Mason's staph bacteria is not MRSA! It's just regular staph bacteria and will be able to be treated with oral antibiotics. Mason will not be able to come home until tomorrow once they finish his IV antibiotics and get cleared by Dr. Meilahn. Hopefully early tomorrow!
We hope that the oral antibiotics kick the infection for sure, and that it does not interfere with us being at the lake over the 4th. They are antsy to put the pump back in as soon as possible (2 weeks) but I am not ready. Chris said he is and is willing to stay at the hospital the whole time. That idea sounds okay to me - I hate the hospital and the person it turns me into. I am still needing to be convinced though...
Today I'm sure is lots of daddy/Mason cuddles and mommy/JJ cuddles. I'm ready to get things back to normal and have us all home at night.
Happy Sunday!!
Sunday, June 29, 2014
Day 3 (It's Sunday, right?)
Mason slept great last night! He fell asleep hard at 8:30 and didn't wake up until they came in for a blood draw at 3:45. I managed to get him back to sleep at 4:30 and he slept until 5:30.
He's being his usual, spunky self. I wish we could take him home. The IV antibiotics are still every 6 hours - 10, 4, 10 and 4. Mason has been peeing up a storm and keeps wetting the bed. We tried larger diapers and he still pees through those also. He's due for a really good bath and a bed changing, even though he just had all that yesterday!
Mason had his IV moved yesterday, after it got pulled mostly out. His right hand was pretty swollen after they removed it. They moved it into his left hand. Last night, he was thrashing around for an hour or so and managed to have the IV disconnect, which leaked blood all over the bed, me, and him. It took awhile to get it rehooked and all cleaned up and by this time I was pretty crabby. The response time during the day has been less than ideal...and I know they have other patients (especially patients without family here) so I'm not sure if they are short-staffed or what. I know that my patience level deteriorates quickly as well when they don't move as fast as I would. :)
Daddy is coming over later this morning (just in time for the Brewer game - fancy that) - and its going to be a mommy & JJ afternoon, hopefully including a nap!
Tomorrow we will know for sure what the antibiotic plan is and whether we get to take him home or not. We're hoping he can go home on oral antibiotics so our 4th of July plans aren't affected. I think 4 days at the lake is just what he needs. :)
He's being his usual, spunky self. I wish we could take him home. The IV antibiotics are still every 6 hours - 10, 4, 10 and 4. Mason has been peeing up a storm and keeps wetting the bed. We tried larger diapers and he still pees through those also. He's due for a really good bath and a bed changing, even though he just had all that yesterday!
Mason had his IV moved yesterday, after it got pulled mostly out. His right hand was pretty swollen after they removed it. They moved it into his left hand. Last night, he was thrashing around for an hour or so and managed to have the IV disconnect, which leaked blood all over the bed, me, and him. It took awhile to get it rehooked and all cleaned up and by this time I was pretty crabby. The response time during the day has been less than ideal...and I know they have other patients (especially patients without family here) so I'm not sure if they are short-staffed or what. I know that my patience level deteriorates quickly as well when they don't move as fast as I would. :)
Daddy is coming over later this morning (just in time for the Brewer game - fancy that) - and its going to be a mommy & JJ afternoon, hopefully including a nap!
Tomorrow we will know for sure what the antibiotic plan is and whether we get to take him home or not. We're hoping he can go home on oral antibiotics so our 4th of July plans aren't affected. I think 4 days at the lake is just what he needs. :)
Friday, June 27, 2014
Progress
Mason has not had Ativan since 4 am this morning and is still pretty sedated. They gave him Tylenol but not other pain meds. He's been very sleepy which has allowed me to squeeze in a nap too. Chris was able to sneak away to get some work done at work and will come back today and stay overnight. (I think he likes being able to cuddle with Mason and watch the Brewers vs. being at home dealing with our almost 2 year old's energy.) :)
We will be here for sure through Sunday until we know what kind of bacteria we were dealing with. The infection was mostly around the pump, initial results do not show that bacteria went into the spine at all. The neurosurgeon that did the procedure stopped by and said something about IV antibiotics for 3 weeks. The thing about IV drugs is we either need to be inpatient or have a PIC line put in and visit the clinic/hospital for each dose. I'm hoping he was just talking about the extreme in a worst-case scenario but we'll have more answers by Sunday.
I'm looking forward to heading home later today and spending time with my little JJ who I haven't seen since Tuesday! Hopefully Mason continues to progress and we can bring his little sis over for a visit tomorrow.
A special shout-out to Megan for your help with JJ! Thank you so much!! Also thanks to Mom for coming and keeping me company today.
We will be here for sure through Sunday until we know what kind of bacteria we were dealing with. The infection was mostly around the pump, initial results do not show that bacteria went into the spine at all. The neurosurgeon that did the procedure stopped by and said something about IV antibiotics for 3 weeks. The thing about IV drugs is we either need to be inpatient or have a PIC line put in and visit the clinic/hospital for each dose. I'm hoping he was just talking about the extreme in a worst-case scenario but we'll have more answers by Sunday.
