Thursday, April 3, 2014
My husband is so funny. But, on the flipside, if I didn't work where I do or be the one to pay all of the bills maybe I would have thought the same. I told him what the bill for the hospital was and he thought it wasn't too bad because he thought it was for the hospital, doctors everything. I laughed. I explained to him it was $107,000 for 4 days to use the hospital. Of course, this includes his meds, xrays, tests, etc. And to be honest, I didn't really think it was that bad since his bill in 1997 was $108,000 for just a few days longer, so about double in 16 years.
I'm hoping and praying insurance will adjust that bill out first so that our portion will go to the facility and maybe I can work out a deal with them. After that we'll be maxed out at the $6,600 allowed. It's such a big deal that of that $6,600 I can get as many deals as I can because I'm only allowed to save about $6,500 in my HSA and we have no dental or vision insurance (because it's too much), so out of the $6,500 I have taken out of my paychecks annually, some of that needs to pay for these areas too. As anyone can figure $6,550 to pay for $6,600 in medical bills and $? in dental bills for 7 is not enough. I will need these discounts. And while some may think that's a lot to have $6,500 taken out of my checks annually, you should always max out your HSA because you never know when you'll need the money and it's tax deferred this way. Not to mention, we have yet in the 2 years I've been in this plan and maxing it out to have anything left over. Annual ekgs and echos are expensive. This year was just the max.
I did get a bill from Cole's February MRI for $1480.00. I was able to ask them if they had discounts to pay off totally and they finally, after a lot of other not so great options, offered a 15% discount. I happily took it. That's $222 towards our dental visits we'll get later in the year.
I know it will all work out, but I will be a little tense until it all pans out. Needless to say, everyone will be getting every medication and doctor's visit they need this year since we will not be responsible for anything over the $6,600. I hope one day to have money left in our HSA, but with 5 kids, it's not likely. Cole alone uses up more than 1/2 our deductible every year.
Tuesday, April 1, 2014
Cole is just 11 days post op and he wants to try to go back to school part time. First we have to work some things out with the school and then if things go well, he'll go ahead to 4 hours of school tomorrow. Then, next week he'll go back full time, towards the middle of the week.
I'm really happy for how well it's gone, but a little nervous about him trying to go back to normal. The doctor let us know how important it will be that if he gets cut or needs stitches we get antibiotics right away. An infection could more easily go to his heart and reject the valve causing another open heart surgery. It wouldn't even be a cath at that point because the infected one would have to be removed. This threat is for 6-8 months and then we should be able to really breath.
I'm ready to really breath and very thankful it's not more than all of this. He even said he rode 6 miles on the exercise bike last night after he went for a walk outside. The fluid is off his lungs and the doctor said it all looked good.
Saturday, March 29, 2014
Like most parents, you live your child's lives. Not live through them, but live for them. Meaning if they're going through something you read about it, learn about it and guide them or console them if possible.
Right now my focus is on Cole. He did extremely well, but now that his heart's been 'messed' (their words not mine) again, it can be thrown off and forget what to do. His sternum has been cut open once again, so this will make future surgeries more fun for the surgeons because each one can add scar tissue and adhere the heart to the sternum. The very reason they try to find alternatives to limit the number of open-hearts one person has.
A lot of people have asked what he has. Tetralogy of Fallot sounds so huge and technical. It's really:
1) Pulmonary Infundibular Stenosis A narrowing of the right ventricular outflow tract.
2) Overriding aorta An aortic valve with biventricular connection, that is, it is situated above the ventricular septal defect and connected to both the right and the left ventricle.
3) Ventricular septal defect (VSD) A hole between the two bottom chambers (ventricles) of the heart.
4) Right ventricular hypertrophy The right ventricle is more muscular than normal, causing a characteristic boot-shaped (coeur-en-sabot) appearance as seen by chest X-ray.
Cole actually had a pulmonary valve at birth, but due to #1, it was removed and a patch put in it's place making it a monocusp instead of bicuspid. Cole had 2 large holes instead of 1. These holes are the actual reason tet babies turn blue or have cyanotic spells. Once the holes are fixed the baby should no longer turn blue unless the patches fail. After this, not having a pulmonary valve or one that doesn't work right, the blood will regurgitate back into the right ventricle instead of flowing to the left. This causes an enlarged right ventricle and low blood flow to the rest of the body. It can also cause failure of the right muscle and it can forget how to work or loose elasticity and not work even after repair, requiring transplant.
