(I started writing this Tuesday morning in the hospital and finished Wednesday at home)
Yesterday was rough! By dinner time last night, I was a tad bit frustrated. Brandon had been sleeping all day, and while part of me felt like he was just wiped out and needed to sleep, the other part of me was worried that he was shutting down - depressed and frustrated - and that I was going to lose my happy, easy going kid to this disease. He would wake up for about an hour and then in the middle of a conversation, just close his eyes and drift off to sleep. After panicking the first few times and checking his blood sugar, only to find them normal each time, I began to relax and realize that he just needed to sleep. We had an incredible nurse yesterday who worked really hard (with the minuscule minutes he was actually awake) to help Brandon find rewards that motivated him and helped him overlook the bad aspects of diabetes. She brought a Wii into his room, which was obviously a total hit, and came up with an awesome sticker chart that allowed him to get a prize for each 10 pokes. He was anxious to get those stickers on there, that's for sure! We let Kaitlin come have a "late night" last night, but it was quite boring, since Brandon just slept! So Kaitlin, Cole and I played games for a few hours until, right around 11:00, Brandon woke up and said, "Mom, can I eat breakfast?" We laughed and told him it was almost midnight. He would not believe it though, so we had to open all the blinds and prove it! For the first time all day, he asked for food...and ate! In fact, I was so excited, I tried to get him to eat right away and he kindly reminded me that he wasn't supposed to eat until AFTER he took his insulin! (How on earth a 7 year old absorbed all that information and was following it amazes me!) He ate and played Wii with Kaitlin, who was beyond ecstatic that he had finally woken up and wanted to play with her! They played MarioKart for an hour or two and then at 1:30, long after Cole was sound asleep, I finally made them wind it down and watch a movie. They were both out like lights - snuggled in the same bed! I easily feel asleep - hopeful that Brandon's behavior was just exhaustion and that the next day would start fresh. Watching them sleep, I felt like everything would be alright in the world and finally slept a few hours.
Today, hope is in the air. Brandon woke up just before 7, wanted to take a shower and wanted some breakfast! As I speak, he is dressed in his clothes, playing Baseball on the Wii and has been chattering non-stop about this and that and that and this! He is back to himself! He is teasing the nurses and doing the "eyebrow" thing! (If you know Brandon, you know what I'm talking about!) He ate his breakfast AND his lunch and even gave the orange a few more shots! It feels good. Even as I bask in the "normalness" his behavior and the feeling like things are alright, I am all too aware that we are just hours away from filling hundred of dollars worth of prescriptions at Costco, days away from appointments with new endocrinologists and only hours away from going home and realizing that this is all "for reals." It's overwhelming. Discouraging. Disheartening even.
If you let it be.
And we will just keep fighting to take it one day at a time and not let it be. We couldn't do this alone; no way. In the days we have been here our family and friends have been amazing. I honestly can't find the words to describe the relief, the joy and the humility I feel at the millions, yes millions of things that have been done for us, big things clear down to the smallest little comment that was just what we needed to hear. Just when I feel overwhelmed at the tender mercies that surround us, someone else will offer something or say something that reaches us to the core. It truly is a testament to the power that can be had when we all help to make others' burden light. We feel truly blessed to be the recipients of such overwhelming love and thoughfulness.
We are home now and since I don't have any laundry to do (thank you, thank you to you 3 amazing women that tackled my mountains) and since my house is clean (thank you to you 4 women who tidied and got the house and beds all ready for us to come back to), and since my fridge and freezer and cupboards are full of non-dairy, carb-countable meals (thank you to so many who helped fill it without ever letting me say, "no!"), and since a friend has already arranged for me to stick to my goals of working out and made it possible that I don't have to leave the house (thank you to my "bossy" friend who told me she had decided and I didn't have a say), and since the kids are busy playing with new toys (thanks to the nurses at the hospital and all the friends who dropped by various gifts for Brandon), and since we have already found a Juvenile Diabetes Research Foundation 5K in April that we will support and have all our friends do it with us (more on all those details to come - but. BE.EXCITED.), and since at the moment I am looking at a tile with my "motto" for all of this vinyl-lettered on to it, encouraging me to keep going (thank you to a sweet friend who somehow knew our whole family would need to see that quote everyday to encourage us) and since I finally got a good 7 hours of sleep ... we are enjoying our time today!
So far we enjoyed a delicious waffle breakfast as a family ( Cole and I sure had fun figuring the carb count on our homemade waffle mix), have played the morning away and have plans to feed some ducks and watch a few movies! I figure this diagnosis affects the whole family and for now, I really don't care about school or chores or anything other than just enjoying the fact that we are all back hat home together and that although some aspects of our life, and Brandon's will be different, for the most part the Roundy family will be just the same. I know that eventually we'll have to come out of our cocoon and tackle all of this in the "real world," but for right now, I think we'll just stay right here and enjoy the sweet, simple moments of life in our own little world.
One last thing, this morning when I was reading my scriptures and I came across this scripture which immediately touched me in such a way that I knew that Heavenly Father was speaking to me and answering my prayer. It's found in Alma 57:27 and reads, "They are young, and their minds are firm, and they do put their trust in God continually." I'm grateful for those sweet moments that remind us that we are not alone in our struggles and that our Heavenly Father loves us infinitely... and that we can do this.