I'm looking forward to heading home later today and spending time with my little JJ who I haven't seen since Tuesday! Hopefully Mason continues to progress and we can bring his little sis over for a visit tomorrow.
A special shout-out to Megan for your help with JJ! Thank you so much!! Also thanks to Mom for coming and keeping me company today.
Backtrack - What Happened?
Mason had surgery on 6/10/14 to have the baclofen pump placed. The procedure went well, his recovery in the hospital was awesome and Mason was discharged on 6/13/14 with no need for antibiotics.
On 6/22/14, we had family over for a grill-out. Mason spent most of the night doing what he does often - hanging out on the living room floor watching cartoons. Mason started showing irritability that night once we picked him up - we noticed tightness in his legs again and general discomfort around the site of the pump (it was tender if we touched it, and quite warm.) We decided to give Mason another oral dose of baclofen because maybe he was just extra tight after the long weekend. Mason had great difficulties getting comfortable that night and his temp started to increase. We gave him some ibuprofen, and about 9:30 that night, decided we wanted to get him checked in Marshfield. About 20 minutes on our way to the hospital, Mason's fever broke. It was a Sunday night, we both had to work in the morning, and we made the decision to turn back home. We tried to make him comfortable at home and eventually, he did get a little sleep. He was clearly very tight all night, almost like the pump stopped working or something.
I called the docs first thing the next morning to explain what had happened. Mason had follow-up appts scheduled that afternoon with neurosurgery and physical medicine anyway, so we decided to just keep those.
Chris took him to those appointments. They also noticed the redness and swelling and decided to put him on some antibiotics and send him home. They said if he had any discharge from the incisions to come back in right away. After his first dose of the antibiotics, Mason was back to normal. Happy, no temp, acting his normal self.
On Tuesday, I headed out of town with a friend. I checked in with Chris regularly to check on Mason and all reports were "yes, he's doing great...happy."
On Thursday, 6/26/14, Chris called to say that Megan noticed some puss around the incision site. This alerted him and he asked her to send a picture. Once Chris got the pic, he sent it to me and we both thought - crap. Not good.
Chris called Marshfield Clinic and they said to bring him in right away. By the time Chris got here (3 pm or so), the site had swollen as if there were a baseball under his skin. Keep in mind that Chris checked the incision that morning before he left for work so the swelling/liquid all happened in a matter of 8 hours. When he got to Marshfield Clinic, he went to neurosurgery. A physician's assistant took a 4 inch needle and injected it into his belly and drew out 2 oz of liquid. Chris described it as snot-colored. I'm thankful I wasn't here for that. I would have thrown up and passed out. They sent it for testing and once results came back (high WBC), Mason was admitted.
Once up in pediatrics, they got Chris to sign all the consents to get him into surgery around 7 pm. At this point, I was still out of town. Chris assured me that there was nothing I could do here while he was in surgery.
Mason came out of surgery a little after 8 pm - in a great deal of pain. The meds they used last time that worked awesome (Fetanyl) weren't doing the trick and it took a good hour to find something to help him relax. They finally gave him Ativan to help him relax. I got here just before midnight and Mason has been pretty drugged and resting since then.
During the surgery, they took a sample of Mason's spinal fluid. They are testing it to make sure that the bacteria did not get into his spinal fluid - which could be extremely dangerous. We are waiting on results. They also did a smear of the bacteria to find out exactly what bacteria caused this infection and we hope to get those results early this morning as well. That will determine the course of treatment.
Chris has been amazing dealing with all of this. Not only was he dealing with all the nurses/docs/questions but the nonstop texts from me wanting updates until I got here. I have not been doing so great with this. I go from high anxiety, to having an emotional breakdown, all in private of course - I don't let people see me cry. I think I had my first panic attack on the way to Marshfield last night as reality set in that "this is our life." I'm just fucking sick of it all. (and I apologize Dad for swearing) but this blog allows me to be me - raw in my emotions and I'm not always going to be able to hide that.
Chris mentioned having the surgery again in a month or so to have the pump put back in and I'm just not ready for that. I'm pissed. I'm frustrated. I don't like being here and even more, I hate seeing Mason like this. This is not the life I want for him - constantly in and out of clinic visits and hospital stays. I am very aware that there are people that deal with much more than we do but I don't think that matters to me right now.
Thank you everyone for dealing with my emotions outpouring on here. We really, really do appreciate all of your love and support and know that you are praying for him and wishing him the best. Please don't take this post as a pity-party in any way...I just want it to be honest and real.
(Hugs)
On 6/22/14, we had family over for a grill-out. Mason spent most of the night doing what he does often - hanging out on the living room floor watching cartoons. Mason started showing irritability that night once we picked him up - we noticed tightness in his legs again and general discomfort around the site of the pump (it was tender if we touched it, and quite warm.) We decided to give Mason another oral dose of baclofen because maybe he was just extra tight after the long weekend. Mason had great difficulties getting comfortable that night and his temp started to increase. We gave him some ibuprofen, and about 9:30 that night, decided we wanted to get him checked in Marshfield. About 20 minutes on our way to the hospital, Mason's fever broke. It was a Sunday night, we both had to work in the morning, and we made the decision to turn back home. We tried to make him comfortable at home and eventually, he did get a little sleep. He was clearly very tight all night, almost like the pump stopped working or something.