They had been watching Cole so closely that while the upper leakage at his pulmonary valve had caused such enlargement that another lower leak developed, they did surgery before it really (or they think as of now) began to loose it's function and elasticity. Because of his condition and where the repair is, open heart will always be necessary over going through a side rib. However, it's possible now that he actually has a bovine valve with a stent already in place, the next surgery may be prolonged by installing a Melody Valve via cath instead. It's new, so they do not yet know how long this will put him off for full valve repair via open heart surgery. Their goal as of now is to make it 10 years on this one.
The reality is that in the support group I belong to for adults and children with tet, some do not survive, some require transplants, some develop rhythm problems. All of these are extremely life threatening, but many can do well with the right interventions and great physicians. Ours will be one.
Friday, March 28, 2014
The grandparents have stopped by, one of his aunts have stopped by and his girlfriend has been here, I think, 3 out of the 4 days. Things are beginning to die down. Cole has started his homebound schooling. He basically, has to work on his own and get done what he can when he can. The catch is the more on-top of it you stay now, the easier it will be to transition to being back. They just have to figure out how to administer the tests and quizzes here, so he doesn't lag on those. His algebra teacher came last night and gave him all his homework and then stayed 2 hours to explain how to do what. He got all of it done last night. He got his history, from last night, done this morning. The principal stopped by this evening to drop off more. A LOT more history.
He goes back Monday for a post-op visit with the surgeon. They'll check function with the ekg and echo and then check the fluid on his heart with a chest xray. The nurse already told us going back to school is going to be up to us. She doesn't want him jostled around, so we're pretty hesitant to do it too soon. We'll see what they say after the xray. That will also tell us if his sternum is starting to heal or not. I would expect late next week at the absolute earliest. He may get stir crazy before then. He is going fishing Sunday since it will be warm enough. He's not allowed to drive or be on a boat. Doc said bank fishing only, but he'll take it.
I'm very impressed with him. My mom came yesterday morning and took him for a walk down the road. He definitely does better than I could have have imagined. He said today he was able to shoot pool. He said it's sore, but he can do it now. So, he is getting some range of motion without severe pain. We still have some oxycodone if it gets bad, but he hasn't taken anything except Tylenol and Motrin since leaving the hospital. I suspect going back to school could be hard and he may end up sore that night. The doctor says when he starts driving in a couple of weeks he could get sore trying to make turns. We'll see how it goes.
He's standing up straighter. His shoulders are going back a little. He's stretching out a little. He's definitely gotten skinnier, if that's even possible. But, he'll get back. He'll have to make a conscious effort. His appetite has decreased, but some of that may be because he's not as active. Day by day it will get better.
Monday, March 24, 2014
Needless to say they were so impressed that they sent us home late this afternoon. Insurance had us approved through Thursday as a week is pretty standard for this procedure. This 4 days (including the day of the surgery) is pretty much unheard of. He still hopes to go back to wrestling this fall and I do think he's tough enough to do all of this. I'm really impressed. He was upset with that chest tube. And he did get very visibly upset. It never once made him weak. It could have made anyone on this Earth cry. But his recovery has been amazing and he IS very strong and very tough!
Sunday, March 23, 2014
It's Sunday. He was moved from picu to tcu at about 3 this afternoon. The chest tube came out about 8 or so this morning. As of last night they didn't think it would, but the Dr decided it was ready this morning. It took longer than they expected because he was upset. That thing had been causing so much pain that I think the idea of it coming out upset him as much. He hasn't had any oxycodone since early this morning. They now just down to toradol and Tylenol. He said his chest still hurts but he could breath.
His demeanor towards me hasn't improved much. I've resigned myself to just not offer anything or say anything unless I have to. The majority of the time, if I do I'm wrong or he just gets annoyed. So mostly we sit in silence. He does fine when the nurses are around, though he tries to get out of doing what they want him to like sitting in a chair, walking or doing his Spirometer tests.
When they did get him to walk today, he took off like it was nothing. It didn't seem to bother him at all. He's creepiest just sitting in bed. I don't know. I guess I try to hard, because I just make him unahappy.
At least this morning I got to visit with my friend Jane. She lives in the area, so it was once to sit and talk with an adult...and not someone who constantly rolls their eyes at me. Hope tomorrow gets better.
Saturday, March 22, 2014
Or thats what I tell myself. He doesn't want to see anyone. He wouldn't even let me take a picture for the little kids kids since he didn't want to see them. As you can tell I took one while he snooker for a second. He's almost more irritable today. I'm now in the lobby. I just had to step out. It's been a couple days since he had his retainer in and his teeth moved the last time he skipped just one night. I insisted he wear it for a bit today since there's no longer a choking risk and then he can wear it again tonight. He was pretty ticked I wasn't and couldn't give in. I just needed to step out and figured I could wait for Brian and the kids instead.
