Usually place is a location, a city or a building, but the place that I’m at right now (aside from my home) is a very challenging one. I’m in a sad place, mourning the loss of my baby, taking care of my children who have the flu, trying to figure out my new normal. Here I am not only trying to keep up with life and family, but also trying to get myself into a healthy place. My blood pressure has been high for weeks, now I’m starting meds to bring it down. My kids have been sick with the flu, and I’m taking care of them and praying that Tony and I don’t get it also. My house is a disaster and I don’t have the energy to clean more than just the bare minimum. This is the place I am right now, it’s not a good place, it’s a place that I need to work my way out of. Fighting through the tears and the sadness, forcing myself to clean a little every day, to make healthy meals, and to start exercising again. I can do it, I’ve done it before, but this time it’s a little more than before, a little harder, a little scarier. I will work my way to a better place, slowly and one step at a time, with my faith in God who will help me to get through this tough place. And my loving husband who is constantly urging me to take the next step, while still supporting me where I am right now. Through my boys (once they are healthy again) who won’t let me sit still for very long. I know I will get out of this place and into one much better.
This post is a part of the weekly FMF link-up
Yesterday was such a crazy and emotional day. We started out meeting with the funeral home and then the cemetery to arrange for Peters burial and headstone. We planned his funeral for Wednesday afternoon, that was emotional enough for one day. After we were done we stopped by my parents house to pick up G and were visiting with my parents for a bit, relaxing and chatting. Then I got a voicemail from TJs school. He had a fever and the nurse asked if I could pick him up. I called the nurse and told her we would be there shortly, then loaded up G and all his things and headed up the hill to the school. TJ looked pretty miserable, the nurse said his fever was 100 degrees, he needed my help to walk to the car. We got home and watched a movie (I took a nap on the couch). When I woke up TJ still had a fever, after we’d given him some children’s IB. Then I started worrying it might be strep throat. So, I had tony look in his throat for white spots and called the pediatrician to see if we should bring him in. I ended up deciding, to take him to urgent care to find out if it was strep throat, because if it was we could get him on antibiotics and hopefully TJ would be better soon. So I dragged him to the urgent care 2 towns over and checked him in. Tony stayed home with G to make dinner and get G to bed on time.
Poor TJ was miserable the whole time we were at urgent care. He kept asking if we could go home. We waited over an hour and I kept thinking, maybe we should just go home, he would be more comfortable in his bed. But the. The hour and a half would’ve been wasted for nothing, so we kept waiting. At about the 2 hour mark, we were called back and I had to wake TJ up to get him to go back. They took TJs vitals and put him in a room. The nurse asked lots of question and then said she would do a strep test and a flu test. Flu had not even entered my thoughts.
He was swabbed in his nose and in his throat and then we waited, 5 minutes for the strep test and 15 for the flu. TJ fell asleep again, the poor kid. I was texting Tony to keep him updated, it was almost 8 pm at this point. The physicians assistant came in and said TJ was negative for strep but positive for Influenza A. He talked down tamiflu, saying not many doctors are prescribing it because it typically only lessens the flu by 1 day but that it can make it less contagious. I asked for tamiflu. We had to switch pharmacies because Costco closes at 8:30 and we wouldn’t be able to get up the hill by then. So I requested Safeway, because we had used them before. We finally get to Safeway and the pharmacy tech said they didn’t have any in stock, that it would be in by 11am the next day. I said that I needed it tonight (the sooner he started it the better it would work) and asked if she could call rite aid (just across the street) and see if they had any. She did and they did, then she told me it would be a bit because she had to type up the prescription to fax it over. When I asked if she knew about how long that would take, she snapped at me and said when we can get to it.
So, I grabbed some children’s Tylenol and a bunch of Gatorade and headed to a register you buy it and get back to the car where TJ was waiting for me. He didn’t want to get out of the car at either pharmacy. I drove over to rite aide and went back to the pharmacy. They hadn’t received the prescription form Safeway yet, but the tech took all our info so we would be ready when it came. I wandered around rite aide, I ended up in the candy aisle and bought some red vines, which I then ate while I continued to wander and wait. Not the healthiest snack, I know. Eventually the prescription came in and I picked it up and headed back to the car. I convinced TJ to drink some Snapple tea (tony had sent with us) and we headed home.
