It's been quite a while since I blogged. After our wild and crazy summer, I guess I just needed some time to decompress. There are many things I need to catch you all up on, but today, as I sit at the Honda Dealership waiting for my car, I thought I would write about how I've been feeling since my procedure this summer.
The answer to this is, I'm feeling quite well. We hoped that the ablation would have gotten rid of all of my funny heart beats. When I woke up from the procedure, it was evident that had not happened. But there was still some thought that maybe my heart was just irritated from the procedure and after it had time to heal, the funny beats would settle down. Now 5 months after, it is quite apparent that is not going to happen either. I still feel those funny beats pretty much every day, usually between the hours of 5 - 8pm. However, they are considerably less than what I was experiencing before.
The best part is that I'm on so much less medication. Yes, I'm still taking medication to control what I am having, but it is considerably less than what I was on. In fact, when any doctor heard about the amount I was taking, they all responded with "I've never known anyone that was on that much of that drug." The result of being on less is that I feel so much better than before. I guess I never realized that I felt that bad. I have a greater amount of energy each day. I'm still not a morning person, but it's not quite as hard to get up when my alarm goes off, most days anyway. I don't feel the need to lay down and take a nap every day like before. I can exercise and actually get my heart rate up above 100. And after exercising, I don't feel so run down for the rest of the day. I feel healthier and better equipped to make it through each day.
Now lets not get crazy. I'm not going to go out and start training for a marathon tomorrow. That task will never be on my list of things to do. I think my doctor would agree with me on that. I know my body pretty well and I know when to push myself and when to back off. The lazy side of me tends to lean towards the backing off, but I guess it's better to be safe than sorry.
So I guess all in all, my little trip to Ohio this summer turned out to be quite effective. So what if we didn't get rid of all of my funny beats. I have greatly improved my quality of life. I am so thankful that I had an option to do this. I'm thankful for a doctor who always tries to make life easier and better for me. Taking care of my family is the most important thing I do and having the chance to do this for a long time means the world to me. There may be more trips to Ohio in my future.
Tuesday, November 19, 2013
Thursday, August 15, 2013
Super Place Camp
Super Place Camp is one of our favorite weeks of the
summer. It is a day camp for children
with special needs. Each camper is
paired up with 1 or 2 buddies that hang out with him for the whole week. John began attending when he was 4, so this
was our 4th year to be a part of it.
There are 6 churches, all within the same part of town, that sponsor
this camp and each year, it is held at a different church. This year was special because it was at our
church.
I was a little worried whether or
not he would be able to attend because just the week before, he spent 3 nights
in the hospital. We were so happy that
he bounced back so quickly and was well enough to attend. He loves his time there. This year’s buddy was great with John. She was so sweet and so good with him. Every day when I picked him up, he seemed to
be having a great time with her.
This year was also special because
his new buddy from horse therapy got to go too.
One of his friends from his old school was also there. It was nice for him to be able to see those
friends each day, and it was nice for mommy to be able to spend time during the
week with the other mommies.
While John is in camp, I don’t like
to drive all the way back home. So I
just hang out in the area for a few hours until it’s time to pick him up. There is a nice shopping center nearby, so
that’s usually where I spend my time. I
spent time at Starbucks almost everyday.
Free WiFi makes it a convenient place to hang out for a while. I also spent a little time at Barnes and
Noble. They have the same kind of café
and free WiFi set up. Plus they have
plenty to read. I did a little shopping
while I was there, and I got to have lunch a few times with the other
mommies. It was a nice break for me,
although being away from home all morning gave me no time to do anything in my
house.
The highlight of the week for Tommy
and I, actually wasn’t something that happened during that week. In fact, it didn’t even happen this
year. It was something from Super Place
Camp 2011. The director of our Special
Needs class at Tallowood, sent me a video that she was just shown. The video was taken in 2011 at Super Place
Camp. It was compiled of pictures of the
campers and the activities they participated in during the week. But the best part for us was the beginning
and the end. I’ll include the video
below, so you can see what we liked so much about it.
Super Place Camp 2011
Now we have a week and a half left
of summer before school starts. Summer
was such a blur, that I feel like we didn’t do much that was fun. Most years I am more than ready for him to go
back to school. But this year, I don’t
feel ready. I feel like we didn’t get
time to really enjoy our summer. Between
my surgery, John’s therapy, John’s sickness and camp, there wasn’t much time to
do fun stuff. Next week will be a more
relaxed week, free of appointments. So
we will try to make the most of our last week before school. 3rd grade, here he comes. :’(
Super Place Camp 2013
STOP THE MADNESS!!!!
…We left Austin early and came home. On the way home, I called and got an
appointment with his pediatrician for that afternoon. We got in to see the doctor and she really
thought it was just a virus and would run its course. But just in case it wasn’t, she prescribed an
antibiotic to give him only if he didn’t get better in a couple of days or if
he got worse. By that evening, he was
worse. He had a high fever, and a bad
cough. Also his trach secretions began
to turn yellow. I had Tommy pick up the
medicine on his way home and we gave him a dose. But by bedtime, he was crying and coughing
constantly. We checked his oxygen level
and realized it was really low. So we
decided to take him to the ER. Thank
goodness for TCH putting a campus out in Katy.
It was so nice to not have a long drive, and we got into a room right
away.
Of course, when we got to the
hospital, he was suddenly smiling instead of crying. The doctor ordered a breathing treatment, IV
fluids and a chest x-ray. The x-ray
showed no pneumonia. They took a culture
of his trach secretions but we had to wait a couple of days to find out if the
culture grew anything. I think he really
kind of wanted to admit him because of the oxygen level, but we convinced them
that we could take good care of him at home with his ventilator and the oxygen
we had there. So he prescribed a
stronger antibiotic than what our pediatrician prescribed and sent us
home. He began to perk up in the next
day or two and by Friday evening or Saturday, the fever was gone. We thought he was on the mend, until Tuesday
evening when his fever returned.
We took him back to the doctor the
next day. She felt terrible that we had
ended up in the ER the same day that we saw her in her office. So she prescribed another antibiotic and a
steroid for him to take over the next five days, along with the antibiotic that
he was already taking. She said if he
wasn’t perfect by the following week, to call her back.
Beginning Monday, before we went
back to the doctor, I noticed that John was sleeping all day. He was sleeping until 9 or 10 in the
morning. Then he’d get up, eat breakfast
and fall back to sleep. He repeated this
pattern all day, falling back to sleep after eating. When he was awake, he wouldn’t play. He would just lie on the floor. By the next Monday, he was still acting this
way. So I called the pediatrician back
and told her. She consulted with his
pulmonologist and they came to the conclusion that the respiratory infection
was no longer the issue and we needed to take him to the ER at the main campus
and let them do a complete workup to find out what was wrong with him. So on Tuesday morning, after feeding John
breakfast, Caitlin and I loaded him up and took him to the ER.
