Omg, yeah I am still sick.......Guess who else wanted to join in? Yep you guessed it, Rylan.
A couple days ago I spent most of the day up in Tucson taking care of my mom as she just had surgery. So Rylan got to stay home and have "man time" with dad. He seemed to be doing great!
Around 6pm he passed out.....if any time he passes out I always want his o2 checked. His oxygen was not bad at all.....but it was lower then normal. So we sat back and ate dinner all the while i kept an eye on him.
The only thing that came as a red flag to me was that he seemed to be breathing really fast. But he wasn't "belly breathing", when I use the term "belly breathing" im referring to when a child has a hard time breathing they will use their ab muscles to compensate.
Nothing seemed wrong, yet he was breathing fast and his heart rate was high......Steven sent me to bed and was gonna stay up and check on him...everything must have seemed fine because soon our house was fast asleep.....
Until 1am the next morning, I woke up to Rylan grunting, (another sign of troubled breathing, very creepy sounding). So I got up and checked on him, stats were still low and his heart rate still, high. Rylan needed to be changed so I asked Steven to help me out, I had to get up in a few short hours so I went back to bed and Steven (being the great dad he is) stayed up giving Rylan another treatment. That seemed to hold him over for a couple of hours, then at 530 Rylan woke us up still grunting, so Steven and I opted to put him on some oxygen. I then I called the Pulmonologist.
I was up in Tucson again taking care of my mom, but Steven kept me in the loop.....for the most part it seemed like Rylan was doing ok.
When we saw the doctor he told us it seemed Rylan probably had a mucus plug that caused some atelectsis.....so we just need to treat until he is off the oxygen. Ok sounds good we can do that........only now......today he has a cough.
So now that momma is able to walk.......I dont need to drive to Tucson, All I have to do is focus on healing my child.......and maybe getting some rest.
So here is to Rylan getting better and off oxygen in time for thanksgiving!
Thursday, November 15, 2012
Monday, November 12, 2012
Lets Eat, Breathe and be Married
Wow....two months can fly by quick. It's crazy how much can happen in a short time frame.
Since pulling Rylan out of school and placing him in the home bound program.....man has life finally got a little easier!
Well It took a little time to get Rylan in the program. Rylan is the first kid to have to do this is Sahuarita so of course everyone had to have a say. After a couple of meetings and driving up to Tucson to get letters from doctors, as well as lots of paperwork.....Rylan now has school at home.
Let me tell you he has been doing AWESOME! (knock on wood). He has been stating better then he has in a long time!
It's been great! But then the special needs mommy curse rears its ugly head and I keep thinking....he has been healthy for TOO long.......whats gonna hit him and when?
If your anything like Steven, as you are reading this your thinking he has been healthy enjoy it! Trust me I am! But you also have to understand that Rylan has a tendency to get sick out of no where!
Well the entire month of October Rylan was kept in lock down...... No No it wasn't as bad as it sounds. Steven and I were finally tying the knot and Rylan needed to stay healthy.....the safest way to ensure this happens is by not having him go anywhere and making sure all that enter our house were healthy and washed their hands prior to touching Rylan.
We did plenty of things to keep Rylan occupied.
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| Reading Spongebob |
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| Watched Football |
He even made GREAT accomplishments with schooling! He is communicating with his head switch better now!
That leads us up to November 1st......the day Steven and I got married!!!! I was lucky enough I had a healthy little boy to be our "Ring Security"
Now that all the smoke is clear, the desert is finally starting to feel like winter. Homes are starting to gear up for the holidays.....Im still trying to keep up on keeping Rylan healthy........But I have failed on keeping myself healthy as I am now battling allergies....or a cold......not sure yet.......so now I get to rock a very stylish face mask when caring for Rylan when my wonderful husband (hee hee I said husband) is at work.
Monday, September 24, 2012
new findings and beginnings
The beginning of the school year was a rough one. As soon as Rylan made his way through the Sahuarita Primary school doors, it seemed like he became a magnet for every virus and germ. He ended up going to school a total of three days, needing a hospital trip after two.
As many of you know Steven and I have made the choice to pull him out of school for right now. It just seemed like he was ALWAYS sick!
It was a tough choice, but we told ourselves if he was always going to be sick how much school was he actually going to attend? We had our wedding coming up and So many fun filled family activities at the end of the year, we didnt want him to be miserable.
So homebound it is, For those who do not know to be Homebound means that Rylan will be receiving a total of 4 hours a week of schooling provided at home. A certified person will be coming out to work with him. These people are going to be the special education director, his teacher, speech therapist, and an occupational therapist. But until this was started we got to hangout!
Rylan has been doing AWESOME! Since he has been feeling great he has been doing soooo many new things. He is vocalizing more, expressing more, etc,etc. It's been GREAT!
Well I have a love for Katy Perry...I admit it. I was soooooo excited to get it her movie. As soon as I put it in, Rylan took it over. and was in LOVE!
SO needless to say we have watched the movie so many times I have it almost memorized.
But today marks day one of his homebound services. Its sooo awesome to see how much Rylan loves to learn and more importantly how smart he is! I stay in another room so Rylan will focus on his task, but listening to him use the IPAD to answer questions was remarkable.
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| Miss Rachel teaching Rylan |
Thursday, September 6, 2012
The age of Isolation anxiety
Isolation.....a term I have come to know quite well. Isolation is defined as
I know many special needs moms have been in this boat at one point. It sucks.
I get frustrated from time to time cause I cant just load up and go somewhere. So many factors determine whether or not we can go out as a family. Every thing from the weather, to how crowded where we are going is. It can be a little depressing.
Here is why I feel Isolated:
Well we decided to let Rylan go back to school part time.