I shouldn't really say new valve since he didn't have a pulmonary valve, but it is new to him. He was leaking so bad where it was supposed to be that his right ventricle enlarged so much that it had caused a lower valve to stretch out and begin leaking. The surgeon said once the bovine valve was in the ventricle reduced some and the lower valve stopped leaking.
He didn't sleep real great past night and they told him if he didn't start taking deeper breaths he'll further his risk for pneumonia. His chest tube is still causing quite a bit of pain despite oxycodone, so that's making it harder for him to really breath. Once he stops draining so much blood and fluid they'll remove the chest tube. Probably not for a day or two. He's not a happy camper right now and doesn't want to see anyone. I told them everyone will have to respect that as long as he's in pain and doesn't allow himself to slip into any sort of depression. This reaction is quite common after this painful of surgery from what I've read. We think step down tomorrow, but I'm going off a doped up 17 year olds memory for that. The rest of the family is going home today. I think that will be better for them and they can settle in before school on Monday.
He did get his Cath and 2 lines out this morning, so that's an improvement.
Friday, March 21, 2014
We got to the hospital at 5am. They took him to put him out by 7 and had him opened by 9. They said he scar tissue from the first heart surgery wasn't too bad so they didn't have any problems getting to his heart. They had the valve in and he was off bypass by 1pm. He wasn't happy with the breathing tube so they sedated him a little more and we finally saw him around 4 pm. Not quite as long as last time, but close.
He was in quite a bit of pain and as soon as he was even slightly coming out he began signing to the nurse what hurt and that he needed his tube suctioned. Thank goodness she had had some ASL in college. We got in there and she looked at us funny and asked if he knew sign. We told her that was his foreign language in high school. She was amazed he was lucid enough to do that. What they didn't catch he signed for his iPod and typed out short words. They're really amazed by how strong he is and once again he amazes his mother.
Hour by hour, then day by day or will get better. This is what I kept telling him when he was first upset. I wanted to cry for him so bad, but that would have made things harder for him. I pray things will just get more and more awesome for him.
Wednesday, March 19, 2014
I was thinking I'd go to work and then tonight I would pack for the hospital for the 7 of us. God laughs and laughs at my plans. Way too often sometimes.
Brian left at 6am to bring Chase to football as he always does. I got up a few minutes later and took my shower and started getting ready. Knowing I needed to leave before 7 so I could get to work early enough to finish making up my time for Jaemin's speech. Thankfully, I worked a lot extra last week, so I don't feel too bad and it was only a few more minutes. But, I make things up to the minutes so I have no guilt. Anyways, I went to get Jaemin to brush his teeth like I always do and noticed he felt a little warm. He'd had a cough and runny nose for the past few days, so I was a little more concerned. His temp was barely over 100 and normally I would just make sure he was comfortable and send him to daycare because it seemed more like a sinus infection which he gets A LOT.
I decided we couldn't risk him picking up anything extra at daycare and we needed to get him seen by the doctor to make sure there was nothing I was missing to expose Cole before his surgery. The hospital wanted the diagnosis so they could decide if it was still safe to do Cole's surgery and we needed to be able to plan what we were going to do with everyone for the weekend. We were concerned with him being sick enough to get Cole sick or to get other kids at the hospital sick. The doctor decided it could be a sinus infection, but diagnosed him with bronchitis due to the cough. He said it was more or less just a diagnosis he could put down since there wasn't much other than cold like symptoms, which was fine with me. He said if he'd had the flu it would be much worse and he was vaccinated, so it should be okay. The hospital said we could proceed with surgery and they'll check Cole out thoroughly tomorrow to make sure.
Jaemin's temp would bounce between 98 and 100.5 mostly, but did hit 101 once. I never had to medicate him, it just went down on it's own. The doctor did put him on an antibiotic just in case it was bacterial and we could knock it out before the day of surgery. It's been gone all night this evening, but fevers have a tendency of coming back in waking hours. We finally came up with a plan. Unless he gets worse, we're all still going. We'll keep him at the hotel instead of letting him go to the hospital if he still has any fever. We'll keep him in our room instead of with the other kids at the hotel. Then, if he's still sick the day of surgery all of the kids can stay at the hotel with their grandmas. I felt better once we had the decision and it seemed like it would work for everyone.
Ready for this to be over. Cole says he's not nervous. He said Friday morning, he'll be nervous.
Tuesday, March 18, 2014
We're definitely on the final countdown to H-Day. I've started packing things I'm afraid of forgetting (i.e. the boys' extra set of retainers). Tomorrow night will be time to pack the bottoms for everyone after we've done laundry. Then, Thursday morning I can wash my towels so I can come home to clean towels, wash the darks and fold them so that's done for Brian when he comes home.