Wednesday, January 11, 2012
Monday, January 9, 2012
It All Changes in an Instant
Here's fair warning. This post is long and it was my therapy. I'm not a neglectful mom. I'm here at Brandon's bedside watching him fitfully sleep and wanting to sit beside him as quietly as possible, I decided to type out what has happened so far. I'm sure there are typos - I typed it fast and teary-eyed. Maybe I shared to much. But I needed to put it all down somewhere so that someday we could look back and recognize all the miracles that took place during this time.
Saturday morning was a normal day. Up early and to the gym by 9:00 for basketball games, Brandon and Brock were so excited to play again after a 2 week break for the holidays. As the kids gobbled up their warm muffins and orange juice, Cole and I lectured them about drinking some milk or eating some cheese so that they would have the energy they needed to play good. This has been a big topic at our house the past few weeks. With all the Christmas goodies and treats, we all were eating way too much junk and Cole and I had been trying to help them understand how important protein and other things were for their bodies.
Obligingly slurping up their milk, we hopped in the car and headed out. An hour later, we were all worn out from cheering and watching Brandon and Brock "do their thing" on the court. Brandon played awesome. He's a natural. A born athlete. In everything. We've had comments about him from people we don't know, admiring his baseball skills, his knowledge of the game of basketball, etc. As much as Cole and I love sports, we haven't drilled anything into him - it's just him.
We headed home and spent a few hours doing this and that before enjoying time with friends at a baptism. Then the boys all headed over to grandma and grandpa's house to watch BYU basketball. When they finally got home, we read scriptures (a goal we set and have done everyday this week), and herded the crew to bed, thankful for an 11:00 church time. Cole quickly fell asleep while I wrestled with my mind and the million things I needed to do and take care of. Finally deciding a movie would help, I picked one and then, noting it was almost midnight, decided I would go take Brandon to the bathroom one last time. Over the past 3-4 weeks, we had been having a nightly struggle with him. Every night, within hours of going to sleep he would have an accident. Cole and I were stumped. He was one of those kids that potty trained at 3 and went from diapers to underwear overnight. He has had maybe 2-3 accidents since then...and now...EVERY NIGHT? Something was up. We took him out on dates and tried to see if something was bothering him. We talked to his teachers. We tried making sure he went the bathroom before going to bed, we tried everything we could think of, but night after night he just kept wetting the bed. A few weeks ago, Cole and I had googled bedwetting and read that there were many possible causes for bedwetting after age 7, but noticed that diabetes kept popping up. Ridiculous. Not Brandon. We've always been a titch worried about Brock since Brock is the carbon copy of my dad and my dad has type 1 Juvenile-onset diabetes, but Brandon, not a chance. I did notice over the week that he had been starving, one day eating 2 bowls of Ramen, 4 sandwiches and still crying becasue he was SO hungry. At night, he would try to get water and Cole and I would say, "Not before bed." He would just start bawling and say, "I'm so thirsty though." Part of me had little warning signs going off, I definitely noticed each little thing and the signs kept adding up, however the other part of me could easily dismiss my fears as paranoia and justify his actions as those of a growing, very active kid. Afterall, he was perfectly healthy - not one complaint.
So Saturday night, putting my movie on hold, I ran to help him go to the bathroom so he wouldn't have another accident. (He is an extremely private kid and was becoming VERY upset that he kept having them.) When I got there, he had already had one and was out on the couch. I cleaned up and headed back to bed to watch my movie, but as soon as I pushed play, I knew I needed to do something. I turned to the internet (which I HATE doing because so few things on there are actually medically acurate) and googled 'diabetes in children.' I reveiwed an article on WebMD which basically said everything I already knew, and detailed some of Brandon's symptoms, but definitely not a clear cut case. Then I clicked on a site about Kids With Diabetes. It was full of hundreds of kids and their stories of how they were diagnosed and how they are doing. I clicked on one and quit breathing. I felt flush and nauseous. It was almost Brandon to a "T." I clicked on a few more and as I clicked each one, I began to see more clearly that one of my greatest fears was probably true. Compelled at this point, I got out of bed and called my dad. It was 12:30am, but he was still awake. I asked if I could use his blood computer to check Brandon's sugar. He wondered why, afterall the kids had just been there a few hours before and Brandon was fine. I told him I just had a feeling and I needed to know. He got in the car and came right over. I woke Brandon up and told him I was worried about him. He said he felt fine. He denied all of the other symptoms I asked him about.
When my dad got there, he had an old computer and we had a few glitches - dead battery, out of glucose strips, no blood on the first prick, etc. By this time, Brandon was half-awake and teary about being poked. When I took the test the first time it read "HI." My dad and I both stopped in our tracks. He quickly took his own which was normal and I hurriedly took Brandon's again just to be sure. "HI" again. I woke Cole up and we discussed what our options were. I knew we needed to get to the ER. My dad, having had diabetes his whole life thought we could probably just start giving him insulin and getting him down and then go from there. Cole tended to like this idea since it was cheaper than going to the ER, but I was so uneasy. People think that because I'm a nurse, I have the answers. I know all about diabetes, but never with a child, and never with MY OWN child. I called a friend in the ward who is a nurse, feeling really bad that it was so late at night, but needing another opinion. She and I both agreed that it was too risky to do anything at home. Cole and my dad gave Brandon a blessing, a beautiful blessing about his body being helped through the many changes going on and then we quickly got dressed and headed in. As I held him in my arms on the way to the hospital, I knew. I wasn't angry, I wasn't scared. I was comforted. I immediately thought of a quote I had pinned on pinterest just a few days before. I felt comforted knowing that Cole and I could both handle whatever it was. I felt surety in the fact that Brandon could also handle it.