When we got home I tried to get TJ to get out of the car and he said,”I want to stay in the car” I told him he didn’t because we were home. 😜 he came in, ate a yogurt (all he wanted for dinner-at 9pm) I gave him his first dose of tamiflu and Tony got him to poke his finger for a bg check, tested for ketones, and drink a few sips of Gatorade, giving him insulin for all his carbs and his blood sugar.
Then we went upstairs and made a temporary bed for him in our spare room. I didn’t want him sharing his germs with his brother while they slept.
After TJ was settled in, Tony walked on the treadmill while I embroidered a little blanket for Peter to be buried with. Then I went to bed and feeling overwhelmed by everything we are dealing with right now, I cried myself to sleep. Tony came in and tried to comfort me, and get me to walk on the treadmill, but I was just done for the day.
He woke up in the middle of the night with a tummy ache, and again at 5 am when we gave him another dose of Tylenol. Tony and I managed to sleep in until almost 9 am before we had to get up and feed the boys and get ready for the day. I decided to keep TJ quarantined today in his sick room. Tony set up a tv in there and I got him his kindle, and some books. Hopefully this will minimize the spreading of germs.
Plus he’s in the same room as our Saint Panteleimon icon, so we will just ask him to intercede for TJ to have a quick recovery, and to keep the rest of us from getting sick. Saint Panteleimon pray to God for us!
Tony and I just spent two nights in the hospital birth center to a deliver a baby that would never grow up or be held. Every nurse, doctor, midwife, social worker, and chaplain tried so hard to be empathetic, caring, and supportive but it just made it more emotional for us. I don’t mean that they should’ve been harsh or abrasive, but sometimes the quiet understanding felt awkwardly long, and almost every time they talked to us we cried (which I know is normal).
I had so many experiences this week, that I’ve avoided or just never thought I’d have to go through. This is our second miscarriage but because the pregnancy was further along it was a completely different experience. With the first, we stayed home and let things happen naturally, there was no body to hold or decide what to do with after. It was emotional and I had a few days of physical issues to worry about, but once it was done, we just dealt with emotions and memories. This time I was induced. I had always avoided being induced with previous pregnancies. They tried to convince me to induce G when he was one week late, but the doctor let me wait it out, once he passed a non-stress test. This time they called us at 6:30 pm to be at the hospital at 7:30, took us into a room and got an IV in me, drew blood (made me cry a few times) and gave me medicine to induce. We had to spend the night while they Gave me meds every four hours and kept asking me to let them know if I needed any pain meds. I wasn’t in much pain overnight (except from the blood pressure cuff 🙄). They kept up the induction meds every 4 hours through the morning at 9:30 am I asked for pain meds in my IV, but before they could get them, I delivered the baby, little Peter. My pain ended when he was born, so no more need for those meds. They gave me more induction meds, to help deliver the placenta, and gave us time with Peter. They came in and talked to us about what to do with his remains, put him in a blanket and a hat, and gave us more time with him. One of the nurses made him a little bracelet with his name on it. It was so sweet and unexpected (more tears).
We decided to have him buried and asked for a priest. They sent in a chaplain pastor, and we asked her to pray for our little Peter. After a long while (and more tears) she went and got the social worker, who helped us plan for his burial (and caused even more tears).
A little while later I partially delivered the placenta, and they had to “help” me deliver the rest. It was painful and they kept saying that I was doing so good. As if I had a choice, well I guess I could’ve opted for a d&c but who wants surgery unless it’s necessary? Not me. Once they were done-and 90% sure they got it all- I was put on antibiotics. Not long after another doctor came into the room and told me that my bloodwork was abnormal, just the test that indicated that it was pregnancy induced hypertension-which up until then they had said that’s only after 20 weeks in pregnancy and couldn’t be the cause of my high blood pressure. This was when we found out that instead of being sent home that afternoon, like we thought, we’d have to stay another 24 hours to see if that blood test went back to normal (which it should have right after delivery). So a second blood draw then and another one at 5am to see if I was getting better, plus more antibiotics every 8 hours because of the placenta issues. Another night of yucky hospital food, interrupted and uncomfortable sleep. With more pokes and blood pressure checks, and being woke up to take meds. Just making a horrible experience last longer. We had Peter taken to a funeral home that evening and had to say goodbye to his little body.