We've been discussing with the Principal and teachers, in more depth, the plans for the next month for Cole. I've been wrapping what I can up at work and can remote check my email to delete as much as possible and the rest will have to wait. Cole spent the weekend with friends since it will be the last for a bit while we try to let him recover and try to keep him from catching colds, etc. It will be extremely important to keep his heart extra healthy for awhile since infections can more easily go to the heart once you have anything foreign attached. The valve can actually create an extra risk. It will all be good though.
We've got things more or less figured out. Where who will be when and how things will get done or what won't get done until I get Cole home from the hospital. The deal with Cole has been to focus on grades the last quarter, no working and just trying to take care of himself. I'm trying not to think about the cost of the hotel, the food and the hospital bill. Just get through Friday. And hopefully, the next couple of weeks will go by quickly so that he can just get back to normal and hopefully feel really great after this. My plan at the moment is to make sure he goes back to his cardiologist one more time prior to returning to wrestling in the fall to make absolutely sure his heart is healthy and good enough to handle it all.
One more day. Finish packing. Finish any emails to schools. Get there. Have fun, just the 7 of us Thursday night. Try to forget about it for one night. Get through Friday. That's all I have.
Wednesday, March 12, 2014
We're supposed to trust the nurse coordinator at the hospital. We're supposed to trust the social worker at the hospital. They offered to pay for a night at a hotel so we could come to meet the surgeon the day before Cole's heart surgery and then be there by 6 am the next morning. I asked if they could go ahead and get 3 nights and we'd just have to pay for them if we could so the kids could see him before Brian took them back home. They say sure, it's all fine, we'll take care of things. My punishment for trying, for once, to be patient and let other do ended up in a night of crying for me.
I decided, tonight, I would call the hotel she mentioned and see if the reservations were made. They were. For one night. And the other 2 nights they were now solidly booked. On top of that they hospital assured me they understood the size of our family and would get 2 rooms if they had to. I asked the hotel what they booked as and it was for 2 adults and 2 kids and we were not going to be allowed to stay even the one night. Well, don't you think that's something we would need to know before that night? Don't you think it would have been a good idea to have some attention to detail and listen. Don't you think it would have been a good idea to keep in touch with the family to have let us know what was going on. Not this hospital. Terrible. I just burst into tears. The stress is starting to set in and I'm starting to get nervous and this did NOT help anything.
I spent 2 hours trying to get things sorted out and find something. I don't even know the city very well, but at this point, we were just trying to find SOMETHING we could afford that was reasonable and would actually allow our family size without paying $250/night. Ummm...yeah, we wouldn't stay if that were the case. I finally found a Hampton Inn that's a 20 minute drive, but that's better than 2+ hours and having to leave at 3:30 am with 5 kids. They are allowing us to cram in one room and they gave us an $80/night rate. It's doable. It even had good reviews on Expedia. At one point, I was struggling so hard to find anything, I thought I was calling the hotel's 800 number and it turned out it was Expedia. They did try to help though. As I was talking to her she said I sounded like I had been crying and that's all it took for me to burst out in tears again.
At least we finally have somewhere to stay. I was wondering what we were going to do for a little while. I called so many places and we either couldn't afford them or they said we were too big, even for just one night. Now, if we can just find it. I've Mapquested it out and I'm a little confused, so hopefully we do okay. Once we find it, we'll be fine driving back and forth to the hospital, it's just the first time. When the directions say U turn first thing, I get a little nervous.
I just hope they don't treat everyone like this and it won't be my choice the next time he needs another surgery, but I hope he won't choose the adult hospital affiliated with this Children's hospital after how we've been treated over the past 2 weeks. They should be more organized for families than what they are.....BY FAR.
Monday, March 10, 2014
After a little while of thinking about it and watching Cole's grades go down for the last month, we talked in length tonight and asked him to quit his part time job. He is stressed about his surgery and between that stress and the job working him until 11+pm on school nights, it's just not working well. The doctor is writing a note because Cole is becoming progressively tired with his condition. It's too much to go to school fulltime and attempt to work parttime. He wrote his letter tonight and will bring it in with his doctor's letter tomorrow. They had him scheduled for Wednesday through Sunday. That's just too many hours during school for most kids let alone him with his condition.
He's going to attempt working again, elsewhere, in the summer after he's recovered. He needs to concentrate the next two months on recovery and school. Getting the energy just to go back to school will not be easy. We've got most of the school stuff worked out. The principal just has to get a teacher to do the homebound teach for about a week or so to catch him up on 2 weeks of missed work. I asked the principal to teach Algebra II since that was his specialty and thankfully he agreed to it. Then, Cole will be allowed to return to school for 1/2 days for the first week. We're working it out to where he only misses one core class and hopefully the teacher will work things out for the other 2 classes to just let that week go.
