Monday, September 3, 2018

Prayers for my girl

So our last good streak wasn't a month, but it was exactly two weeks and that's still pretty good. Unfortunately, it was a particularly rough one lasting two whole days and with little to no response to pain medications. It left us a little uneasy about our upcoming trip to California/Disneyland. We've been wanting to visit California for years and when Mike told me to plan a vacation...I immediately thought of CA. I have a close friend that I met in the blog world 10yrs ago who lives just outside of LA. We've never met in person but have been calling, texting, and emailing for all of these years. Her daughter, Zoey (who I'm sure you remember me mentioning before) and Reagan are both the same age and had the same seizure disorder infantile spasms and that's how we met all of those years ago. So now we are all planning on meeting up in Disneyland for a few days and I really need everyone's prayers that my girl can have an extra special wonderful time. That means we need some good days. Lots of them (but really the most important are the days at Disney). The other catch...we're driving! That's two days there and three days back. We've never attempted such a trip before and we're (I'm) a little nervous about it. So LOTS of prayers are appreciated! We're also planning to meet up with one of our previous nurses turned actress in LA, as well as taking advantage of the many beach wheelchairs available along the coast! Hoping our girl can have lots of good days and enjoy this trip to the fullest. When she's not happy...we're not happy (and that will especially be the case with this trip). Both kiddos will be missing a week from school and therapies, but it's been a long time since we went on a trip and we're hoping by waiting til the school year began, that we will miss some of the summer vacation traffic! Please keep us in your prayers...I'm off to stress (I mean pack)!!!

Thursday, August 23, 2018

So many good days and the beginning of school

It's been almost a month since I've blogged. So sorry, time has gotten away from me and I've been meaning to post for quite some time. Reagan has been good. Pretty great actually. She went almost an entire month without any bad days. And even though she did eventually have a bad day, it was short and she recovered quickly. She started getting tense the Friday afternoon after her second iron infusion and then tense turned into tears. She had a pretty miserable night and I was up with her for a good part of it, but by morning she had turned a corner and was better. This going a whole month with no bad days has only happened a few times and it was years ago. I have to admit I was a little nervous about even mentioning it. Kind of like with seizures. When you don't see any, you don't want to even mention the S word. And actually we saw improvement there too. She probably went a month or so without any seizures. But then she had two (one big one) a few days after her bad day. :( Ugh. I hate seizures. We were changing her clothes Monday afternoon and next thing I knew I saw the head turn to her right and fixed eyes. She started coming out of it after about a minute or so but her right eye was still fixed. It was strange. I've never seen that before. She was moving around a little and her other eye was looking around, but that right eye was stuck. It took a good 4 more minutes before she fully recovered and it returned to normal. She had another one that was less obvious later that night. I walked in the room and she was laying beside the nurse. I saw her head turned sharply to the left. Then I looked up close and her eyes were fixed. This one only lasted a minute or so, but it still sucks. I wish we could kick these to the curb again once and for all. Both kiddos started back to school this past week. Ryan is in first grade. He seems to be enjoying it. Reagan is now in 6th. That means all new teachers and school. It's sad because we miss her teachers from Elementary but hopefully she'll have a good team in middle school as well. Hoping for a great year for both kiddos! Please keep them both in your prayers!

Friday, July 27, 2018

Houston and her first iron infusion

Reagan had a follow up with her EPI-743 study doctor Wed in Houston. Mike took off and we drove there and back the same day (as we always do). It certainly makes for a long day. We left at 8am and didn't get back til 7:30pm! We were so lucky that Reagan was in a good mood and handled everything like a pro. We had a long wait for the dr and then two missed sticks for her blood draw (and left without the EKG), it was kind of a pointless appointment. The only thing that we really took away from this appointment was how extremely serious her hemoglobin incident was. Her doctor said the level she had gotten down to was barely compatible with life. So SO scary. He was also pretty adamant that they need to figure out what caused it. Hopefully they do, but for now everyone is still scratching their heads. Today Reagan had her iron infusion. We were hoping to get the missed labs from the other day drawn, but no surprise, they had a hard time finding a vein and once they did, they were afraid to draw from it and blow it. So no labs...again. They were able to do a quick CBC and her hemoglobin levels had gone up to 10.3 (and that was even without the supplemental iron). I asked if she still needed the infusion today, but they were insistent that she needs to build up her reserves and it was necessary. The iron infusion itself went smoothly. They watched her for a while afterward to make sure that she didn't have an allergic reaction, but she was fine. We'll go back in two weeks from now for a second infusion. Hopefully her numbers look good. Thank you for keeping her in your prayers.


