Anyone else out there having problems with blogger? I can't comment anywhere and have been emailed by people saying that they weren't able to post a comment on my blog. Does anyone know what is going on with that?
We have had a crazy few days. After Sam's graduation on friday, I started my four nights in a row at the hospital. I am completely 100% exhausted and can't wait to sleep today. I am so so blessed by such wonderful friends that come and take the kiddos so I can sleep! They actually had a sleep over last night at a friend's house, and they are staying there throughout this morning so I can sleep after work.
I am feeling pretty crummy the last few days but I am not sure if it is related to working so much with so little sleep, or if there is something going on pregnancy wise. I did have my liver tests drawn last week in Boston and they are up a little more than they had been the week before:-( Not sure if it is a significant enough increase to be concerned or not. Praying that it isn't.
PRAYER REQUEST: A co-worker of mine has a daughter named Ashley who was pregnant. Ashley delivered her precious baby girl the other day, at 27wks, the baby is 2lb 4.7oz and has been doing well. Ashley was very sick with pre-eclampsia and HELLP syndrome (like I have been previously) can you please lift up this family in your prayers? Thank you so much!!!
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Tuesday, June 14, 2011
Tuesday, March 15, 2011
Poor neglected blog.........
Goodness, can't believe how long it has been since I have updated. Our internet was down for over a week so that is part of my excuse:-)
What's happened with us this past week or so:
-Results of Sam sleep study: NORMAL!!!! Praising God for this wonderful news
-Sam had some pretty significant GI bleeding last friday into saturday, but
again praising God that it has resolved. His GI doctor is believing that
he has probably a collection of blood vessels close to the surface of his
colon and that they are prone to bleeding. That being said, if his
platelet dysfunction (bleeding disorder) is not bad at the time of the
bleed, then it will resolve on it's own. If he isn't clotting properly
then something will have to be done.
-Our basement flooded last week:-( Thankfully although our washer/dryer and
boiler were all in the water, they weren't damage
-I started back to work!!! As a real nurse! It was so fun to actually take
care of patients again. My back did bother me some but it was totally
tolerable
-I had my re-eval for PT, they said that I still have significant decreased
mobility between the vertebrae in my lumbar reason, muscle weakness on
the left, and continued muscle spasms. So they are recommending to
continue PT twice a week still.
-I went to a webinar last week regarding Pre-eclampsia diagnosis and
treatment. I have always known how sick I was when I had Sam, but
actually seeing the data in front of me was truly terrifying. EAch
of the people that was at the webinar had some experience with me when
I was pregnant with Sam, and each shared how scary it was....Thankfully
MY GOD is bigger than Pre-E and HELLP and He kept us both safe:-)
That is what has been going on here in the last week or so. Sophia turns three this week! I still can't believe my little baby is going to be three. She is doing great with the Potty training TODAY:-) yesterday was a different story. We actually had a Potty Dance Party two weeks ago which was really fun:-)
What's happened with us this past week or so:
-Results of Sam sleep study: NORMAL!!!! Praising God for this wonderful news
-Sam had some pretty significant GI bleeding last friday into saturday, but
again praising God that it has resolved. His GI doctor is believing that
he has probably a collection of blood vessels close to the surface of his
colon and that they are prone to bleeding. That being said, if his
platelet dysfunction (bleeding disorder) is not bad at the time of the
bleed, then it will resolve on it's own. If he isn't clotting properly
then something will have to be done.
-Our basement flooded last week:-( Thankfully although our washer/dryer and
boiler were all in the water, they weren't damage
-I started back to work!!! As a real nurse! It was so fun to actually take
care of patients again. My back did bother me some but it was totally
tolerable
-I had my re-eval for PT, they said that I still have significant decreased
mobility between the vertebrae in my lumbar reason, muscle weakness on
the left, and continued muscle spasms. So they are recommending to
continue PT twice a week still.
-I went to a webinar last week regarding Pre-eclampsia diagnosis and
treatment. I have always known how sick I was when I had Sam, but
actually seeing the data in front of me was truly terrifying. EAch
of the people that was at the webinar had some experience with me when
I was pregnant with Sam, and each shared how scary it was....Thankfully
MY GOD is bigger than Pre-E and HELLP and He kept us both safe:-)
That is what has been going on here in the last week or so. Sophia turns three this week! I still can't believe my little baby is going to be three. She is doing great with the Potty training TODAY:-) yesterday was a different story. We actually had a Potty Dance Party two weeks ago which was really fun:-)
Thursday, March 3, 2011
Sleep study
We had the sleep study last night and all went well. I won't hear any results for two weeks, although if there is something bad we will hear sooner. But Iknow that God has resolved the sleep apnea, and I am not worried about it.