That didnt last long.He went to school again and That night I noticed Rylan was stating all over the place. I wasn't to fond of this. So I kept an eye on him, around 9 or 10 o'clock I went into his room to check on him. His stats were low.
I call Steven and He comes home to take Rylan to the hospital. I took my anxiety meds and I was in no condition to drive. So off my boys went.
Around 5 am they returned home. Rylan was on 2 liters of oxygen and running a fever. Neither Boy had slept so Steven went to bed and I took care of Rylan with my main focus breaking the fever.
That evening Rylan broke his fever and we worked on getting him off the oxygen. After 3 days he was able to come off completely.
But then that led Steven and I to face the fact that we were going to have to do the inevitable. Rylan was not going to return to school. He is being placed in the Home Bound program.
Now as a stay at home mom you are home all the time regardless. But with your child in school you have that 5 or 6 hours of freedom that you can do what you want. Run to the store, get your hair done, etc.
With Rylan no longer in school, this was gonna be a rare treat for me. I know this and Its what is best for my son.
I have managed to be diagnosed with Anxiety Disorder. After all the ups and downs with Rylan it has begun to take its toll on my body. I know some people look at anxiety as a bullcrap disorder.....but let me put it this way. There has been days where have I cleaned my entire 3 bedroom/ 2 bathroom house, with a front room and living room, washed all sheets and made beds, towels and laundry in one day. Because I cant sit still. Not only that I have begun to have health issues.
Its not a bad thing but when you have this disorder and you main focus is your special needs child and nothing else.....it makes things worse.
I have begun falling in a dark hole, where I feel like I have my son in a bubble. I am isolating myself in my house because Im to worried about the germs everywhere else.
I could use a good massage.....
I get frustrated from time to time cause I cant just load up and go somewhere. So many factors determine whether or not we can go out as a family. Every thing from the weather, to how crowded where we are going is. It can be a little depressing.
Here is why I feel Isolated:
Well we decided to let Rylan go back to school part time.
That didnt last long.He went to school again and That night I noticed Rylan was stating all over the place. I wasn't to fond of this. So I kept an eye on him, around 9 or 10 o'clock I went into his room to check on him. His stats were low.
I call Steven and He comes home to take Rylan to the hospital. I took my anxiety meds and I was in no condition to drive. So off my boys went.
Around 5 am they returned home. Rylan was on 2 liters of oxygen and running a fever. Neither Boy had slept so Steven went to bed and I took care of Rylan with my main focus breaking the fever.
That evening Rylan broke his fever and we worked on getting him off the oxygen. After 3 days he was able to come off completely.
But then that led Steven and I to face the fact that we were going to have to do the inevitable. Rylan was not going to return to school. He is being placed in the Home Bound program.
Now as a stay at home mom you are home all the time regardless. But with your child in school you have that 5 or 6 hours of freedom that you can do what you want. Run to the store, get your hair done, etc.
With Rylan no longer in school, this was gonna be a rare treat for me. I know this and Its what is best for my son.
I have managed to be diagnosed with Anxiety Disorder. After all the ups and downs with Rylan it has begun to take its toll on my body. I know some people look at anxiety as a bullcrap disorder.....but let me put it this way. There has been days where have I cleaned my entire 3 bedroom/ 2 bathroom house, with a front room and living room, washed all sheets and made beds, towels and laundry in one day. Because I cant sit still. Not only that I have begun to have health issues.
Its not a bad thing but when you have this disorder and you main focus is your special needs child and nothing else.....it makes things worse.
I have begun falling in a dark hole, where I feel like I have my son in a bubble. I am isolating myself in my house because Im to worried about the germs everywhere else.
I could use a good massage.....
Tuesday, August 7, 2012
Gut instincts and difficult choices
Yesterday was the first day of 2nd grade for Rylan, full of excitement and wonder I took him to school to enjoy.
Come 130 I went and picked him up. He was doing great! We got home and his nurse was there waiting. It seemed like a typical evening.
However I have REALLY bad paranoia when it comes to Rylan and his exposure to germs. As crazy as it sounds my gut always seems to tell me something is wrong with him. Way before it even starts to show.
Sure enough this time my gut didn't let me down. 5:00 pm comes around and it is time for his favorite nurse to leave, at this exact moment he begins to growl. No Not on purpose, but he proceeds to hold saliva in the back of his throat and keep it there. It is by far the most aggravating sound, you just want to cough it up for him. His nurse stays for about 30 mins working on clearing him up before she takes off.
After she leaves Rylan falls asleep. It was early, but it didn't bother me because he only got 5 hours of sleep the night before and had a busy day.
I sat beside him and watched tv while he slept.......He sounded like crap. I tried not to stress to bad about it because he still had a 6:00 treatment, and most of the time it does its job on clearing him out.
So I set him up and give him the treatment and he fails to wake up at all. 30 mins after the treatment I notice his respiratory rate is faster then normal. So I grab the pulse ox. He is at 93 asleep. Not terrible, but not ideal. He still sounds like garbage.
Now you might be thinking...."wow she sounds kinda nuts". In a way I am. My anxiety for Rylan's breathing is stemmed from the many times I have sat in a hospital room praying his lungs will gain some strength. I also have become a worrier. Not only do I worry about Rylan, Steven as well. Earlier that evening Steven called me letting me know his phone was broke. So I had no way to contact him.
Come 1130ish I woke up. Steven is normally home at this time, and he wasn't. So yes Miss Anxiety reared her ugly head. Especially since I had no way to call and see if he was ok. Well since I was up I went ahead and checked on Rylan. The pulse Ox we have always takes a couple mins to get an accurate reading.
So I gave it about 10 mins and checked on him again. Oxygen is down to 92, still breathing fast, and a high heart rate. Im pretty confident now something is wrong. I go look to see if Steven is home yet. Nope.