Saturday, July 21, 2018

Hematology follow up

Reagan had a follow up appt yesterday with hematology. First she had horseback riding and then her drs visit. She was a bit sleepy today but perked up just long enough for her riding lesson and then she slept through her entire drs appt (even the blood draw). She had a sleepy day yesterday and it looks like she's still a little groggy today. We spoke with the doctor first and she didn't have much new information. Everyone is still scratching their heads as to what could've caused this major anemia in our girl (she threw out the idea of parvo, the human form, fifths disease, can cause severe anemia and might explain that mystery fever she had a week ago). But who knows. Ugh. A year ago her hematocrit level was 14; when we went into the hospital a few weeks ago, it was down to 3.5. That's a HUGE drop. When we left the hospital, after 3 transfusions, it had gone up to 7.6. After a week at home on iron it had gone up to 8.5. Two weeks later on iron it has only gone up to 9.3. Normal for kids is 11-14. The doctor was not happy that it hasn't gone up more in that amount of time. So now we try iv iron infusions. The good thing is it doesn't go through her gi system so it will solve any absorption problems she might be having. The bad thing is that it's iv. It will have to filter through her liver and she already has so many meds doing a number on her liver, it's not ideal, but we really have no other choice at this point. Please keep her in your prayers. We go in for her first infusion next Friday 7/27. I'm hoping and praying everything goes smoothly. For her veins (she's not an easy stick) and her liver! She had a great day today, she was super sweet and happy so we finally got her back in the pool! Love this girl!

Friday, July 6, 2018

Crazy week

Reagan was in great spirits all through her hospital stay but we knew it wouldn't last forever. Tuesday she started getting more serious and tense. Wednesday (the 4th of July) she woke up even more tense and then the tears started up. She was miserable all day that day, which sucks because we had a house full of people over to celebrate. Pain medicines weren't helping for more than an hour or so at a time, so there was a lot of breakthrough pain. Finally as the night rolled around, she seemed to be sleeping without the aid of medicine. She dozed off on her mat with me lying beside her and we didn't dare move her...thankfully she slept through the night. She woke up Thursday calm but still very tense/stressed. Mike was off for the day and we were about to take Ryan to his swim lesson, when I got a call from her nurse. She asked me to come upstairs, something was wrong...with her (not Reagan). I ran upstairs and found her sitting laid back in a chair, sweating profusely and saying she was having chest pains. We called 911 and an ambulance/firetruck came very quickly (good to know) and they assessed her and decided to take her to the hospital. So crazy. I'm glad we were here and able to get her the help she needed ASAP. She ended up needing emergency surgery, so time was of the essence. I'm guessing she's going to be out for a while. Very scary, considering she was fine only minutes before. Today Reagan had her long awaited lab check in the hematology clinic. I'm glad they did it there as the nurses were very experienced in drawing blood and we got the lab results back within 10min. Her hemoglobin was 8.5 (it was 7.6 when we left the hospital); it's still low but trending up so that's a very good thing. For now we are just going to keep her on the iron supplements and follow up with hematology again in two weeks. Monday we have an appt with her GI doc to discuss what could have possibly caused her hemoglobin levels to drop this much in a year. The only idea I have is the change in formula. We'll see. So crazy. It's been a CRAZY week. Glad to be done with it.