I'm hoping after he recovers for a couple of weeks, he'll feel so much better and realize just how down his heart was bringing him and find that push he needs to pull himself out and back into the real world to enjoy life a little more.....do better in school, etc. I think he can do it and I'm anxious to see how it all works out. Just praying for a great recovery for him. As easy as possible would be great since this is the first time he'll be able to remember the surgery and there are plenty more ahead.
Saturday, March 1, 2014
He had picked the day a few days ago. We worked with the 2 weeks in March the cardiac nurse gave to us. I called and left her a voicemail, but she never called back. So, then, I called and she said the doctor (there are two cardiac surgeons) she was planning on may be on Spring break that week. Uhhhh....why did you give us the choice then? She said she would call back later that day or the next day. Me, thinking by the same time the next day was growing inpatient by Friday. I had to leave work at 12:45 to get Jaemin to kindergarten screening by 1:30. Needless to say, I knew I couldn't talk to her in the middle of his screening at the busy elementary school, so I called to ask before I left. Well, the receptionist decided I really needed to be stressed out and she asked how she could help me. When I let her know I just needed to find out if we were getting the date or not she told me the nurse was wrong and the doctor would not do his surgery that day. I told her that that day worked out perfectly and I needed to know for sure before they moved it up an entire week and I only had 1 week to prepare, at home, work, etc. plus figure out what to do with the kids because Cole specifically picked a day the kids would have no school to work around. She couldn't seem to understand what I could possibly need to do before his surgery with 5 kids to think about.
The nurse called shortly after and I explained to her that the weekend was here, we only had 2 weeks left to plan, I had almost no minutes left on my prepaid phone to keep calling to get this arranged and get my questions asked. I explained that I just needed to know. She was NOT very nice to me. I won't go into exactly how she talked to me, but needless to say I ended the conversation with "I'm at work and can't deal with this right now, by the time you call this afternoon at home I will have talked to Cole and maybe we'll get a 2nd opinion at the neighboring children's hospital". I was starting to cry from the frustration and stress and didn't want that at work. She called back and left me a voicemail to apologize for how she spoke to me and said she would call after kindergarten screening.
I walked in the door after getting the kids, after screening, and one of the surgeons called. He said he just wanted to make sure we weren't stressed about the date because the idea of this surgery is stressful enough on a family. He assured me one of the two would be there that day and he would be set to have surgery. He said in addition, to alleviate some financial stress (yep, the out of pocket max on our insurance is high deductible, so that is high too) by paying for our hospital night since we have to come the afternoon before to meet and run tests. He said the nurse would be calling that night.
She called last night after we ran for groceries and apologized again. She told me they knew their job and sometimes forget all of the planning a family has to do prior to surgery (especially for 7) and how stressful it is. She told me they would get us the hotel room and maybe even a 2nd night so Brian wouldn't have to leave so late. We're hoping to stay a 3rd night (on our own dime) so that if he gets moved to step-down by that Sunday the kids can see him before they leave. They, more than likely, will not be allowed in ICU, so one of us will just keep them busy at the hotel until they can see him, unless they say it isn't going to happen. I think it would make Chelsi and Jaemin feel better for sure.
The worst part will be 5-10 days of hospital food and the expense of it. Luckily, she said they have a fridge and I can bring some snacks and food with me and I can get by on little. He'll be well fed since he's the patient. I felt so much better when she gave us the date for sure and we could move forward with the next step of planning. With this kind of thing and this many people and a hospital far away, it takes a fair amount of planning in steps. It's not like it's an outpatient surgery and he'll be out in a day or back to school in just a few days, this is 3 weeks away from work and school with the possibility of only returning part time until he gets his energy level and tolerance built back up. I have no doubt he'll do well and luckily he's very strong and very healthy, but open heart surgery is tough on the body and stressful on a heart.
Soon enough, like all of the other things in our lives, we'll be able to look back and just smile at the memory of it. And while he'll have a lifetime of these, the kids will be older and we'll be more seasoned at it as will he. And, hopefully, there will be advances to lessen the number of open-heart surgeries and allow for some cath procedures here and there instead.
Wednesday, February 26, 2014
The Cardiac Coordinator called today. She said we can pick any day. Feels weird. Well, today's a good day to saw open my son's chest and play with the one thing keeping him alive.
