Monday, January 30, 2012
Post Op Day 4
Tyler is doing well. They increased his diuretics causing him to be Potassium deficient. We are working on trying to get him to take potassium which is GROSS. We tried it via IV which is painful, tried a feeding tube which Tyler was less than stoked about, so we are just trying to have him gulp it down. That will help keep arrhythmias away. They split his chest tubes to see if they could possibly take one out which would help with his pain. He tried walking today and took a couple of steps but was in a lot of pain. The goal is to get him to drain some fluid to eventually get chest tubes out, start walking a little, get his potassium levels up, get him to eat a little more. His arrhythmias have normalized. They put his pacer to 110, so his heart is beating on its own in a normal sinus rhythm which is great. Thanks for all the prayers, calls and well wishes. We are so grateful to have such great family and friends who support us to make this journey an easier one. Danny and I couldn't do this alone. We are truly blessed!
Scott's birthday
Scott turned six on Saturday. I was worried that because Heidi and I were in the hospital that he would have a lousy day. It turns out he had a fabulous day!
Cake at Pop and Grandma's
Some cool gifts
Flying his 4 channel coax helicopter
Thanks, Heather and Jason!
Kira just being cute
Roman and Jason having cake
Pop's Mario cake
Thanks for watching the kiddos!
It was a good birthday. Turns out that one of his friends also had a birthday on Saturday and had a huge party at Pump It Up, a gallery with inflatable toys. After that, we had taco's at Pop's and played Wii. Scott wasn't too pleased that I knew how to do Mario Kart. Thanks to my training at the racetrack with Miles, I know how to swing wide, then cut sharp.
Sunday, January 29, 2012
Medical Review
Overall, I think everyone is happy with how Tyler is doing.
Cardiac wise, he is going in and out of junction and sinus rhythm which is normal for a post Fontan and should correct itself. He wants to be in sinus rhythm which helps his heart function and sats. When he goes into Junction rhythm, his sats drop to the high 60's low 70's which isn't great and he gets tachycardia. They have been trying to control when he gets paced but it often competes with his normal heart rhythm. None of this is a major concern. Just a lot of tweaking and tying to figure out why he is desatting.
His effusion seems bad and then he dumps a lot of fluid. They have increased his diuretics to a moderate level and could continue to increase if and when needed to get rid of fluid. His left side has been clear, which is great because he doesn't have a tube on his left. His right side has been the concern. They get x-rays to determine if a pigtail chest tube is needed, but so far so good. Yeah!! Hopefully Tyler will be able to get up a little today and that should help with his effusion.
He doesn't have great access right now. His IV's fail very easily. The IV nurse said his veins are very superficial and wants to ultrasound to find a deeper vein. His art line failed, so his only central line is his femoral line, which is at high risk for infection, so ideally they would like to pull it and have a pic-line. The IV nurse hasn't been here over the weekend and while doctors can place pic lines and art lines, the IV is so fast and efficient which would be great. So Tyler will probably go NPO again late tonight so they can get that placed. The attending gave him some good doses of morphine last night to place an art line, but he has this weird scarring from a past pic-line that was preventing it from being threaded, so we stopped and are trying to wait.
The morphine actually was a really good break for Tyler. He slept for a long time and woke up refreshed and wanting to eat. It was the first time he actually wanted to eat and watch a movie. We watched spongebob and scooby doo and were down for bed around 8:30. Soo nice!! Tyler had a good night. He only woke up when we needed to mess with him for one thing or another. We tried to move him a couple of times for him to drain fluid and it seemed to work.
He has been fighting a low-grade fever. They placed him on Tylenol every four hour, got some fans going, added two precautionary antibiotics in case of infection and sent off a culture that should come back in 48 hours to determine if he has an infection. So far that has done the job. Taking out the femoral line will decrease chances of infection which should be good.
He started doing this weird breathing thing last night. He would say it was hard to breathe. It is hard to tell if it is because of his effusion, his chest hurting or feeling different from how his heart is now set up.
Sooo that's the medical update in a nutshell. He is stable. We recognize that to be a miracle in itself especially after the slight emergency in the OR. We are so grateful for the wonderful nurses and doctors!
Emotionally, Tyler is doing much better than I thought. He is pretty calm. He was so cute on the phone yesterday talking to Scott. His voice is still very faint and yet he told his brother happy birthday and he loved him. He is doing a great job communicating his needs. Danny gave him a blessing that he would be able to communicate his needs, even if its just for a drink and let me tell you, that has been his biggest request. It is hard to be on a a high dose diuretic and have fluid restrictions or NPO. He is usually understanding and cooperative but every once in a while will tell a nurse something like, "You are mean," or "I am not giving you a trophy."
That's all for now!
Cardiac wise, he is going in and out of junction and sinus rhythm which is normal for a post Fontan and should correct itself. He wants to be in sinus rhythm which helps his heart function and sats. When he goes into Junction rhythm, his sats drop to the high 60's low 70's which isn't great and he gets tachycardia. They have been trying to control when he gets paced but it often competes with his normal heart rhythm. None of this is a major concern. Just a lot of tweaking and tying to figure out why he is desatting.
His effusion seems bad and then he dumps a lot of fluid. They have increased his diuretics to a moderate level and could continue to increase if and when needed to get rid of fluid. His left side has been clear, which is great because he doesn't have a tube on his left. His right side has been the concern. They get x-rays to determine if a pigtail chest tube is needed, but so far so good. Yeah!! Hopefully Tyler will be able to get up a little today and that should help with his effusion.
He doesn't have great access right now. His IV's fail very easily. The IV nurse said his veins are very superficial and wants to ultrasound to find a deeper vein. His art line failed, so his only central line is his femoral line, which is at high risk for infection, so ideally they would like to pull it and have a pic-line. The IV nurse hasn't been here over the weekend and while doctors can place pic lines and art lines, the IV is so fast and efficient which would be great. So Tyler will probably go NPO again late tonight so they can get that placed. The attending gave him some good doses of morphine last night to place an art line, but he has this weird scarring from a past pic-line that was preventing it from being threaded, so we stopped and are trying to wait.