Come midnight our "bangbus" (as we call it), pulls into the drive and I hear the welcoming sound of the garage door open. So I went out to meet him.
I fill him in on whats been going on with Rylan and he comes to take a look and give his opinion, he agrees there is something off but he is ok and encourages my spazzing butt to go to bed.
After he does his winding down Steven comes to bed, and tells me something I NEVER thought he would have considered. We should home school Rylan. Its been one day and he is already sick, this doesn't give him warm fuzzes about cold and flu season.
This breaks my heart a little because school gives him so much joy. No mom wants to take away one of the few things their child looks forward too. But it looks like there really isnt much of a choice.
We went to bed with the intention of seeing how he was in the morning. Come 4am I hear Rylan grunting alot, but he was laughing. I check his stats to see how he was doing 87% oxygen now. REALLY?
Well since I know I can be overly paranoid about Rylan, I asked Steven for his opinion. Rylan was needing to be seen. The only problem is we both have had 3 hours of sleep and were in no condition to drive all the way to TMC. So we pulled out the concentrator and threw some oxygen on him. I know this sounds horrible but we have been told this is ok. He seemed to be fine on 2 liters, any higher we would have taken him in right then.
So back to bed we went and got up about 3 hours later, to take Rylan in. Steven started to have his reservations because Rylan was laughing and happy. I still wanted to go to the ER because he was still breathing fast and needing oxygen.
I called his pulmonologist asking for their opinion, after about an hour of not hearing from them, we were en route to the hospital.
I know it seems strange that we would have Rylan obviously not doing good and take our time going to get help. Fear not we both know what we are doing and have Everything we need to keep his O2 up at home. He didn't seem distressed so we weren't stressing.
As soon as we got on the freeway the pulmonologist calls me and lets me know our choice is good. Go to the hospital. We get to the ER and they start to triage him right away.
As soon as the nurse puts the pulse ox his heart rate his beeping loud alerting its too high. Yet his O2 went up to 98. Steven and I were a little flabbergasted, then it dropped, we were not disappointed. The nurse also mentioned it started to feel like he was running a fever. Awesome.
So we sit and wait, they have him on 2 liters of oxygen, and gave him stuff for pain. 3 hours later the doc shows up. She goes over his history and bolts, Rylan then gets an x-ray and we wait. A nurse comes in and lets us know they are going to turn his oxygen off and see how he does on room air, he does fine. Going on hour 6 in the room I go out and ask if they know what is going on. Thats when we were finally informed he was being admitted.
The doctor from the floor came in to talk with us filling us in on the x-ray results and getting info for the floor. As he is talking to us Rylan decides to drop to 70% oxygen (he likes to keep us on our toes).
as always, we were brought to our room and told the game plan. Basically they are going to treat Rylan for his chronic pulmonary problems, a possible asthma exacerbation, or a pneumonia.
So I sit here now in his hospital room listening to beeping of machines, the gently whisper of oxygen, and spongebob on the tv.
Thursday, July 26, 2012
The clipping of tendons pt. 2
Well where we last left off was Rylan, Steven and I were waiting for Dr. Valencia to arrive. Around 1145 he did!
He went over the entire surgery with us as far as what he will be looking for and what he is going to do, then what to expect. Basically they were clipping the main tendons in Rylan's legs, starting in the quads then behind the knees and finishing at the ankles.
Once everything was made clear , the Anesthesia docs came in and told us what they decided was the best process for Rylan.
Our big concern with Rylan is every time he receives general anesthesia there is ALWAYS an issue with his breathing afterward. He has a high dependency on oxygen and has atelectasis.
Being school is starting around the corner I REALLY didnt want to weaken his lungs anymore then they already are, we opted to take a different route for the surgery.
What we all decided on what giving Rylan a drug called ketamine through his g-tube. apparently the affect from this was going to give him a loopy dreamy feel. I felt bad because when this started to kick in Rylan was hilarious and I couldn't stop laughing at him.
Once the ketamine has kicked in they let us know they will be sticking a catheter in,
putting the epidural in his back and sticking the IV in. They were not going to turn the epidural on until after the surgery so they went ahead and gave him a spinal on top of everything else.
Off they went with my little boy.
Now this is the first time we have been at UMC for a surgery. I have to say they were phenomenal. There was a nurse assisting with the surgery and would call periodically while Rylan was in there to let us know how he was doing and where he was at, then they called to let us know he was finished and how he did. I dont wanna bad mouth TMC but honestly this is something that Steven and I loved, yet never had at TMC.
After a couple hours we were called back to see Rylan. I personally thought he was going to be awake and was a little surprised he wasnt. The nurse tending to Rylan told us it was because they gave him enough drugs to last for a 4 hour surgery , the surgery went quicker then expected. So we sat and waited for everything to wear off.
As he was resting they started to notice that his blood pressure was low. The nurse was concerned that as the spinal started to wear off he was going to need the epidural which was going to lower his blood pressure even more. So she called the anesthesia doc back over. He wasnt liking the blood pressure either so they gave him a shot of ephedrine. Which worked instantly.
at about the 2 and a half hour mark he was slowly starting to wake up. To help him out Steven suggested that we use the one thing that is GUARANTEED to wake him from ANY rest no matter how deep....goofy goober rock. Which was a success.
When we finally got those big blue eyes opened we went ahead and gave him all the Spongebob his little heart desired.
His recovery nurse (who was by his side the ENTIRE time....another plus of UMC) kept checking his toes for movement. We had to be sure the spinal was wearing off. When we finally did get movement in his toes they started the epidural. By this time we were nearing hour 4 in recovery and still had to be there 45 mins to make sure it was going to work.
