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.
Sunday, March 16, 2014
I emailed our local chapter because they were having a how-to meeting soon. I asked if there would be any issue with the adoptions and they said "I’m sorry adopted children would not be able to become DAR members through you, unless there is a direct blood relationship. Thank you for your interest in the DAR"
How sad is that?!
I responded "There is no interest. I am sad that in today's society any organization built on the ideals that the US is built on does not support adoption. My children are mine. I am a direct descendant and therefore, my daughters are just as much entitled as my biological sons. This is THEIR history as much as mine and it is their children's history. I would never want to be a part of something so stuck in history that they can't see a future."
I just can't get over how sad this is. I posted to our adoption group and one momma had a great point. What about all of the aunt/uncles, grandparents, etc. who raised children as their own. They may have been blood, but could have been blood from another side, not truly making them allowable by DAR. Or what about all of the secret adoptions where the child never even knew. They weren't related by blood, but they raised them as blood. They qualify for DAR, but my kids don't just because we're forthcoming and it states they were born in Korea on their birth certificates with our names as their parents.
Guess what DAR. You are a sad, sad organization, well behind the times and they are my kids, we are their parents and our pasts and ancestors are theirs too. They don't have access to their blood ancestors and we have no problems sharing ours and our lives with our 5 kids!
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.
Sunday, March 9, 2014
I'm trying to get a lot done before we go to the hospital next week. I'm trying to make sure that since we'll miss our usual grocery shopping day, I have enough for Brian and the kids while I'm gone. Trying to get as much ready as possible. Next week is washing Cole's blanket to bring to the hospital.
Today, we got the house cleaned, monthly shopping done, downstairs steam cleaned and my haircut. I always trim in between cuts. I just can't justify going and spending $25 every 6 weeks. So I usually trim the back in between so I can wait about 3 months between cuts. I always do fine, but I had it too short in the middle of my neck. Brian was really afraid, so I had Kaelin cut it. Yep, I told my 11 year old how to do it and she confidently put the scissors in one hand, took a comb in the other, straightened my curls and trimmed away. She really didn't do bad at all. Brian could NOT believe she even attempted it. So am I stupid, brave or very trusting?
So tired and glad the day is over and so looking forward to next week being over and Cole being okay.
Saturday, March 8, 2014
He was my first born. Like all of the other kids, he'll always be my baby.
Love my Cole Cole and I hope he has many more wonderful birthdays. it took a little extra effort to get these candles out. I just grabbed some and didn't realize they were relights. And they, apparently, were really good ones!
Friday, March 7, 2014
We decided that between Cole spending so much time at his friend's house so he can play pool and needing something for him to do inside while he recovers from his surgery, it would be good to get a pool table. We had been thinking about it for awhile and kinda watching, but we kicked it in a little bit when there was more of a reality he'd probably need his heart fixed again.
We finally found a good deal on a table on craig's list and put it up today. We had to do a lot of purging, which really just meant throwing out puzzles that were missing half the pieces, etc. Not a big sacrifice. We actually were able to rearrange the rec room to make a little more sense and now there's about an 8x10 living room area (seriously small I know) and then the bookshelf with some toys and books is lined up in the hall from the garage and then the pool table area. But it works and the kids are super happy....at least the older 3 that can play pool. We figured with 5 kids, it would be a good investment and way to spend more time together and also to get to know their friends. We played several rounds tonight and had a lot of laughs. Mostly at the expense of Chase and I because we're so bad, but who's really keeping track. The boys thought the gloves that came with the set were pretty funny, but then got attached to them saying they could shoot better. And one of these days someone will have to google what the set of tiny balls are for. I have no idea.
We were playing a game where we each had a number and you had to make sure it didn't get knocked in. If it did you were out. Brian couldn't remember which one his was, so I reminded them they needed to keep better track of their balls and well, Chase couldn't stop laughing. Such a 13 year old.
And when I asked the big boys to show me their gloves, little man Jae had to join in with his brothers. That his hand front and center.
And my little Jae loves his picture taken and despises wearing clothes. This is usually all he'll wear. Needs new Ninja Turtle pants.