She said there were no real, off-limits, days, so we decided Cole should decide. We took the school schedule off the fridge and since they're off 1 1/2 days, after his birthday, next month, he decided he wanted it then. It will be 1 1/2 less days of missed work. It will also mean we can more easily take the other kids out of school to be there that day. They will more than likely not be allowed to see him in the ICU since it will still be flu season. She said they could come back when he's in the step-down unit, but that will be 2-3 days and it's a 2+ hour drive, so I doubt they will.
Now, I just have to wait for her to call me back tomorrow morning to confirm. We'll meet his surgeon the day before. Don't think for a second I hadn't already done research on the two surgeons there. He'll have blood tests, get xrays and sign some forms. Then, we thought we could take the kids to a hotel (she says there are hospital discounts) for the night and they can swim before the stressful next day. It will be good for Cole too. Surgeries are at 7am except on Wednesdays, so it will be 7. I'm dreading saying good bye to my sweet 5 year old for so long, but I know I need to be with Cole. He will need me more. Jaemin doesn't really need me and won't miss me half as much as I'll miss him. Thank God for Skype! I don't have many cell minutes since I'm on a prepaid plan, so that leaves my only real communication with Skype. Not going to be easy for that long of a period, but it is what it is. I'd like to up Cole's texts too, so he has something to do.
Hopefully, the pool table will delivered next week so he can do that. With the snow in the forecast who knows.
I have 2 more weeks to tie things up at work before I'm gone for 3 weeks with Cole. Just thinking about all this is so weird. It's been 16 years of being told he will need a cath, then he'll need surgery, then he won't need surgery. Then, we switched hospitals and were told he would definitely need surgery. So thankful we switched 3 years ago. They had never done an MRI and all tet kids should have an MRI. You cannot completely tell from an echo or EKG the true picture. We would never had known without the MRI. Dr. R said his heart function was still good but the dimension of his right ventricle had increased so much from 3 years ago and if he waited much longer he could lose function and you do NOT regain that. Honestly, I think the other hospital would have killed him. God tends to lead me the down the right path and even though I'm usually pretty scared and leery to go, I'm glad I do.
If you personally know us, we don't need a whole lot other than prayers and maybe cards for Cole.
Saturday, February 15, 2014
We thought we had it all planned out, or pretty much anyways, what we were going to do with the kids and how we were going to handle the week of Cole's surgery. I wanted it in my head so when they tell us what's going on this week or next I was somewhat prepared so I could better process. Then, my uncle was killed this week. He was cutting a tree down and it fell on him. He's the youngest child of my grandma's and is barely older than myself. His kids are my kids' ages, I was in his wedding and babysat his oldest. Because of family issues, my mom didn't quite make it to the hospital before he passed away. It just broke my heart for her. She is the oldest, he is the baby of the family. I know how much he meant to her. She couldn't be there to say goodbye to her baby brother.
I know, I really do, that Cole's surgery is going to be fine. I know that it must be done in order for him to live. But, it's his heart and kind of an important organ to his survival. I was so set thinking the kids could just stay home that day since it's so far away from home. They could stay in their routine and their aunt could stay with them until Brian leaves me at the hospital. But, after this week, I'm doubting our plan. What if anything happened? Maybe they really should be there, just for that day, just in case? Will they really focus on school that day not knowing if everything's okay with their big brother anyways? It will be much harder to have them with us, but at the same time is it really right for us to deny them of being with their family. Really, this IS a big deal.
Another plan changed and unsure. We're going to have a lot of questions for the doctor so we can figure out what to do. I've been trying to chat with others at the support group, but it's been half one way and half the other. We may lean to our family's old standby. We'll call a family meeting, present the facts and see what the kids think. See how they feel. Cole will be out that day, so he won't even remember them stopping in, but it may make them feel better if they can just see him before they go home and then we can Skype the rest of the week. I know Cole really can't wait until it's all over with and I'm completely with him on that. I'm getting nervous about everything. And I just want it to be over with so I can stop. Stop worrying about the 4 younger kids, stop worrying about how to work things out and stop worrying about Cole being so scared and being completely helpless in it. It really SUCKS being so helpless watching your child go through this. I can't imagine how a cancer mom feels. Kids should NOT be born with diseases and that's that.
Thursday, February 13, 2014
We went to the hospital (a 2+ hour drive) to have Cole's cardiac MRI/MRA done. They were running an hour late, so it made the day even longer. We didn't get home until 6:30 and both of us were just tired from the driving and sitting and waiting. The radiologist said they got good images and he was beginning to circle and calculate. Now, we just wait for them to give those numbers to the cardiologist and then the team will get together and decide how to proceed. Cole said he hopes it's awhile until he needs another one. 2+ hours in that machine and lying still and taking your breathes is kind of tiring and SO not fun.