It was starting to get super late by this time so Steven and I ran home, I stayed home while Steven ran back up to stay with Rylan. My mom was there sitting with him during this time.
Flash forward to this morning.
I arrive at the hospital early so Steven and I could have breakfast together, Rylan was laying in bed fussing and dripping sweat.
Needless to say my mommy instincts kicked in.
I asked to see the nurse and figure out why he is in pain and then I ask for a sponge bath for him.
The nurse and the doctor both came in and repositioned Rylan. He seemed to be content.
which leaves us to where we are now....and I honestly have to say this is gonna be a tough recovery for the both of us!
He went over the entire surgery with us as far as what he will be looking for and what he is going to do, then what to expect. Basically they were clipping the main tendons in Rylan's legs, starting in the quads then behind the knees and finishing at the ankles.
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| Dr. Valencia's marks on where he's starting |
Our big concern with Rylan is every time he receives general anesthesia there is ALWAYS an issue with his breathing afterward. He has a high dependency on oxygen and has atelectasis.
Being school is starting around the corner I REALLY didnt want to weaken his lungs anymore then they already are, we opted to take a different route for the surgery.
What we all decided on what giving Rylan a drug called ketamine through his g-tube. apparently the affect from this was going to give him a loopy dreamy feel. I felt bad because when this started to kick in Rylan was hilarious and I couldn't stop laughing at him.
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| Rylan on his drugs |
putting the epidural in his back and sticking the IV in. They were not going to turn the epidural on until after the surgery so they went ahead and gave him a spinal on top of everything else.
Off they went with my little boy.
Now this is the first time we have been at UMC for a surgery. I have to say they were phenomenal. There was a nurse assisting with the surgery and would call periodically while Rylan was in there to let us know how he was doing and where he was at, then they called to let us know he was finished and how he did. I dont wanna bad mouth TMC but honestly this is something that Steven and I loved, yet never had at TMC.
After a couple hours we were called back to see Rylan. I personally thought he was going to be awake and was a little surprised he wasnt. The nurse tending to Rylan told us it was because they gave him enough drugs to last for a 4 hour surgery , the surgery went quicker then expected. So we sat and waited for everything to wear off.
As he was resting they started to notice that his blood pressure was low. The nurse was concerned that as the spinal started to wear off he was going to need the epidural which was going to lower his blood pressure even more. So she called the anesthesia doc back over. He wasnt liking the blood pressure either so they gave him a shot of ephedrine. Which worked instantly.
at about the 2 and a half hour mark he was slowly starting to wake up. To help him out Steven suggested that we use the one thing that is GUARANTEED to wake him from ANY rest no matter how deep....goofy goober rock. Which was a success.
When we finally got those big blue eyes opened we went ahead and gave him all the Spongebob his little heart desired.
His recovery nurse (who was by his side the ENTIRE time....another plus of UMC) kept checking his toes for movement. We had to be sure the spinal was wearing off. When we finally did get movement in his toes they started the epidural. By this time we were nearing hour 4 in recovery and still had to be there 45 mins to make sure it was going to work.
It was starting to get super late by this time so Steven and I ran home, I stayed home while Steven ran back up to stay with Rylan. My mom was there sitting with him during this time.
Flash forward to this morning.
I arrive at the hospital early so Steven and I could have breakfast together, Rylan was laying in bed fussing and dripping sweat.
Needless to say my mommy instincts kicked in.
I asked to see the nurse and figure out why he is in pain and then I ask for a sponge bath for him.
The nurse and the doctor both came in and repositioned Rylan. He seemed to be content.
which leaves us to where we are now....and I honestly have to say this is gonna be a tough recovery for the both of us!
Wednesday, July 25, 2012
The clipping of tendons part 1
5 am the buzzing of an alarm rings in Steven and my ears. So we dreadfully get up and get moving being Rylan had to be at the hospital in a couple hours.
We run through the motions, I shower, he makes coffee and smokes. Then I bathe Rylan and Steven gets himself ready, We finish up with Rylan and get ready to leave.
We arrive at The University of Arizona Medical Center around 7:15. We were confirmed his surgery was at 9 am. I go to the desk sign him in and then we get taken to registeration.
Then a fire alarm goes off.....So out the door we go to just turn around and go back in. Apparently security cleared we could stay. This is our first time at UMC for surgery so we were not sure what to expect.
The PCT pulls us back to the bed waiting for him. At first glance it was a touching set up. They had it ready for him with alittle award on the pillow. We put Rylan on the bed and start going through the motions.
Steven gets Rylan in his hospital gown and I answer the nurses questions. We wait and Dr. Valencia's surgical assistant comes and talks to us, then the anesthesia docs talk to us. Everyone seemed to be on track.
Thats when the nurse walked in. Dr. Valencia wasn't going to be in till 12. Here we are at 900 and the doctor wasnt going to be until 12. I instantly became infuriated. Thank goodness Steven was there to calm me down.
I call Dr. Valencias office to find out what is going on....and they were clueless and rude to say the least. So I asked Dr. Valencia to call me.
When he did we all came to the conclusion that there was some "miscommunication". Seriously is it too much to ask to have ONE of Rylan's surgeries go on time? As you remember his mickey button surgery went the same way
Rylan starts to become fussy. So I call the clinic Dr. Valencia is at and ask if he is running on time. Of course nobody could give me a straight answer so I finally had it.
Now here we are still waiting. My temper is getting worse with each passing min.
We run through the motions, I shower, he makes coffee and smokes. Then I bathe Rylan and Steven gets himself ready, We finish up with Rylan and get ready to leave.
We arrive at The University of Arizona Medical Center around 7:15. We were confirmed his surgery was at 9 am. I go to the desk sign him in and then we get taken to registeration.