I set to work helping comfort Brandon and explain all that would happen at the hospital. I promised him we would tell him everything that was going on and that we would let him help make the choices. Then I reassured him that all those "accidents" were totally beyond his control and that his blood has so much sugar inside of it that the only way his body knew how to try and get rid of it was to pee it out. He understood what I was saying really well and when we got to the ER, they got us right back.
We were blessed to have an incredible nurse who I had met just a month before in ACLS and PALS classes. She did a great job at explaining everything to Brandon and boy oh boy was he tough. Not a tear when he got his IV - even when they blew a valve, when they poked his finger or when they had to draw blood. He just trooped right through. By the end of a few hours, they told us that we would be admitted. At this point, no one had said anything about diabetes. We knew his sugar was 591 when we got there and they had given him some insulin to get it down. The doctor in the ER was amazed at how fast we had caught it. Most kids with new-onset diabetes don't find it until they are either super sick or in a coma. His body had done a great job at compensating and he was amazed, but didn't feel like we needed to fly him to Primary Childrens. I was so grateful for that. It was surreal, knowing in my heart what was happening, watching my perfectly healthy child sitting in a bed laughing at monster truck races and wishing/not wishing to have confirmed or denied what I already knew.
He was taken by ambulance from the ER to the Peds unit across town (which he LOVED) and then for the rest of the night, we answered questions, filled out paperwork and made arrangements for kids. By sunrise, we still hadn't slept. And then the rush hit. Nurses and doctors and decisions and programs and expense afer expense. Our nurse was amazing though. He was new and I was ready to "throw my weight around" (no pun intended) if I needed to because I know how hospitals can be sometimes, but he let us do things just how we wanted. When they came in and tried to get him to take insulin with breakfast, I think Cole and I both freaked out a little. Afterall, his fasting blood sugar before breakfast was 70 - perfect. And maybe they had just made a mistake. No doctor had talked to us yet and I think we both hoped it could just be some huge freak thing that WAS NOT diabetes. The nurse graciousy allowed us to do whatever we wanted and we elected not to give Brandon any insulin with breakfast. 2 hours later his blood sugar was 270. Our hearts sank. Just after that the doctor, Curtis Carter, the physician on-call for the weekend for Dr. Chamberlain, came in. He was just what we needed. Sitting there in his white shirt and tie, fresh from church, he spent quite a while reviewing all our questions and helping us understand that, no matter how we sliced it or diced it or disected it - Brandon DID have diabetes. It helped to see the facts and understand that it wasn't just a fluke. I think it was a blessing that Dr. Carter was covering for Dr. Chamberlain that day. Dr. Chamberlain knows us well and he knows I know my stuff, so sometimes he just skips over things I need to here in context. Dr. Carter didn't know a thing about us and was just what we needed. The rest of the day was spent with Brandon learning how to prick his own finger and how to give shots into an orange and with text after text and paper and informational packet and paper and informational packet.
I have to say, the nurse were angels in all of this. I love my profession. I am proud of it. And it is amazing to watch other nurses exhibit love and caring. They gave him a new blanket and prizes for walking the halls and told him jokes and teased him and challenged him in Wii games. It was all very heartwarming and just made me so proud to be part of this hospital and this profession. Brandon handled Sunday amazingly. He never cried (except the time I told him he had to eat the orange after he gave it a shot. Oops!) and he absorbed information better than Cole and I did. Brandon and Brock begged for Brock to spend the night and since in my mind there is nothing more beneficial and essential to Brandon's ability to live a normal and healthy life from here on out than Brock - we let them have a slumber party in the hospital room.
Sunday night is a night I don't think I will ever forget. With Cole out like a light, I watched a bond that is so strong it honestly brought tears to my eyes. These boys are 7 - seven. And yet, watching them together, they might as well have been 20. Everytime Brandon had to go to the bathroom, which was quite often, Brock would get up to and help him unplug his IV pump and drag his pole into the bathroom. We are having to collect all Brandon's urine and Brock would get everything set-up and then pull the door closed. Now mind you, Brandon wouldn't let mom or dad or heaven forbid, any of the nurses in the bathroom, but it was never even a question with Brock. Then they would wash hands and head back to bed, with Brock pushing the IV pole and plugging it back in. The played cars for a bit and then, excited beyond measure (and with the permission of the nurses), they took a remote control car (that my dad had given them) out in the hallway of the unit and drove it around. I have that on video....and I will treasure it. Finally worn out, they padded back to the room and picked a movie to watch. Snuggled up in the same bed, they drifted off to sleep. I can only thank heaven above for those two and the love they have for eachother and the strength they are to eachother. When they were babies, Brock could never sleep without Brandon snuggled right up next to him. I believe with all my heart that Brock is Brandon's best healing medicine.