Tony and I talked about Peter and about our previous miscarriage, which was so early we had no idea what the gender was. We both agreed that since Peter was a boy and our first two were boys, our previous miscarriage was most likely a boy also. So we decided to give him a name too. We both quickly agreed on Luke. Now both our babies in heaven have names.
The next morning we finally got some good news, they were going to discharge us. We had to wait for the midwife to come see us, but the fact that we didn’t have to wait the full 24 hours was awesome. We had to listen to lots of advice from our new nurse, but while she was empathetic it wasn’t the tear inducing, quiet, sometimes awkward empathy everyone else was giving us. It was more practical talk (sometimes unnecessary) advice. Plus she was gonna let us leave!
We thought that was hard and then we had to tell the boys that their little brother was already in heaven and could never be snuggled. More tears. They were so excited to be big brothers and help take care of their new little brother, and now they wouldn’t get that opportunity.
Worst week ever. I know there will be more tears and I appreciate all the empathy and support, even if it does make me cry.
I was at a regular checkup, expecting to find out what the midwife thought about my high blood pressure, hear my baby’s heartbeat, and then go visit my parents. But it wasn’t a regular checkup. We talked about my blood pressure, and some tests she wanted me to do. Then she used her little machine to find the baby’s heartbeat. But she couldn’t find it. She acted like it was pretty common and got me next in line for an ultrasound to check on the baby and find the heartbeat. But she couldn’t see any movement or a heartbeat. So, she went and got an OB that works in her office and had her try, by this time I knew something was wrong. I was praying that the ob would find the heartbeat and say everything was fine, but was already trying to hold tears in. I was 18 weeks, this shouldn’t be happening. Don’t get me wrong, I know it happens. I know baby’s are stillborn at 40 weeks. But after my last miscarriage at 12 weeks,I just couldn’t believe that I was losing this baby at 18 weeks. It just wasn’t fair.
The OB came in and used the ultrasound machine to try to find a heartbeat, but she couldn’t. My heart broke into a million pieces but only a few tears escaped. They told me that this far along in pregnancy, I would need to be induced to deliver this baby. A few more tears fell. The midwife asked if I needed a note to get out of work, and I said, “no, I think I’ll do better if I’m distracted.” I texted tony, went and had a blood draw done, and went home for a bit. All this time I would cry a little in the car and then pull myself together because I was out in public and really didn’t want any one asking me what was wrong, because then the floodgates would open. Which kind of happened when I talked to Tony and when I told my parents. But I was able to pull myself back together, and keep moving along with my day. I worked two days and only teared up once or twice each day, when it was brought to the front of my thoughts. I don’t think anyone I interacted with even realized I was going through this emotional overload.
I’m scheduled to be induced, I haven’t told the boys but I have a plan for them while I spend the night in the hospital to deliver a baby that I won’t get to watch grow up. Another baby that made it to heaven before me. This is so hard. I wake up at 4 am and can’t go back to sleep. All I can think about is my baby that I was so excited to snuggle and watch grow. And then I cry.
I wish I knew why. I want to understand what I’m supposed to learn or gain from this second loss. I know that God has a plan, and that, for some reason, this is a part of it. I’m trying to trust Him but it’s hard when it hurts so much. Please keep us in your prayers while we try to find a new normal, again, in our lives.
You know how worried you get when your kid has a sore throat or a fever? A parent of a kid with T1D has an extra level of worry. Not only can blood sugars be too high (or too low-depending on the illness) but even if they are in range we have to worry about ketones.
TJ has been sick today and even though he has mostly been in range, he’s had ketones all day. I’ve been giving him extra insulin and making him drink lots of water trying to get them out if his system, but they are still there. I’ve been trying to bring them down, but they’ve been going up and down. He’s hardly eaten anything (a normal mom worry) but has been getting lots of extra finger pokes (to check for ketones and how high they are).
I’ve texted Tony more times today (while he’s at work) than I would normally. Just letting him know how TJ is feeling, his blood sugar, ketone levels, and what I’ve been doing to get rid of the ketones.
It’s pretty frustrating that the insulin I give him to bring down his blood sugar and get rid of the ketones can kill him if I give him too much. There is no exact science to know how much insulin will get rid of the ketones with out crashing his blood sugar to a dangerous low, so I give some and wait and then give a little more.
I spent the day sitting on the couch with my boys just snuggling and watching movies. My kitchen is a disaster and I haven’t worked on any projects I’m trying to get done. Even now that the boys are in bed, I’m still going up and poking periodically and dosing, but I’m too exhausted to get anything done.