I called the docs first thing the next morning to explain what had happened. Mason had follow-up appts scheduled that afternoon with neurosurgery and physical medicine anyway, so we decided to just keep those.
Chris took him to those appointments. They also noticed the redness and swelling and decided to put him on some antibiotics and send him home. They said if he had any discharge from the incisions to come back in right away. After his first dose of the antibiotics, Mason was back to normal. Happy, no temp, acting his normal self.
On Tuesday, I headed out of town with a friend. I checked in with Chris regularly to check on Mason and all reports were "yes, he's doing great...happy."
On Thursday, 6/26/14, Chris called to say that Megan noticed some puss around the incision site. This alerted him and he asked her to send a picture. Once Chris got the pic, he sent it to me and we both thought - crap. Not good.
Chris called Marshfield Clinic and they said to bring him in right away. By the time Chris got here (3 pm or so), the site had swollen as if there were a baseball under his skin. Keep in mind that Chris checked the incision that morning before he left for work so the swelling/liquid all happened in a matter of 8 hours. When he got to Marshfield Clinic, he went to neurosurgery. A physician's assistant took a 4 inch needle and injected it into his belly and drew out 2 oz of liquid. Chris described it as snot-colored. I'm thankful I wasn't here for that. I would have thrown up and passed out. They sent it for testing and once results came back (high WBC), Mason was admitted.
Once up in pediatrics, they got Chris to sign all the consents to get him into surgery around 7 pm. At this point, I was still out of town. Chris assured me that there was nothing I could do here while he was in surgery.
Mason came out of surgery a little after 8 pm - in a great deal of pain. The meds they used last time that worked awesome (Fetanyl) weren't doing the trick and it took a good hour to find something to help him relax. They finally gave him Ativan to help him relax. I got here just before midnight and Mason has been pretty drugged and resting since then.
During the surgery, they took a sample of Mason's spinal fluid. They are testing it to make sure that the bacteria did not get into his spinal fluid - which could be extremely dangerous. We are waiting on results. They also did a smear of the bacteria to find out exactly what bacteria caused this infection and we hope to get those results early this morning as well. That will determine the course of treatment.
Chris has been amazing dealing with all of this. Not only was he dealing with all the nurses/docs/questions but the nonstop texts from me wanting updates until I got here. I have not been doing so great with this. I go from high anxiety, to having an emotional breakdown, all in private of course - I don't let people see me cry. I think I had my first panic attack on the way to Marshfield last night as reality set in that "this is our life." I'm just fucking sick of it all. (and I apologize Dad for swearing) but this blog allows me to be me - raw in my emotions and I'm not always going to be able to hide that.
Chris mentioned having the surgery again in a month or so to have the pump put back in and I'm just not ready for that. I'm pissed. I'm frustrated. I don't like being here and even more, I hate seeing Mason like this. This is not the life I want for him - constantly in and out of clinic visits and hospital stays. I am very aware that there are people that deal with much more than we do but I don't think that matters to me right now.
Thank you everyone for dealing with my emotions outpouring on here. We really, really do appreciate all of your love and support and know that you are praying for him and wishing him the best. Please don't take this post as a pity-party in any way...I just want it to be honest and real.
(Hugs)
Friday, June 13, 2014
We're Ready!!
We got news back from Marathon County and they are able to help fund a portion of Mason's bike also! We are so blessed. We are officially $1,059.00 short of our goal.
I have the website up and running. I have never used a site like this before, so we will see how this goes. Once our funding is all in place, we will be able to order the bike.
Here's the link!
Thank you all, again, for your willingness to come forward and assist. The response we received was so overwhelming and we are so lucky to have all of you as friends and family!
Love you all,
Chris, Jen, Mason & JJ
I have the website up and running. I have never used a site like this before, so we will see how this goes. Once our funding is all in place, we will be able to order the bike.
Here's the link!
Thank you all, again, for your willingness to come forward and assist. The response we received was so overwhelming and we are so lucky to have all of you as friends and family!
Love you all,
Chris, Jen, Mason & JJ
Thursday, June 12, 2014
Hangin', Waitin'
Mason and I had a fun afternoon hanging out. We watched Cars 2 and are now watching Despicable Me 2. Daddy ran to get some supper and then we'll have family time before I head home to see JJ!
Mason managed to get so excited with his balloons this afternoon that he pulled his own IV out. Sneaky kid! We decided it was time to remove the gown and dress in normal clothes too. After we got him dressed, we did some walking around in the halls, checked out the fish tank, and watched a little of Finding Nemo on the BIG screen in the lobby.
While in the lobby, Dr. Meilahn stopped by to give Mason a baclofen increase. She'll stop by in the morning for another increase and then give her approval for us to go home! Then, all we need is the all-clear from neuro-surgery!
Here's a pic of the little guy playing with his balloons.