Finally in the wee hours of Monday morning, we all drifted off to sleep and got some much needed sleep. I woke up this morning at 5:30 and decided to rush home and take a much needed shower and change my 2 day old clothes. Getting back around 7:00, I stopped in and said hi to my nurse friends in Same Day Surgery, drawing strength from some familiar, non-emotional faces and headed back to Brandon's room. I ordered his breakfast, curled my hair, and watied for everyone to wake up. I could feel that it was going to be a good day. Dr. Chamberlain came in and talked with us for a long time, reminding me how inspired I was all those years ago to switch to him. He has been the boys doctor since birth (a controversial decision to have preemie twins go to a Family doc), but I love the personal interest he has in our family. I worked with him for years and he just knows us. He talked with us about all the up and coming research and some experimental islet cell regenertaion studies that Brandon might be a candidate for that are going on in Ogden. Just as he was leaving the room, Brandon woke up and said he didn't feel good. He was pale as a ghost, but denied feeling weak. He was very slow to talk and move and shaky. We all assumed he was hypoglycemic and quickly tried to get his sugar taken. We pricked once, twice, but coudn't get any blood. At this point, I admit I started to panic a little. He was so out of it and would cry each time we poked him. There was a flurry in the room and I just wished it would all be a bad dream. Finally we got his sugar checked and it was normal. What?! How could that be with what he was exhibiting. Then all of the sudden he puked - all over my arms, his blanket, his pillow pet - over and over. He just sobbed and whimpered and feeling so helpless and knowing that there are going to be times like this from here on out, made me cry. He tried to get in the shower but could barely stand. His whole, skinny little body shook. (From what I could see, he would only let dad in the bathroom.) Cole carried him back to bed and we checked his sugar again - still okay, but he was still feeling very sick. He wrapped up in a new blanket one of the nurses gave him and, paler than the sheets, started to stare off into space. Man I wish I knew what that little brain of his was trying to think through. Oh how I wished I could just make it all go away and go back to being "normal" - eat when you want, drink when you want, excercise when you want, no shots - especially not 10-12 pokes a day, and oh how I wished I could "see" that time in the future when it would all be okay, when my heart wouldn't race everytime I saw him pale, when my mind wouldn't worry about if he ate enough at lunch or excercised too hard at recess and what that had done to his blood sugar. I wished I could just wish it all away.
After things calmed a bit, our angel nurse (and I do mean that), came in and spoke so sweetly to him. She stroked his hair and helped him understand that it was okay to not feel good. She gave him some medicine to help him quit throwing up and then used brilliant distraction techniques - she brought in a Wii. That cheered him up for a bit as he and Brock played Mario kart. Then, plumb tuckered out and frustrated with life, he started to cry again. At first he wouldn't tell us what was wrong, but then I climbed into bed with him and held him and he said, "I just don't want to have diabetes. I don't want to poke my fingers and get shots." And then he cried and cried and cried himself to sleep.
And that's still what he's doing now - 4 hours later.
And so, that's our journey so far. I think I knew something was on the horizon, a storm brewing, but I never would have dreamed it was this. Our family has been trying to hard to read the scriptures and focus on the important things in life and for some reason I attribute that power and that force that enters your life when you do read the scriptures as the main reason we were able to get Brandon diagnosed BEFORE he got really sick. It is a miracle, it really is. It is proof to me that my Heavenly Fahter loves my son and knows what we need. He is always there and although at times it's going to be rough, He's not gonna leave us alone, so it's gonna be okay. I know that deep down. And I'm pretty sure Brandon knows it too.
Saturday morning was a normal day. Up early and to the gym by 9:00 for basketball games, Brandon and Brock were so excited to play again after a 2 week break for the holidays. As the kids gobbled up their warm muffins and orange juice, Cole and I lectured them about drinking some milk or eating some cheese so that they would have the energy they needed to play good. This has been a big topic at our house the past few weeks. With all the Christmas goodies and treats, we all were eating way too much junk and Cole and I had been trying to help them understand how important protein and other things were for their bodies.
Obligingly slurping up their milk, we hopped in the car and headed out. An hour later, we were all worn out from cheering and watching Brandon and Brock "do their thing" on the court. Brandon played awesome. He's a natural. A born athlete. In everything. We've had comments about him from people we don't know, admiring his baseball skills, his knowledge of the game of basketball, etc. As much as Cole and I love sports, we haven't drilled anything into him - it's just him.
We headed home and spent a few hours doing this and that before enjoying time with friends at a baptism. Then the boys all headed over to grandma and grandpa's house to watch BYU basketball. When they finally got home, we read scriptures (a goal we set and have done everyday this week), and herded the crew to bed, thankful for an 11:00 church time. Cole quickly fell asleep while I wrestled with my mind and the million things I needed to do and take care of. Finally deciding a movie would help, I picked one and then, noting it was almost midnight, decided I would go take Brandon to the bathroom one last time. Over the past 3-4 weeks, we had been having a nightly struggle with him. Every night, within hours of going to sleep he would have an accident. Cole and I were stumped. He was one of those kids that potty trained at 3 and went from diapers to underwear overnight. He has had maybe 2-3 accidents since then...and now...EVERY NIGHT? Something was up. We took him out on dates and tried to see if something was bothering him. We talked to his teachers. We tried making sure he went the bathroom before going to bed, we tried everything we could think of, but night after night he just kept wetting the bed. A few weeks ago, Cole and I had googled bedwetting and read that there were many possible causes for bedwetting after age 7, but noticed that diabetes kept popping up. Ridiculous. Not Brandon. We've always been a titch worried about Brock since Brock is the carbon copy of my dad and my dad has type 1 Juvenile-onset diabetes, but Brandon, not a chance. I did notice over the week that he had been starving, one day eating 2 bowls of Ramen, 4 sandwiches and still crying becasue he was SO hungry. At night, he would try to get water and Cole and I would say, "Not before bed." He would just start bawling and say, "I'm so thirsty though." Part of me had little warning signs going off, I definitely noticed each little thing and the signs kept adding up, however the other part of me could easily dismiss my fears as paranoia and justify his actions as those of a growing, very active kid. Afterall, he was perfectly healthy - not one complaint.