Now, I'm wondering what Cole will decide if he gets choices. He said he wanted to do it as soon as school was out this year, if possible. He really doesn't want it during his senior year and since he's taking a couple of college classes I would agree that it's not a good idea. I reminded him that if he did it after school wrestling would for sure be out. He said he was so mad at the coach for how he treated him that he didn't care. I tried to remind him that he would only be punishing himself, not the coach. Those kinds of coaches do not care about their athletes, only themselves. I told him even if he changed his mind come fall he wouldn't be able to so by doing that he'd be making the choice already. Then he said he didn't want teachers coming over. I think there's probably more to his worries and concerns, but he's just not sharing them right now. He's like me. He needed to hear the information, but now he needs time to let it sink in and him to just think about it.
Now, if my mother in law would just leave me alone. I know she's just trying to make sure we know she cares, but WE KNOW. Trust me. Asking constantly if we know anything and acting like we're hiding anything is just pushing us away and making us not want to talk. We've both told her multiple times that it would be at least a week or two after his MRI until we knew anything and we would let her know then. Just let got and trust us and remember he's our child! We've had this fight before. First we will deal with everything on our side and get things figured out for this family of 7, then we will tell people who's doing what and when things will take place. Wait until we let you know, please!
Friday, January 17, 2014
I finally got to use the lens I bought last year for the purpose I bought it for anyways. I wanted to check it out on indoor sports pictures. Specifically, Cole's wrestling.
He pinned the kid and did great. It's amazing that this is only his 3rd year wrestling ever and has a heart condition. He really does do well. I know a lot of parents think a junior in high school isn't very good if they're on JV, but I think it's great. Most of these kids have been wrestling for 3-5 years by the time they're freshman and that was his first year. He's winning every JV match and has really improved. I'm very proud of how strong he is and I mean that in more than one way.
Wednesday, January 8, 2014
Every mother knows that you can't protect your child from the hurts of the world, but GOD IT HURTS!
He did much better with today than I anticipated and I know he was angry, but we talked tonight about taking things gracefully, accepting apologies gracefully and being a bigger person no matter what. As a friend at work said; it's hard enough for us full-grown adults and I'm expecting this out of a 16 year old. He always has had to deal with adult details of life, what's new though?
I had finally gotten the nerve to call Cole's PC (pediatric cardiologist) today to find out about the MRI. He called back right away and said someone was supposed to have called to schedule. Okay, so let's go ahead. They're getting the specifics but we do plan to go in February for an all day trip, no sedation MRI. He broke the news, which I guess I sort of anticipated, that he does NOT qualify for the Melody Valve, so it's open-heart next. I knew that the Melody required a conduit or something to use in the anatomy of the heart, but didn't know if what Cole had left of a PV (pulmonary valve) was going to be enough. He didn't have enough. He said we could wait until summer so he didn't have to miss a day of school, but I told him that Cole and I had already had a conversation about timing. He originally wanted to have it over the summer until he realized that if he did it this Spring there was a chance he could wrestle his Senior year which is this October. The cardiologist agreed to move up the MRI in case he needs surgery.
I asked him what he thought after he compared last years echo and ekg to this years and he said that he had begun to see things in last years and they were still there this year. Nothing significantly changed, but obviously there are electrical things going on there. The MRI will verify if the muscle is too damaged to wait, failure or no failure. I asked him if he could wait until next year and he said it's possible that's what the MRI will show, but he had the tone he gets when he really doesn't believe that to be the case. I have this feeling he knows more than he's letting on and Cole does too, but we'll have to wait to see. Who cares about the $1,000 for the MRI, I just want to know he'll be okay. But, there's the chance before school lets out this year he will have had it. I will try to purge that back where I've been keeping it all these years so I don't get over anxious
Then, about 3:12 today Brian called and said Cole was home from school. Apparently, his 7th hour teacher decided he didn't have to listen to a 16 year old and didn't believe that he was supposed to leave early for a wrestling match 2 hours away. The office said they announced it, but something must have been wrong with the intercom in the classroom. The teacher didn't even try to ask the office or anything, he just told Cole he was wrong. The bus indeed left without him on the night he was so excited about getting to wrestle varsity. I left a message for the principal and called the coach to let him know what was going on. They had no idea. I guess they thought he just skipped? The principal called me back to tell me he heard what happened and apologized. He said he'd pay mileage if we drove him there, but I told him I had already asked Cole and since it's 2 hours away and weigh ins were in about 40 minutes from school letting out there was no way possible for him to wrestle. He said he was going to talk to the coach and the teacher, but he couldn't imagine what they could say to not put the school at fault on this. He told me someone would be apologizing to me. I let him know that I didn't need it. I was mad yes. I was worried about how much it upset my child yes, but it was him to deserved to be apologized to. I told him most of my concern at this point was making sure this never happened to another kid since they couldn't fix what they did.