The morphine actually was a really good break for Tyler. He slept for a long time and woke up refreshed and wanting to eat. It was the first time he actually wanted to eat and watch a movie. We watched spongebob and scooby doo and were down for bed around 8:30. Soo nice!! Tyler had a good night. He only woke up when we needed to mess with him for one thing or another. We tried to move him a couple of times for him to drain fluid and it seemed to work.
He has been fighting a low-grade fever. They placed him on Tylenol every four hour, got some fans going, added two precautionary antibiotics in case of infection and sent off a culture that should come back in 48 hours to determine if he has an infection. So far that has done the job. Taking out the femoral line will decrease chances of infection which should be good.
He started doing this weird breathing thing last night. He would say it was hard to breathe. It is hard to tell if it is because of his effusion, his chest hurting or feeling different from how his heart is now set up.
Sooo that's the medical update in a nutshell. He is stable. We recognize that to be a miracle in itself especially after the slight emergency in the OR. We are so grateful for the wonderful nurses and doctors!
Emotionally, Tyler is doing much better than I thought. He is pretty calm. He was so cute on the phone yesterday talking to Scott. His voice is still very faint and yet he told his brother happy birthday and he loved him. He is doing a great job communicating his needs. Danny gave him a blessing that he would be able to communicate his needs, even if its just for a drink and let me tell you, that has been his biggest request. It is hard to be on a a high dose diuretic and have fluid restrictions or NPO. He is usually understanding and cooperative but every once in a while will tell a nurse something like, "You are mean," or "I am not giving you a trophy."
That's all for now!
Some pics from my big camera
Tyler stayed in 7 North Wednesday and Thursday
Tyler was happy about winning this whistling nerf ball at bingo
Eric, one of Tyler's nurses from the Norwood in 2007.
Hanging out in the playroom on the 6th floor
Right after surgery
In a fair amount of pain. Heidi consoles him.
A decent amount of wires and tubes, but there are patients with triple.
A decent amount of wires and tubes, but there are patients with triple.
On Saturday, he had some stuff removed, like that somanetics forehead monitor, his art line, his foley catheter, and IVs from his hands.
Check out that neck dressing.
Today is Sunday. Tyler had a good Saturday and good Saturday night. They were worried about an effusion on his right side since Tony hadn't put in a third drain. A chest x-ray confirmed the presence of an effusion, but once they changed Tyler's position, tons of fluid drained out and they don't think another drain tube will be necessary.
When I showed up this morning, Tyler greeted me and said he was doing "good." They hope to get him bipedal today.
Saturday, January 28, 2012
Soda
Tyler was finally able to get some fluids. His lactate continued to rise, despite the decrease in blood sugar from the insulin infusion. Jeff, the nurse, and I decided that the one to correctly guess the lactate levels would get to give Tyler a popsicle.
Well, we were all wrong because the numbers were way high. Then, Jeff, the attending who understands that medicine involves the occasional obtuse solution, said, "These are just numbers. Look at him. He's doing fine. He's probably dried out, I mean, look at his CVP--it's four. Give him some fluids." So Tyler got to drink and his numbers improved. Then he got a popsicle which made him happy, and then the old Tyler was back: "I don't WANT ORANGE! I WANT A BLUE POPSICLE!"
At about midnight, Heidi recommended I go to sleep. The nurse was going to stop his fentanyl drip and just give him morphine prn, which should help him sleep. I turned the chair into a bed and closed my eyes. Heidi went to sleep in some women-only bunk bed room. Tyler was up pretty regularly, asking for soda, until about 3:30 this morning. His art line failed and they had to get blood from his finger, but it's all kind of a haze now.
The nurses' shift change is at seven, so when they started discussing Tyler, one of them said, "It was a rough night." I sat up in my bed to listen, and they saw me and closed the door. So I stood up and opened the door to listen. It's interesting how they talk differently when the parents are around. Still, they were discussing the case and said that Tyler had to be defibrillated five times in the OR. Why didn't they tell us that yesterday? They probably worry that we'd worry.
I'm tired. Tyler is in pain when he's awake. It is too early to say we're out of the woods. He has some leads connected to an extra-corporeal pacemaker that occasionally has to fire. Right now, every beat is regulated by the pacemaker. No one can say for sure whether the junctional rhythm will turn back into sinus rhythm. If not, they can install a subcutaneous pacemaker, but we'll see.
Thanks for your comments on the blog and facebook. People want to know how to help. Your prayers help, and Heidi could use some company at the hospital (even though she'll never ask for it). I'm going home today because it's Scott's birthday and I want to spend some time with him.
Well, we were all wrong because the numbers were way high. Then, Jeff, the attending who understands that medicine involves the occasional obtuse solution, said, "These are just numbers. Look at him. He's doing fine. He's probably dried out, I mean, look at his CVP--it's four. Give him some fluids." So Tyler got to drink and his numbers improved. Then he got a popsicle which made him happy, and then the old Tyler was back: "I don't WANT ORANGE! I WANT A BLUE POPSICLE!"
At about midnight, Heidi recommended I go to sleep. The nurse was going to stop his fentanyl drip and just give him morphine prn, which should help him sleep. I turned the chair into a bed and closed my eyes. Heidi went to sleep in some women-only bunk bed room. Tyler was up pretty regularly, asking for soda, until about 3:30 this morning. His art line failed and they had to get blood from his finger, but it's all kind of a haze now.
The nurses' shift change is at seven, so when they started discussing Tyler, one of them said, "It was a rough night." I sat up in my bed to listen, and they saw me and closed the door. So I stood up and opened the door to listen. It's interesting how they talk differently when the parents are around. Still, they were discussing the case and said that Tyler had to be defibrillated five times in the OR. Why didn't they tell us that yesterday? They probably worry that we'd worry.
I'm tired. Tyler is in pain when he's awake. It is too early to say we're out of the woods. He has some leads connected to an extra-corporeal pacemaker that occasionally has to fire. Right now, every beat is regulated by the pacemaker. No one can say for sure whether the junctional rhythm will turn back into sinus rhythm. If not, they can install a subcutaneous pacemaker, but we'll see.