So Saturday night, putting my movie on hold, I ran to help him go to the bathroom so he wouldn't have another accident. (He is an extremely private kid and was becoming VERY upset that he kept having them.) When I got there, he had already had one and was out on the couch. I cleaned up and headed back to bed to watch my movie, but as soon as I pushed play, I knew I needed to do something. I turned to the internet (which I HATE doing because so few things on there are actually medically acurate) and googled 'diabetes in children.' I reveiwed an article on WebMD which basically said everything I already knew, and detailed some of Brandon's symptoms, but definitely not a clear cut case. Then I clicked on a site about Kids With Diabetes. It was full of hundreds of kids and their stories of how they were diagnosed and how they are doing. I clicked on one and quit breathing. I felt flush and nauseous. It was almost Brandon to a "T." I clicked on a few more and as I clicked each one, I began to see more clearly that one of my greatest fears was probably true. Compelled at this point, I got out of bed and called my dad. It was 12:30am, but he was still awake. I asked if I could use his blood computer to check Brandon's sugar. He wondered why, afterall the kids had just been there a few hours before and Brandon was fine. I told him I just had a feeling and I needed to know. He got in the car and came right over. I woke Brandon up and told him I was worried about him. He said he felt fine. He denied all of the other symptoms I asked him about.
When my dad got there, he had an old computer and we had a few glitches - dead battery, out of glucose strips, no blood on the first prick, etc. By this time, Brandon was half-awake and teary about being poked. When I took the test the first time it read "HI." My dad and I both stopped in our tracks. He quickly took his own which was normal and I hurriedly took Brandon's again just to be sure. "HI" again. I woke Cole up and we discussed what our options were. I knew we needed to get to the ER. My dad, having had diabetes his whole life thought we could probably just start giving him insulin and getting him down and then go from there. Cole tended to like this idea since it was cheaper than going to the ER, but I was so uneasy. People think that because I'm a nurse, I have the answers. I know all about diabetes, but never with a child, and never with MY OWN child. I called a friend in the ward who is a nurse, feeling really bad that it was so late at night, but needing another opinion. She and I both agreed that it was too risky to do anything at home. Cole and my dad gave Brandon a blessing, a beautiful blessing about his body being helped through the many changes going on and then we quickly got dressed and headed in. As I held him in my arms on the way to the hospital, I knew. I wasn't angry, I wasn't scared. I was comforted. I immediately thought of a quote I had pinned on pinterest just a few days before. I felt comforted knowing that Cole and I could both handle whatever it was. I felt surety in the fact that Brandon could also handle it.
I set to work helping comfort Brandon and explain all that would happen at the hospital. I promised him we would tell him everything that was going on and that we would let him help make the choices. Then I reassured him that all those "accidents" were totally beyond his control and that his blood has so much sugar inside of it that the only way his body knew how to try and get rid of it was to pee it out. He understood what I was saying really well and when we got to the ER, they got us right back.
We were blessed to have an incredible nurse who I had met just a month before in ACLS and PALS classes. She did a great job at explaining everything to Brandon and boy oh boy was he tough. Not a tear when he got his IV - even when they blew a valve, when they poked his finger or when they had to draw blood. He just trooped right through. By the end of a few hours, they told us that we would be admitted. At this point, no one had said anything about diabetes. We knew his sugar was 591 when we got there and they had given him some insulin to get it down. The doctor in the ER was amazed at how fast we had caught it. Most kids with new-onset diabetes don't find it until they are either super sick or in a coma. His body had done a great job at compensating and he was amazed, but didn't feel like we needed to fly him to Primary Childrens. I was so grateful for that. It was surreal, knowing in my heart what was happening, watching my perfectly healthy child sitting in a bed laughing at monster truck races and wishing/not wishing to have confirmed or denied what I already knew.