We have been very lucky that TJ hasn’t had ketones very many times and that we’ve been able to get rid of them at home. If they get too high and don’t come down, it means a trip to the hospital. I thank God that we haven’t had to go back to the hospital since his diagnosis.
Sorry if this is just a long ramble. It’s diabetes awareness month and I guess this is my awareness post. It was too long for a Facebook post, so I decided to make it a blog post.
We went to the pumpkin patch!
Went on some fall walks.
And carved pumpkins with Uncle Joe.
We drank hot spiced cider and collected leaves.
Trick or treating with friends was so much fun! We hope you had a wonderful fall, just like we did! 🍁 🎃
We had lots of fun at the event JDRF put on at Oddessy 1 in Tacoma. The boys played arcade games and won tickets to earn prizes. They got to play with their T1 friends and their siblings in a big play area with tunnels and climbing areas. While I visited with some of my Dmom friends who understand how tough life is with T1D.
Having never been to Oddessy 1 before, I wasn’t sure what to expect. I thought it would be a big play area or bouncy house place which meant that TJs blood sugar “bgs” would drop from all the activity. So I put TJ on a temp basal (which changes how much insulin he gets every hour into his body) to 75%-giving him less insulin to keep his bgs higher-hopefully keeping him in range during all the fun.
When we first arrived the boys were given tokens to play arcade games. Then I wondered if I should cancel his temp basal, light activity doesn’t (usually) crash bgs. But I left it, hoping that he didn’t go too high.
A couple friends who have been there many times told the boys about the play area on the other side of the building, so we all headed over there. I sat with my friends and talked while the boys ran and climbed and played. After that they played laser tag and ran around some more. I was glad that I had left his temp basal on at this point because even with it giving him less insulin he was starting to slowly drop. I gave him a few fruit snacks (he splits the pack with his little brother) and then we all headed in to play laser tag! Moms and G (he was afraid to go in with out me) against TJ and his 6 friends. We had fun running around shooting each other, surprising each other as we rounded corners and laughing so hard! The kids won, but they out numbered us, it doesn’t really count right? 😜
The only picture I got that night. Guess I was too busy talking to my friends.
After all that fun we said our goodbyes and headed home (a 45 minute drive 😢 at 8 o’clock at night). That’s when TJs bgs started dropping hard, just as we got in the car.
See where the line turns red? That is when he was double arrows down and 70, a scary place for his blood sugars to be. Luckily we had plenty of sugary treats to catch it before he got much lower. He ate one of his prizes that he bought with his tickets: a sour straw then Dexcom showed him 1 arrow down and he said he was really hungry. I gave a small airhead the JDRF coordinators provided for lows at the event. I’m so thankful they gave us some of the leftover lows treats because I knew where they were and could easily grab them while driving.
TJs bgs came up into range and his temp basal stopped itself (we had set it for 4 hours). We finally got home and the boys were in their beds when I noticed Dexcom showed TJs bg spiking over 200 with a straight up arrow. Then I started wondering if I should dose for his high bg. If I dose him it will bring his numbers back into range, but all his activity earlier in the evening can cause delayed lows to happen while he’s sleeping. If there are no delayed lows he will run high all night long which can also be dangerous.
I decided to not dose him and see if he had a delayed drop from all the fun he had.
Looks like I made the right call (this time). He came down over night and was even a little low this morning, with no extra insulin.
This disease looks so easy from the outside. T1s just count carbs and get insulin and can live a normal life, right? No, that’s just a small part of it. There are so many other things that we have to think about every day and many times we are guessing and praying that we guessed correctly. This is why caregivers and people with T1D burn out they are constantly thinking about T1D and second guessing their decisions. It’s something we think about 24/7/365, whether TJ is with us or not, when he’s sleeping or awake. This is why we need to find a cure for Type 1 Diabetes.
Diabetes can still beat you. This disease is so frustrating because no matter how good you are at taking care of it, it still throws curveballs that you can’t predict, you just have to be prepared to react.
We battle blood sugars to keep this boy alive 24/7/365. Most of the time we are able to keep his numbers between 80 and 200 but then Diabetes pulls random crap and forces us to re-strategize, change pump settings, and fight harder.
This has been one of those months.
