2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman.
Friday October 30, 2020
It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day.
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| Keeping on her brave face as we rush out the door. |
We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “Mommy Mommy, when I wiped there was blood.” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. "This was what we’d been talking about. We got this." I threw a pad on her and we ran out the door. We had a 20 minute drive ahead of us and we had to be there by 1 pm.
Ever since Scarlett had been diagnosed with a rare platelet storage pool disorder when she was 3, I'd had sleepless nights worrying about her introductions to womanhood. Going over all the scenarios in my head. The options I hoped she'd have. Teaching and preparing her as much as I could. Even menstruating and risking my own health to show her what clots and heavy periods could look like for her .... but still. Nothing could’ve prepared us for what her first menstrual cycle would look like. It was worse than any nightmare or scenario I could have conjured up in my head.
By the time we finished our 15 minute walk-through, she was telling me she felt like she needed to go to the bathroom again. We drove to the nearest restaurant that I knew would let us use their bathroom and by the time we got there she had bled through everything. She passed a fairly large blood clot as she went pee and was in obvious discomfort. But my girl is strong and (luckily her Halloween costume consisted of a long lab coat that was covering everything up), so she insisted we went along with the special treat of eating out, such a rarity during these unprecedented times. We ordered and enjoyed what seemed like the last normal meal we would have for the next week.
We got home a little over an hour later and she was running to the bathroom to pass another clot and change her super pad, which inevitably had already soaked through. And . . . . it continued that way every 1-2 hours, for the next 48 hours.
Saturday and Sunday
Halloween seemed like a blur of endless bedding and clothing changing. I was up and out of the house by 7:30am that morning .... having to bulk up on new sheets and underwear, because I couldn’t keep up on the laundry before she saturated through another set. By noon, we just ended up putting down old towels for her to lay on. Washing the bedding over and over just became too daunting of a task.
By Sunday afternoon I was getting worried. She hadn’t really gotten out of bed in more than 36 hrs unless it was to go to the bathroom. She was losing color and very fatigued. Unfortunately my own history of horrible periods and the fear of being in a hospital during a National pandemic had me reluctant to go to the ER. At one point she stood up after going to the bathroom and started shaking and fell into my arms, she browned out. It was time.
Because it was the weekend we had to get hold of the on call hematologists in Oakland, instead of being able to speak with her normal hematologist. We called the emergency hotline and told them we were heading to the nearest hospital in Santa Rosa, just 10 miles away and to let them know we were coming. When we arrived they were waiting for us and pushed the check in process along rather quickly. They checked some of her vitals, took our temperatures, admitted her, and had us talking to a Dr in no time.
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| First blood transfusion. Waiting to get moved out of the ER into pediatrics. |
Her first of many blood draws was done as soon as we got to the room. The lab work showed she had already lost a significant amount of blood. Her hemoglobin was 7.6 (standard range being 11.5-15.5)Her red blood cell count was 2.4 (standard range being 4.0-5.2) and her Hematocrit was 22.3 % (standard range being 34.0%-46.0%) She did her first blood and platelet transfusions while we were still in the ER. They seemed concerned that her numbers were so low and stated they wouldn’t be letting us leave until her bleeding was under control. We were probably going to be there for a few days.
Monday
We were finally moved to the pediatric unit early Monday morning. By 7 AM she had a blood transfusion, platelet transfusion and a red blood cell transfusion. We both hadn’t slept well since Friday, and all we wanted to do was rest.
But Monday was filled with countless challenges and it ended up feeling like the longest day ever. More blood transfusions, red blood cell transfusions and countless vital checks. And everything seemed to be more difficult than they expected or wasn’t working at all.
It started off with her meds to control the bleeding. Her hematologists in Oakland were supervising what was being done in Santa Rosa and we were told she needed to start taking liquid amicar every 6 hours, A medication she’d been on a dozen times to control tooth bleeds. Seemed easy enough. However when Scarlett tried to take the liquid amicar that day, her throat seemed to reject it. (Something I ironically had an issue with after taking it for a few days consecutively trying to control some breakthrough bleeding I'd been having). She kept chocking and gagging it up. Ugh, part of me thought she was just doing it, because she had watched me go through that but non the less she was crying and refusing to take it. Their next solution... pill form. But it was 11 pills. And they were big. So, they cut them in half. And I had to sit and watch my 12 year old daughter. Whom never had swallowed a pill before, try to force down now, 22 pills. It was no surprise, 2 boxes of apple juice later...(which she never drinks) and she started throwing up. And she continued to do so.
