Is about the only thing I have been feeling lately. You know, I look back to the days of the NICU and you think for some reason when you leave there that things are going to be okay. Things will never be like they were there. But that is so wrong. I find myself more worried, more stressed and more confused now when A gets sick than I did way back then. It totally sucks. I mean for real. He is going to be four in June and yet the nightmare continues. The worrying every time that he gets sick. It is always in the back of my mind that something horrible is going to happen. That my absolute worst fear will come true. That I won’t have this smiling, adorable little guy here. No mother should have to think of this when her child gets sick. But it is just yet another crappy thing about being the mom of a preemie, the mom of a child with special needs, the mom of a child with many health issues. We are not oblivious to ANYTHING and know that ANYTHING can happen.
So A has been sick since the 16th of February. Februay 18th I was told that he had pneumonia. Last Wednesday he seemed much better. Same goes for Thursday. Thursday night however his nurse woke me up and told me that she thought he needed oxygen because his sats would not stay up. (She does not have an order for oxygen therefore has to wake me up in these circumstances.) He did fine on 1/2L.
Friday morning he is fine. Doesn’t even need the oxygen. Friday was a good day. He had three workers here and did great with all of them.
Friday night went to bed fine. (I did have him on 1/4L because it seemed that at nights was when he was needing that little bit of help.) Wow, what a crazy night. He was AWFUL. At 5am I really started to get nervous. He was not going above 80 and if he did it was not for long. I had him up to 2L and it was not doing ANYTHING. I held him and that didn’t help. Finally about 6:30am he settled back down and was satting 90ish on 2L.
By 8am I was in his room getting him up yet again freaking out.
Talked to my parents around 9am and thought I needed to take him to the hospital. I figured I might as well change his oxygen tank as I knew that it was getting low and wanted a full one for the trip. Shut off the tank and then went downstairs to get a new one.
Come up and he is satting in the 90s with NO oxygen.
Talked to my mom and told her that I wasn’t going to take him. Pretty sad when you hum and haw over taking your sick child to the emergency because you know pretty much how useless it is going to be!!!
Had an okay day yesterday. Only needing 1/4 or 1/2L to sat well.
That was until he wanted to sleep. I held him (he only cuddles when he is sick!) and he fell asleep. That lasted about ten minutes max. As soon as he goes to sleep the difficulty breathing and crappy sats start.
Stayed up for the rest of the day. Was good.
Last night he was exhausted and I put him to bed at 10pm. Was asleep within 15 minutes, on 1/2L with sats in the 90s.
I headed to bed as I could barely keep my eyes open. Daddy stayed up so that I could get at least some solid sleep.
3:30am I am up to the lovely sounds of the monitor. From 3:30-5:30am I did everything I could think of. Turned up the oxygen, gave him a breathing treatment, did nose drops, checked his temperature, did some deep suctioning. You name it I tried it. Sats would NOT come above 90. He was snorty, tired and just having a crappy time. I picked him up hoping it would be a bit better. He was good until of course he would fall off to sleep.
I just held him and cried my eyes out. I am sure that my pregnancy hormones do not help with this, but I friggin HATE what my poor guy has to go through. It just isn’t fair. It sucks and that is the bottom line. And it sucks even more when I am worried but yet scared at the same time to take him in. I mean really what are they going to do different for him? The only thought I had was that they would most likely vent him and because I know he is fine awake I am not okay with that. It freaks me out. I hope to God that I never ever have to see him vented again.
So ya, I just cried and cried. Told him how sorry I was. How angry I was that no one ever helps him. Sorry that he suffers way too much for being a three year old. How I felt like a shit ass mom for not being able to make him better.
Life really sucks sometimes.
But I try to remember the bright side. I have my son here with me. I can love him, cuddle him, kiss him.
And then he smiles.
Well since it was just Thanksgiving weekend I thought I would do a post on what I have to be thankful for this year.
First, my husband! YES, I can finally say “husband”! He is amazing and would do anything for me and anything for A. He tells me AT LEAST once a day (and everyday-no joke) how beautiful I am and how much he loves me. He understands that although my life seems to revolve around just A that I love him just as much as he loves me. A relationship will always change when you bring a child into this world. A relationship changes even more when you bring a preemie into this world. And it changes even more when you bring a special needs child into the equation. But throughout our ordeal and A’s approximate 371 days in hospital we have held on. We have overcome SO much that many probably would not have been able to. Did you know the divorce rate for families that have special needs children is about 85%? But instead of not being able to work things out we did the opposite and got married!!!! Sunday August 17th 2008….one of the greatest days of my life!