Fortunately, when we got there,
there was no wait. We got into a room
immediately. They ordered more chest
x-rays as well as abdominal x-rays.
After the x-rays, they discovered that his bowels were very
impacted. I will spare you too many
details. They tried two different things
to give him relief, and neither worked.
So they decided to admit him and start giving him a liquid through an NG
Tube (naso-gastric tube). This tube is
something he had as a baby in the NICU when he wasn’t able to eat on his
own. It goes in through the nose and
goes down to the stomach. They are able
to use this method to give nutrition if someone cannot take it by mouth. This particular liquid is very potent and
should have begun to work by the next day.
It took 24 hours before he got any relief. He really was pitiful, lying in the hospital
bed. He wasn’t able to have any other
food or drink during this time. While
his stomach was being filled and I’m sure he didn’t feel hungry, the lack of
nutrition had him completely lethargic.
It was so hard to see him that way.
Once he finally got the relief he needed, he began to perk up. By the next day, he was able to start eating
again. That made a huge difference. He still rested a lot that day because I
don’t think he got a lot of rest the night before. They told us on Thursday that he could go
home, but I opted to stay one more night, just because the diaper-changing
situation was pretty dicey by this time.
I would rather him dirty their sheets than mine. By Friday morning, he was 90% back to normal. He was smiling at everyone who walked in the
room, he was grabbing stethoscopes while the doctors were listening to him, and
he was pulling at all the wires and cables he could get his hands on. We were finally released that afternoon.
I was so happy to be sleeping back
in my bed and I was even happier to have my little boy back. He spent the next few days, recuperating and
catching up on rest. By the next week,
he was 100% himself. We saw his Pulmonologist this past Tuesday. After looking at his x-rays, she said his belly was so full that his liver looked like it was on the opposite side and his bowels were pushing up against his lungs. No wonder he wanted to sleep all of the time.
Here are some photos of John and all of the places he decided to rest while he was sick.
Thursday, August 8, 2013
Keep Austin Weird
So much has happened this summer, and I have intended to blog about it all. I have gotten a little bit behind. Normally, I would try to jam everything into one post, but so much has happened, that I think I'll split it up into different posts. So I'm going to play catch up a little.
A few posts ago, I told you about the crazy plans for our summer. I knew it was going to be a busy one, but I was looking forward to it. The main thing I was looking forward to was the therapy John was going to get in Austin. It took months to put everything together. I spent time almost every day working out some detail of the trip, from dates for the therapy, to what hotel to stay at and how many nights we would stay, to what day we would head home each weekend. Well the day finally came. We loaded up what felt like the entire house and off we went to Austin. My niece, Jennifer, was coming along for the 3 weeks, and while I was very happy to spend time with her, I didn't realize just how big of a help she was going to be.
We left on Monday morning, knowing that his therapy wasn't until 2pm. I tried getting an early check in at the hotel so we could try to at least get the car unloaded before therapy, but was told that they were fully booked the night before and wouldn't have our room ready until after 3:00. So I decided once we got into town, we would make a pitstop at our friend's house to eat lunch and get JT fed. It was sure nice to see our friends. Her son and JT were NICU buddies. That's where we first met and they have been wonderful friends ever since. About 1:30 we left her house to go to our first day of therapy.
Therapy went great. John was a pro. The first day was probably a little lighter than most because we spent the first 30 minutes going over John's history with the therapist. But he did great and I was excited to see the things he would be doing over the course of the next 3 weeks. We left the clinic at 5pm and went to check in at the hotel. That's when the drama started. The hotel had us booked in a different kind of room than what I reserved. Normally, that wouldn't be a big deal. I would have rolled with it and been on my way. But because I had made arrangements to have night time nursing for JT while we were there, I knew that I needed a room that had a separate bedroom so that we wouldn't be sleeping in the same room as JT and the nurse. So the desk clerk called another one of their properties who said they would have the kind of room we were looking for. It wasn't too far away, so I thought it wouldn't be a big deal. We get to the second property, and low and behold, they don't have the right room either. In fact. That hotel didn't even have that particular kind of room on their property. So after much frustration and talking things through with the manager, we made the decision that we would stay in two separate rooms that night at no cost to us, and then the next night we would go back to the first property who were definitely going to have the right room ready for us. When we got to the first hotel the next day, guess what? The room they had, was still not right. This had a separate bed, but it was all in one room. There was not a door to separate the rooms. So the manager got on the phone to a 3rd property and assured us they would have the right room. So we drive to this place, and were very happy to find out that indeed it was the room I was looking for. We finally got settled into that hotel that evening and it ended up being an even cheaper rate. That part was good. The part that wasn't so great was that it was in a not so good part of town. So we just made do and stayed in our room at night. We only ventured out during the day time. It wasn't a horrible set up, except that the only access to the bathroom was through the bedroom. So for the nurse's sake and JT's, I set him up in the bedroom and Jennifer and I slept on the sofa bed. FOR 3 WEEKS!
The rest of the week of therapy went great. JT was working hard and was doing a lot of great things. Going into this, I was so sure that he would get exhausted at some point and have a melt down in the middle of therapy. He never did. He worked hard every day and then came back to the room in the evenings and crashed early. He was cruising a long doing great. Some of the things they had him doing were so cool. The upside of being in Austin was that we got to spend a lot of time with our friends. They had us over for dinner at least 2 nights every week we were there. July 4th fell on Thursday, and because he had therapy again on Friday, we decided to stay in town rather than driving home for one day and then driving back. So we went to eat barbecue for lunch with them on July 4th. It was nice to spend some quality time catching up. After lunch, I took Jennifer and JT to the movies to see Despicable Me 2. It was super cute. Instead of going with our friends downtown for fireworks that evening, we stayed in and watched them on TV. Of course, JT crashed early.
Week 2 of therapy went off without a hitch. The hotel drama was behind us, he was doing so well in therapy and the week was sailing right along. I thought this is a breeze. We should have no trouble from here on out. Boy, I shouldn't have thought that. When we were leaving the clinic on Thursday, I was rear ended by a pickup truck while in the u-turn lane. This was not what I needed. There was not a huge amount of damage, but there was a nice dent in my bumper, along with some scratches in the paint and a little damage to the rear quarter panel. I knew it could be fixed easily, but I knew I was going to have to go through the headache of dealing with insurance companies in order to get it fixed. Ain't nobody got time for that. On Friday, the therapist who was working with him said she saw a lot of improvements in John's strength since the previous Friday. So I guess therapy must have been working.