Mason managed to get so excited with his balloons this afternoon that he pulled his own IV out. Sneaky kid! We decided it was time to remove the gown and dress in normal clothes too. After we got him dressed, we did some walking around in the halls, checked out the fish tank, and watched a little of Finding Nemo on the BIG screen in the lobby.
While in the lobby, Dr. Meilahn stopped by to give Mason a baclofen increase. She'll stop by in the morning for another increase and then give her approval for us to go home! Then, all we need is the all-clear from neuro-surgery!
Here's a pic of the little guy playing with his balloons.
Great spirits
Mason is doing fantastic. He slept great, Chris figures about 8 hours. Mason doesn't have anything connected at all, just an IV they left in, in case they need to administer something by IV in an emergency.
He has started drinking his pediasure orally again, just very small amounts. I think he knows we're going to give it to him in the G-tube anyway, so why put forth the effort?
JJ, Papa Rooster and Gramma Duck had a nice visit last night with Mason, he really enjoyed seeing them. He's also been extremely attached to the big bunch of balloons that Auntie K, Uncle B, and cousins C & O sent. When I tell him its time to eat, or do something different, he gets mad that I take them away.
He is watching Cars 2 right now and is kicking and squirming all over the bed. It doesn't appear that his two incisions (or the pump) are bothering him.
A little birdie said Auntie M, and cousins H, C & S are coming shortly! Can't wait!
Some folks from Child Life stopped by and Mason picked out a few gifts for Daddy for Father's Day. He then picked out the wrapping paper and helped make a bow. We're excited for Daddy to get back tonight so Mason can help him open them!
All talk of discharge has been for tomorrow. We have visitors coming into town for some very exciting plans so we hope that we can bust out of here and get home to work on some projects and visit with family. Everything is dependent on Mason's dose increases going okay.
That's all for now! I'll post pics later.
He has started drinking his pediasure orally again, just very small amounts. I think he knows we're going to give it to him in the G-tube anyway, so why put forth the effort?
JJ, Papa Rooster and Gramma Duck had a nice visit last night with Mason, he really enjoyed seeing them. He's also been extremely attached to the big bunch of balloons that Auntie K, Uncle B, and cousins C & O sent. When I tell him its time to eat, or do something different, he gets mad that I take them away.
He is watching Cars 2 right now and is kicking and squirming all over the bed. It doesn't appear that his two incisions (or the pump) are bothering him.
A little birdie said Auntie M, and cousins H, C & S are coming shortly! Can't wait!
Some folks from Child Life stopped by and Mason picked out a few gifts for Daddy for Father's Day. He then picked out the wrapping paper and helped make a bow. We're excited for Daddy to get back tonight so Mason can help him open them!
All talk of discharge has been for tomorrow. We have visitors coming into town for some very exciting plans so we hope that we can bust out of here and get home to work on some projects and visit with family. Everything is dependent on Mason's dose increases going okay.
That's all for now! I'll post pics later.
Wednesday, June 11, 2014
The bike is getting closer...
We received the quote in the mail!!! We found out we may be able to obtain additional funding through Marathon County as well so I am not ready to accept donations towards Mason's bike.
There is actually a chance we could get this whole monster covered through grants. It's so exciting. I'm waiting for a call back to find out from Marathon County for sure, and when I do, I will post our "Go Fund Me" website for those that expressed interest in helping out, if necessary.
Can't wait!!
There is actually a chance we could get this whole monster covered through grants. It's so exciting. I'm waiting for a call back to find out from Marathon County for sure, and when I do, I will post our "Go Fund Me" website for those that expressed interest in helping out, if necessary.
Can't wait!!
Changing of the guards
Daddy showed up this morning which allowed me to catch a quick shower and get to work to do a little catch-up. They look like they are having a fine time watching cartoons:
Dr. Meilahn came in with the pump device to reprogram Mason's baclofen dose. It's interesting!
Mommy and JJ are back tonight for a visit, along with Grandma Duck and Papa Rooster. Should be a fun evening!
Dr. Meilahn came in with the pump device to reprogram Mason's baclofen dose. It's interesting!
Mason is moving to a regular peds room today, out of PICU, which means less cords and the IV can stop! Yay! He hasn't had pain meds since yesterday which is amazing. We are looking forward to getting him out and about in his cart tomorrow to see the fish tank and things other than the room! We're still hoping for a Friday discharge, if they are able to increase his baclofen doses safely over the next 3 days...Mommy and JJ are back tonight for a visit, along with Grandma Duck and Papa Rooster. Should be a fun evening!
A "tad" exhausted...
Mason's night went fairly smoothly. I, feel, however, that based on my very little sleep, it is necessary to offer a few suggestions on how they can make an overnight experience better for a 6 year old (and his mommy):
After the hours of 8 pm, the IV fluid line should have a "silent" notification if there is an air bubble in the line, rather than beeps that go off every single second until the nurse makes it into the room to silence it, which I've counted...takes at least 15 seconds. Enough to wake us both up.
After the hours of 8 pm, thermometers that can do a gentle reading with a swipe across the forehead should be used rather than one that requires jamming it into his armpit and getting an incredibly dirty look shot at you.