A. WOW what this child has brought into my life is just amazing! He has been a fighter his entire life and that has not changed. He struggles with things every single day. He endures many painful, uncomfortable procedures but yet he still smiles. He is SO happy that I sometimes forget how hard life is for him. A is the most determined child that I know. He definitely knows what he wants and he is always trying to GET what he wants. Or DO what he wants.
I know that we all don’t know what life holds for my little man, but one thing is for sure….he enjoys life every single day! It is very hard for me to think of the future and not get worried and scared but his smiles, his love, JUST HIM take those fears away most days.
My family. My parents are amazing. They have done everything and anything for me. They have always supported me 100% and believed in me.
My brother and sister.
My new sister.
My extended family.
My wonderful friends who I do not see enough of!
All in all, an amazing life!!!!!!!!!!!!!!!!!!!!
First, a very happy 19th birthday to Aunt Shorty!!!
So I seem to be really slacking on updating this blog, but this summer is just crazy busy so forgive me!
So I had my bachelorette on the 18th and it was fun and all of us had a great time. The only crappy part was, the Friday night that I got there I started with a sore throat! By Saturday night I had a pretty bad cold and my throat hurt just to breathe. I didn’t get ANY sleep and needless to say the drive home on Sunday was long and I just wanted to cry I felt so sick. When I got home I ended up in bed and tried to sleep. A had a good weekend with daddy and grandma and was a good boy.
Monday the 21st I had my four wisdom teeth pulled under a general anesthetic….figured I might as well feel like crap for everything all at once! If I didn’t get them out that day then I was looking at waiting until September and there was NO WAY that I could wait that long. They have been so painful and keeping me up at night. Recovery went very well and I only ended up taking pain meds on the Wednesday. Much easier than I thought that it was going to be!
Tuesday evening (the 22nd) I noticed that A seemed to sound congested. While we were out I picked up some benadryl to give him to hopefully help him sleep. By Wednesday he was VERY sick. He is now on a monitor at night again as I need to know what he is doing. Overall he has been doing pretty good but there are definitely moments where he drops very low and does need some suctioning and stimulation. I just hope that I am able to keep caring for him here and not have him end up in hospital. This is now day 8 for him and he doesn’t seem to be getting any better. I however still have a bit of congestion and cough so I am not too worried at this point.
So since my last update not too much has been going on as we have been kinda trying to recover and get better. It totally sucks being sick! I tried SO hard to do everything right but of course he still ended up getting it from me.
On another note, today was the day that A got his wheelchair. We are trialing it for a month and see how it goes. If I am happy with this one then they will order the same and if not then we will trial another one. I was excited to get there and see this wheelchair and have something for him to finally sit properly in and get rid of this darn stroller that I can’t stand! At the same time it is hard because although we have always known that he would end up in a chair it is reality. I have to tell you though, he sits AMAZING in this chair!!!! We will definitely have to use it a ton more to see how it works and we base our decision on the chair very well.
When we got out to the car and loaded up the wheelchair and his stroller I was okay. It was when I looked in my mirror and saw the wheelchair in the back that I started to cry. There definitely is a process that I will have to go through to deal with this. J and I have both been talking about this wheelchair for a bit and I know that we both hoped that maybe, just maybe he wouldn’t need one. High hopes, but as parents it is one of the hardest things to accept. That your child will never walk.
Anyways, A and I went to the mall afterwards so I could try it out and get a few things done at the same time. So far, no complaints! The only complaint I do have is how many people STARE! It drives me up the friggin wall. Now most of the people that stare are children and really they don’t any better, but it is their parents job to teach them about how kids can be different. When kids aren’t told about things like this then they just don’t know what to think. Well anyways, that is a whole other post.
Daddy came home from work pretty early today and when I heard him come in I went into the kitchen. He looked at the chair and said “wow, his other one didn’t look anything like that.” I said “what, like a wheelchair?” Then his tears came. We hugged and cried together.
Wow, it has been a while since I have updated this blog!!! No wonder I have been getting the odd email asking how things are going. Well, things are actually going VERY VERY well!!!! A has still not had any vomiting issues and I don’t think I recall much gagging either. His feeds have changed dramatically since getting the g tube and it seems to have really helped. He was getting feeds every four hours in the day and then nothing from 11pm-9am but now we are on continuous from 10:30pm-8:30am. He then gets a feed from 11am-1pm and 6pm-8pm. And knock on wood this is helping big time! I am slowly going to try to increase the amount to take time off but I am sure going to do whatever works for him.