Now it's week 3 of therapy. I was looking forward to see what the week would bring, but I was also ready to be home, sleeping in my own bed for good. This packing up and driving on the weekends was beginning to get old. I was ready for it to be over. Little did I know, the hard part was just beginning. Monday night, when I put John to bed, I noticed that his heart rate was a little higher than usual. That usually is our first sign that he may be getting sick. Tuesday at therapy, he was fine. He worked harder than he did any other day. He even walked for probably 45 minutes in a gait trainer. I just knew he was worn out and would crash that night. And he did. He fell asleep at 6pm. That's really early, even for him. His heart rate was high that night again, and by Wednesday morning, he had fever. That's just great. Not what we needed. We stayed in from therapy that day and hoped that whatever it was would just pass quickly. That evening, he was worse. So I made the decision to pack up and go home early. We were done with therapy and I needed to be home to take care of him....
Here are some of my favorite pictures from his time in Therapy.
Week 1
A few posts ago, I told you about the crazy plans for our summer. I knew it was going to be a busy one, but I was looking forward to it. The main thing I was looking forward to was the therapy John was going to get in Austin. It took months to put everything together. I spent time almost every day working out some detail of the trip, from dates for the therapy, to what hotel to stay at and how many nights we would stay, to what day we would head home each weekend. Well the day finally came. We loaded up what felt like the entire house and off we went to Austin. My niece, Jennifer, was coming along for the 3 weeks, and while I was very happy to spend time with her, I didn't realize just how big of a help she was going to be.
 |
| Pulling out of the garage on Day 1 |
We left on Monday morning, knowing that his therapy wasn't until 2pm. I tried getting an early check in at the hotel so we could try to at least get the car unloaded before therapy, but was told that they were fully booked the night before and wouldn't have our room ready until after 3:00. So I decided once we got into town, we would make a pitstop at our friend's house to eat lunch and get JT fed. It was sure nice to see our friends. Her son and JT were NICU buddies. That's where we first met and they have been wonderful friends ever since. About 1:30 we left her house to go to our first day of therapy.
Therapy went great. John was a pro. The first day was probably a little lighter than most because we spent the first 30 minutes going over John's history with the therapist. But he did great and I was excited to see the things he would be doing over the course of the next 3 weeks. We left the clinic at 5pm and went to check in at the hotel. That's when the drama started. The hotel had us booked in a different kind of room than what I reserved. Normally, that wouldn't be a big deal. I would have rolled with it and been on my way. But because I had made arrangements to have night time nursing for JT while we were there, I knew that I needed a room that had a separate bedroom so that we wouldn't be sleeping in the same room as JT and the nurse. So the desk clerk called another one of their properties who said they would have the kind of room we were looking for. It wasn't too far away, so I thought it wouldn't be a big deal. We get to the second property, and low and behold, they don't have the right room either. In fact. That hotel didn't even have that particular kind of room on their property. So after much frustration and talking things through with the manager, we made the decision that we would stay in two separate rooms that night at no cost to us, and then the next night we would go back to the first property who were definitely going to have the right room ready for us. When we got to the first hotel the next day, guess what? The room they had, was still not right. This had a separate bed, but it was all in one room. There was not a door to separate the rooms. So the manager got on the phone to a 3rd property and assured us they would have the right room. So we drive to this place, and were very happy to find out that indeed it was the room I was looking for. We finally got settled into that hotel that evening and it ended up being an even cheaper rate. That part was good. The part that wasn't so great was that it was in a not so good part of town. So we just made do and stayed in our room at night. We only ventured out during the day time. It wasn't a horrible set up, except that the only access to the bathroom was through the bedroom. So for the nurse's sake and JT's, I set him up in the bedroom and Jennifer and I slept on the sofa bed. FOR 3 WEEKS!
The rest of the week of therapy went great. JT was working hard and was doing a lot of great things. Going into this, I was so sure that he would get exhausted at some point and have a melt down in the middle of therapy. He never did. He worked hard every day and then came back to the room in the evenings and crashed early. He was cruising a long doing great. Some of the things they had him doing were so cool. The upside of being in Austin was that we got to spend a lot of time with our friends. They had us over for dinner at least 2 nights every week we were there. July 4th fell on Thursday, and because he had therapy again on Friday, we decided to stay in town rather than driving home for one day and then driving back. So we went to eat barbecue for lunch with them on July 4th. It was nice to spend some quality time catching up. After lunch, I took Jennifer and JT to the movies to see Despicable Me 2. It was super cute. Instead of going with our friends downtown for fireworks that evening, we stayed in and watched them on TV. Of course, JT crashed early.
Week 2 of therapy went off without a hitch. The hotel drama was behind us, he was doing so well in therapy and the week was sailing right along. I thought this is a breeze. We should have no trouble from here on out. Boy, I shouldn't have thought that. When we were leaving the clinic on Thursday, I was rear ended by a pickup truck while in the u-turn lane. This was not what I needed. There was not a huge amount of damage, but there was a nice dent in my bumper, along with some scratches in the paint and a little damage to the rear quarter panel. I knew it could be fixed easily, but I knew I was going to have to go through the headache of dealing with insurance companies in order to get it fixed. Ain't nobody got time for that. On Friday, the therapist who was working with him said she saw a lot of improvements in John's strength since the previous Friday. So I guess therapy must have been working.
Now it's week 3 of therapy. I was looking forward to see what the week would bring, but I was also ready to be home, sleeping in my own bed for good. This packing up and driving on the weekends was beginning to get old. I was ready for it to be over. Little did I know, the hard part was just beginning. Monday night, when I put John to bed, I noticed that his heart rate was a little higher than usual. That usually is our first sign that he may be getting sick. Tuesday at therapy, he was fine. He worked harder than he did any other day. He even walked for probably 45 minutes in a gait trainer. I just knew he was worn out and would crash that night. And he did. He fell asleep at 6pm. That's really early, even for him. His heart rate was high that night again, and by Wednesday morning, he had fever. That's just great. Not what we needed. We stayed in from therapy that day and hoped that whatever it was would just pass quickly. That evening, he was worse. So I made the decision to pack up and go home early. We were done with therapy and I needed to be home to take care of him....
Here are some of my favorite pictures from his time in Therapy.