Then a fire alarm goes off.....So out the door we go to just turn around and go back in. Apparently security cleared we could stay. This is our first time at UMC for surgery so we were not sure what to expect.
The PCT pulls us back to the bed waiting for him. At first glance it was a touching set up. They had it ready for him with alittle award on the pillow. We put Rylan on the bed and start going through the motions.
Steven gets Rylan in his hospital gown and I answer the nurses questions. We wait and Dr. Valencia's surgical assistant comes and talks to us, then the anesthesia docs talk to us. Everyone seemed to be on track.
Thats when the nurse walked in. Dr. Valencia wasn't going to be in till 12. Here we are at 900 and the doctor wasnt going to be until 12. I instantly became infuriated. Thank goodness Steven was there to calm me down.
I call Dr. Valencias office to find out what is going on....and they were clueless and rude to say the least. So I asked Dr. Valencia to call me.
When he did we all came to the conclusion that there was some "miscommunication". Seriously is it too much to ask to have ONE of Rylan's surgeries go on time? As you remember his mickey button surgery went the same way
Rylan starts to become fussy. So I call the clinic Dr. Valencia is at and ask if he is running on time. Of course nobody could give me a straight answer so I finally had it.
Now here we are still waiting. My temper is getting worse with each passing min.
Thursday, July 19, 2012
Tendon clipping
7 days and counting......7 long days.
My little boy is going under the knife AGAIN! Even though I know its a long term investment having him go through this, I cant shake away my nerves.
Rylan's lungs have been sooo good. I guess alot of the nervousness comes from the fact I feel like we are weakening his lungs with this surgery and then he starts school. I shouldn't lie and say nervousness.......Im flat out SCARED.
Your probably wondering what he is going into surgery for..... He is going in to get his tendons clipped in his legs. Due to his CP he has developed contractors in his leg muscles. meaning he cannot stretch his leg out straight due to the muscles being so tight. As Rylan's bones grow......his muscles wont. Which doesn't give his bones a lot of room to stretch out. As this happens the bones are at a high risk of becoming contracted themselves. Once this happens....there is nothing that can be done.
So I opted to have this surgery done sooner then later.
I have really bad anxiety which got worse when I was told we needed to come up with a game plan for Rylan because they weren't to confident how many more respiratory viruses his lungs can handle.
So here I am trying not to stress.......and hitting my E-cigarette like crazy....and now realizing I am going to need more juice......
So if I could get some prayers out there that his lungs will stay strong and he will power through everything like a champ and that he will breeze through the respiratory season with ease. Never in my life Have i dreaded the upcoming holiday season as much as I do now.
My little boy is going under the knife AGAIN! Even though I know its a long term investment having him go through this, I cant shake away my nerves.
Rylan's lungs have been sooo good. I guess alot of the nervousness comes from the fact I feel like we are weakening his lungs with this surgery and then he starts school. I shouldn't lie and say nervousness.......Im flat out SCARED.
Your probably wondering what he is going into surgery for..... He is going in to get his tendons clipped in his legs. Due to his CP he has developed contractors in his leg muscles. meaning he cannot stretch his leg out straight due to the muscles being so tight. As Rylan's bones grow......his muscles wont. Which doesn't give his bones a lot of room to stretch out. As this happens the bones are at a high risk of becoming contracted themselves. Once this happens....there is nothing that can be done.
So I opted to have this surgery done sooner then later.
I have really bad anxiety which got worse when I was told we needed to come up with a game plan for Rylan because they weren't to confident how many more respiratory viruses his lungs can handle.
So here I am trying not to stress.......and hitting my E-cigarette like crazy....and now realizing I am going to need more juice......
So if I could get some prayers out there that his lungs will stay strong and he will power through everything like a champ and that he will breeze through the respiratory season with ease. Never in my life Have i dreaded the upcoming holiday season as much as I do now.
Monday, June 11, 2012
Atelectasis and the selfish mom
Well I think this time the title says it all.
A couple of days ago Rylan started acting tired, abnormally tired. So my mommy intuition kicked in and I threw the pulse ox on him and my fears were confirmed. His oxygen was low. While it wasn't scary low, it was low enough for me to know something is going on.
I have spent the last few days hovering and watching Rylan like a hawk. The pulse ox basically lives on his finger, Im watching it go to 97,96, 95......89.......back up again. My anxiety decides to show its face. Great. I look at him, he is breathing comfortably, not even belly breathing.... Now its weird.
Well on Saturday Steven and I were going to go to a wedding and Rylan was going to hang out with one of his nurses. When she got to our house I explained to her what was going on and she did her evaluation. She said she heard nothing in the lungs, so she was confused.......but here is the kicker.......When we put him to bed his stats go up to 96-97.
As most of you may know it is normal for the human body to destat. when sleeping do shallow breathing. So this confused us further.
Last night Rylan had a rough night. He had a coughing fit all night. LITERALLY ALL NIGHT.
Today I wanted to go with two girlfriends of mine to a bridal shop. But due to last nights episode, I needed to get him seen.
So off to the pulmonologist we go. I explain to Dr. Riordan whats been going on and she listens. Within 30 seconds she hears crackling in both of Rylan's lower lobes. Conclusion.....Atelectasis.
As some of you may have recalled Rylan had Atelectasis when he was rushed to the hospital earlier this year. So now I went from Anxiety ridden to flat out PARANOID.
She instructed me to put him on Q2 (which in the experienced lung problem world mean breathing treatments every 2 hours). Needless to say I can say goodbye to sleep tonight.
This also means that when my step-daughter arrives tomorrow.....Rylan and I wouldn't be there. A long car ride wouldn't be good for him. So I got really bummed, I haven't seen Amaryssa in a year. I really wanted us there. Im grateful for my AMAZING mother. She so unselfishly volunteered to drive to our house and stay with Rylan till we got home and do his treatments for us as well this way I could meet her when she got here alongside Steven.