He was taken by ambulance from the ER to the Peds unit across town (which he LOVED) and then for the rest of the night, we answered questions, filled out paperwork and made arrangements for kids. By sunrise, we still hadn't slept. And then the rush hit. Nurses and doctors and decisions and programs and expense afer expense. Our nurse was amazing though. He was new and I was ready to "throw my weight around" (no pun intended) if I needed to because I know how hospitals can be sometimes, but he let us do things just how we wanted. When they came in and tried to get him to take insulin with breakfast, I think Cole and I both freaked out a little. Afterall, his fasting blood sugar before breakfast was 70 - perfect. And maybe they had just made a mistake. No doctor had talked to us yet and I think we both hoped it could just be some huge freak thing that WAS NOT diabetes. The nurse graciousy allowed us to do whatever we wanted and we elected not to give Brandon any insulin with breakfast. 2 hours later his blood sugar was 270. Our hearts sank. Just after that the doctor, Curtis Carter, the physician on-call for the weekend for Dr. Chamberlain, came in. He was just what we needed. Sitting there in his white shirt and tie, fresh from church, he spent quite a while reviewing all our questions and helping us understand that, no matter how we sliced it or diced it or disected it - Brandon DID have diabetes. It helped to see the facts and understand that it wasn't just a fluke. I think it was a blessing that Dr. Carter was covering for Dr. Chamberlain that day. Dr. Chamberlain knows us well and he knows I know my stuff, so sometimes he just skips over things I need to here in context. Dr. Carter didn't know a thing about us and was just what we needed. The rest of the day was spent with Brandon learning how to prick his own finger and how to give shots into an orange and with text after text and paper and informational packet and paper and informational packet.
I have to say, the nurse were angels in all of this. I love my profession. I am proud of it. And it is amazing to watch other nurses exhibit love and caring. They gave him a new blanket and prizes for walking the halls and told him jokes and teased him and challenged him in Wii games. It was all very heartwarming and just made me so proud to be part of this hospital and this profession. Brandon handled Sunday amazingly. He never cried (except the time I told him he had to eat the orange after he gave it a shot. Oops!) and he absorbed information better than Cole and I did. Brandon and Brock begged for Brock to spend the night and since in my mind there is nothing more beneficial and essential to Brandon's ability to live a normal and healthy life from here on out than Brock - we let them have a slumber party in the hospital room.
Sunday night is a night I don't think I will ever forget. With Cole out like a light, I watched a bond that is so strong it honestly brought tears to my eyes. These boys are 7 - seven. And yet, watching them together, they might as well have been 20. Everytime Brandon had to go to the bathroom, which was quite often, Brock would get up to and help him unplug his IV pump and drag his pole into the bathroom. We are having to collect all Brandon's urine and Brock would get everything set-up and then pull the door closed. Now mind you, Brandon wouldn't let mom or dad or heaven forbid, any of the nurses in the bathroom, but it was never even a question with Brock. Then they would wash hands and head back to bed, with Brock pushing the IV pole and plugging it back in. The played cars for a bit and then, excited beyond measure (and with the permission of the nurses), they took a remote control car (that my dad had given them) out in the hallway of the unit and drove it around. I have that on video....and I will treasure it. Finally worn out, they padded back to the room and picked a movie to watch. Snuggled up in the same bed, they drifted off to sleep. I can only thank heaven above for those two and the love they have for eachother and the strength they are to eachother. When they were babies, Brock could never sleep without Brandon snuggled right up next to him. I believe with all my heart that Brock is Brandon's best healing medicine.
Finally in the wee hours of Monday morning, we all drifted off to sleep and got some much needed sleep. I woke up this morning at 5:30 and decided to rush home and take a much needed shower and change my 2 day old clothes. Getting back around 7:00, I stopped in and said hi to my nurse friends in Same Day Surgery, drawing strength from some familiar, non-emotional faces and headed back to Brandon's room. I ordered his breakfast, curled my hair, and watied for everyone to wake up. I could feel that it was going to be a good day. Dr. Chamberlain came in and talked with us for a long time, reminding me how inspired I was all those years ago to switch to him. He has been the boys doctor since birth (a controversial decision to have preemie twins go to a Family doc), but I love the personal interest he has in our family. I worked with him for years and he just knows us. He talked with us about all the up and coming research and some experimental islet cell regenertaion studies that Brandon might be a candidate for that are going on in Ogden. Just as he was leaving the room, Brandon woke up and said he didn't feel good. He was pale as a ghost, but denied feeling weak. He was very slow to talk and move and shaky. We all assumed he was hypoglycemic and quickly tried to get his sugar taken. We pricked once, twice, but coudn't get any blood. At this point, I admit I started to panic a little. He was so out of it and would cry each time we poked him. There was a flurry in the room and I just wished it would all be a bad dream. Finally we got his sugar checked and it was normal. What?! How could that be with what he was exhibiting. Then all of the sudden he puked - all over my arms, his blanket, his pillow pet - over and over. He just sobbed and whimpered and feeling so helpless and knowing that there are going to be times like this from here on out, made me cry. He tried to get in the shower but could barely stand. His whole, skinny little body shook. (From what I could see, he would only let dad in the bathroom.) Cole carried him back to bed and we checked his sugar again - still okay, but he was still feeling very sick. He wrapped up in a new blanket one of the nurses gave him and, paler than the sheets, started to stare off into space. Man I wish I knew what that little brain of his was trying to think through. Oh how I wished I could just make it all go away and go back to being "normal" - eat when you want, drink when you want, excercise when you want, no shots - especially not 10-12 pokes a day, and oh how I wished I could "see" that time in the future when it would all be okay, when my heart wouldn't race everytime I saw him pale, when my mind wouldn't worry about if he ate enough at lunch or excercised too hard at recess and what that had done to his blood sugar. I wished I could just wish it all away.