Thanks for your comments on the blog and facebook. People want to know how to help. Your prayers help, and Heidi could use some company at the hospital (even though she'll never ask for it). I'm going home today because it's Scott's birthday and I want to spend some time with him.
Friday, January 27, 2012
Ice chips and hot chocolate
Tyler has been fussy for the past five hours. All he wanted was water. The nurses didn't want to give him any fluids because it would stress his heart. The nurses and doctors listened to him moan--he'd plead with them, saying, "Pleeeeeeeeeeeeeease, can I have some wa wa?"
I put in my ear plugs, and when I had had enough, I approached the nurse and doctor and said, "He's stressed because he's thirsty. You gotta intervene."
They were also concerned at Tyler's rising lactate levels, a sign of stress. Sometimes, the lactate is high because of increased blood glucose and administering some insulin can lower it. However, sometimes the lactate is high because the heart is under duress, in which case insulin would be ineffective and they'd have to intubate him.
I said, "I know what the books say. What does your gut say?" Tyler cried for ice chips and hot chocolate for several hours. Finally, one of the physicians said, "Give him some ice chips." Immediately, he calmed down and fell asleep. He sleeps for like one minute, then wakes up and asks for more ice chips. He's been sleeping for the past two or three minutes, so we might go to the cafe and get some din-din.
Oh, he just woke up.
I put in my ear plugs, and when I had had enough, I approached the nurse and doctor and said, "He's stressed because he's thirsty. You gotta intervene."
They were also concerned at Tyler's rising lactate levels, a sign of stress. Sometimes, the lactate is high because of increased blood glucose and administering some insulin can lower it. However, sometimes the lactate is high because the heart is under duress, in which case insulin would be ineffective and they'd have to intubate him.
I said, "I know what the books say. What does your gut say?" Tyler cried for ice chips and hot chocolate for several hours. Finally, one of the physicians said, "Give him some ice chips." Immediately, he calmed down and fell asleep. He sleeps for like one minute, then wakes up and asks for more ice chips. He's been sleeping for the past two or three minutes, so we might go to the cafe and get some din-din.
Oh, he just woke up.
Fontan
Tyler presented to the OR at seven this morning. They gave him some oral versed and then Heidi and I took a stroll through golden gate park. The team had anticipated a 4-6 hour surgery. At 3:00 Heidi and I started getting nervous. They said they would call to update us on the surgery, but no. finally, we saw Tyler's bed rolling down the hall.
Tony came to talk to us and began speaking to me in Spanish. Then, he told us that the surgery went well and said, "He went under great. Then there was a problem. When I opened the sternum, his heart was fused to the bone. So I started to dissect it and it started to bleed. I put him on bypass and had to cannulate him through his neck....His valve regurgitation was on the lower end of mild, and I thought that was really good, considering that several months ago he had moderate... His heart function looked good. The Fontan pressures were about eight when he first came off, now they're about thirteen (anything below 15 is good). His rhythm was normal sinus for I'd say 95% of the time. And then he started waking up, he developed a junctional rhythm, I don't think that's terribly unusual, the fact that he had sinus rhythm is a good sign...The valve is better than it was several months ago...we put in a 20 mm gore tex tube...his pulmonary arteries look pretty good...short of the adherence of the heart to the back of the sternum,"
Heidi: Is that common?
Tony: You know, the number of times I've had to cannulate a neck, because the heart was stuck to the sternum (pause),
Danny: You can count on one hand?
Tony: Yeah, yeah.
Heidi: So why did that happen?
Tony: It's just the previous operations, and the conduit, and the scarring, it's just, the heart, it was fused to the bone. And I didn't peel the heart off the bone, what I had to do is take a chunk of bone off the chest wall...One of the worries is when you're dissecting the heart off the sternum, and you get into it, is that air can enter and...be ejected into the brain...but we controlled it, dissected everything, put him on bypass...supported his circulation, and everything was under perfect control, dissected everything out, fixed the hole, did the Fontan, took him off, close this, close that. He's extubated.
Tony, Heidi and I went in to see Tyler and he was agitated. I knew he was doing well when he started trying to rip off his nasal cannula. The nurses were worried, though. They kept wanting to give him drugs and I was like, "He wants a drink. Give the man some water." The nurses didn't want to, though. Then Jeff came in and said, "Better the water than Versed and Fentanyl."
I agreed with that. After one of the nurses left, Jeff said, "Let's lower his prn infusions."
That's all I feel like posting for now. They aren't totally stoked about how stable he is, but I think he is stable because he's complaining, just like before. He's like, "Mommy! GET ME A DRINK RIGHT NOW!" Eh, anyway.
Thanks for the texts and stuff. I don't feel like entertaining any phone conversations right now, though.
Tony came to talk to us and began speaking to me in Spanish. Then, he told us that the surgery went well and said, "He went under great. Then there was a problem. When I opened the sternum, his heart was fused to the bone. So I started to dissect it and it started to bleed. I put him on bypass and had to cannulate him through his neck....His valve regurgitation was on the lower end of mild, and I thought that was really good, considering that several months ago he had moderate... His heart function looked good. The Fontan pressures were about eight when he first came off, now they're about thirteen (anything below 15 is good). His rhythm was normal sinus for I'd say 95% of the time. And then he started waking up, he developed a junctional rhythm, I don't think that's terribly unusual, the fact that he had sinus rhythm is a good sign...The valve is better than it was several months ago...we put in a 20 mm gore tex tube...his pulmonary arteries look pretty good...short of the adherence of the heart to the back of the sternum,"
Heidi: Is that common?
Tony: You know, the number of times I've had to cannulate a neck, because the heart was stuck to the sternum (pause),
Danny: You can count on one hand?
Tony: Yeah, yeah.
Heidi: So why did that happen?
Tony: It's just the previous operations, and the conduit, and the scarring, it's just, the heart, it was fused to the bone. And I didn't peel the heart off the bone, what I had to do is take a chunk of bone off the chest wall...One of the worries is when you're dissecting the heart off the sternum, and you get into it, is that air can enter and...be ejected into the brain...but we controlled it, dissected everything, put him on bypass...supported his circulation, and everything was under perfect control, dissected everything out, fixed the hole, did the Fontan, took him off, close this, close that. He's extubated.