They finally gave her zofran around 11AM, to try and control her nausea and throwing up, which finally enabled her to get some sleep. She was still losing so much blood that she was becoming more fatigued and couldn't even walk to the bathroom. She started going on a commode Monday afternoon. The nurse and I would wake her up every 2 or 3 hours cause she was saturating through her pads and sometimes her clothes. She was exhausted, severely anemic and for the most part slept the duration of Monday afternoon, all the way into Tuesday morning.
While Scarlett was resting, I was able to go down to the parking lot and touch base with my husband. He wasn't able to come into the hospital unless I left, which my daughter was not OK with, and I was running out of clothes I instinctively knew to throw in our bag when we left for he ER. So, I used this time to meet him and my 8 year old son out front to get a suitcase filled with Scarletts favorite pillows and new clothes for the both of us. It was so hard for family not to visit during her time at the hospital. Understandably for the safety of patients and staff, Covid restrictions were strict.
Late Monday afternoon, I started to notice a pattern of her throwing up occurring right as she got a new hormone pushed through her IV, so we decided to release it at a lower pace and it seemed to help. Even though she was throwing up, still losing an amazing amount of blood and/or clots and not eating .... the Drs were still hopeful (or trying to be really positive) and saying we’d be able to go home Tuesday or Wednesday. I however was not feeling so confident.
Tuesday November 2
By 5 am Tuesday I was texting my husband and asking him to bring another suitcase of clothes for Scarlett, she had already bled through all the stuff he had brought for her the previous day. Her bleeding was not slowing down. And I was starting to get worried that maybe she wasn't getting the best care she could be getting. She had fainted twice while we were trying to get her back to the bed during the night, and we were awaiting her next lab work at 7am, to find out our next step.
Everything got really scary after her morning blood draw. Her hemoglobin had dropped down to a dangerous 4.9. Her red blood cell count had dropped to 1.57 and her Hematocrit was only at 14.9%. So, another blood transfusion, platelet transfusion and a red blood cell transfusion were administered right away. The nurse stating that's the lowest hemoglobin number she'd ever seen was what threw me over. I contacted my local foundation to help me get some support. It was time for me to start advocating for some better care.
Around 10 AM, I took the Dr's and nurses aside in the hallway, asking when we're going to get to the point where we start treating the platelet disorder, not just the fact that she's losing blood. I asked why she wasn't being offered more options to get the bleeding to stop quicker than it was happening. And mentioned it was time to think about moving her to the pediatric hematologists in Oakland. There they would have more experience with her disorder and could finally treat her in person ..... 15 minutes later they came back in, and said they were beginning the transfer and once a bed was available in Oakland she would be headed there to get treated by a team of Dr's that they were putting together.
Another blood transfusion and Red blood cell transfusion and them still trying to get her to eat and the afternoon passed by quickly. She got prepped with an IV in her other arm, so she was ready for Oakland, where they were certain she would be getting 2 meds and/or liquids at the same time. A few hours of nervous waiting and the ambulance finally got there to transfer her to Oakland Kaiser Hematology Pediatric unit around 2:45pm. There's nothing scarier and more traumatizing then to watch your child get wheeled into an ambulance. And now something unfortunately due to Covid-19, too many families have to endure. . . . watching them shut the door and drive away.
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| Watching her drive away. |
Due to the pandemic, I wasn't allowed to go with Scarlett in her first ambulance ride over 40 miles away. Thankfully 2 of the 3 medics that were transporting her were women, because as you'd assume it was often embarrassing to have to deal with a male Dr during these circumstances.
I took advantage of knowing they were going to get there long before me, since I couldn't go in the commuter lane and rushed home to shower and pick up more clothes for me and her as well as certain things she had asked for.
Wednesday as the sun was coming up, we were reluctantly ready for another day. The Dr's had been in and all night, she had 2 more infusions and was getting Aygestin and Amicar intravenously. They were finally able to keep her hemoglobin above 7 through out the night and she was placed on a new hormone treatment. She still didn't have the strength to walk to the bathroom, but she was at least starting to get out of bed with less help to sit on the commode.They were in and out of her room all night and I feel like either of us got much sleep. But her bleeding was finally slowing down and at 3AM she had gone a whopping 5 hours without passing a clot. We had our fingers crossed we were finally getting the care we needed and she was on the road to recovery.