I understand that it is necessary to leave at least one light on so that the nurses can see from outside the room. What is not as necessary though, is having an exit door that clicks loudly every time someone has to leave the PICU to pee, and then again to re-enter.
I think that blood draws at 5 am are ridiculous. Is 6 am or even 7 am completely out of the question?
I don't work in this industry, and I'm sure there are reasons for all of this, but I'm tired and I feel like complaining.
Mason still has a smile on his face. He's watching cartoons. I wish I had his morning attitude!
Thanks for listening. :)
After the hours of 8 pm, the IV fluid line should have a "silent" notification if there is an air bubble in the line, rather than beeps that go off every single second until the nurse makes it into the room to silence it, which I've counted...takes at least 15 seconds. Enough to wake us both up.
After the hours of 8 pm, thermometers that can do a gentle reading with a swipe across the forehead should be used rather than one that requires jamming it into his armpit and getting an incredibly dirty look shot at you.
I understand that it is necessary to leave at least one light on so that the nurses can see from outside the room. What is not as necessary though, is having an exit door that clicks loudly every time someone has to leave the PICU to pee, and then again to re-enter.
I think that blood draws at 5 am are ridiculous. Is 6 am or even 7 am completely out of the question?
I don't work in this industry, and I'm sure there are reasons for all of this, but I'm tired and I feel like complaining.
Mason still has a smile on his face. He's watching cartoons. I wish I had his morning attitude!
Thanks for listening. :)
Tuesday, June 10, 2014
Lots of Sleep
Mason has been sleeping off and on since noon. When he's awake, he's very still and watches TV. I'm sure this whole thing is exhausting for him, you can tell even when he is awake that he's very tired.
They aren't pushing him at all today, but physical therapy starts bright and early tomorrow. They want to see how the baclofen is working.
We will for sure be here through Thursday, likely Friday.
Mason is on a whole nice round of meds - his typical seizure meds, still oral baclofen as they wean him off, antibiotics twice a day, Tylenol every 4 hours, Fetanyl as needed, and they will start giving him Pedialyte tonight. :) He had a little spit-up earlier, but I'm sure he's feeling a little nauseous.
We were waiting for him to pee also, because they have to watch for urine output. They scared him with a little catheter talk and BAM, he delivered.
He's very aware of the nurses and doctors that come into the room - but could care less when we walk around. Megan and Mic are here visiting and he's pretty comfortable around them also.
I'm looking forward to an interesting night. I'll keep blogging if anything news-worthy happens.
They aren't pushing him at all today, but physical therapy starts bright and early tomorrow. They want to see how the baclofen is working.
We will for sure be here through Thursday, likely Friday.
Mason is on a whole nice round of meds - his typical seizure meds, still oral baclofen as they wean him off, antibiotics twice a day, Tylenol every 4 hours, Fetanyl as needed, and they will start giving him Pedialyte tonight. :) He had a little spit-up earlier, but I'm sure he's feeling a little nauseous.
We were waiting for him to pee also, because they have to watch for urine output. They scared him with a little catheter talk and BAM, he delivered.
He's very aware of the nurses and doctors that come into the room - but could care less when we walk around. Megan and Mic are here visiting and he's pretty comfortable around them also.
I'm looking forward to an interesting night. I'll keep blogging if anything news-worthy happens.
Just hangin out...
Mason has looked around the room a little bit but is still pretty tired. He's in and out of sleep. They are managing his pain with Tylenol every 4 hours and Fetanyl as needed. I'm glad he's sleeping but also hope he sleeps a fair amount tonight for Mommy. :)
Chris and I took turns eating lunch, nothing exciting to report there.
I took some video of drowsy Mason. It's nice to see him responding and smiling a little bit.
The rest of the day will be us taking naps, Mason taking naps and Chris heads home around 6. We'll plan a little Facetime later with JJ & Daddy if Mason is in good spirits. Maybe we'll even facetime a certain Grandma and a certain Auntie later. :)
Thanks for checking in! :)
Chris and I took turns eating lunch, nothing exciting to report there.
The rest of the day will be us taking naps, Mason taking naps and Chris heads home around 6. We'll plan a little Facetime later with JJ & Daddy if Mason is in good spirits. Maybe we'll even facetime a certain Grandma and a certain Auntie later. :)
Thanks for checking in! :)
Up to PICU
We are up in PICU now, Mason got brought up at 10 am but there was a breakdown in communication and Chris and I didn't get up here until 10:30. Blessing in disguise - I don't like seeing my little guy in pain. He is quite uncomfortable and not ready to look at Chris or me, much less have us talk to him.
They turned the lights down and administered morphine, which didn't even put a dent in his pain. They then administered Fentanyl which took effect immediately and he is resting comfortably. He can have Fentanyl every 15 minutes. The goal today is to keep him comfortable to prevent a spinal headache.
His baclofen pump started working 10 minutes after they put it in so it is already administering this needed drug into his spine. I think muscle spasms are the least of our concerns right now but nice to know its working!