Things have been totally crazy around here trying to do wedding planning and getting things in order. Time is going so quickly and I am so worried that something isn’t going to get done! I have been hard at work making all of my own invitations and reply cards and WOW is it sure a lot of work! I didn’t realize how much work is put into a wedding until I started planning my own!
Today the pastor came over that will be performing our wedding ceremony and he was great. J and I will start marriage counselling the end of May which will consist of four one hour slots. I had to laugh to myself kind of when this came up because God knows that if we have made it through what we have then we sure will be fine!!! I don’t know how many people that have a child with A’s needs, hospital stays and issues would survive. I actually have to sit back sometimes and realize how proud of ourselves we should be. And to think that after three of the hardest years of our lives we are more in love than we were before A! This wedding is going to be VERY emotional and I am getting so excited for the big day!!!!
Anyhow, back to A. He has also been satting pretty well at night still, above 90 which is okay with me. He still does drop but is not requiring oxygen since the last bit where he did. He however has a new thing that he does which is dropping his heart rate too low. The nurse was here last night and said he did it 27 times. I even know during his nap he does it and I have NO idea why. Most of the times when it happens he is satting at numbers you typically don’t see with him! LOL If it isn’t one thing, it is another with him. I am a bit concerned as I know this is new for him but he does pop right back up so I feel much better with that.
Lately, J and I have been having a hard time dealing with how upset A is getting. Last night was pretty rough because he was SO fussy and all he wants to do is stand up. He loves when you hold him up and he can walk around. His eyes light up and he is SO proud of himself. After long periods of time we need to take a break because he is so heavy and he gets very upset. He just wants to go. I almost started to cry last night because he knows what he wants to do but yet he can’t do it. He is really changing in this way with everything around him. Even toys, he tries SO SO SO hard to get things and when he can’t he gets very upset and frustrated. It is wonderful that he is trying so hard, but it is becoming apparent to J and I just which way things in life are headed for A. As he gets older it is much harder to please him and he just wants to keep on going. Lately I have been walking him for up to two hours a day because he just doesn’t want to do what he used to do. He loves being outside so I do it to make him happy.
On a good note, I received a call the other day from a doctor that I have been waiting to see since last August. He is an eye doctor and he is supposed to be VERY good at what he does. They actually have two weeks out of the year where families from all over the world bring their children to see him. He has students that interact with the kids and then after an hour of observation he is supposed to be able to tell you what they see, how they see it and overall what their vision is like. I am very excited because lately I find putting on A’s glasses that he doesn’t want them on. The appointment isn’t until June but it should be interesting!!
Speaking of June. WOW, we are already in May. My little man is going to be THREE next month!!!!!!!!!!!!!!!!!!! YIKES, where does the time go?!?
Well the big day is Monday at 8am for his fundo! I found this out just after I had done my last update. I am still very nervous but I have a lot of confidence in the surgeon that agreed to do it for me. Please everyone say a prayer for A that the procedure goes well!
Today at noon he is having an ng tube put in and then at 2pm we go down for his milk scan to check for delayed gastric emptying. They will be giving him 30mls over 10 minutes and I just hope and pray that he has no delayed emptying at all!!! If he does then they will have to do another procedure while doing the fundo where they make an incision to help the stomach empty faster. However this can then cause dumping syndrome and wouldn’t be a good thing.
Now for some other great news. A is now under care of the complex care team here at this hospital. I struggled with the decision at first because I really have had everything done that I wanted with the team that is on. However they are done in two weeks and then it would be a new team. So this way the complex care team will follow him no matter where in the hospital he is and even after we are released. I feel really lucky to have this option because this team only has so many spaces for kids and they agreed after speaking with me yesterday that they would take him on.
I talked to the main doctor for a good hour and was very impressed with him. I voiced my concerns about how I worry that the plan we have in place won’t happen but he assured me that all would work out the way that it should. It was kind of a difficult conversation because we spoke a lot about if the fundo doesn’t work, about the trach, the vent and then care if he became very ill. He did ask me what I would want done for A if he was really sick but I told him that I can’t answer that because it is something that I would have to be dealing with at the time to know. It is so hard to think of all of these things that the docs are speaking of. Sometimes I feel like A won’t ever be coming home again. I have been loving him every minute of everyday and taking a ton of pictures. I am a worry wart so this doesn’t help matters!