By Wednesday late afternoon, her bleeding had slowed down substantially. Her platelets were where they wanted them to be and her hemoglobin was finally above 8. We were already going over a very strict plan on how to go forward in the future and how to keep her from menstruating in the future. But unfortunately they did an ultra sound and found a lot of clots and blood that wanted to try and get her to release before they talked about being able to go home. They informed us they would be giving her a medication that would be making her uterus contract to hopefully release some of the clots. The Dr's quite honestly told us it was going to be extremely painful, much like labor contractions and that if the pain got bad enough they would be putting her on oxycontin.
Scarlett didn't take this news well and completely broke down. They ended up giving her ativan and tylenol assuring her she'd get stronger meds if the pain got worse. Obviously it didn't take too long for her meds to kick in. Soon after she was calm, happy, and joking about feeling like she had just gotten off a roller coaster.
Wednesday night went off without a hitch. Her bleeding had completely stopped and she didn't experience any of these horrible contractions the Dr's spoke of. So I figured she was doing great and beating the odds. We watched Frozen, Frozen 2 and Inside Out several times through out the night as she came in and out of her sleepy drug induced haze exclaiming she wanted to "watch it again, I don't remember watching it." Needless to say I now know the words to all the songs.
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| My poor girl endured so much. |
Thursday
We woke up Thursday morning very hopeful we were on the up hill road to recovery. They were talking to us about what she had to do to start the process of getting home .... being taken off the IV's and able to prove she could take her meds orally on her own. We saw a slew of people that day .... Dr's, Specialists, Social Workers. Scarlett was starting to look and feel like her old self. We were overwhelmed with all the family and friends that had been checking in and by Thursday we finally thought we had some good news to share.
She finally had the energy to talk to her little brother on the phone, who'd been in Davis with my parents since Tuesday. We had decided it was best for him to get a break from all the chaos. He had been a trooper through all this. I couldn't imagine what fears and questions he had as he was hearing fragmented stories of what was happening to his big sissy. He had several meltdowns through out the week (as could be expected), but was trying to be tough and brave once he finally got to hear her voice.
By mid afternoon her bleeding had almost completely stopped. She was laughing, making jokes with her doctors and nurses and finally eating. This was when her favorite Dr showed us what was hiding behind his mask. I don't think I'll ever forget the look on Scarlett's face. Neither of us were expecting that mustache and those lips and gave us all a good laugh.We were sure all the hard parts were over....but we had a few more hurdle to get through.
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| Her favorite Doctor. |
Around 2:30, literally as the Dr's were telling us they ordered another ultrasound ..... She started screaming and embracing her lower stomach. It was starting, almost 22 hours later, her contractions were starting! My 12 year old was going through the most horrifying pain you can watch your child suffer through.
And as if enduring the pain wasn't hard enough, as she was clinching my hand and the Dr's were starting to discuss more pain control, we heard a knock on the door. The nurse had arrived with her wheelchair to transfer her down to the ultra sound room and he was ready to pick her up. Scarlett started crying ..... "NO, Mommy, they can't make me do another ultra sound now." I looked at the Drs pleading with them to come and get her another time, but they insisted on doing it then and that they would go fast. This was another one of the steps she needed to take to be able to go home. As they wheeled her down the hallway I'll never forget the moaning and whaling sounds she was making. Clawing and grabbing my hand, begging over and over again, "MAKE IT STOP!MAKE IT STOP!" The whole time they were performing the ultra sound she was curling up in a ball, moaning and asking them to stop. It was the longest 15 minutes ever.
Even with all her screaming and pain we made it through her contractions with little outcome. They said they didn’t see the clots anymore and that her body was naturally getting rid of them on their own. What little they could see from the ultrasound wasn’t helping them decipher their next move, so they agreed to finish and get her back to her room.
Once we got back, we offered her oxycontin and she declined, saying she wanted to tough through it, and just try more tylenol. She suffered through the pain as she watched some YouTube and talked to some more Drs. All though we had a minor set back with the trauma of contractions our goal was still to go through the steps to be able to get home before the weekend. Her blood levels were still improving and our goal was to get her off the IV’s and onto oral meds.
They finally took her off her IV late Thursday evening and she took her first dose of meds orally before she went to sleep that night. At first being a bit hesitant after her last experience with taking pills, but the promise of getting to eat it with ice cream made the transition pretty easy for us. Her hemoglobin was up to 9.2 and she was finally getting in and out of bed without any help. I finally got to curl up the couch in the corner of the room and try and catch up on the results of the presidential election.... something I was forced to ignore the previous 48 hours.