Tony, Heidi and I went in to see Tyler and he was agitated. I knew he was doing well when he started trying to rip off his nasal cannula. The nurses were worried, though. They kept wanting to give him drugs and I was like, "He wants a drink. Give the man some water." The nurses didn't want to, though. Then Jeff came in and said, "Better the water than Versed and Fentanyl."
I agreed with that. After one of the nurses left, Jeff said, "Let's lower his prn infusions."
That's all I feel like posting for now. They aren't totally stoked about how stable he is, but I think he is stable because he's complaining, just like before. He's like, "Mommy! GET ME A DRINK RIGHT NOW!" Eh, anyway.
Thanks for the texts and stuff. I don't feel like entertaining any phone conversations right now, though.
Thursday, January 26, 2012
Day two
Tyler had a pretty good day. He sat patiently for an echo and Tony was pleased with his AV valve, saying that the meds must have really helped. That, or the hand of the Lord is evident. Heidi called me at school and said that Tony promised that the surgery would happen. I said, "He promised?" And Heidi said, "He said he would do everything in his power to make the surgery happen."
Several of you have asked if the surgery is on for sure. Medicine is not like the Honda motorcycle factory in Japan, where they assemble one bike every 3600 seconds. Rather, medicine deals with human beings and each case is different. In a hospital setting, emergency cases may present higher priority and they may bump Tyler. You must understand that doctors make decisions based on what they feel is best for the patient with the knowledge they have at the moment.
Tyler is currently the first case, so as far as we know, he'll present to the OR tomorrow at 7:00 Pacific time.
Many people have called to wish Tyler well and say that they will pray for him. We appreciate that. Today, I was talking with some people about Tyler's diagnosis and they said they were sorry. I said, "We feel fortunate to have him in our lives. They encouraged us to abort him and we've had four good years with him."
Somebody else said, "I was feeling sorry for myself because of this and that, and then I thought of you guys and what you're going through. Suddenly, my life doesn't seem so hard." And I said, "We have a good life. We have been through some hard times but we are happy." Heidi and I are pretty much at peace with the diagnosis of the condo, realizing that it's just money. We are at peace with Tyler's surgery. A big component of our peace is that we realize that God has power over the outcome of this surgery and we recognize the big picture. Now I'm going to brush my teeth and floss and try to sleep on the hide-a-bed in 6 long.
Several of you have asked if the surgery is on for sure. Medicine is not like the Honda motorcycle factory in Japan, where they assemble one bike every 3600 seconds. Rather, medicine deals with human beings and each case is different. In a hospital setting, emergency cases may present higher priority and they may bump Tyler. You must understand that doctors make decisions based on what they feel is best for the patient with the knowledge they have at the moment.
Tyler is currently the first case, so as far as we know, he'll present to the OR tomorrow at 7:00 Pacific time.
Many people have called to wish Tyler well and say that they will pray for him. We appreciate that. Today, I was talking with some people about Tyler's diagnosis and they said they were sorry. I said, "We feel fortunate to have him in our lives. They encouraged us to abort him and we've had four good years with him."
Somebody else said, "I was feeling sorry for myself because of this and that, and then I thought of you guys and what you're going through. Suddenly, my life doesn't seem so hard." And I said, "We have a good life. We have been through some hard times but we are happy." Heidi and I are pretty much at peace with the diagnosis of the condo, realizing that it's just money. We are at peace with Tyler's surgery. A big component of our peace is that we realize that God has power over the outcome of this surgery and we recognize the big picture. Now I'm going to brush my teeth and floss and try to sleep on the hide-a-bed in 6 long.
He's in!
Tyler went to UCSF yesterday and got connected to milrinone. I rode the VFR to SF after work and Tyler was in good spirits. He even offered me a cookie. Heidi slept in a chair-bed alongside Tyler and I got a hide-a-bed in 6-long. The person to my right was snoring pretty loudly and occasionally cried out, and there was a big diesel truck that seemed to run all night, but I slept well from 5-6.
We are still programmed for surgery tomorrow, so cross your fingers! Thanks for your prayers.
We are still programmed for surgery tomorrow, so cross your fingers! Thanks for your prayers.
Saturday, January 21, 2012
Diapers and Lasix
Heart moms....I just read on someones blog that insurance is covering her sons diapers after age 3 since he is on LASIX. Wish I knew that sooner. Hope it helps.
Friday, January 13, 2012
2012...Here We Come
First, I can't believe it is 2012....CRAZY!! Life gets busier and times goes faster. I remember when a summer seemed like FOREVER and now it seems like a short little break.
There are so many things that I need to work on and want to do.
Keeping the house clean and uncluttered. I like throwing things away which I am proud of. Plan and prepare meals. Why isn't that as easy as it seems? Excercise....haven't done that in about 6 years and it is a resolution every year. Work on my book. Family History. Be patient. Make my baby a napper. Quality one on one time with my hubby and the kids. That sounds good for now.
Feeling MUCH better since my anxiety weeks! Whew. Soooo Sooo Grateful. We all have our various trials in life. I just couldn't live with that.
There are so many things that I need to work on and want to do.
Keeping the house clean and uncluttered. I like throwing things away which I am proud of. Plan and prepare meals. Why isn't that as easy as it seems? Excercise....haven't done that in about 6 years and it is a resolution every year. Work on my book. Family History. Be patient. Make my baby a napper. Quality one on one time with my hubby and the kids. That sounds good for now.
Feeling MUCH better since my anxiety weeks! Whew. Soooo Sooo Grateful. We all have our various trials in life. I just couldn't live with that.
Thursday, January 12, 2012
Anxiety
Have you ever had anxiety? Full blown anxiety--the type that you are worried over things that is simply irrational to worry about. Or maybe rational, but way out of hand. Logically they will all work out, there are solutions, they aren't that big of a deal to spend your day worrying, but you just can't stop your body's emotions and you aren't functioning like a normal human being because of it. You are emotionally and physically affected. It is the craziest thing. I am usually a pretty happy, optimistic, life will be alright kind of person. Don't get me wrong, I have worries and bad moments but they are usually not that big of a deal. Well, I was not my normal self these past two to three weeks. They were HORRIBLE. I had anxiety.