I did follow up with an email. I think the teacher needed to step back and realize that you don't really know a kid or people. Of course I didn't say that, just thoughts. He needs to know that kids aren't there to get out of school. Cole has never tried that. And at the very least he wasn't a jerk teenager and didn't just walk out though apparently it crossed his mind. I told him he made the better choice. I told him that if Cole has surgery and depending on the timing every match is a match he gets to have. We don't know what he'll lose with surgery and I hated seeing him lose one over this sort of thing. I'm sure he had no idea he had a heart condition. Not many do know. But those who don't know anyone with one don't know the things they take for granted in life. Just like I don't know what some others don't get to do because of what they were handed in life. I'm just trying my very best to keep this kid in the activity he enjoys, keeps him healthy, is great for his esteem and is something to enjoy in high school for a limited time. Take advantage that the cardiologist finally caved and let him do it. Take advantage that his heart has done well through it. Be the kid that's rare to make it 16 years after a transannular patch with monocusp repair of tetralogy. You don't know what tomorrow will bring, so get the most out of today. This has been my motto in life. I've seen too many others wait for tomorrow and it never comes. I want to enjoy my family today to the fullest and want my kids to enjoy their lives to the fullest. Their happiness is everything.
I couldn't make it all better for Cole when I got home tonight, but I started off with a hug and then told him all the details of the day. I think he knew about his heart, so he just nodded, but he internalizes, so he'll fear the surgery and not want to talk about it. That's probably best. Only talk about it when and if you have to. Just hopefully, he's not internalizing anything I need to know about, but I think that couple of hours before me getting home did him some good to blow the steam off....and the fact that his dad told him to go hunting which is a great hobby for stress.
Thursday, December 19, 2013
Cole had his annual today. We're starting to prepare, but there's still no for sure of when he'll get repaired or what they'll do. He hasn't had an MRI since 2011, so Dr. R said he wants it in 2014. After asking a little more about what happens after that, he decided it would be best to do it earlier, rather than later. He's going to call tomorrow after talking to the cath specialist and then we need to have a list of Wednesdays we're available to drive to the hospital (2+ hours away). It's obviously an all day thing. No stress test this time though. He said there's still a chance he could qualify for the Melody Valve. It's only been out for about 4-5 years and they've been using it for 1+. There's no lifetime on the valve yet since it's not been out long enough to know yet. That's what he's discussing with the team tomorrow. He's going to compare today's echo/ekg with last years, but he didn't think there was a great difference. There's still a chance Cole can go another year without his pulmonary valve since he's not seeing any changes yet and not feeling any signs or symptoms of heart failure yet. However, MRIs are the better gauge for failure of his right ventricle. Obviously his right is still enlarged. That will not go away until the valve is put in. It's still that fine balance between waiting long enough so you don't have to put the heart through unnecessary surgeries and not waiting so long that the muscle's not repairable, which is when you could run the risk of critical failure needing a transplant. It's rare, thankfully.
He said they team may not be able to tell from the tests today if he qualifies for the Melody and may need the MRI to decide for sure. Then, we'll kind of go from there. If he gets the Melody, he'll only need a cath for repair and need a weekend for recovery and can even resume wrestling a couple of months later. He just needs scar tissue to build up and strengthen the repair. Then, they're expecting, like other valves it will buy him a few to several years before he needs another valve. That's the going rate on valves. For whatever reason, not having a valve at all, he's survived longer than most patients with only a patch for a valve. It's typically just a few years and we're going on 17. Just over 16 to be fair, but Doc says it's amazing.
He said once he has the MRI if they decide he needs the valve it will not be a wait and see or lets schedule it next year like they originally thought. It will be fairly quick at this point. That's probably better for Cole so he doesn't get any more anxious than he will anyways. If that even makes sense. If he needs open-heart this time around and we do it before May, he knows he can recover in time to wrestle his Senior year. He may not land on Varsity, but I am so proud of him no matter what. He's very strong.
Other than that it's the same old same old. He will never get away from open-hearts. He has a lifetime of caths where they will insert a valve with stents or open-hearts to repair and replace valves. The only thing I know is that it will be a bovine valve. He said for right side they do bovine, you don't do mechanical and he only has to be on aspirin afterwards, so that's great!
One day at a time and hopefully we can get him in in February, so we can see what's going to happen. So much for hoping I wouldn't meet my high deductible next year. Those MRIs are EXPENSIVE! I would just like to NOT meet it one year, but my money's well spent keeping him healthy.