Week 1
 |
| Day 1 on the ball |
 |
| Doing some light reading |
 |
| Flying!!! |
 |
| Working on balance and loving it. |
Week 2
 |
| Standing at the ladder |
 |
| knees |
 |
| Standing |
 |
| A Fun workout |
Week 3 (very last day)
 |
| Having too much fun to be sick |
 |
| Sitting up tall |
 |
| Look how strong I am |
Thursday, June 20, 2013
Hustle and Bustle
The beginning of my week in Ohio was nice and relaxing. I slept as late as I wanted, I was fed 3 meals a day without having to think about what to have, I came and went as I pleased and I watched a lot of TV and played on my computer. Since I checked into the hospital yesterday afternoon, it has been anything but relaxing.
I knew my heart beat was high and erratic. I can feel that. But because I was relaxing and not doing much, I didn't feel bad. Apparently, my heart rate doesn't sit so well with the doctors here. I have met about 7 different doctors and a nurse practitioner so far, and I haven't even been here 24 hours. The nursing staff is great. I am in a corner room, which is bigger than the average room. I like to call it the penthouse suite. It makes me feel a little better. I have no overall complaints with the facilities or the care. I must say, for being in the north, everyone I have encountered here has been very friendly.
But the doctors don't seem to know what to do with my high rate. I think their initial reaction is to throw medicine at it, but with the procedure tomorrow, not much can be given because if you suppress the arrhythmia, then it will be difficult for the doctors to find where it's coming from in order to get rid of it. So I've been fighting them a little bit on that. Yesterday they gave me a small oral dose of a drug to help bring my heart rate down some. But it is short acting and doesn't stay in the system long. My heart rate has been consistently 140-150 and they ideally would like it to be below 100. They have given me a few IV doses of the same drug and that works in the short term, but then my heart rate goes back up. One doctor told me this morning they wanted to start an IV drip of a medicine that would help, and I refused to take it until one of 3 particular doctors said it was ok to take. I came all this way and I'm not going to risk messing things up for the procedure tomorrow. The decision was finally made that as long as I feel okay with the heart rate where it is, they would not give me any more medicine. My momma would be so proud of me for standing my ground.
Speaking of IV's, that is always tricky with me. I don't know if it's because I've been stuck so many times over the years or because I tend to not drink much fluids during the day, but starting an IV on me has always been fairly difficult. Yesterday, the nurse tried once and couldn't get it. So they brought in a cool ultrasound machine that allows them to see where the veins are so they can get an IV started. Well apparently, even with the ultrasound, they could only find one spot to start the IV and that was in the bend of my elbow on my right arm. Seriously, my right arm? So I'm trying to do whatever I can to make sure this IV stays and they don't have to try and start a new one.
As I was writing this, 4 new doctors came in to see me. I cannot keep them all straight. None of them are who I want to be seeing. But I am supposed to be getting a visit from one of the main 3 sometime this morning. The "main 3" as I call them consist of my favorite doctor in the whole wide world, Dr. K, who is a pediatric electrophysiologist, Another Dr. K, who is an adult electrophysiologist, and Dr. D, who is a cardiologist that specializes in adults with congenital heart disease. Those kinds of doctors are few and far between, which makes being an adult with congenital heart disease difficult. Nobody really knows what to do with me. That's why I think this team that is assembled here is the best way to go about it. You have doctors from different specialties working together to make everything come together. Hopefully it will.
The only down side today has been that I haven't been given breakfast yet, and now it's 10:30. Someone put orders in yesterday that said I was not to have anything to eat or drink after midnight last night, but it was supposed to be after midnight tonight. So they didn't have a breakfast tray ordered for me. The PCA came in about 30 minutes ago and ordered food for me, but I haven't received it yet. By the time I finish breakfast, my lunch tray will be arriving. But, if that is the only hiccup, I can deal with it.
Right now, I'm just waiting for Tommy to get here. His flight is supposed to land around 11am, which should put him at the hospital no later than noon. I'm looking forward to seeing him. Everyone keeps asking if anyone is with me, and I think they feel sorry for me that I'm by myself. I honestly don't mind it and honestly, since I've been in the hospital, I haven't been by myself much. Every time I look up, someone different is walking in.
I miss my Johnny at home. I am going to try to FaceTime with him today if I can be alone long enough. I know he's in good hands with Caitlin, but I also know how difficult keeping him occupied can be. I think Caitlin has a few outings planned with him though. Yesterday she took him shopping, and I know he loves that.
Well, my food has arrived and at the same time the lady coming to give me an echo walked in. So I need to go and eat so I can have the echo done afterward. Certainly never a dull moment around here.
I knew my heart beat was high and erratic. I can feel that. But because I was relaxing and not doing much, I didn't feel bad. Apparently, my heart rate doesn't sit so well with the doctors here. I have met about 7 different doctors and a nurse practitioner so far, and I haven't even been here 24 hours. The nursing staff is great. I am in a corner room, which is bigger than the average room. I like to call it the penthouse suite. It makes me feel a little better. I have no overall complaints with the facilities or the care. I must say, for being in the north, everyone I have encountered here has been very friendly.
But the doctors don't seem to know what to do with my high rate. I think their initial reaction is to throw medicine at it, but with the procedure tomorrow, not much can be given because if you suppress the arrhythmia, then it will be difficult for the doctors to find where it's coming from in order to get rid of it. So I've been fighting them a little bit on that. Yesterday they gave me a small oral dose of a drug to help bring my heart rate down some. But it is short acting and doesn't stay in the system long. My heart rate has been consistently 140-150 and they ideally would like it to be below 100. They have given me a few IV doses of the same drug and that works in the short term, but then my heart rate goes back up. One doctor told me this morning they wanted to start an IV drip of a medicine that would help, and I refused to take it until one of 3 particular doctors said it was ok to take. I came all this way and I'm not going to risk messing things up for the procedure tomorrow. The decision was finally made that as long as I feel okay with the heart rate where it is, they would not give me any more medicine. My momma would be so proud of me for standing my ground.
Speaking of IV's, that is always tricky with me. I don't know if it's because I've been stuck so many times over the years or because I tend to not drink much fluids during the day, but starting an IV on me has always been fairly difficult. Yesterday, the nurse tried once and couldn't get it. So they brought in a cool ultrasound machine that allows them to see where the veins are so they can get an IV started. Well apparently, even with the ultrasound, they could only find one spot to start the IV and that was in the bend of my elbow on my right arm. Seriously, my right arm? So I'm trying to do whatever I can to make sure this IV stays and they don't have to try and start a new one.