Have you watched the Bachelor? Due to totally different reasons I became one of those girls. Not the nice, drama- free ones I like. I was the couldn't stop crying over nothing, one of the crazy ones. A sad, sad sight.
I was tired and couldn't focus on anything but my worries. I wanted to avoid everything, sleep and yet I had to take care of children. I would periodically say to myself, "Am I going to make it though," and respond, "yes, I will."
I recognize it was a blessing that I don't usually feel this way. I gained some major empathy for others who deal with anxiety and depression. In my opinion emotional illness is far worse than physical. And I know my two to three week experience and probably level of anxiety was nothing and short lived compared to many.
My mom has had ups and downs with the emotions of cancer and chemo which is totally understandable. I was having a hard time relating. I would tell her to just try to be happy, the chemo seems to be working, make the most of the day, etc etc. It wasn't working. I am obviously no therapist. So you guessed it, I prayed that I would know how to help her and WHAM! I experienced a taste of what it is like to not just wake up and be happy and or be optimistic in the moments you are not happy.
Emotionally my mom is doing much better. Somethings, especially things as big as dealing with a super rare cancer that nobody really knows how to treat, going through surgery and chemo warrants some anxiety....it warrants a lot of anxiety, right? Luckily, time, starting treatment and some good results have helped and she is doing so much better. Such an example of how you can be positive amidst hard times. Someone who reminds me what life is really all about.
So, here is the thing you can laugh about that makes no rational sense. I could understand being worried about Tyler's upcoming surgery, Danny's chronic pain from surgery, the unborn babe being healthy, the pain my kidneys have been causing me lately. But no, I was worried about expenses. Now a therapist could very well say that was the manifestation of my anxiety and it was a combination of everything. Who knows, but all that really seemed to be stressing me was expenses.
One expense after another consumed me. Large bills like Danny's surgery, Tyler's hospital stays, Tylers upcoming surgery, Danny being out of work, condo flooding, an accident, baby delivery expenses. Dropping a brand new bottle of lasix that broke was a big stress, instead of a darn it moment. Almost too much for me to handle. Or Scott's bike being run over by probably some kids playing a trick. It seemed like one thing after another and I just couldn't deal with it.
Amidst it all, I rationally knew we could deal with it and that it could be far worse. Danny has a job. That is a HUGE Blessing. Danny said about the condo, "It's just money. No one has died as a result of this problem, we haven't done anything illegal or made any moral compromises." Looking back, I almost feel bad writing this because I recognize there are so many that would trade their financial hardships for ours in a minute. Rationally, I realized that instead of being
upset and frustrated and worried about these things, I should instead realize
that we are so very blessed.
But it wasn't that simple. My head was telling me one thing and my emotions were doing another. That is the strange thing about anxiety. It is almost as if it takes over.
The Lord placed people in my path to remind me of my many blessings. A friend reminded me that they are living week to week with the goal to afford to send her kids to EFY. Another whose husband is leaving her after they had their fourth girl. Another who is loosing their home. Another who lost everything financially due to an accident. Another who lost everything due to a mistake at work. There are countless people that I think of that would do anything for a job, let alone a job that they love like Danny. That would do anything to be home with their kids. That would do anything to know where their next meal is coming from or how they are going to get the money to pay for something. And yet I am worried about unexpected expenses that we can afford.
The largest worry was our condo flood. We were getting thousands of dollars of estimates from the two units below us that seemed unreal for an overflowing toilet that was resolved in about an hour. Estimates including doing 24 hour STAT water testing costing $1000, not to mention other similar costs-- Who does that? Maybe people whose insurance will cover it. Things that I feel would have been dealt with way differently since it was the homeowners expense. I didn't have control over decisions being made or what was being done and I felt helpless. On top of that, a second flood happened as a result of either the plumber or restoration company changing the positioning of a vent. So we got a call the next day stating there was another flood. Of course, nobody has yet to own up to it and I wasn't there supervising, and I told the person who authorized it that I was not comfortable with that. He said he will "deal with it," but he didn't deal with it. I received no help. I was told to contact them. They were not supervised by him even though he said he would be over it.
I knew it was irrational, but I just couldn't stop worrying about it.
But it wasn't that simple. My head was telling me one thing and my emotions were doing another. That is the strange thing about anxiety. It is almost as if it takes over.
The Lord placed people in my path to remind me of my many blessings. A friend reminded me that they are living week to week with the goal to afford to send her kids to EFY. Another whose husband is leaving her after they had their fourth girl. Another who is loosing their home. Another who lost everything financially due to an accident. Another who lost everything due to a mistake at work. There are countless people that I think of that would do anything for a job, let alone a job that they love like Danny. That would do anything to be home with their kids. That would do anything to know where their next meal is coming from or how they are going to get the money to pay for something. And yet I am worried about unexpected expenses that we can afford.
The largest worry was our condo flood. We were getting thousands of dollars of estimates from the two units below us that seemed unreal for an overflowing toilet that was resolved in about an hour. Estimates including doing 24 hour STAT water testing costing $1000, not to mention other similar costs-- Who does that? Maybe people whose insurance will cover it. Things that I feel would have been dealt with way differently since it was the homeowners expense. I didn't have control over decisions being made or what was being done and I felt helpless. On top of that, a second flood happened as a result of either the plumber or restoration company changing the positioning of a vent. So we got a call the next day stating there was another flood. Of course, nobody has yet to own up to it and I wasn't there supervising, and I told the person who authorized it that I was not comfortable with that. He said he will "deal with it," but he didn't deal with it. I received no help. I was told to contact them. They were not supervised by him even though he said he would be over it.
I knew it was irrational, but I just couldn't stop worrying about it.
So I got up, unable to sleep after only a
couple of hours of sleep and read an ensign article. It reminded us that we are commanded to be grateful, that our Heavenly Father wants us to be
grateful. It had you list the following things you are grateful for which are below. It was so helpful.