The blood pressure cuff tightens every 15 minutes which Mason does not enjoy. He is breathing well with a little squeak because of the scratchiness from the breathing tube which is reassuring because we can sit across the room and still know he is breathing nice and slow, and relaxed.
He's got his abdominal binding on, to keep everything in place, and a pulse-ox, and an IV in his left hand. Once he's feeling better tomorrow, I'm sure he'll be fighting to pull it all off. :)
For now, he's resting nice. I like to see this, its much better than the quivering look of pain from 15 minutes ago...
They turned the lights down and administered morphine, which didn't even put a dent in his pain. They then administered Fentanyl which took effect immediately and he is resting comfortably. He can have Fentanyl every 15 minutes. The goal today is to keep him comfortable to prevent a spinal headache.
His baclofen pump started working 10 minutes after they put it in so it is already administering this needed drug into his spine. I think muscle spasms are the least of our concerns right now but nice to know its working!
The blood pressure cuff tightens every 15 minutes which Mason does not enjoy. He is breathing well with a little squeak because of the scratchiness from the breathing tube which is reassuring because we can sit across the room and still know he is breathing nice and slow, and relaxed.
He's got his abdominal binding on, to keep everything in place, and a pulse-ox, and an IV in his left hand. Once he's feeling better tomorrow, I'm sure he'll be fighting to pull it all off. :)
For now, he's resting nice. I like to see this, its much better than the quivering look of pain from 15 minutes ago...
Mason is still in surgery...
It's 9:30, and based on the most recent update in the waiting room, he's been in the procedure for about an hour. They said 90 minutes...so we hope to hear he's been moved to recovery about 10 am. They want to get us in there as soon as possible to help keep him relaxed as he comes out of anesthesia. I'm sure it's weird and it probably feels icky.
Only one of us can go back to recovery. I'm electing Chris but he doesn't know it yet. I don't really like seeing Mason uncomfortable and since I'm the one spending the first night with him in ICU I figure its only fair. ;)
Now I'm trying to decide if I should try to get the cafeteria to see what food is left from breakfast or if I should make my stomach wait it out for lunch...random thoughts from a hungry mom.
Also, a quick note I wanted to jot down on the blog for those of you not on Facebook...
We have received so many gracious emails/calls/letters of support to help us get Mason that freedom bike. If you missed the post, read it here. We figured we might as well make some progress with things since we're here so we'll call the therapists later today to see if we can get an update on the quote. We are so excited that this is going to happen. I hope that once its ordered, and paid for, that we can get it by August so that Mason can still enjoy it this summer! For those wondering, this bike should last Mason 4-5 years. Our plan is to "re-gift" it to another family once Mason outgrows it. It's obvious that this piece of equipment is a want, not a need, but we appreciate everyone's support in helping us obtain something that Mason will truly enjoy! We can't wait to show you all pictures of him cruising around on it!
We'll try to get some pics of Mason once he's awake and back to his happy self.
Only one of us can go back to recovery. I'm electing Chris but he doesn't know it yet. I don't really like seeing Mason uncomfortable and since I'm the one spending the first night with him in ICU I figure its only fair. ;)
Now I'm trying to decide if I should try to get the cafeteria to see what food is left from breakfast or if I should make my stomach wait it out for lunch...random thoughts from a hungry mom.
Also, a quick note I wanted to jot down on the blog for those of you not on Facebook...
We have received so many gracious emails/calls/letters of support to help us get Mason that freedom bike. If you missed the post, read it here. We figured we might as well make some progress with things since we're here so we'll call the therapists later today to see if we can get an update on the quote. We are so excited that this is going to happen. I hope that once its ordered, and paid for, that we can get it by August so that Mason can still enjoy it this summer! For those wondering, this bike should last Mason 4-5 years. Our plan is to "re-gift" it to another family once Mason outgrows it. It's obvious that this piece of equipment is a want, not a need, but we appreciate everyone's support in helping us obtain something that Mason will truly enjoy! We can't wait to show you all pictures of him cruising around on it!
We'll try to get some pics of Mason once he's awake and back to his happy self.
And they begin...
We got here about 6:10 this morning. They checked Mason in, gave him his bracelet with a tractor on it, then took us back to PACU. (Hey nurses, what does that stand for? __ __ Care Unit?)
We ran through all the questions and they gave Mason versaid. It makes him forget everything and get nice and sleepy. They checked vitals, ran through a gazillion questions, and then rolled him off around 7:50 am.
At 8:00, I ran into Dr. Schneider at the vending machine. He removed the foreign object from Mason's ear that appeared to be an old piece of wax. Did we tell you this was also being accomplished today? :) Mason has had a weird foreign object in his ear for about 2 years, and we wanted to get it taken out while he was under anesthesia. It took the doc 2 minutes. It did cause a tad bit of bleeding when he pulled it out, so Mason will have to have ear drops for the next 5 days but that's it. A nasty chunk of ear wax. Good thing Mason isn't easily embarrassed.
It's funny about the ears, actually, because as we were checking Mason into the hospital, I pulled a tick out of his left ear (the wax was in the right ear). I'm so glad I saw that or that would have been a weird shock for the doctors!!