Thursday, March 6, 2014
Korea found a baby (younger) picture of Jaemin. I've never had one until he was 5 months old and sitting up in Seoul. Nothing prior to Seoul. I had asked before and they said they had nothing. But, I asked again and they found this. It looks to be newborn and he looks so much like Chels (side by side). He IS SO cute and looks just like the Jaemin I love today. My heart just beats.
Maybe if I actually write it all out, I'll accept it and give my my own hopes and dreams for my kids and let them have their own. I shouldn't even say hopes and dreams as much as letting them suffer the repercussions of their actions or nonactions.
I love my kids, I love my husband, but we are not perfect. We're not perfect spouses, we do not have a perfect marriage and we do not have perfect children nor are we perfect parents. My struggle is and has been, for a long time, watching Cole struggle so much in school. I sometimes wish I had known then what I know now. I wish I had known that heart conditions come with neuro delays in emotional and social areas and ADHD is extremely common to go along with the difficulties of a heart condition as serious as his. Maybe then, I would have gotten an IEP. Then, when he was younger would he have gotten more help and been a more confident student. Maybe he just really never did care? Maybe it's time that I just let go and realize that regardless of his inattention to school and the ability to really dig in and study due to his heart condition or maybe not due to his heart condition, there is nothing I can do. I can't help him. I can't change things. We have bribed him in every way possible.
It is no doubt that since he found out about having his surgery his grades have slid. He's been able to barely get that B average and slide in there, but now it's not even that. It's not terribly lower, but lower. I know he's scared. He won't say it. He won't admit it, but what teenager wouldn't be scared of something so big they've never encountered before? I know some teenagers take this kind of life and flourish. They don't let it get to them. He's just not that kind of kid. I don't think he really doesn't think he has to get good grades and do something with his life. I think a part of him, right now is paralyzed with some fear.
I need to let go. I need to let go of the hope of him becoming 'that' kid.....'that' student. The one who doesn't let the disease get to them and no excuses. He is scared, he does let it get to him and he just is who he is. He's not going to suddenly pull his grades up and say "hey, I'm in charge of my future and I care". There. I said it. I'm saying it and hoping I can let it go. I'm hoping I can quit trying to fix it. Let him really fix it or......not fix it and fail on his own. I will always love him. I will always care, but I can't do it for him. I've tried for years to help him. It's time he does it for himself. I don't want to ever be able to say I told you so. I will always have hope that he will get it, but I can't dream about that anymore. He is his own person. After Saturday he will only have one more year until adulthood. I can keep trying to help him and give him my pearls of wisdom when he'll hear it, but it is HIS life.
Sunday, March 2, 2014
I reluctantly let Cole go to work last night. It was supposed to drop snow, ice or both at some point, but they couldn't seem to narrow it down at all. Our weather forecasters this winter have not done a good job at all!
The girls, Jaemin and I watched the end of Thor and had some popcorn. They definitely enjoyed!
I knew I wouldn't sleep well since Cole had to work past midnight. I'm sorry, it's ridiculous that McDonalds lets almost children manage their restaurants without enough sense to send a 16 year old child home when ice and sleet set in. He had our 4 wheel drive, but nothing fairs well on this stuff.
1am came and went and nothing. He finally called and said he'd made the 10 minute drive in 40 minutes! He said it was really, really bad. Well, then he tried to back down the driveway and slid all the way down until our swingset, dog kennel and basketball goad stopped him. The kennel is bent (Camo was in the house due to the cold) and he sheared the basketball pole clean off. I think it scared the crap out of him. He was crying. I told him we didn't care about the pole or the dent it might have left in that almost 20 year old truck. I was really thankful that he had made it home in one piece.
Needless to say, this morning we had a talk about just parking in the yard at the top of the hill, who cares about the yard. We also told him that a stupid minimum wage McDonalds job is not worth his life and next time he has to tell them if it starts he has to leave. His life doesn't depend on that money, but his life does depend on him making it home alive. I told him after his surgery he needs to look for a job that isn't so stupid and immature and irresponsible to their employees. Brian and I decided we need to get an estimate on some more concrete at the top so he has a place to park without worrying about him hitting the house or sliding into the woods on nights like these. I'm tired of being up, worried for hours like last night. Hopefully, it won't be terribly expensive, but we have to do something. Chase will be driving in 2 more years and we'll have 2 of them to worry about.
God please keep my kids safe. And please let adults who are responsible for them have a better head on their shoulders than these people have.
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.