It reminded me that one of the greatest therapies for me is writing. That is why I have this blog. If I was a private person it would be a journal. I don't think anyone reads these posts, but there is something about writing and putting it out to the world to see that helps me.
And I started realizing I needed to get back to the book that I am in the very slow process of writing. It is always in the back of my thoughts, a nudge that it is something I need to do, probably more for me than anyone else. My dad started a cancer related bible study and I recognized the need for aids to help people trying to walk with Christ through their own illness or the illness of another. How processing ideas and thoughts on paper can help.
So I started to do that. It felt so good. Words just come.
I placed my worries into the Lords hands. I recognized He could deal with it so much better than me. He could make things right. When I did that, little by little, things started falling into place. Resolutions occured. I knew that He was over all.
But perhaps the best part of all is that I got my sanity back. My anxiety disappeared that was a miracle in itself and I learned a couple of life lessons along the way.
Danny told me at some point that you just need to collect all the facts and than deal with the situation instead of trying to deal with half the facts or a couple pieces of the puzzle. I became better at that. I became better at just picking up the phone and trying to collect the facts instead of avoiding things.
I learned that there are people that are willing to help. To remain calm and happy. Nobody wants nor deserves to deal with a frustrated person. They are much more willing to help someone who is Christlike. I called several people for advice and know that they were answers to prayers.
It reminded me that one of the greatest therapies for me is writing. That is why I have this blog. If I was a private person it would be a journal. I don't think anyone reads these posts, but there is something about writing and putting it out to the world to see that helps me.
And I started realizing I needed to get back to the book that I am in the very slow process of writing. It is always in the back of my thoughts, a nudge that it is something I need to do, probably more for me than anyone else. My dad started a cancer related bible study and I recognized the need for aids to help people trying to walk with Christ through their own illness or the illness of another. How processing ideas and thoughts on paper can help.
So I started to do that. It felt so good. Words just come.
I placed my worries into the Lords hands. I recognized He could deal with it so much better than me. He could make things right. When I did that, little by little, things started falling into place. Resolutions occured. I knew that He was over all.
But perhaps the best part of all is that I got my sanity back. My anxiety disappeared that was a miracle in itself and I learned a couple of life lessons along the way.
Danny told me at some point that you just need to collect all the facts and than deal with the situation instead of trying to deal with half the facts or a couple pieces of the puzzle. I became better at that. I became better at just picking up the phone and trying to collect the facts instead of avoiding things.
I learned that there are people that are willing to help. To remain calm and happy. Nobody wants nor deserves to deal with a frustrated person. They are much more willing to help someone who is Christlike. I called several people for advice and know that they were answers to prayers.
And one afternoon, my anxiety went away. So farewell anxiety. While I want to thank you for the life lessons I have learned along the way, please don't come back. I thank you for helping me understand you a little bit more. Thank you for helping me recognize my many blessings. Thank you for helping me recognize that worrying really does no good. Thank you for allowing me to see how the Lord is really over all and can deal with our dilemas much better than we can.
Write 10 physical
abilities you are grateful for.
1.
I am grateful I am
alive. Carl and Tyler are constant
reminders to me that my body was made whole.
I have a whole brain to function.
I have a whole heart to oxygenate my body. I know all too well what a blessing it is to
have functioning organs.
2.
I am grateful that I
can breathe. Tyler has a really hard
time breathing. His heart makes him feel
sick and exhausted. He tries to keep up
with his brother and friends and simply can’t.
He teaches me to be grateful. My
grandma dies of emphysemia and knew all too well how the simple act of taking a
breathe sometimes doesn’t give you the oxygen you need.
3.
I am grateful I can
have children. I know that there are
many who yearn and pray for a child. That can’t afford or haven’t been chosen
by birthparents yet to have a child. I
have children so easily. It is something
that I recognize is a blessing.
4.
I am grateful that I
can walk and exist without chronic pain.
Danny has back pain everyday. Janelle
and Jenny live in arthritis pain everyday.
My body functions without pain.
5.
I am grateful I can
see. Kira just walked over to me with a
huge smile on her face and it made me feel so good. Some never get to experience that.
6.
While it would be nice
for peace and quiet at times, I am grateful that I can hear. I get to hear my husbands and sons piano, I
get to hear funny conversations and things they say in the back of the
car. I get to communicate with anyone
that I want. That is something that many
don’t have.
7.
I am grateful I can
think. We visited the Alzheimer unit
this week. It realized what a blessing it
is to know who I am, remember my relationships, communicate with my family and
friends. Have the abilities to not only
take care of myself, but my family as well.
8.
I am grateful I am
cancer free. My mom is currently
fighting cancer and Bob is currently cancer free after extensive chemo. My body isn’t being attacked by this silent
disease. So many are not that fortunate.
9.
I am grateful for my
teeth. I don’t have teeth without
problems, but I have them. I can chew
what I want. I live without tooth pain. What a blessing. What a blessing my husband can fix my teeth.
1 I am grateful I don’t
get headaches. I got migraines in the
beginning of my pregnancy and couldn’t function. Some people get migraines everyday.
1 I am grateful for
trials…amidst this trial I know that it is molding me into the individual I
need to become. At times I think life
would be so much easier if we didn’t go through this or that but at the end of
trial, realize the growth that occurred and blessings that followed. I wouldn’t reach my Heavenly Father or be
with my family without these hard times.
They help me recognize the good times.
They help humble me. Rely on the
Lord. They help me treat others with
more compassion and empathy.
Write 10 material
possessions you are grateful for.
1.
My wedding ring. It belongs to my grandma who is one of my
heros. It symbolizes a wonderful marriage to my best friend that I
am eternally grateful for. That is a blessing.
A wedding ring doesn’t symbolize this for all. For some it is a symbol of pain, others
abuse, others heartache, others shame.
Perhaps this is the greatest possession I have. And it would be the greatest even it was made
out of twigs or plastic.
2.
My scriptures. They bring me peace. They help me see how I have progressed or
need to progress. They bring back
feelings from my conversion and mission.
They help me communicate with God and draw closer to him.
3.
The house we live
in. I love it! It is in a wonderful community full of
kids. It is the perfect size for our
family. It keeps us warm at night. It is a place to build memories.