After things calmed a bit, our angel nurse (and I do mean that), came in and spoke so sweetly to him. She stroked his hair and helped him understand that it was okay to not feel good. She gave him some medicine to help him quit throwing up and then used brilliant distraction techniques - she brought in a Wii. That cheered him up for a bit as he and Brock played Mario kart. Then, plumb tuckered out and frustrated with life, he started to cry again. At first he wouldn't tell us what was wrong, but then I climbed into bed with him and held him and he said, "I just don't want to have diabetes. I don't want to poke my fingers and get shots." And then he cried and cried and cried himself to sleep.
And that's still what he's doing now - 4 hours later.
And so, that's our journey so far. I think I knew something was on the horizon, a storm brewing, but I never would have dreamed it was this. Our family has been trying to hard to read the scriptures and focus on the important things in life and for some reason I attribute that power and that force that enters your life when you do read the scriptures as the main reason we were able to get Brandon diagnosed BEFORE he got really sick. It is a miracle, it really is. It is proof to me that my Heavenly Fahter loves my son and knows what we need. He is always there and although at times it's going to be rough, He's not gonna leave us alone, so it's gonna be okay. I know that deep down. And I'm pretty sure Brandon knows it too.
Saturday, January 7, 2012
Blossoming
In my previous post, I bemoaned the fact that our children grow up so quickly. In this most, I praise the joy that it brings to watch them grow up and blossom. Kaitlin is involved in the school choir this year. She was asked to sing a duet on the song, "Where Are You Christmas." She sings beautifully. The school choir was able to perform in several big venues this season and I was so grateful that I was able to work my schedule out so that I could be there. The first place was the Washington City Tree Lighting Festival. It was so much fun to gather around fire pits and sip hot cocoa while the local schools' choirs performed! It was cold and it was chaos, but they kids sounded awesome and Kaitlin was hooked! She fell in love with choir that night and talked all night about how fun it was to perform!
The next venue was the Dickens' Festival. Krystal and I both went and watched Kaitlin and her choir perform here. This was the first time that Kaitlin sang her part and she did awesome! It was kind of funny though because the whole time I was videotaping, Kris and I kept mentioning how serious she looked. She didn't crack a smile, not once! In fact, she was almost scowling! We weren't sure what was going on with her, but I figured someone had ticked her off my misbehaving! (She is a strict rule-follower - at least she tries really hard to be!) After they were done, Kris and I went to give her a hug and she teared up. Apparently her back was hurting so bad she thought she was going to pass out. That broke my heart. We tend to forget that she has a tumor on her spinal cord. She is such a trooper and it hadn't bothered her in a while, but we have noticed that it tends to bother her the most when she has a growth spurt and when she is under pressure. As much as she didn't seem affected by her solo part, her little back told us she was more nervous than she let on:( I was so proud of her for carrying through and pushing herself. She never ceases to amaze me.
After the Dickens' Festival, the choir went on a nursing home tour. They went and sang at several of the nursing homes and Kaitlin got to do her song a few times. She was so touched by that experience. She came home and went on and on about how neat it felt to sing to those people. I love that little girl and just look at how beautiful she is!
Then, toward the end of the year, was the Christmas Choir concert! The auditorium was buzzing with energy and those little guys sang their hearts out. It was incredible and Kaitlin performed her solo perfectly!
What a fun time to watch her blossom into such an amazing girl!
Can my Baby Girl Really be 3?!
I've decided that I'm not going to try to catch up on all the things that I've missed posting about, but having said that, there was no way I could skip Allison's birthday! I know we all say this, but is honestly feels like just yesterday I was lying in bed, sicker than a dog and wishing, hoping and praying that my baby would be fine and that we would both make it through that horrible ordeal! Allison's entrance to our life was not just circumstance. From the moment I knew I was pregnant, I knew who she was. When I began being so sick and there was talk of the baby's health, miscarriage, etc., I just knew things would be okay. For much of her pregnancy, I laid alone in my room (since the smell of anything, or even the movement on my bed would make me start throwing up again). During those 5 months were I literally lay in bed hooked up to IV's and injecting myself with anti-nausea meds and vitamins, I had many conversations with this little girl. Even before I had the ultrasound, I knew she was a girl and I knew what we would name her. I haven't always had experiences like this, but with her, it was distinct. I can't even say how much I loved her and how much I wanted to have her and bring her into our family. When she was delivered healthily at only 35 weeks, I knew she was a fighter and I knew she wanted to be here too!
The past 3 years have flown by and there is no doubt in my mind that she is just what this family needed. I feel bad because with 3 older kids, I probably haven't recorded as much "just Alli" stuff as I should have. She has so many quirky mannerisms and behaviors and so many endearing phrases and intonations. She is a laughter bug in this home! Now, that's not to say that she is all smiles, because she definitely has an attitude and is a pro-pouter, but all the cute stuff sure makes up for those little inconveniences!
When it was her birthday, the kids woke her up singing the "Happy Birthday Song!" The rest of the day she sang it to herself! Once I got out the balloons and the board, it was official! Every time she walked past it, she said, "It's MY birf-day!"
Now here's where the true colors of Allison come out! Rather than make her wait while we all ate cake, I decided we should let her open her presents first! Grandma and Grandpa Roundy came down from Richfield to watch the kids basketball games and celebrate and Grandma and Grandpa Stewart were there too! Ladd came, but Krystal had to work.