Whereas I feel REALLY guilty about that. Steven made me feel better, Reminding me that Rylan loves his grandma time.
Your probably thinking where does the selfish mom come in? Well I kinda had a "poor me" pity party after the appointment. When I first had Rylan I joined support groups and I was hearing how lonely most of the people were. It never really started affecting me until recently.
I have missed a friends funeral, birthday parties, and numerous other activities for the sake of Rylan's health.
It does get frustrating. VERY frustrating. I do have an AMAZING support system. But I do miss the being able to meet with friends freely. Or going to a kids birthday party without fear of germs.
Its lonely......as I listen to my amazing little boy continue to cough nearby. I am thankful for all the things I DO have.
Steven, my Mom and Rebecca......I dont know what I would do without you.
A couple of days ago Rylan started acting tired, abnormally tired. So my mommy intuition kicked in and I threw the pulse ox on him and my fears were confirmed. His oxygen was low. While it wasn't scary low, it was low enough for me to know something is going on.
I have spent the last few days hovering and watching Rylan like a hawk. The pulse ox basically lives on his finger, Im watching it go to 97,96, 95......89.......back up again. My anxiety decides to show its face. Great. I look at him, he is breathing comfortably, not even belly breathing.... Now its weird.
Well on Saturday Steven and I were going to go to a wedding and Rylan was going to hang out with one of his nurses. When she got to our house I explained to her what was going on and she did her evaluation. She said she heard nothing in the lungs, so she was confused.......but here is the kicker.......When we put him to bed his stats go up to 96-97.
As most of you may know it is normal for the human body to destat. when sleeping do shallow breathing. So this confused us further.
Last night Rylan had a rough night. He had a coughing fit all night. LITERALLY ALL NIGHT.
Today I wanted to go with two girlfriends of mine to a bridal shop. But due to last nights episode, I needed to get him seen.
 | |
| Dr. Riordan, this woman is amazing |
So off to the pulmonologist we go. I explain to Dr. Riordan whats been going on and she listens. Within 30 seconds she hears crackling in both of Rylan's lower lobes. Conclusion.....Atelectasis.
As some of you may have recalled Rylan had Atelectasis when he was rushed to the hospital earlier this year. So now I went from Anxiety ridden to flat out PARANOID.
She instructed me to put him on Q2 (which in the experienced lung problem world mean breathing treatments every 2 hours). Needless to say I can say goodbye to sleep tonight.
This also means that when my step-daughter arrives tomorrow.....Rylan and I wouldn't be there. A long car ride wouldn't be good for him. So I got really bummed, I haven't seen Amaryssa in a year. I really wanted us there. Im grateful for my AMAZING mother. She so unselfishly volunteered to drive to our house and stay with Rylan till we got home and do his treatments for us as well this way I could meet her when she got here alongside Steven.
Whereas I feel REALLY guilty about that. Steven made me feel better, Reminding me that Rylan loves his grandma time.
Your probably thinking where does the selfish mom come in? Well I kinda had a "poor me" pity party after the appointment. When I first had Rylan I joined support groups and I was hearing how lonely most of the people were. It never really started affecting me until recently.
I have missed a friends funeral, birthday parties, and numerous other activities for the sake of Rylan's health.
It does get frustrating. VERY frustrating. I do have an AMAZING support system. But I do miss the being able to meet with friends freely. Or going to a kids birthday party without fear of germs.
Its lonely......as I listen to my amazing little boy continue to cough nearby. I am thankful for all the things I DO have.
Steven, my Mom and Rebecca......I dont know what I would do without you.
Sunday, March 11, 2012
educating
I know not a lot of people read this.....but thats ok I need to express my thoughts regardless......after I recently posted a link about being a special needs parent I got thinking....
Its very frustrating at times having a kid with special needs......not because I have a kid with special needs but because of everyone else.
Rylan doesnt walk, he doesnt talk....with words. But he still has a bubbly soul and an AWESOME personality as well as a laugh that is sooo contagious he can get a room rolling in laughter however one thing that gets to me more then anything is when people dont know how to treat him like a regular kid....
Its not only for strangers but for family as well.......there have been family members that dont intract with him and ignore him. As far as strangers go....you've got the stares...especially from little kids.
We will cover the stranger issue first...I know little kids will stare but the issue stems from the parents....and those of you reading this with kids take a moment to think......do you let your kids stare at the little girl with the strange walk wearing a bib cause she drools? Or the little boy in the wheelchair looking at toys? This is one thing that boils my blood sooooooo quickly. We have been places where the kids walk away from their parents and stand about a foot away staring at Rylan.......I look at the parents who are totally oblivious. When does the kid stop staring? When the parent finally yells at them to leave.
Family I wont get into too much.....accept it breaks my heart to see Rylan get excited to see people and they dont talk to him. Or say Hi and thats it. To me this is UNEXCEPTABLE. You are family. When you interact with other kids just fine if the roles were reversed I would be considered horrible.....there is no reason the same cant apply in his case.
My biggest wish is for parents to EDUCATE their children and family to educate themselves on special kids/people. Because Rylan is just like every other kid.
Rylan doesnt like to get up in the morning, loves cartoons (especially Spongebob), He gets his clothes from the same stores your kids get theirs, he likes sports, and music, loves the outdoors.......So to me take away the wheelchair and learn his language.....how is he any different? How is he any less special? and for those who will have a problem with what I wrote sit back and think about it...without making excuses and how far would this treatment fly if it was YOUR "normal" child being treated this way?
Its very frustrating at times having a kid with special needs......not because I have a kid with special needs but because of everyone else.