4.
Swagger Wagon.
Love it! Can truck as many kids
around as I need. It used to be hard for
me to help friends when in need because I had no room in my car. What a blessing to fit everyone I need and
for my kids to have time with their friends!
I can visit people easily.
5.
Bikes and RC cars = quality family time!
6.
Appliances = simpler life.
7.
Mobile Phone from the ice-age. I can communicate with family and friends
with a touch of the button.
8.
Blog Book, Pictures and Journal. It helps me remember wonderful memories,
lessons learned and gain perspective.
9.
Our Christmas tree. It brings me peace and happiness. It has a couple of ornaments that were mostly
hand-made this year. It has lights. Scott chose it and it is beautiful!
1 My bed. It fits all of
our kids (I don’t know if that is a good or bad thing yet). I love everything about it.
Write 10 living
people you are grateful for.
1. Mom and Dad. They have always lived for their family and
taught us the important things in life.
They love being grandparents and have always been the most generous and
giving people I know.
2. Glen and
Janine. They raised a wonderful
son. They always focused on the
important things in life and are great parents and grandparents.
3. Scott.
He is such a good boy….just wants to be good. He takes care of his sister, has compassion
for his brother and is such a great friend.
He often comes home telling me how he helped a friend.
4. Tyler.
He is full of spunk and life.
Unlike his brother, obedient, isn’t his middle name yet but that is
ok. He talks to Kira in the sweetest
little voice. Anyone who meets him just
loves him. We love him for the life
lessons he teaches us and mission he so patiently and valiantly fights with his
heart.
5. Carl. My Christmas angel. I feel him close by. Some of the moments I have with him are the
most sacred, faith building times that I cherish and hold close to my
heart. I am so grateful to have a child,
who I envision as a young adult in the next life ministering to people here on
earth and in the spirit world. I love
him and look forward to meeting this angel that was too perfect to dwell on
earth. What a humbling blessing to be
chosen as his mom. How I want to do
everything I can to oneday return and be with him.
6. Kira. Our little girl. She is such a girl loving and nurturing her
dolls and brothers. She has a smile that
melts my heart. She has a special place
in her dads heart. She brings sweetness
and beauty into our lives. She is so
independent and such a good little girl.
7. Baby McMillan. So blessed to be adding another bundle of joy
into our lives in March. I can’t wait to
hold the heaven sent child that the Lord has entrusted me and Danny to care
for, love and teach (which I sometimes feel so inadequate of).
8. My Sister
Heather. I have been blessed with one
sibling and she is perhaps the nicest, kindest, most patient, loving person
that I know. She is the peacemaker. She is such a good mom. She is such a great friend. I have been given the best.
9. My friends. At times Danny and I go through a lot and I
have never once felt I was going through it without hundreds of people by my
side both near and far. Friends that
call to see how we are doing, friends that drop off meals when someone is in
the hospital, friends that take my kids so I can have a needed break, friends
who would help at any request just because they care. I have been so blessed!
10. Of Course
Danny. I can’t imagine going through
this life without Danny by my side. He
makes the ups the best and the downs manageable. He is the best for me. I love him.
4.
Write 10 deceased
people you are grateful for.
1 My Savior. I love Him.
Carl. I placed him under living as well not realizing this section…but I am leaving it that way. While Carl is deceased, he is so close in spirit. Loosing a child makes the veil thin. Something that is hard to describe. I have gotten to know him in a spiritual sense. I have felt him close by, in times of need as the angel he is. What a gift!
Carl. I placed him under living as well not realizing this section…but I am leaving it that way. While Carl is deceased, he is so close in spirit. Loosing a child makes the veil thin. Something that is hard to describe. I have gotten to know him in a spiritual sense. I have felt him close by, in times of need as the angel he is. What a gift!
3.
My grandma. She lived with us growing up and was like a
second mom. She always was my biggest
supporter either at the pool or whatever I was doing (either a good idea or
bad) she never gave up. She taught me
resilient. She found peace and happiness
and fulfillment although she didn’t always have it easy. I love her and know
she is watching down on us.
4.
Granny and Ga. I loved visiting them in Malibu and when they
came to visit. They were such examples
of love, patience and living the American dream. There family meant everything to them.
5.
All of the angels that
have touched my life. Kennedy, Quincy,
Grace, Hope and so many more…..These little kids fought various childhood
diseases with patience while teaching the rest of us what life is really about. I am grateful for them and look forward to
one day saying thank you.
6.
My ancestors. I love doing family history work. I should do more. It is a way to connect with your past and
those that sacrificed and gave so much for me.
I am who I am today because of them.
7.
The founding
fathers. What a wonderful country we
live in.
- Joseph Smith..he restored that gospel that brings me so much peace.
Write 10 things about
today you are grateful for.
Danny has the day off
for New Years which is rare . Tyler is
setting up his car ramps. Scott loves
riding his bike. Building forts. Danny’s subwoofer project is going well. Driving in our van. Wally’s Rentals saving us tons of money. Wearing t-shirts in January. Our cozy home. My new comforter, sunglasses and trash
can…they make me happy. I am happy. I feel grateful. I feel blessed. It really is a good day!
Write 10 places on
earth you are grateful for.
Our home. My homes growing up which is a home of
love. Espana where I learned so
much. BYU which is filled with great memories. Krey Elementary where Scott loves
school. The temple. My parents home is filled with great childhood memories. Cancun where we honeymooned. Disneyland where I have great memories with my kids. Northgate High School filled with great memories.
Write 10 things about
the gospel you are grateful for. My testimony of the Savior. Prayer. Tender Mercies. The Holy Ghost. The scriptures. Temple Covenants. The atonement. Eternal Families. Trials. A Ward Family. Relief Society. Family History Work.
So this helped. The past couple of weeks have been a great wrestle. Lots of prayers, lots of pleading, lots of reading. lots of recognizing how much my faith means to me and can carry me through.
So this helped. The past couple of weeks have been a great wrestle. Lots of prayers, lots of pleading, lots of reading. lots of recognizing how much my faith means to me and can carry me through.
Monday, January 9, 2012
Danny and Heidi in 2011
Work....