After I ran into Dr. Schneider, I ran into Dr. Gonugunta, who was grabbing a snack from the vending machine. He said "I obviously haven't started yet. " LOL! He's the one placing the pump and catheter. I'm glad he's going to make sure he's well nourished...I wouldn't want a rumbling stomach affecting his performance in there. :)
So they should be starting the pump placement shortly. They say it takes about 2 hours...
We ran through all the questions and they gave Mason versaid. It makes him forget everything and get nice and sleepy. They checked vitals, ran through a gazillion questions, and then rolled him off around 7:50 am.
At 8:00, I ran into Dr. Schneider at the vending machine. He removed the foreign object from Mason's ear that appeared to be an old piece of wax. Did we tell you this was also being accomplished today? :) Mason has had a weird foreign object in his ear for about 2 years, and we wanted to get it taken out while he was under anesthesia. It took the doc 2 minutes. It did cause a tad bit of bleeding when he pulled it out, so Mason will have to have ear drops for the next 5 days but that's it. A nasty chunk of ear wax. Good thing Mason isn't easily embarrassed.
It's funny about the ears, actually, because as we were checking Mason into the hospital, I pulled a tick out of his left ear (the wax was in the right ear). I'm so glad I saw that or that would have been a weird shock for the doctors!!
After I ran into Dr. Schneider, I ran into Dr. Gonugunta, who was grabbing a snack from the vending machine. He said "I obviously haven't started yet. " LOL! He's the one placing the pump and catheter. I'm glad he's going to make sure he's well nourished...I wouldn't want a rumbling stomach affecting his performance in there. :)
So they should be starting the pump placement shortly. They say it takes about 2 hours...
Thursday, June 5, 2014
So Mason is having 'what' done?
We are only 5 days away from surgery. We're excited for the changes, nervous about the procedure and hopeful everything goes smoothly. We're planning a work weekend but I also want to make sure we take some time to get Mason swimming since it will be 6-8 weeks before he'll be able to do that again.
We check in at 6:15 am Tuesday morning but that time can change last minute. They call us Monday to confirm. "Auntie" Megan has offered to spend the night Monday so that she can get Miss JJ up and off to daycare. Once checked in, we're not exactly sure how long before Mason is sedated and the procedure starts.
They start by making an incision in his lower right abdomen. They can put it on either side, below his belly button, but above his hips. We elected for the right side since his G-tube button in on the left side. They will suture the pump (about the size of a hockey puck) into his abdominal cavity. Connected to this pump will be a long tube that ends with a needle. The needle is placed into his spine. This is how the baclofen gets pumped into his spine. By placing it in a specific area of his spine, it ensures that the spasticity of his muscles is only relaxed in his lower extremities. When he sleeps, this medicine may go up higher in his spinal fluid which may give his upper extremities more relaxation but that may really help him get a nice peaceful night's sleep. (We had to squeeze in another round of botox because he was so tight and we couldn't wait any longer before this procedure. For those of you that don't know - it was delayed 4 weeks due to pneumonia.)
The procedure itself takes 2-3 hours, then he's in recovery, then he's in ICU for 24 hours. The biggest risk is infection. There is also risk that some spinal fluid can leak out and cause a "spinal headache". Mason is heavily sedated for about 24 hours so that he doesn't try to sit up. After ICU, we are in pediatrics for 2-3 more days to monitor for infection.
Mason will wear an abdominal binding for 6 weeks (hence the no swimming part.) He shouldn't be twisting, as it can cause the sutures (that hold the pump in place) to jar loose.
Mason will need his pump replaced every 6 years. They are set to stop working at 7 so they like to replace them prior. Mason will go to the doctor every 4-5 months to have the baclofen filled in his pump (they numb the skin and inject the medicine via syringe into a silicone port on the pump.)
Even though this procedure has been discussed a dozen times with us, I'm amazed at this technology and the way it brings relief to those who need it. This same pump placement procedure is used for patients that pain relief in later stages of cancer. We hope that it is successful and brings the relief Mason needs.
Here is a you-tube video of the procedure if you care to watch:
It is graphic, FYI
Deciding to have this procedure with Mason was a tough decision. No one wants to have surgery, much less put their child through it. However, the thought of Mason's comfort every day is what really helped us make this decision. We had a trial intrathecal dose of Baclofen given to Mason several months of ago and the outcome was amazing. Mason seemed so happy and relaxed.
Here's video evidence!
We'll post on here a lot the next couple days. Keep Mason in your thoughts and prayers! :)
We check in at 6:15 am Tuesday morning but that time can change last minute. They call us Monday to confirm. "Auntie" Megan has offered to spend the night Monday so that she can get Miss JJ up and off to daycare. Once checked in, we're not exactly sure how long before Mason is sedated and the procedure starts.