I have been diagnosed with Planta fasciitis, and can I just say it is SO SO painful. I am praying that it heals quickly.
Sophia had a wonderful sleepover with her friend last night and today we are having lots of wild and crazy kiddos over to play. And then tonight I will go to work, I am just praying between my back and my foot that it will be good night.
I have been diagnosed with Planta fasciitis, and can I just say it is SO SO painful. I am praying that it heals quickly.
Sophia had a wonderful sleepover with her friend last night and today we are having lots of wild and crazy kiddos over to play. And then tonight I will go to work, I am just praying between my back and my foot that it will be good night.
Wednesday, March 2, 2011
Paint
Sam and I are off to Children's for him to have his repeat sleep study tonight. Praying for great results
Psalm 46:10
He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”
Saturday, January 22, 2011
Sweet Dreams my angels:-)
They just love each other, and I just love them:-)
Psalms 37:7
"REST IN THE LORD AND WAIT PATIENTLY FOR HIM"
Psalms 37:7
"REST IN THE LORD AND WAIT PATIENTLY FOR HIM"
Thursday, December 16, 2010
Sleep Apnea
Oh my goodness this sleep apnea is kicking my butt. After getting the results of Sam's sleep study last week, and definitely realizing that the surgery is needed because the apnea is "moderate to severe" I have become more anxious about it. Throw in this recent illness, and the CONSTANT alarming from his monitor last night and I am exhausted.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!
Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!
Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.
Saturday, December 11, 2010
Phew what a week!!!
This week I have certainly been blessed by my faith. With the birth of a precious miracle, and with amazing friends (thanks Meg!), with all kinds of distressing info about Sam, I am just so thankful that God loves me and is carrying me through all of this stress. I can't imagine this life without God.
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)
Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?
Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.
Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.
Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)
Monday
I was blessed to witnessed the birth of my beautiful new nephew, and reminded of God's miracle of life. My nephew is GORGEOUS by the way:-)
Tuesday
Sam and I went into Mass General for an appointment in the Coordinated Care Clinic (CCC) . This visit essentially was to review all of the recent events regarding Sam and his healthy. It was a good and bad visit. Health wise as far as multiple issues he is doing very well, except for the respiratory stuff. The CCC provides all types of support for families/children with complicated health issues. They help with insurance, coordinating appointments, making sure all the specialists are on the same page, and answering questions. They also deal with school stuff and making sure the school district provides appropriately for the child. That being said we met with a social worker this time (who we have never met before). She doesn't know Sam or I, and within a couple of minutes of her being in the room, she was suggesting that he have a Neuro-Psych eval to determine if he has any special needs, such as being on the autism spectrum, ADD/ADHD, etc etc. I was kind of put off by this. Feeling like she didn't really know Sam, and I was nervous that he would be labeled with something behaviorally just because he is an active 4 yr old boy. So I have been hesitant. I have spoken with some friends, and the pediatrician in the CCC. Essentially everyone is saying that it is really up to us. They don't see any red flags but it might be goood to have it in place because I guess our school district is difficult to get services if they are needed. My concern is wanting him to not be penalized for missing too much school, and possibly tutoring if needed. Anyone have any thoughts about this evaluation?
Wednesday
Wednesday was pretty normal. I received a call from the pulmonologist on tuesday but being in boston missed the call. When I returned the call the office was closed and he was off today! When I called his office the receptionist said "OH if he called you it must be really important!" Of course that gets the wheels turning in my head, and I start to get fearful about the results. But hopefully tomorrow we will hear the results.
Thursday
We went into to see Sam's GI doctor today. He is happy with how he has been doing. Although he wishes that I would have been able to tell him that Sam hadn't had any bloody stools since the last time we saw him. Had a great conversation about God and Christmas with him. It seems as though society is trying to make us fearful about wishing others a merry Christmas, but I WILL NOT BE AFRAID! I will wish people a merry Christmas and be proud of my faith:-) I did end up talking to the pulmonolgist on the phone. He stated that Sam had moderate to severe sleep apnea, that he has elevated CO2 levels, and that he has decreased oxygen levels. HE said that this was so concerning. He recommends strongly that we have his tonsils/adenoids removed.
Friday
Today we had the much anticipated ENT appointment. Thankfully I was able to bring his sleep study report with us. And although the pulmonologist stated that he had moderate sleep apnea, the ENT is saying that it is severe, and that the study probably doesn't show how bad it really is. In the hours that he was having the sleep study, there were 69 attempts of breathing that were unsuccessful due to obstruction! He said that there were on average 7-10 obstructive events an hour! So he wants to quickly move forward with having the tonsils/adenoids removed. He explained how his oxygen levels were low and his CO2 levels were high and how this can effect his heart and brain, and decrease his drive to breath! Scary stuff! He also noticed fluid in Sam's ears (there is ALWAYS fluid) and wants to place tubes as well if there is fluid when they do the surgery. Due to Sam's bleeding disorder and the risk of bleeding being so great, he will be admitted to the ICU for at least one night after the surgery, and then they will determine how long we stay depending on how he does. We should hear by monday. I am praying that it is like the day after Christmas or something, so that we can get this resolved before he gets another respiratory illness.