When speaking to this doctor as well he wanted to know what a bad day looked like for me. How I handle things. If I struggle. How dad does. I think he was pretty shocked when I told him that I feel like I have always known that I would have a child with special needs. How I can’t imagine A being any other way. He told me that Ashton sounded like he was very lucky to have me as a mother and how he thought that we were a perfect fit.
Perfect? I totally agree.
Yesterday we took A to see a special needs hockey game. I was looking through the kidsability book the other day and saw that they are now in their second season for children with special needs. It is mixed boys and girls and the ages range right from 4 years old up. I have to say that I was very impressed and wasn’t really expecting to see what I did! Most of the players were actually very good and most were great skaters! There were of course some kids that were just skating around the outside of the rink with help, but it was awesome! I felt myself getting emotional a couple of times. Like when the ref took one young child from each team, placed them in front of the net and then let them take a shot. Of course the goalies obviously know to LET them score and they were SO excited! There was also a young guy that was too worried about making sure that his parents were watching him and they kept telling him to get in the game. I am pretty sure that he had cerebral palsy too. When we get closer to the age of four it is something that I am definitely looking into for A. There were no kids in wheelchairs, but hopefully it won’t be an issue. I’ll have to bring a box of kleenex when A is out there! LOL
Last night we went to grandma and grandpas for dinner. They had cut down a tree from the yard and it is The Charlie Brown Christmas Tree!
Now for today. UGH what a day! J and I were up early to get things done and A’s PSW was coming for noon. We left to head to the mall to get a couple of last items and on the way there the car made a HUGE noise and it stunk! Scared the crap out of both of us and we pulled over at the next street. We looked but didn’t see anything wrong. So we decided to go back to see if we had run something over. Nothing. I didn’t think we hit anything. So J turns down a side street and I’m telling him he should be going very slow because we didn’t know what it was. As soon as I said that there was a bang and the front tire had blown. So we call my brother at work and he comes out to change the tire. Well as soon as he gets the car jacked up he sees that the front right spring it shattered! That was the first bang we heard and then because it was shattered and we were driving it punctured the tire. So we had to call CAA and wait for a tow truck. A half hour later the truck comes and he tells us that he can’t tow it because he would wreck the oil pan. We then have to wait for a flat bed. Well he comes and tells us that he can possibly do more damage because there is no suspension on the right side of the car and he has to tie it down. We finally get to the garage at 2:30pm. Thirty minutes after we should have been done and home!
Grandma had come to our place however for 2pm so his Dawn could leave. My brother was able to get the parts in and was going to stay after work to fix it because we are supposed to head to C-town on boxing day. J and I get a loaner car and head to the mall to do what we had set out to do. That is when my brother calls and says that he can’t fix it today because it needs more parts! Now what? Who knows. We didn’t end up making it to C-town for J’s surprise 30th birthday and now the day before Christmas, this.
It is all kind of strange because I think I knew this was going to happen. I’d say for about the past two weeks I have been very nervous sitting in the passenger side of the car. I was constantly holding the door handle or the handle above. It is like I had this feeling of the front right side of the car dropping. Now I know why.
We just do things different. Since having A I have realized how cruel this world can be and just how much this world needs to change. I cannot believe at this day in age that “special needs” is still not as accepted as it SHOULD be. I still can’t believe when I go into stores and they are not accessible. I still can’t believe how many people stare at us. I can’t believe how many people look confused and scared. The pity look is the absolute worse. I pity them for they don’t know such an amazing child!
I truly believe that “special needs” is something that needs to be taught in grade school. I also believe that parents need to play a role in their children(s) life and teaching them that it isn’t okay to make fun of others. It isn’t okay to laugh at others. It isn’t okay to be mean to others. BUT how can this be done when it is the parents that are scared of these children? How can it be done when they are the ones that don’t understand to begin with? How can it be done when they never think it will happen to them or someone that they love?
I am certainly not meaning that everyone in this world is mean. There are many caring people out there. I have met PLENTY while out with A. THREE ladies in particular I can remember. All were in tears by the end of our conversation. But THREE out of the thousands that I have come across is just not enough. There is NO reason why in the year 2007 that things are the way that they are. Maybe even just showing a class a video like this one can change the thoughts of some…..or perhaps sending it home for the parents to watch as well?