Rylan doesnt walk, he doesnt talk....with words. But he still has a bubbly soul and an AWESOME personality as well as a laugh that is sooo contagious he can get a room rolling in laughter however one thing that gets to me more then anything is when people dont know how to treat him like a regular kid....
Its not only for strangers but for family as well.......there have been family members that dont intract with him and ignore him. As far as strangers go....you've got the stares...especially from little kids.
We will cover the stranger issue first...I know little kids will stare but the issue stems from the parents....and those of you reading this with kids take a moment to think......do you let your kids stare at the little girl with the strange walk wearing a bib cause she drools? Or the little boy in the wheelchair looking at toys? This is one thing that boils my blood sooooooo quickly. We have been places where the kids walk away from their parents and stand about a foot away staring at Rylan.......I look at the parents who are totally oblivious. When does the kid stop staring? When the parent finally yells at them to leave.
Family I wont get into too much.....accept it breaks my heart to see Rylan get excited to see people and they dont talk to him. Or say Hi and thats it. To me this is UNEXCEPTABLE. You are family. When you interact with other kids just fine if the roles were reversed I would be considered horrible.....there is no reason the same cant apply in his case.
My biggest wish is for parents to EDUCATE their children and family to educate themselves on special kids/people. Because Rylan is just like every other kid.
Rylan doesnt like to get up in the morning, loves cartoons (especially Spongebob), He gets his clothes from the same stores your kids get theirs, he likes sports, and music, loves the outdoors.......So to me take away the wheelchair and learn his language.....how is he any different? How is he any less special? and for those who will have a problem with what I wrote sit back and think about it...without making excuses and how far would this treatment fly if it was YOUR "normal" child being treated this way?
Saturday, February 18, 2012
The number 77
Well this winter has been great....Rylan was doing great......I guess alittle too great. Im writing this in my sons ICU room at the hospital listening to the sounds of the air escaping Rylan's Bi-pap mask and the faint ringing of alarms in another childs room somewhere down the hall......But lets go back to the beginning to where this all began......
Rylan was battling a few viruses......which I thought we were staying on top of. We have taken him to the doctor and stayed on top of his breathing treatments and vest treatments..
Thursday morning at about 1am Rylan decided he wanted to wake up for the day. So as habit dictates I went in his room and changed him and put on cartoons for him to watch and I went back to bed. 530 comes around and Steven and I get up and start Rylan's morning routine (a vest treatment with albuterol, feeding and the normal getting dressed). When all was complete we loaded him up and took him to school.
The day came and went and we went on our regular activities...Steven headed to work and I headed to go pick Rylan up from school.
I got the run down from Rebecca and put Rylan in the car...he seemed happy but tired.....being he got up at 1am I couldnt blame him.
By the time I got home and turned off the car I could hear Rylan breathing very rapidly in the back seat and he was sleeping.......I wasnt too comfortable with his breathing so I pulled out his pulse ox just to see where his oxygen level was at......When I put it on the reading I instantly got was 77........I found that hard to believe so I put it on myself to check......my read 98. So I put it back on Rylan but I tryed a different finger on the other hand......77 again. I call Steven really quick to let him know we are heading to the hospital by ambulance. I hang up and call 911.
I never took Rylan out of the car due to the fact he was gasping for air and passed out..So I stood outside by Rylan until the ambulance arrived....
They pulled in front of the house and jumped out and ran to Rylan. They checked with their pulse ox.....he was at 80% oxygen. I get pushed aside to answer questions and I watch as they have all 4 doors open on the truck talking to Rylan....Throwing oxygen on him and getting ready to put him on the gurney.
All the while im alittle shaken...even though I was calm its always alittle nerve wracking to see your child get loaded in an ambulance to get rushed to the hospital. I grab what we need and load in with him and we go....
While in the ambulance I learn he is on 15 liters of oxygen and barely at 92-94%.....and he is febrile with a 101 degree temp. We arrive at the the hospital and his temp went up and his breathing got worse......yet we had to wait for TMC to get him over to the childrens area.....I wasnt to happy.
We finally get to the area and we meet up with Steven....they get him in a room and start breathing treatments and his extreme amounts of oxygen, we eventually get xrays and so forth....once his IV was placed bloodwork was taken and the only thing we were waiting on was a room in the ICU. Steven and I ran home to get a bag and shower as my mom stayed with him.
On the way back from home I took the truck because Steven needed to get back to work. I call my mom on the way to see how he is doing and I hear his gasping in the background....I REALLY start to worry. I get to the hospital and I get to his room and they have both of the residents in there, his nurse and the respitory therapist circling around his bed talking about what to do next as he is now on 100%oxygen with continuous albuterol still gasping for air.
One of the doctors goes on to tell me that he hears no air circulating in his right lung and there is fluid in his left lung.....they are going to try using the bipap machine with the oxygen and albuterol. If there is no results with that then there will be talk of intubating him. Needless to say that scared the crap out of me. I just watched as the doctors called a bipap machine up stat.
They stood by to make sure there was going to be an improvement......thankfully there was. For those of you who dont know what the Bi-paps benefit is to a kid in Rylans condition.....it pressurizes the airway and forces the lungs to open. after about an hour on it he was finally content enough to try and sleep....
Now the start of lots of antibiotics and bloodwork....Rylan has been poked to many times and we are barely on day 2. So I try to make sure he is clean (spongebaths are great) and comfortable.....I want to him rest as much as possible
Not to mention his need for a good deep suctioning
Thats all the info we have now.....stay tuned.
Rylan was battling a few viruses......which I thought we were staying on top of. We have taken him to the doctor and stayed on top of his breathing treatments and vest treatments..