As I was writing this, 4 new doctors came in to see me. I cannot keep them all straight. None of them are who I want to be seeing. But I am supposed to be getting a visit from one of the main 3 sometime this morning. The "main 3" as I call them consist of my favorite doctor in the whole wide world, Dr. K, who is a pediatric electrophysiologist, Another Dr. K, who is an adult electrophysiologist, and Dr. D, who is a cardiologist that specializes in adults with congenital heart disease. Those kinds of doctors are few and far between, which makes being an adult with congenital heart disease difficult. Nobody really knows what to do with me. That's why I think this team that is assembled here is the best way to go about it. You have doctors from different specialties working together to make everything come together. Hopefully it will.
The only down side today has been that I haven't been given breakfast yet, and now it's 10:30. Someone put orders in yesterday that said I was not to have anything to eat or drink after midnight last night, but it was supposed to be after midnight tonight. So they didn't have a breakfast tray ordered for me. The PCA came in about 30 minutes ago and ordered food for me, but I haven't received it yet. By the time I finish breakfast, my lunch tray will be arriving. But, if that is the only hiccup, I can deal with it.
Right now, I'm just waiting for Tommy to get here. His flight is supposed to land around 11am, which should put him at the hospital no later than noon. I'm looking forward to seeing him. Everyone keeps asking if anyone is with me, and I think they feel sorry for me that I'm by myself. I honestly don't mind it and honestly, since I've been in the hospital, I haven't been by myself much. Every time I look up, someone different is walking in.
I miss my Johnny at home. I am going to try to FaceTime with him today if I can be alone long enough. I know he's in good hands with Caitlin, but I also know how difficult keeping him occupied can be. I think Caitlin has a few outings planned with him though. Yesterday she took him shopping, and I know he loves that.
Well, my food has arrived and at the same time the lady coming to give me an echo walked in. So I need to go and eat so I can have the echo done afterward. Certainly never a dull moment around here.
Monday, June 17, 2013
Down Time
I made it to Columbus yesterday and the flight was uneventful. I arrived at the Ronald McDonald House around 5pm. I have to say this place is far nicer than I was expecting. I have experience with the smaller Ronald McDonald House that is inside of Texas Children's but I never stayed at the larger, freestanding house. The room is very similar to a hotel. There are a lot of amenities here that help to make it feel more like home. They have a TV area in the main lobby along with a few other TV rooms in the other parts of the house. They have an exercise center, which I don't plan to use. They have a game room with a pool table and air hockey along with some other games. They have free laundry services as well as a fully stocked kitchen. They actually have 4 kitchen areas where people can cook. And they provide 3 meals a day, every day. There is also a media room with nice recliner chairs and a big screen where you can check out DVD's to watch. Being in Columbus, we are in the heart of Ohio State University. So one area here was donated by Jim Tressel and his wife, the former long time coach of Ohio State, and one room is designated for watching Ohio State Football on Saturdays during football season. It is really nice here.
I have mostly hung out in my room, watching TV or reading. Oh, and I've played a lot of Candy Crush. I slept until 9:00 this morning, and felt a little guilty for sleeping that late. Then I walked across the street to check out the hospital and to find my way to the Cardiology clinic, so I'll know where to go tomorrow. The Hospital itself is pretty nice. It's a children's hospital, so the open areas are decorated super cute. I even took a picture inside the lobby this morning.
Also, while I was there I checked out the gift shop and I found this toy that I will definitely have to get John.
Tommy said that we can get it and let John chew and slobber all over the Ohio State logo. Sounds like a good plan to me.
After Lunch, I went to see a movie. I saw the Jackie Robinson movie, 42 and enjoyed it. I was the only person in the theatre. Kind of weird, but also kind of nice.
Overall I feel fine. I feel my heart beating fast most of the day, but I think because I'm not home trying to keep up with John, then I don't feel terrible. That may change tomorrow, but for now, I'm just going to enjoy the time to myself, since we all know that is something moms rarely get.
Thanks for all of the sweet text messages, emails and phone calls I have received from so many people saying they are praying for me. It is very much appreciated. I tried to Face Time with John this morning, but he was too busy looking at Ms. Caitlin to even realize it was me. I guess I haven't been gone long enough for him to miss me.
I have mostly hung out in my room, watching TV or reading. Oh, and I've played a lot of Candy Crush. I slept until 9:00 this morning, and felt a little guilty for sleeping that late. Then I walked across the street to check out the hospital and to find my way to the Cardiology clinic, so I'll know where to go tomorrow. The Hospital itself is pretty nice. It's a children's hospital, so the open areas are decorated super cute. I even took a picture inside the lobby this morning.
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| Children's Hospital Lobby |
Also, while I was there I checked out the gift shop and I found this toy that I will definitely have to get John.
Tommy said that we can get it and let John chew and slobber all over the Ohio State logo. Sounds like a good plan to me.
After Lunch, I went to see a movie. I saw the Jackie Robinson movie, 42 and enjoyed it. I was the only person in the theatre. Kind of weird, but also kind of nice.
Overall I feel fine. I feel my heart beating fast most of the day, but I think because I'm not home trying to keep up with John, then I don't feel terrible. That may change tomorrow, but for now, I'm just going to enjoy the time to myself, since we all know that is something moms rarely get.
Thanks for all of the sweet text messages, emails and phone calls I have received from so many people saying they are praying for me. It is very much appreciated. I tried to Face Time with John this morning, but he was too busy looking at Ms. Caitlin to even realize it was me. I guess I haven't been gone long enough for him to miss me.
Friday, June 14, 2013
Calling all Prayer Warriors
A couple of posts ago, I told you about our summer plans and I mentioned that I would be going to Ohio for a heart procedure. Well, the time has come and I wanted to share just a short post about our plans for next week and how you can pray for us.
Saturday night, I will take my last dose of anti-arrhythmia medication and then Sunday I will get on a plane and fly to Columbus. I have a reservation at the Ronald McDonald House at Nationwide Children's Hospital and will be staying there possibly 3 nights. On Tuesday, I will see my doctor in clinic for her to do some routine tests to check the function of my heart. She plans to admit me into the Ross Heart Hospital sometime on Wednesday, unless I'm feeling bad before Wednesday. Then she'll admit me earlier. Thursday morning, Tommy will fly up to meet me and sometime that day, we will meet the Adult Congenital Heart Team who will be overseeing my care while I'm there. Then, sometime on Friday, I will have the procedure. If all goes according to plan, I will be able to leave the hospital sometime on Saturday and we plan to fly home Sunday. If the procedure does not work, then I may have to go into the hospital once I get home in order to start the medication that I'm trying so hard not to have to take.
So here are the specific things you guys can pray for.
1. Pray for safe travels for both Tommy and me.
2. Pray for John as he stays home with our nanny while we are away.
3. Pray for the nanny, Caitlin, as this will be her first time to keep John overnight. Fortunately, we have night nursing to give her a break.