They start by making an incision in his lower right abdomen. They can put it on either side, below his belly button, but above his hips. We elected for the right side since his G-tube button in on the left side. They will suture the pump (about the size of a hockey puck) into his abdominal cavity. Connected to this pump will be a long tube that ends with a needle. The needle is placed into his spine. This is how the baclofen gets pumped into his spine. By placing it in a specific area of his spine, it ensures that the spasticity of his muscles is only relaxed in his lower extremities. When he sleeps, this medicine may go up higher in his spinal fluid which may give his upper extremities more relaxation but that may really help him get a nice peaceful night's sleep. (We had to squeeze in another round of botox because he was so tight and we couldn't wait any longer before this procedure. For those of you that don't know - it was delayed 4 weeks due to pneumonia.)
The procedure itself takes 2-3 hours, then he's in recovery, then he's in ICU for 24 hours. The biggest risk is infection. There is also risk that some spinal fluid can leak out and cause a "spinal headache". Mason is heavily sedated for about 24 hours so that he doesn't try to sit up. After ICU, we are in pediatrics for 2-3 more days to monitor for infection.
Mason will wear an abdominal binding for 6 weeks (hence the no swimming part.) He shouldn't be twisting, as it can cause the sutures (that hold the pump in place) to jar loose.
Mason will need his pump replaced every 6 years. They are set to stop working at 7 so they like to replace them prior. Mason will go to the doctor every 4-5 months to have the baclofen filled in his pump (they numb the skin and inject the medicine via syringe into a silicone port on the pump.)
Even though this procedure has been discussed a dozen times with us, I'm amazed at this technology and the way it brings relief to those who need it. This same pump placement procedure is used for patients that pain relief in later stages of cancer. We hope that it is successful and brings the relief Mason needs.
Here is a you-tube video of the procedure if you care to watch:
It is graphic, FYI
Deciding to have this procedure with Mason was a tough decision. No one wants to have surgery, much less put their child through it. However, the thought of Mason's comfort every day is what really helped us make this decision. We had a trial intrathecal dose of Baclofen given to Mason several months of ago and the outcome was amazing. Mason seemed so happy and relaxed.
Here's video evidence!
We'll post on here a lot the next couple days. Keep Mason in your thoughts and prayers! :)
Sunday, June 1, 2014
Help Make Mason Mobile!
I intended to get back on the blog in about 9 days or so to give you all updates on Mason's procedure (baclofen pump placement)...but I'm back a little early to ask your help in a new mission...
Yesterday we attended an adaptive bike rodeo in Marshfield. I have never seen Mason ride a bike, and Chris had only seen him on one once...the day prior at school when he stopped to update the summer school staff on Mason and show them his equipment...when he rode across the room on the school bike.
I'll let the video show you the amazing way Mason has the opportunity to be mobile...
We've attempted to get Mason mobile on a gait trainer, but he doesn't have the strength to support his body weight and move his legs at the same time. This bike is finally a way that he can break up some of that tone in his legs and be able to explore with us as a family.
The hard part is the cost. I told Chris that this event was great (and it really is) but leaving without that amazing piece of equipment and trying to figure out how you are going to afford it is, well, frustrating.
The bike will cost anywhere between $4500-$5500. The vendor gives 20% off pricing, making it between $3600 and $4400. We will receive the exact quote in the mail from the vendor based on the adaptations Mason needs (special harness, foot straps, etc.) The Children's Miracle Network will donate $1300. Chris and I are willing to pay $1000. We'll need to raise between $1300 & $2100. My best guess is $1700 (split down the middle).
So once this quote comes in, I will be working on ways to get this funding. We are on the waiting list for Marathon County Division of Long-Term Care Support, which may be able to assist. We were also told to contact our church and our local Lions Club. If any of our readers know of other sources that can help us out with even a small donation, send either Chris or I an email/text/facebook message!
Our new mission to start this June - Help Make Mason Mobile! :) Watch for more information!
Yesterday we attended an adaptive bike rodeo in Marshfield. I have never seen Mason ride a bike, and Chris had only seen him on one once...the day prior at school when he stopped to update the summer school staff on Mason and show them his equipment...when he rode across the room on the school bike.
I'll let the video show you the amazing way Mason has the opportunity to be mobile...
(smiles) Yes! That's my kid! Moving!
We've attempted to get Mason mobile on a gait trainer, but he doesn't have the strength to support his body weight and move his legs at the same time. This bike is finally a way that he can break up some of that tone in his legs and be able to explore with us as a family.
The hard part is the cost. I told Chris that this event was great (and it really is) but leaving without that amazing piece of equipment and trying to figure out how you are going to afford it is, well, frustrating.
The bike will cost anywhere between $4500-$5500. The vendor gives 20% off pricing, making it between $3600 and $4400. We will receive the exact quote in the mail from the vendor based on the adaptations Mason needs (special harness, foot straps, etc.) The Children's Miracle Network will donate $1300. Chris and I are willing to pay $1000. We'll need to raise between $1300 & $2100. My best guess is $1700 (split down the middle).
So once this quote comes in, I will be working on ways to get this funding. We are on the waiting list for Marathon County Division of Long-Term Care Support, which may be able to assist. We were also told to contact our church and our local Lions Club. If any of our readers know of other sources that can help us out with even a small donation, send either Chris or I an email/text/facebook message!
Our new mission to start this June - Help Make Mason Mobile! :) Watch for more information!
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