Thursday morning at about 1am Rylan decided he wanted to wake up for the day. So as habit dictates I went in his room and changed him and put on cartoons for him to watch and I went back to bed. 530 comes around and Steven and I get up and start Rylan's morning routine (a vest treatment with albuterol, feeding and the normal getting dressed). When all was complete we loaded him up and took him to school.
The day came and went and we went on our regular activities...Steven headed to work and I headed to go pick Rylan up from school.
I got the run down from Rebecca and put Rylan in the car...he seemed happy but tired.....being he got up at 1am I couldnt blame him.
By the time I got home and turned off the car I could hear Rylan breathing very rapidly in the back seat and he was sleeping.......I wasnt too comfortable with his breathing so I pulled out his pulse ox just to see where his oxygen level was at......When I put it on the reading I instantly got was 77........I found that hard to believe so I put it on myself to check......my read 98. So I put it back on Rylan but I tryed a different finger on the other hand......77 again. I call Steven really quick to let him know we are heading to the hospital by ambulance. I hang up and call 911.
I never took Rylan out of the car due to the fact he was gasping for air and passed out..So I stood outside by Rylan until the ambulance arrived....
They pulled in front of the house and jumped out and ran to Rylan. They checked with their pulse ox.....he was at 80% oxygen. I get pushed aside to answer questions and I watch as they have all 4 doors open on the truck talking to Rylan....Throwing oxygen on him and getting ready to put him on the gurney.
All the while im alittle shaken...even though I was calm its always alittle nerve wracking to see your child get loaded in an ambulance to get rushed to the hospital. I grab what we need and load in with him and we go....
While in the ambulance I learn he is on 15 liters of oxygen and barely at 92-94%.....and he is febrile with a 101 degree temp. We arrive at the the hospital and his temp went up and his breathing got worse......yet we had to wait for TMC to get him over to the childrens area.....I wasnt to happy.
 |
| waiting to go to the Childrens area |
 |
| attempting to place IV in the emergency room |
One of the doctors goes on to tell me that he hears no air circulating in his right lung and there is fluid in his left lung.....they are going to try using the bipap machine with the oxygen and albuterol. If there is no results with that then there will be talk of intubating him. Needless to say that scared the crap out of me. I just watched as the doctors called a bipap machine up stat.
 |
| right after they added the Bi-pap |
Not to mention his need for a good deep suctioning
Thats all the info we have now.....stay tuned.
Monday, January 9, 2012
Oxygen anxiety
I pour a glass of wine and sit at the computer....Rylan just had his last vest treatment for the night and he is digesting his last feeding. I log online and read about someone having a good day at work, or someones expecting a baby, etc......I browse through photos of my friends and their night lives....and realize it will never be that easy for me ever again....its gonna get harder.
I glance at Rylan and realize he is the best thing thats ever happened to me. He has made the person I am today. There is just one thing I stress about consistently...and its wearing me down.
Rylan's oxygen is consistently going up and down.......you check him in the morning 98...oh wait....95....93....90!......96 now....ok.....and I cannot help but freak....if he is destating before bed I dont sleep. Im up every hour checking on him......positioning him.....wondering when will I need to take him to the hospital.
Rylan has been doing VERY well here lately. Yet instead of relaxing im stressing.....cant let my guard down. The State of Arizona took away the nursing I had so its up to me to keep an eye on him. Which I do not mind at all! But it can be overwhelming.
I also sit back and think when did I get like this??? Not only am I stressing about Rylan's O2 constantly. I have become the biggest germ phobic. I cant allow my house to get dirty at all......and i cringe at taking him to doctors appts knowing there are sick kids around...(and all I can see is them coughing without covering their mouths, wiping their noses with their hands and touching door handles...). I even tell his aide at school everyday to put a mask on him if there is a sick kid in his class, oh there joining another class for art projects? put a mask on. I guess living in a hospital and almost losing your child will do that to you.
The part that sucks the most about all this? Is I feel like no one besides Steven FULLY understands what is going on in my head. I dont have the energy to really socialize anymore and have come to the realization that I have lost some friends due to it. But I am forever grateful to the friends and family that have stuck by.
Well now that I have got this off of my chest....I got some suctioning to do. Then Ill be checking some O2 stats and finishing my glass of wine...before I try to go to bed for the evening.
I glance at Rylan and realize he is the best thing thats ever happened to me. He has made the person I am today. There is just one thing I stress about consistently...and its wearing me down.
Rylan's oxygen is consistently going up and down.......you check him in the morning 98...oh wait....95....93....90!......96 now....ok.....and I cannot help but freak....if he is destating before bed I dont sleep. Im up every hour checking on him......positioning him.....wondering when will I need to take him to the hospital.
Rylan has been doing VERY well here lately. Yet instead of relaxing im stressing.....cant let my guard down. The State of Arizona took away the nursing I had so its up to me to keep an eye on him. Which I do not mind at all! But it can be overwhelming.
I also sit back and think when did I get like this??? Not only am I stressing about Rylan's O2 constantly. I have become the biggest germ phobic. I cant allow my house to get dirty at all......and i cringe at taking him to doctors appts knowing there are sick kids around...(and all I can see is them coughing without covering their mouths, wiping their noses with their hands and touching door handles...). I even tell his aide at school everyday to put a mask on him if there is a sick kid in his class, oh there joining another class for art projects? put a mask on. I guess living in a hospital and almost losing your child will do that to you.
The part that sucks the most about all this? Is I feel like no one besides Steven FULLY understands what is going on in my head. I dont have the energy to really socialize anymore and have come to the realization that I have lost some friends due to it. But I am forever grateful to the friends and family that have stuck by.
Well now that I have got this off of my chest....I got some suctioning to do. Then Ill be checking some O2 stats and finishing my glass of wine...before I try to go to bed for the evening.
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