4. Pray for the procedure itself. Pray that it goes smoothly with no complications. Pray that they are able to get rid of some of the arrhythmia if not all of it. Pray that I will not have to go on the new medication.
5. Pray that I will tolerate being off of my medication the first part of the week.
6. Pray for the doctors involved. Pray for wisdom to make the right decisions during the procedure.
I'll do my best to keep everyone updated while I'm there.
Saturday, June 8, 2013
Unexpected Blessing
Last night, we went out to dinner with some of our closest friends to one of our favorite Mexican restaurants. We sat out on the patio so we could enjoy the weather and the atmosphere. The adults sat at one end of the table while the kids sat at the other end. We had great conversation and many, many laughs. John was sitting in his chair next to me, taking in the surroundings and watching all of the people around us. We were finished eating, and the other kids were off getting their faces and arms painted by a lady the restaurant had there. The evening was perfect. It really couldn't get any better, so we thought.
While we were sitting there, a young girl and her mom walked up to John and started talking to him. It was obvious that they knew him, but I did not recognize them. I was sure it must be someone from school that I'm supposed to know, but just couldn't place them. Finally the mom introduced her daughter, Emma, and said that she was in John's second grade class at Shafer. He gets to spend 20 minutes a day in the classroom with other second graders for reading. And word on the street is the kids usually fight over who gets to read to John. According to the mom, Emma says she likes to scoot a little closer to John because he likes to put his hand on her arm and when she's too far away, he has to reach for her. Then the mom told us a story that I will never forget.
At some point during the year, the school had a contest for drawing a picture of the school's mascot, which is a silver knight. I'm not sure what the contest was for. Maybe it was for the cover of the yearbook. Anyway, mom said that Emma came home excited about drawing a picture of a knight. But Emma noticed that all of the other kids were just drawing ordinary knights. Emma thought about it and said that sometimes a knight can be in a wheel chair. So Emma googled a picture of a knight and a picture of a wheel chair and decided that was what she would draw. She had to get help from a friend because she couldn't figure out how to bend the knight's knees and make him fit into the chair. But eventually she figured it out and got her drawing to look the way she wanted. She then titled her picture "John". Emma didn't win the contest and she didn't get her knight on the cover, but she gave something to Tommy and I, and to everyone sitting at our table that none of us will ever forget. She showed compassion for our boy that nobody asked her to show. She touched all of our hearts with that story, and we will never forget the kindness she showed. It was great to meet her and her mom. Mom says that she was so happy to finally meet John because Emma talks about him all of the time.
Not only did this just melt our hearts, but it taught me several things. First of all, I am absolutely sure that John is at the school God wants him to be at. Even with the heartache of having to leave OKE and his teacher, God knew exactly what he was doing, just as he always does. He put our boy in a place where he can be taught, and loved and where he can also touch the hearts of other staff as well as students. Secondly, I learned that those 20 minutes every day that John gets to spend in the regular ed second grade class is very important. No matter how short of a time it seems, it is obviously enough time for John to touch the hearts of his fellow classmates and to build meaningful relationships.
I told Emma and her mom about our Special Buddies program at Shafer and told them that I would love for Emma to be a part of it next year. She is a perfect example of what Special Buddies is all about. Emma said she would love to be in Special Buddies and that she would love to be John's buddy. Hopefully they will end up in the same homeroom next year. I might have to see what I can do about that. Emma's mom took my phone number and she is supposed to text me a picture of the drawing that Emma made. I can't wait to see it!!!
While we were sitting there, a young girl and her mom walked up to John and started talking to him. It was obvious that they knew him, but I did not recognize them. I was sure it must be someone from school that I'm supposed to know, but just couldn't place them. Finally the mom introduced her daughter, Emma, and said that she was in John's second grade class at Shafer. He gets to spend 20 minutes a day in the classroom with other second graders for reading. And word on the street is the kids usually fight over who gets to read to John. According to the mom, Emma says she likes to scoot a little closer to John because he likes to put his hand on her arm and when she's too far away, he has to reach for her. Then the mom told us a story that I will never forget.
At some point during the year, the school had a contest for drawing a picture of the school's mascot, which is a silver knight. I'm not sure what the contest was for. Maybe it was for the cover of the yearbook. Anyway, mom said that Emma came home excited about drawing a picture of a knight. But Emma noticed that all of the other kids were just drawing ordinary knights. Emma thought about it and said that sometimes a knight can be in a wheel chair. So Emma googled a picture of a knight and a picture of a wheel chair and decided that was what she would draw. She had to get help from a friend because she couldn't figure out how to bend the knight's knees and make him fit into the chair. But eventually she figured it out and got her drawing to look the way she wanted. She then titled her picture "John". Emma didn't win the contest and she didn't get her knight on the cover, but she gave something to Tommy and I, and to everyone sitting at our table that none of us will ever forget. She showed compassion for our boy that nobody asked her to show. She touched all of our hearts with that story, and we will never forget the kindness she showed. It was great to meet her and her mom. Mom says that she was so happy to finally meet John because Emma talks about him all of the time.
Not only did this just melt our hearts, but it taught me several things. First of all, I am absolutely sure that John is at the school God wants him to be at. Even with the heartache of having to leave OKE and his teacher, God knew exactly what he was doing, just as he always does. He put our boy in a place where he can be taught, and loved and where he can also touch the hearts of other staff as well as students. Secondly, I learned that those 20 minutes every day that John gets to spend in the regular ed second grade class is very important. No matter how short of a time it seems, it is obviously enough time for John to touch the hearts of his fellow classmates and to build meaningful relationships.
I told Emma and her mom about our Special Buddies program at Shafer and told them that I would love for Emma to be a part of it next year. She is a perfect example of what Special Buddies is all about. Emma said she would love to be in Special Buddies and that she would love to be John's buddy. Hopefully they will end up in the same homeroom next year. I might have to see what I can do about that. Emma's mom took my phone number and she is supposed to text me a picture of the drawing that Emma made. I can't wait to see it!!!
Friday, May 31, 2013
Never a Dull Moment
I have spoken that phrase many, many times to describe the craziness that is our life. Just when we get into a routine and think things are running smoothly, suddenly they aren't. And it's not usually just one thing. These things tend to happen in groups. There have been many things I've wanted to blog about over the last several weeks, but haven't found either the time or the energy to do so. So I decided to just put it all in one post. So hang on to your hats. Here is a glimpse at what has been going on with us and what to expect in the coming months.