Here she is all smiles, especially when I said we would open presents first!
Now she is pouting because I told her she couldn't open all the presents under the tree! (She had a hard time understanding the difference between Christmas and birthday at first!)
Now she's giving me the death look instead of smiling because she still has a bruised ego from being told, "No!"
And...now she's back to happy again! Geesh! This little girl! She had such a fun birthday and loved all of the things her grandparents spoiled her with! Of course, her favorite toy was a Dora blow dryer and comb that Ladd gave her! She styles her hair with it all the time!
I just can't imagine our life without this little thing and love the energy, snarkiness and pure delight she brings into our home! This is the poem I put in her baby book and describes my relationship with Allison to a "T!"
My tiny little baby, I loved you from the start.
You are my precious miracle, held closely to my heart!
Happy Birthday, Miss Allison McKell!
It's the Most Wonderful Time of the Year
I don't even know how to begin to describe Christmas this year. If I even uploaded half of the pictures I have taken, it would require hours and hours merely to get them onto the blog! Therefore, I have decided to simply share the top elements that will forever be ingrained in my memory when it comes to Christmas this year!
It's no secret that I LOVE Christmas! It has always been my favorite holiday to celebrate! As I have grown older, I have grown to love it even more than I did when I was a kid and simply excited for all the presents. Now I love Christmas because I love decorating my house, looking for and making yummy recipes, making gifts for the kids' classmates and teachers and searching for the perfect gift for those I love! I love the way my house looks and feels with the tree lights on and the fireplace going. I love curling up on the couches each night and reading Christmas stories by the light of the Christmas tree. I love more than anything the spirit of giving and goodwill that exists in everyone at Christmastime.
This year was particularly enjoyable: 1) because it was the first year out of 11 that neither Cole or I had to work during Christmas. That may seem like something minor, but it was so much fun to have a few days all together both before Christmas and then after, too. 2) The commercialism of Christmas did not invade and take over the holiday this year. Yes, we still enjoyed shopping and gift giving, in fact for the first time, each of the kids got to go on a solo date with mom to pick out gifts for each other. That single addition to this Christmas was amazing. I was so blessed to be the "date" as they ran around the store in search of the perfect gift! It was heart-warming to watch them discover the joy of giving. Thankfully, we got our Christmas shopping done quickly. We spent time searching for the right gift - meaningful for what it was and what it represented, rather than what it cost. All said and done, we were out of the stores by the first week in December and were able to relax and enjoy the rest of the days leading up to Christmas.
Christmas bring several hallmarks or traditions to our home. I love traditions and the sense of home and love that accompany them.
Our first hallmark is Christmas pajamas. This had been a source of confusion for several years because I have always had in mind a particular style of jammies I wanted my kids to wear for Christmas and have always looked forward to seeing my little ones in matching Christmas PJ's. On the other hand, since becoming a grandma, my mom has also wanted to give Christmas pajamas and has her own style she likes to give. Some years I would call her and tell her to come buy some PJ's I loved, taking the fun out of it for her. And other years, she would buy what she wanted and I was always a little sad they weren't like I had imagined. Therefore, this year I ingeniously came up with a new plan. I wrapped Christmas jammies from Cole and I and laid them under the tree as the first gifts once the tree was finished. We had a great little FHE about Christmas and the gifts we can give without having any money at all. When is was finished, we let them open their pajamas! It set a beautiful tone to our Christmas season and I just loved seeing the kids in their matching pj's all month long! It is definitely a tradition that we'll be keeping!
Sitting on Santa's lap is another hallmark of Christmas! I am just grateful I had the settings on my camera all ready to go and that it took pictures quickly because this Santa didn't waste any time! I love that even Allison is smiling! (And that sweet Kaitlin humored her mama by sitting on Santa's lap even though she didn't want to!)
Each year on Christmas Eve day, we bake cookies for Santa. I love watching them decorate them so purposefully and passionately and am always amazed at how cute their cookies turn out!
The next hallmark of Christmas in our family is our Christmas Eve nativity reenactment. Of course, it never turns out exactly how it should - something always goes wrong, a cast member misses their cue, the director loses her voice, the narrator changes the words in the story, the shepherd disappears, etc., but somehow in the simple act of watching the sense of reverence the kids feel as they act out the characters, the Spirit always enters and the evening ends with a beautiful peace about it. I love our Christmas nativity reenactments, even if they never turn out just as planned!
Christmas Eve is marked by a sprinkling of Reindeer Food in the grass. This was the best picture I could get since those "year-round" pj's were awfully chilly outside!
In our home Christmas is also marked by Santa Claus. Yes, this house BELIEVES - hopefully for a long, long time!
Christmas Eve wouldn't be complete without the anticipation and excitement of sibling gift exchange. I love, love watching their faces as they watch their brother/sister open the gift they so lovingly picked out. To me, that look and joy is what Christmas is all about.
And of course Christmas wouldn't be Christmas without the early morning exclamation of joy coming from the front room to wake us up! This year Brock woke up at 4:30 and exclaimed, "Wow! He came!" Within minutes Brock and Brandon were both in the front room chitter-chattering away! The girls stayed asleep and after several denied requests to open gifts, the boys finally fell asleep on the couches until around 8:00.
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