Saturday, June 30, 2018

Pale and sleepy...not a good combination

So Reagan has had a bit of an "off week". Her new nurse commented a few times that she seemed pale, but Reagan is always pale, so I thought no big deal. She's also been a little sleepy this week, but that's not out of the ordinary for her either. Friday rolled around and she had a routine follow up appt with one of her specialists. While we were there, we decided to have some labs drawn that her neuro had ordered a few weeks ago. Reagan is a hard stick and it didn't go too smoothly. The first girl missed and they had to bring in the nurse who was in charge, thankfully she was able to find a vein and fill the many required vials. After that we headed to horseback riding. Reagan was a little groggy but did fine. Then we headed home. At 6pm I get a call from the nurse practitioner at the drs office saying Reagan's hemoglobin/hematocrit levels are "critically low" and we need to go straight to the ER! I was in shock. Reagan has never had any lab levels that have been a concern, so we certainly weren't expecting to get any news back that anything was wrong! I called Mike, gathered up meds and other necessities, then loaded both kiddos into the car. We dropped Ryan off at my Dad's house and headed to Dell. They took her back quickly and then we sat. They eventually sent in their best iv person who used ultrasound to look at Reagan's veins. Most of which were very small. They ended up picking one on her right upper arm that turned out to be a good one. They were then able to draw labs again to verify the original readings. We were hoping the first ones were a lab error, but that wasn't the case. Her hemoglobin was at 3.5, and since they transfuse at 7, she was VERY low. They were going to have to transfuse (and admit her). The key was they had to do it very slowly because her levels have obviously been declining slowly for a long time and they can't just add back quickly. So they admitted her to the IMC (a step down from the ICU). They had wanted her to go to the hematology/oncology floor but apparently there is a very strict ALL vaccine rule and since she's unvaccinated, she couldn't go there. The IMC was good though. It was very quiet and everything seemed to go pretty smoothly. Mike went home to stay with Ryan and I stayed in the hospital with Reagan (it was a looooong night with lots of beeping alarms and not much sleep). They transfused her with a small amount, very slowly over 3hrs. Then they took a little break, checked her vitals, made sure she wasn't reacting to the new blood, and gave her another transfusion. And then another. All of this overnight/early Sat am. Saturday morning Mike and Ryan came up, they rechecked Reagan's blood and then we waited til noon before we finally saw hematology. Her hemoglobin went back up to 7.6 which is what they were hoping for (but still way lower than the 14 she was this time last year)! They ran a bunch of tests in the ER that more or less ruled out hemolysis and they think her low levels are due to iron deficiency (her iron levels were also way off). We're not exactly sure what could have caused her iron levels to change this much in a year, but our only guess would be the switch in formulas late last year (I don't think we've had labs checked since then). They sent us home Saturday afternoon and gave us an iron supplement to start giving her. We have to call and make an appt with hematology next week and they'll order labs to check and make sure her levels are still OK. Crazy. I'm SO glad we just happened to have this appt and the office just happened to be able to draw labs, and that we eventually found someone who could actually get blood out of her, and that they NP saw us that day and knew we had labs that she needed to keep an eye out for! So crazy to think how many things had to come together perfectly for us to get these results just in the nick of time! My poor sweet girl! And she's been a super sweet trooper through it all. She's had a case of the laughs which has been such a blessing (that she wasn't having a bad day when all of this happened)! We're back home and just hoping to keep her healthy and catch up on some sleep! Please continue to keep her in your prayers!! We need some nice uneventful days!

At her drs appt in the morning...she looks fine to me!

Looking a little droopy in the ER as they search for veins.

Getting her first transfusion.

The next day with a bit more color in her cheeks!

Happy to be busting out of the hospital!

Friday, June 15, 2018

Summer is underway

We're done with our first week of summer! Ryan started summer t-ball and soccer the heat! Reagan finally got in the pool, even though she wasn't having her best day. This week has actually been pretty yuck for her. Most days were half ok and half not so good. Thankfully she was able to hold it together for most of her therapies and even make it to a cardiology appt (everything looks good), but not so good the rest of the day. Tonight as I type this she's super tense/stressed and all of a sudden nauseous. Ugh. It's gonna be a long night. Nothing is draining from her tummy, so I'm not sure what could be causing this (although last night we did find a bunch of formula/bile leaked onto her shirt). She seems a little congested, so maybe that's the problem? No clue. Hoping she can just sleep it off tonight. Lots of yawns right now, so that's a good sign. We've got a golf tournament tomorrow so I'm hoping both kiddos will behave themselves while we're gone.