Danny left East Bay Dental after being there for years. It was a great job for him over the years. He has been there from the beginning and grown it to be a successful practice, but felt there wasn't much room for his own growth or where he saw himself forever so he decided to make a move. He found a job that he really enjoys. He works beside a pediatric practice and sees all the teens and adults. He really enjoys the girls he works with and is excited for this opportunity.
I on the other hand gave up coaching. It was a great part time job, but it was time for me to be home with the kids. It took a leap of faith, but I am so grateful that Danny urged me to stay home and decided to finally make the move to full time stay at home mom. There isn't a day that goes by that I would rather be doing anything else than be with my kids. I don't have to say no to something I want to do with them because of work. It is the BEST and I feel so very blessed!
Home....
We have loved living in Brentwood. It is a good fit for our family. We are living in the cutest house which we love. It is perfect and such a great community. Scott has made some good friends from school and we enjoy bike riding for playdates. Today when I picked up Scott, tons of kids were walking home from school and I thought, "this is why I love Brentwood." Not only are there a ton of kids, but they still play outside. Love it!
Church....
Danny is in primary. It seems to be his niche in life. I am in Cubscouts which is perfect for me because I can't have a huge commitment. I do the paperwork and organize activities, which is fine, but not what I love to do. Our new ward is really nice. I miss the days that life had no commitments and we could go and do as we please which basically meant hanging out with friends and their kids. I guess we all have to enter the school years at some point.
Health....
Physically I can't wait to not be pregnant. I have nothing to complain about compared to many, but am sick for the first 3 or 4 months, followed by tired and wanting my body back. Every pregnancy has been a little different. I feel like I have been so emotional this time around. Emotionally, I am not quite sure how to take care of 4 kids yet, and we have to get through Danny and Tylers surgery and recovery, so I am glad that the baby is still in my stomach. We feel it is a boy and are grateful that the baby has a full heart and full brain.
Danny has been a trooper through his recovery. It is a really tough surgery and continues to be in a lot of pain as his muscles get used to the new placement of his bones. His last recovery was a long process, so he deals with one day at a time, looking forward to the day when he is hopefully pain free.
I admire him for his positive attitude and patience. I would not be able to deal with this like he does.
Patience....
It has been the year of patience. We thought Tyler's surgery would be this year, but that didn't happen, which we are alright with and feel that things happen as they are meant to happen with him. I have learned to adjust. Danny's recovery is a recovery of patience. We learned patience in the timing to move. We are learning patience with Danny buying a practice. We are learning patience with our rental. We are learning patience with my mom and Bob's fight with cancer. Sometimes challenges and life doesn't go as planned and the journey transforms us along the way. There is so much to learn and grow. I am grateful for these opportunities to grow...too bad it usually isn't an easy process. So that is 2011 for you in a nutshell. Onto another year which I am sure will continue to be filled with all new excitement, adventure and life lessons...
Kira in 2011
Kira = Independent. This girl wants to do everything by herself. When she started being spoon fed she would not let anyone feed her wanting to feed herelf. That continues to be her personality. Whether undressing herself, climbing into the bath and turning on the water she is Ms. Independent. It actually makes my life really easy in some ways.
She is such a social little girl and will go up to anyone to start a conversation.
She is pretty tough and can hang with whatever the boys are doing and zooms around cars and pretends to build legos. In other ways, she loves her babies and dolls and has imaginary conversations with them or on the phone. She loves shoes. Putting on everyones shoes. She can actually sit and play with things for long periods of time, is verbally understood and speaks spanish words back unlike her brothers who were still mute at her age. Girls mature so much faster than boys in some ways.
She is determined to be a big girl. Getting out of a crib way earlier than either of us wanted, not sitting in a high chair and trying to potty train herself. This girl is Spiderman and can climb in, out and on top of anything. She has a mischevious side to her and will be naughty just to be naughty.
Before Danny's surgery, she would have Danny do anything and everything for her. Time has helped her get back to realizing that dad is just as good as mom (which I LOVE)..we are getting there.
She is emotional. Jokingly, Danny and I told her to go to her bed instead of ours and she just started to cry and be so sad. When her brothers are mean to her, she gets so sad more than anything...that will make the teenage years fun, right?
We love Kira so much. Her smile lights up her entire face and just makes us smile.
Tyler in 2011
It has been a pretty good year for Tyler (relatively speaking). A very active 4 year old awaiting for a Fontan is a delicate situation. As much as Danny and I let Tyler live a normal life, he just doesn't feel good most of the time and it shows. His sats have continually dropped throughout the year (probably around 70's most of the time) and it has made it hard for our very active and lively 4 year old to live how his mind wants but heart doesn't allow. Knowing how to parent Tyler is difficult. It is hard to know if his behavior is a result of him running around and feeling crummy or just acting crummy. I am sure it is a combination of the two.
We have really tried to slow down with what we do, but it is still hard. He can either be the sweetest little guy to his brother and sister or a handful that tests all of our patience.
He has only been hospitalized twice this year which were the results of trying to get his Fontan, not heart issues, which we know is a great blessing. In August, his heart was too weak and in October, the surgeon wasn't confident in some of his team members. So we have waiting patiently and look forward to another date at the end of January. We hope that this will make him feel better and give him some of the energy that he needs.
As difficult as he can be, he is loved by so many. He has a unique spirit that people just love. He has so many people praying for him which we are so grateful for. He continues to teach us so many eternal lessons that we are so grateful for! He is a little man of many faces.
We are hoping that heart surgery will be a great way to start 2012.
Saturday, January 7, 2012
Jan 2012
Kira likes to park the cars, just like the boys.
Scott built a lot of this Pirates of the Caribbean lego set.
Heidi and I are mostly de-stressed about the condo. After the flood, I replaced the toilet and dishwasher, and Heidi helped me put a new floor in the bathroom. It has been a big stress, but I tell people, "At least this problem doesn't involve any illegal activity or moral wrongdoing. No one has died as a result of this negligence."
Today, as we were putting in the tile and I was placing the grout, I said, "Construction is not hard. Physically demanding, but mentally relaxing."
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