All mom's know that the end of the school year is a complete whirlwind. There's Teacher Appreciation week, end of school parties, award ceremonies and much much more. There is a blog post floating around that adequately explains how hard the end of the year is on moms. If you haven't read it yet, you can do so here. But there was one end of year event that I was looking forward to. It was our Special Buddies party. Being in charge, there was a lot of work that went into organizing and pulling this party together, but with the help of other parents and of course our awesome school counselor, it was so worth it. Throughout the year, teachers and parents took pictures of the kids and their buddies either at other events or in the classroom as they interacted with each other. We took those pictures and compiled a small photo album for each kid. Yes, that was 34 photo albums, plus one for each teacher and for Mr. and Mrs. Shafer, the couple for whom our school is named. This was quite a process of sorting pictures and then putting them in the albums. But I think each kid really liked it. We also had a certificate of participation made for each student that was designed by one of our very talented dads. And each kid got a chance to write a short note to their buddy telling them how happy they were to get to know them this year. And for the grand finale, our counselor made a slide show of many of the pictures and we showed that to everyone there. It was a great party and a great way to say goodbye to our buddies for summer. And let me just say that these kids really bonded with their buddies. The kids chosen to be buddies to our life skills kiddos were fantastic. Not only did they interact with their own buddies, but they interacted with other kids. I have seen pictures of some kids attending parties and hanging out together outside of school. That is what this program is all about. Just because someone isn't like you, doesn't mean you can't be friends with them. I look forward to seeing just what next year will bring with these kids. Here are a few pictures I have with John and his two buddies.
Another event that John and I participated in that was related to Special Buddies was the Cinco Ranch Rotary Camo 5k. No, I did not and probably never will run a 5K. But they also had a 1 mile family walk and that is what we did. Part of the proceeds from this event will go to the Special Buddies programs in Katy. Our school had an incredible turnout of supporters. Most of us participated in the walk, but it was great fun to support this cause together as a school. Here are a few pictures from that event.
The same day as the race, we had John's 8th birthday party. I can't believe my baby is 8. Am I old enough to have an 8 year old? Last year's water party in the backyard was such a huge success, that we decided to do it again. We scaled it back a little, with only one slide instead of two. And instead of Tommy having to spend time cooking burgers and hot dogs, we ordered pizza. I again enlisted "the best neighbor in the whole world" to make the cupcakes, and of course, she didn't disappoint. John and I got to hang out in the pool while the other kids got to play on the slide and the swing set. The weather was cloudy, which was actually perfect for those of us not in the water, but made the pool water a little chilly. I think it was as big of a success as last year. I know we were all worn out when it was over. I realized after that I didn't take one single picture from the party. Fortunately my mom and sister-in-law took a few, so I at least have a few to share.
Yesterday was supposed to be John's Celebration of Learning for 2nd grade. However, John had some tummy trouble this week so he missed school on Tuesday and Thursday and missed his Celebration of Learning.
Our summer is not going to be any more relaxed. We will be very busy through the month of July and into the first week of August. Technically, Wednesday June 5 is the last day of school. It is a half day, but John's last day will be Tuesday. That night he has a sleep study at TCH. I'm not expecting much to come from this sleep study, but it will be interesting to see if he's made any improvement. We won't get home until after 7:00 Wednesday morning and on those days we normally come home, give John a bath to get all of the goo out of his hair, and then he and I usually crash for a couple of hours. The next week is Vacation Bible School. I will be teaching in a 4th grade class and John will be in the Treasure's Department. I will also have Kash and William with me that week. Then the next week will be an interesting one for me.
If you don't know me very well, you might not know that I was born with a heart defect. I had open heart surgery to correct the defect when I was 13 months old, and most of my childhood, I lived a very normal life. As I've gotten older, however, I have begun to develop more issues. Most of them have to do with the electrical side of my heart. Over the last several years, I have been on medication to control some arrhythmia. Over time, the arrhythmia has gotten worse and I have had to take more and more medication to control it. I'm to a point now that I am completely maxed out on the medication I have been taking for the past 3 years, and it's not controlling all of the arrhythmia. My doctor in Houston thought it was time for me to go on a different, heavy duty medication that he is sure will control the arrhythmia, but also can have nasty side effects over time. Some of the things the drug can effect are my liver, lungs, and eyes among other problems. This has always been a possibility, but I've been putting off this drug for a long time. It's kind of a last resort and I wanted to be sure I explored every other option before I went to that drug. So I called up the doctor I had for 13 years, who moved to Ohio 3 years ago. I knew that of any doctor, she knows me best and would be completely honest. If she said this drug was what I needed, then that's what I would have done. But that's not what she said. She thinks there may be a chance that a procedure called an ablation could be a way to get rid of some of the arrhythmia for good. If this works, not only will I not have to go on the nasty drug, but I may be able to get off of some of the drugs I'm currently taking, which could lead to me feeling so much better and having a lot more energy. But the catch is, I have to go to Ohio to do it. So that is what we are going to do. I will leave on June 16 to head to Columbus, Ohio. I will go off of my current meds when I get there. I will see my doctor in clinic one day and she plans to admit me into the hospital on Wednesday of that week. The procedure will take place on Friday, June 21 and if all goes well, I will be able to come home Saturday or Sunday. Tommy is coming with me, so the biggest issue is child care for John. Fortunately, our awesome nanny, Caitlin, has been working for us the past month or so and she has agreed to keep John while we are gone. That will be a big undertaking for her since he won't be in school and she will have to sleep here at night. But if anyone can do it, I know she can.
On July 1, John and I will set out for therapy in Austin. I told you about this in an earlier post. He will be in therapy 3 hours a day, Monday - Friday from July 1 through July 19. We will come home on the weekends, but will be spending 4 nights each week in Austin. I really think this will be very good for him, even though it will be exhausting. I'm sure we will be going to bed early every night and we will be using the weekend to rest up and get ready for the next week. That is going to be a very busy month, but hopefully it will all be worth it in the end.
The last 11 days of July we will spend just hanging out and recuperating from our trip. August 5-9 will be Super Place Camp. This is the 4th year John has been able to attend this camp, and this year it is being held at our church. That will make me much more comfortable having him in a place where we are familiar and with people we know. And I think after that, we are just going to sleep until school starts again. We will need it after everything we will have done.
Please pray for us as we go through these super busy few months. We will all need patience, strength and especially energy. It will be a grueling time, but we will make memories that will last forever. Thank you once again for being our army of support. It means the world to all of us to have your prayers and support.
