my back than it already is. Again, all the more reason for Ray and I to take care of us, so that we can take care of him. Gotta go, time for potty for Nicholas. :-)

A Yes and a NO

There is just SO much to write about and my mind has wondered from one thing to the next when thinking about what to blog next.  Our lives are filled with so many moments that are funny, interesting, happy, sad, scary and every great now and then mundane.

One of those happy moments happened yesterday when I was going to see if Nicholas wanted to eat oatmeal for breakfast. You see, since he had his G tube placed a year ago, he has gotten lazy with eating regular food. He CAN eat and swallow just fine, that was never a problem. He does however have a LOT of food sensory issues, I am sure an Autistic thing. Foods like rice are very weird for him. I think it is like each grain of rice feels so exaggerated in his mouth. He is very aware of each little tiny piece. For us, it is just a bite of food. For him, it is soooo much more than that. He will hold it in his mouth and we encourage him to swallow, but most of the time we end up having to scoop it out. Anyway, it wasn't that he ATE the oatmeal that was my happy moment. It was that I asked him if he was hungry and he said "eeeeyyyy" which is his word for yes that he uses every great now and then. I said "great, let's eat some oatmeal." He immediately shook his head NO. This was HUGE! It was a real conversation!...for us. You don't understand. These moments are very rare. If the fog of a bad seizure hasn't glossed over Nicholas' personality, then it is just him not wanting to attend to you. I laughed and said "aw come on, let's try." I put a bite in his mouth since he cannot feed himself by spoon, and he held it. I should have listened to him. My desire to have my baby eat something was stronger than my trust that he knew he didn't want it. It is just a horrible thing to want your child to eat food and they just won't. You feel completely helpless.

I remember feeling so depressed when we found out that the doctor really thought he should have his G tube put in. I cried and cried. In fact, I won't forget Ray calling me on my cell phone because I had a doctor apt. for myself and couldn't go to Nicholas' Neurologist apt with them. Ray said, "the doctor says he thinks Nicholas should have a feeding tube put in." I was driving to my apt and just lost it in the car. By the time I got to the apt. and checked in, the girl who took my blood pressure said "Wow, your pressure is really high.!"It was 150/90! I have never had a bp problem and knew it was directly related to this horrible call I just got.

Here I go.....

Well, this is my first blog. I have been thinking about this for a long time but just haven't had the courage to do it. Not sure why today is different, but here I am.

My name is Cori and my blog is about life with my wonderfully fabulous 10 year old son Nicholas, my beautiful 6 year old daughter Maddie and last but not least my husband of 12 years Ray. Now, you ask why would I blog about my family and why is my blog called Life is GREAT!, Different, but Great!? Sit back and relax....

In 1999, My husband and I were beside ourselves when we found out we were expecting our first child. It took us over a year to get pregnant so when it happened, it was a real joy. The pregnancy was typical from everything I had read. All but one thing....Ray and I were terribly sick with a flu at about 3 months into my pregnancy. We were really down for about a week. I had a pretty good fever which never seemed to break for days. Ray and I just laid on the couch and slept in between bathroom trips for everything you can imagine. I called my OB doctor at the first signs of this flu and was advised to take Tylenol and that was all I could do. After about 6 days in, they prescribed antibiotics. We did survive the flu and thought nothing more of it afterwards. I do remember one thing very specifically during that flu, and I informed my doctor at my next visit. There was an incident where I felt my unborn baby kicking so fast, almost spasm-like, for a brief period. It never happened again and the doctor didn't think anything of it.

We were beyond excited when we went to our first ultrasound at around 23 weeks. Our doctor believed in waiting a bit longer for the first ultrasound so that he could read more clearly the ultrasound and all the details. I did have the early on vaginal ultrasounds and the baby was fine as well as were my monthly check ups. We will never forget seeing our baby for the first time and couldn't wait to find out if we were having a boy or a girl. The ultrasound technician told us what everything was, "here are your baby's fingers, toes, eyes" etc. Everything was there and seemed fine. I remember how wonderful it was to finally see this perfect living thing that I have been feeling nudge me for which seemed so long at that time.  After reviewing everything, she told us she wanted to get the doctor.

When she left the office, we still didn't have a clue anything was wrong. Now in hindsight, it isn't typical that you see the doctor on a visit for an ultrasound. While we were wating, Ray and I chatted about how we would decorate the nursery if it were a girl or boy and I believe we might have mentioned, what if there is a problem? But we quickly dismissed this idea....Nah, we don't have a history of anything in our family, everything has been just fine.

My OB doc came in and said, "what the technician is seeing on the ultrasound is this area".... I was thinking...the technician didn't tell us anything about any concerns so this was news to us. I think the doctor thought we had already discussed the area of concern with the technician already. He showed us an area in our babys' brain that was called an "enlargement". An area of spinal fluid had pooled in this area and it was in his left posterior ventricle. He said it might just be a cyst and some of those just disappear but he couldn't be certain. I don't remember much more of that appointment except that we were having a baby boy.