We also got to go to our church to decorate cookies and watch a Muppet Christmas Carol. The kids had a blast decorating cookies, but Sophia especially was not impressed with the movie. She liked it for about five minutes and then wanted to play. Oh well it was so fun:-)
Monday, November 22, 2010
The waiting...
After a very stressful last four nights, of Sam having extreme difficulty breathing I am waiting anxiously for doctors to call me back. I have spoken with nurses and with our primary but am now waiting for the pulmonologist and ENT. I just am so tired of him having to struggle, how can he be healthy if he can't even get a restful night sleep. I am not sure where we go from here. Matt and I have discussed calling 911 when it happens so it is witnessed and documented by someone else professionally, we have talked about the ER, and also about video taping it when it happens to show to his doctors so that they see how much he is struggling. But today we are just waiting. Waiting for answers.....
Monday, October 4, 2010
Wednesday, July 14, 2010
ENT update
Well we went back and saw the ENT from CHildren's today. I am not quite sure how I feel about the appointment. WE went there thinking that we would get the date for his surgery for the tonsils and adenoids and to get the results of the sleep study. WEll the results of the sleep study were good, so they are saying there is no brain involvement for the apnea episodes, and that there is no obstructive sleep apnea. But now he is wondering if there is some kind of cardiac cause. So now they are trying to get us in to a cardiologist as soon as possible. I got a call from the primaries office saying how they wanted us to go to Children's instead of MassGeneral because we could get seen sooner. So now I am wondering what they were told and why it has become like a huge priority to get him seen quickly?
The other thing is that we will return in two months to the ENT to determine when they will remove the adenoids, or if they will at all....It is ALWAYS something with this little boy of mine:-)
The other thing is that we will return in two months to the ENT to determine when they will remove the adenoids, or if they will at all....It is ALWAYS something with this little boy of mine:-)
Saturday, July 3, 2010
Sleep Study
After Sam's party we drove into Children's and had his sleep study done. He was such a trooper. Someone lent us their leapster for him to use on our way into the city, so thankfully he didn't fall asleep on the way. When we got there they did the usual stuff, vital signs, height and weight etc. We then began an HOUR AND A HALF LONG process of attaching all the leads and monitoring equipment to him, there were more than 35 things that they attached. He was such a trooper through the whole thing (AS USUAL).
He wasn't allowed to sleep in a regular bed and was put in a crib which did not make him too happy but he did ok. He was supposed to stay completely flat on his back with his head straight for the entire study which meant that they were constantly coming in to adjust him and straighten him out. Which also then means that noone really got good sleep. But he was awesome as always. Now we will just wait for the results which I guess take about two weeks
Snacking on some blueberried prior to the lead placement
Still smiling after more than an hour and a half of lead placements
He wasn't allowed to sleep in a regular bed and was put in a crib which did not make him too happy but he did ok. He was supposed to stay completely flat on his back with his head straight for the entire study which meant that they were constantly coming in to adjust him and straighten him out. Which also then means that noone really got good sleep. But he was awesome as always. Now we will just wait for the results which I guess take about two weeks
Snacking on some blueberried prior to the lead placement
Still smiling after more than an hour and a half of lead placements
Thursday, July 1, 2010
Life at our house is
So much fun! But oh so crazy! We have decided to have Sam's birthday party a little early this year as we are not sure how everything will go with surgery and recovery and everything. So after much deliberation I decided that we would do it this coming saturday the 3rd, thinking that we wouldn't have to worry about the sleep study until next week. Well as soon as I sent out the invites to everyone that very day I got a call from Children's saying that the study was going to be saturday the 3rd!! Eeek, so we will have his party, even though I am working the three previous nights in a row, and then he and I will drive into Children's from the party.
I am hoping that he does ok with all the leads and monitors. He has done well lately with the apnea monitor. It does alarm quite frequently for low heart rate but we have only had one episode of apnea, praise the Lord!!!
I am hoping that he does ok with all the leads and monitors. He has done well lately with the apnea monitor. It does alarm quite frequently for low heart rate but we have only had one episode of apnea, praise the Lord!!!