All mom's know that the end of the school year is a complete whirlwind. There's Teacher Appreciation week, end of school parties, award ceremonies and much much more. There is a blog post floating around that adequately explains how hard the end of the year is on moms. If you haven't read it yet, you can do so here. But there was one end of year event that I was looking forward to. It was our Special Buddies party. Being in charge, there was a lot of work that went into organizing and pulling this party together, but with the help of other parents and of course our awesome school counselor, it was so worth it. Throughout the year, teachers and parents took pictures of the kids and their buddies either at other events or in the classroom as they interacted with each other. We took those pictures and compiled a small photo album for each kid. Yes, that was 34 photo albums, plus one for each teacher and for Mr. and Mrs. Shafer, the couple for whom our school is named. This was quite a process of sorting pictures and then putting them in the albums. But I think each kid really liked it. We also had a certificate of participation made for each student that was designed by one of our very talented dads. And each kid got a chance to write a short note to their buddy telling them how happy they were to get to know them this year. And for the grand finale, our counselor made a slide show of many of the pictures and we showed that to everyone there. It was a great party and a great way to say goodbye to our buddies for summer. And let me just say that these kids really bonded with their buddies. The kids chosen to be buddies to our life skills kiddos were fantastic. Not only did they interact with their own buddies, but they interacted with other kids. I have seen pictures of some kids attending parties and hanging out together outside of school. That is what this program is all about. Just because someone isn't like you, doesn't mean you can't be friends with them. I look forward to seeing just what next year will bring with these kids. Here are a few pictures I have with John and his two buddies.
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| John and Charlie |
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| John and Hannah |
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| Both of his buddies |
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| John and Drew in class |
Another event that John and I participated in that was related to Special Buddies was the Cinco Ranch Rotary Camo 5k. No, I did not and probably never will run a 5K. But they also had a 1 mile family walk and that is what we did. Part of the proceeds from this event will go to the Special Buddies programs in Katy. Our school had an incredible turnout of supporters. Most of us participated in the walk, but it was great fun to support this cause together as a school. Here are a few pictures from that event.
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| Before the race |
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| John with Mr. Shafer |
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| Our Shafer Supporters |
The same day as the race, we had John's 8th birthday party. I can't believe my baby is 8. Am I old enough to have an 8 year old? Last year's water party in the backyard was such a huge success, that we decided to do it again. We scaled it back a little, with only one slide instead of two. And instead of Tommy having to spend time cooking burgers and hot dogs, we ordered pizza. I again enlisted "the best neighbor in the whole world" to make the cupcakes, and of course, she didn't disappoint. John and I got to hang out in the pool while the other kids got to play on the slide and the swing set. The weather was cloudy, which was actually perfect for those of us not in the water, but made the pool water a little chilly. I think it was as big of a success as last year. I know we were all worn out when it was over. I realized after that I didn't take one single picture from the party. Fortunately my mom and sister-in-law took a few, so I at least have a few to share.
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| Fun on the slide |
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| Kash and Reagan |
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| Kash and Reagan |
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| Kids in the pool |
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| John and his buddy Jaden. |
Yesterday was supposed to be John's Celebration of Learning for 2nd grade. However, John had some tummy trouble this week so he missed school on Tuesday and Thursday and missed his Celebration of Learning.
Our summer is not going to be any more relaxed. We will be very busy through the month of July and into the first week of August. Technically, Wednesday June 5 is the last day of school. It is a half day, but John's last day will be Tuesday. That night he has a sleep study at TCH. I'm not expecting much to come from this sleep study, but it will be interesting to see if he's made any improvement. We won't get home until after 7:00 Wednesday morning and on those days we normally come home, give John a bath to get all of the goo out of his hair, and then he and I usually crash for a couple of hours. The next week is Vacation Bible School. I will be teaching in a 4th grade class and John will be in the Treasure's Department. I will also have Kash and William with me that week. Then the next week will be an interesting one for me.
If you don't know me very well, you might not know that I was born with a heart defect. I had open heart surgery to correct the defect when I was 13 months old, and most of my childhood, I lived a very normal life. As I've gotten older, however, I have begun to develop more issues. Most of them have to do with the electrical side of my heart. Over the last several years, I have been on medication to control some arrhythmia. Over time, the arrhythmia has gotten worse and I have had to take more and more medication to control it. I'm to a point now that I am completely maxed out on the medication I have been taking for the past 3 years, and it's not controlling all of the arrhythmia. My doctor in Houston thought it was time for me to go on a different, heavy duty medication that he is sure will control the arrhythmia, but also can have nasty side effects over time. Some of the things the drug can effect are my liver, lungs, and eyes among other problems. This has always been a possibility, but I've been putting off this drug for a long time. It's kind of a last resort and I wanted to be sure I explored every other option before I went to that drug. So I called up the doctor I had for 13 years, who moved to Ohio 3 years ago. I knew that of any doctor, she knows me best and would be completely honest. If she said this drug was what I needed, then that's what I would have done. But that's not what she said. She thinks there may be a chance that a procedure called an ablation could be a way to get rid of some of the arrhythmia for good. If this works, not only will I not have to go on the nasty drug, but I may be able to get off of some of the drugs I'm currently taking, which could lead to me feeling so much better and having a lot more energy. But the catch is, I have to go to Ohio to do it. So that is what we are going to do. I will leave on June 16 to head to Columbus, Ohio. I will go off of my current meds when I get there. I will see my doctor in clinic one day and she plans to admit me into the hospital on Wednesday of that week. The procedure will take place on Friday, June 21 and if all goes well, I will be able to come home Saturday or Sunday. Tommy is coming with me, so the biggest issue is child care for John. Fortunately, our awesome nanny, Caitlin, has been working for us the past month or so and she has agreed to keep John while we are gone. That will be a big undertaking for her since he won't be in school and she will have to sleep here at night. But if anyone can do it, I know she can.
On July 1, John and I will set out for therapy in Austin. I told you about this in an earlier post. He will be in therapy 3 hours a day, Monday - Friday from July 1 through July 19. We will come home on the weekends, but will be spending 4 nights each week in Austin. I really think this will be very good for him, even though it will be exhausting. I'm sure we will be going to bed early every night and we will be using the weekend to rest up and get ready for the next week. That is going to be a very busy month, but hopefully it will all be worth it in the end.
The last 11 days of July we will spend just hanging out and recuperating from our trip. August 5-9 will be Super Place Camp. This is the 4th year John has been able to attend this camp, and this year it is being held at our church. That will make me much more comfortable having him in a place where we are familiar and with people we know. And I think after that, we are just going to sleep until school starts again. We will need it after everything we will have done.
Please pray for us as we go through these super busy few months. We will all need patience, strength and especially energy. It will be a grueling time, but we will make memories that will last forever. Thank you once again for being our army of support. It means the world to all of us to have your prayers and support.
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