His blood sugars would spike every night. I changed his basal rates in larger amounts than I have ever changed them before and still couldn’t get his numbers into range overnight. I even called the Endocrinologist for help adjusting his sensitivity (how much insulin the pump will give to bring down high blood sugar). The nurse I spoke to was surprised by how much I had changed his basal rates since our last appointment 3 months ago. But, after she consulted two other nurses, the changes they suggested were even more basal insulin at night and a much more aggressive sensitivity factor than was previously programmed in his pump (in other words: I made appropriate adjustments).
Two nights of the new settings and I’m ready to bump them up again. He’s still high all night. But we are not giving up!
What is causing this struggle? My guess is a growth spurt. It could be other hormones pumping through his veins at night or stress, or maybe because we have been less active this summer. It could be any number of factors. I’ve heard this is going to get even worse once puberty hits, and he’s getting really close to that 😳.
The good news is that, right now, he doesn’t realize the battles we engage in for him. He’s living life (granted with more to think about and deal with than most kids), having fun, and mostly sleeping through the night, while we fight this battle for him. When he’s an adult and living on his own, it will become his battle. But for now, we wake up in the middle of the night to fight, and mostly win, this battle for him.
While TJs A1c dropped every time we went to the Endo, the closed loop purpose was lost in translation.
We started Medtronic’s 670G system thinking that we would spend less time thinking about Diabetes/numbers and have more time to just live a normal life. Unfortunately Medtronic’s sensors are still so finicky/sensitive that this was not the case.
We had (maybe) 3 weeks of good sensors/numbers where we thought that this system could work for our family.
But since those 3 weeks were spread out over 6 months, it was definitely not working.
Most of the time we had to think MORE about numbers/diabetes than we were before the closed loop. We had to keep reminding TJ to check his sensor bg before poking (to make sure they were less than 30% off) where as with Dexcom, it wouldn’t matter.
Always having to ask him for his bg (because it only shows on his pump) was also frustrating for him and us.
This poor kid started yelling at his pump because it kept asking for a bg (even right after he entered a bg). The dreaded loop happened more often than not and really made it tough on our poor boy. He was the one that had to clear the repetitive aperts, because they alerted on his pump, not on a separate device. Although, at night, he still slept through every alert, even if we couldn’t hear them because he was sleeping on his pump.
This is how happy he was to switch back to Dexcom and to the new G6 system. While we haven’t seen 100% accuracy from this CGM, it has been close, and I don’t hear my son yelling at his pump/CGM about whether or not he should calibrate. And that feels like a win to me.
We had plenty of issues with the Medtronic 670G auto-mode, accuracy and the “enter a bg” loop were just a part of why we decided to switch back to Dexcom. The sensors rarely lasted a full 7 days and were more often than not inaccurate enough to frustrate the entire family. I know that it still brought our sons A1c down a little hit every 4 months, but it was still too frustrating to make it “worth it” for us. I know there are people out there who love this system, unfortunately, it wasn’t our experience. I look forward to trying the Tslim/Dexcom closed loop, when we are eligible for a new pump, until then, we will use the Dexcom CGM and Medtronic’s pump.
Tony’s cousin was married this month, which brought some if his family into town.
Their ring bearer was especially adorable!One member of his family we were especially excited about visiting was Tony’s mom! The boys Abuela (grandma, in Spanish) has been staying with us and we have been enjoining every minute!
The boys got to spend the night at my parents house while we went to the wedding, but other than that they have been with Abuela every possible moment!
we went to Chrystal Mountain and took the Gondola ride to the top with her, and more family that came for the wedding. It was the boys first visit with Uncle Tito, Aunt LouAnn, and cousin Cassandra!
We went to northwest trek and saw some animals with her, (and even more wedding guests)
We went to a local river where the boys had fun in the water and Abuela and I sat and watched before we all (except Tony-he had to work 😢) took a short walk on the nearby trail.
We visited Ruston Point, in Tacoma, and had lots of fun! We rented a surrey and rode it up and down the waterfront, had lunch on the water and enjoyed some ice cream cones.
We’ve had some restful days at home too, and Abuela has been teaching my boys how to play slots on her phone.We’ve played board games
Or watched movies together and gone for walks on our street.
Gabriel even learned how to make coffee for her!
Luckily we get to keep her with us for more fun adventures. We are loving having her with us (and trying to convince her to come again next year).