Tuesday, June 29, 2010
Playground fun
We got to have a playdate with Keegan today! It was totally a last minute thing but worked well in our favour. We drove in to Concord and had lunch and then walked over to a playground that I played at as a kid:-)
We got an appointment for our sleep study today! I am kind of shocked actually as I had spoken with them yesterday and they said that it would be a long time from now but that once they had it booked that we would be on the cancellation list and hopefully get in sooner. And then they called this morning and have it scheduled for SATURDAY!!! It kind of stinks that it is 4th of July weekend and we certainly had some plans but I am so glad that we have it so soon.
We also got the apnea monitor yesterday FINALLY! I thought that I would be able to sleep more once we had this but I am not quite so sure now as it goes off so frequently. But at least the anxiety that goes along with wondering if he is breathing ok is gone.
This week I have really been thinking about my faith and how there truly is no fear reason to be. I know that God has special plans for my special Sammy, I know that His will is perfect, and that He is beside us through all of these trials on earth. And yet in my human nature I am afraid:-( Lord forgive me for being afraid, I know that You are above all of this and that Sammy is in Your perfect hands, and I thank you!!!
Sunday, March 28, 2010
Sunday, February 28, 2010
The upside of being sick
Well I am trying to stay positive in this crazy journey with Sam. And today as I cuddled this beautiful little guy who seems to be getting thinner and thinner, I was reminded that I am cuddling him and he LOVES me so much! He wants to cuddle with me and have me kiss him and hug him. He wants me to read to him and tell him about the world, and why Jesus has to be "inmisible" (invisible) all the time. Some day he isn't going to want to snuggle with his momma, so for today I will hug him and kiss him all he wants. I will be praying that he feels better, but I will live in this moment of love
Sunday, February 7, 2010
Another taste of normal...
We have had a good weekend. Two birthday parties, and Sammy's first official sleep over! He had such a blast at Jame's birthday on friday, and then today at Tristan's party. Pictures to follow.
But the great thing about this weekend was a sleepover from Grandma and Papa! He had a fabulous time and slept all by himself in his Daddy's old bed. I will have to see if I can get pictures from that too.
He seems to be doing well. He ate well all weekend, and his temp has been good. The new medicine I am not sure is working well but we shall see. He is sleeping a lot still but that is ok. Hopefully that is his own body just growing and getting tired because he is busy and active and growing.
But the great thing about this weekend was a sleepover from Grandma and Papa! He had a fabulous time and slept all by himself in his Daddy's old bed. I will have to see if I can get pictures from that too.
He seems to be doing well. He ate well all weekend, and his temp has been good. The new medicine I am not sure is working well but we shall see. He is sleeping a lot still but that is ok. Hopefully that is his own body just growing and getting tired because he is busy and active and growing.
Friday, January 29, 2010
Thursday, January 14, 2010
Wednesday, December 30, 2009
Our new Hippo Tent
Auntie Tracy and Uncle Tim and their kids got us this really cool Hippopotamus tent. The kids LOVE it!!! And finally Sammy has NOT been sleeping with us! Not something I mention often, but the poor guy is so traumatized each time he goes into the hospital that he wakes at night often, and doesn't sleep by himself, meaning he sleeps with us. Well he has spent several nights sleeping in his new tent, and although he wakes up and looks to make sure we are there, he has stayed in his tent. Thanks guys!!!
Sunday, October 25, 2009
Birthday parties, sleepovers, and FUN
Keegan the birthday boy- turned 5!!! (this is Sammy's "big boy friend")
Momma's Girl
Sammy fell asleep right next to Keegan, and Keegan covered him up and took good care of him:-)
We went to Keegan's birthday and had so much fun. Keegan is Sammy's new best buddy and Sam enjoys him so much. They had all kinds of fun activities planned for the kids, even Sophia tried to hit the pinata but the batt was a little too heavy for her.:-)
The kids had a blast, and Laura and Bobby (Keegan's parents) were gracious enough to allow us to sleep over since we had IVIG the next morning. Sam had been so excited to have this sleepover. He and Keegan played hard after the party was over, had pizza and popcorn and were watching a fun Disney movie, and much to my SHOCK Sam fell asleep on Keegan's bed! I was so excited, it only lasted about an hour and then he slept with me but it's a start right?
Momma's Girl
Sammy fell asleep right next to Keegan, and Keegan covered him up and took good care of him:-)
We went to Keegan's birthday and had so much fun. Keegan is Sammy's new best buddy and Sam enjoys him so much. They had all kinds of fun activities planned for the kids, even Sophia tried to hit the pinata but the batt was a little too heavy for her.:-)
The kids had a blast, and Laura and Bobby (Keegan's parents) were gracious enough to allow us to sleep over since we had IVIG the next morning. Sam had been so excited to have this sleepover. He and Keegan played hard after the party was over, had pizza and popcorn and were watching a fun Disney movie, and much to my SHOCK Sam fell asleep on Keegan's bed! I was so excited, it only lasted about an hour and then he slept with me but it's a start right?
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