Friday November 5, we finally get to go home
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| Eating breakfast and enjoying being out of her hospital bed. |
Friday morning we woke up feeling rested and ready to fulfill our check list. She had a great night of sleep. Sleeping from 9:30pm-5:00am. They only came in and checked her vitals once through out the whole night. It was the first time in 6 days she had gotten a few hours of solid sleep. Scarlett was amazingly brave, tolerant and a true role model through this whole ordeal. She was ready to tackle the day. Taking her second dose of pills early that morning and taking her first walk in almost 5 days, something she had to prove she was strong enough to do before she could be released.
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| The man behind the mask. "Can I take a picture of you without your mask to remember you?" |
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| She surprised him with her own mustache |
We had our last meeting with her team of Dr's and discussed our plans going forward. She would continue on Amicar for 3 more days. Take the hormone Aygestin 2x/day and iron 2x/day. She would continue on this regimen for 3 months. Then move down to 1 pill in the morning, 1/2 pill at night. If all that happened without any breakthrough bleeding, she would get to move down to 1 pill a day early in the Spring. The ultimate goal being for her to go until she's at least 14 without having a menstrual cycle. Once she's older we all agreed we would discuss the possibility of letting her body have controlled and monitored periods quarterly until she's an adult. I think it's so important for her to have a plan in place for her cycles by the time she is ready to make the decision about having a child of her own. WAY DOWN THE ROAD.
We finished up our morning, packing up our things and anxiously awaiting when they finally told us she was being discharged. She got out of bed and ate breakfast looking out on the city. She colored. Talked to her brother and Daddy. Played some games on her iPad.We washed her hair, she finally took a shower and we were ready to go. Unfortunately that came with just one more hurdle. As I was taking all our belongings to the car I discovered, my battery was dead. I panicked, calling the hemophilia foundation of northern california which had a office located a few miles away. Within 20 minutes and a few panicked texts messages to Scarlett's IPad explaining what was taking me so long and my car was charging.
Once we finally got home late Friday afternoon, we came home to a room filled with flowers, gifts and cards from her schoolmates, past teachers and family and friends. We were showered with such love, generosity and support over the following weeks, it was hard not to feel blessed. Friends and family checked in on her from near and far, and it was made very apparent how important she is to so many people.
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| So thankful for all that everyone did to make her Welcome Home so special. |
Sometimes the days I was home and reflecting back on the ordeal left me feeling more emotional than when I was actually living through it. I was able to start processing the week we had and it took me sometime to recover. Scarlett seemed to bounce back mentally a lot faster than me. Physically, taking a few weeks and her hemoglobin and red blood cell count getting back up where they should be. I'm not sure if she'll have some PTSD down the road, but so far she is handling it like a pro. I'm so proud of her strength and bravery. She truly should be an admiration to us all.
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| Recovering on the couch. |
We endured a lot of medical bills through out our hospital stay and will have to continue paying for the necessary meds to keep her from menstruating indefinitely. Our cousin set up a go fund me account. . . if you would like to help. http://gf.me/u/zazacz
For more on our Make-A-Wish trip and lasting impression please check out:- Make-A-Wish Part 1-Make-A-Wish is going to grant Scarlett 1 wish: http://atouchofscarlett.blogspot.com/2014/01/scarlett-makes-wish-part-1.html
- Make-A-Wish Part 2-It's Official: WE are going to Florida: http://atouchofscarlett.blogspot.com/2014/02/scarlett-makes-wish-part-2.html
- Make-A-Wish Part 3-Wish Reveal Party:http://atouchofscarlett.blogspot.com/2014/03/scarletts-make-wish-reveal-party.html
- Make-A-Wish Part 4- Dear MakeA-Wish and GKTW: http://atouchofscarlett.blogspot.com/2014/04/the-most-amazing-thing-i-could-never.html
- Make-A-Wish Part 5-Give Kids the World, GO to your happy place: http://atouchofscarlett.blogspot.com/2014/04/go-to-your-happy-place-give-kids-world.html
- Make-A-Wish Part 6- A lasting Impression: http://atouchofscarlett.blogspot.com/2014/06/a-lasting-impression.html
- Scarlett's story on Make-A-Wish, SF Bay Area: http://sf.wish.org/wishes/wish-stories/copy-of-i-wish-to-go/scarlett-disney-world
- Here's the piece I wrote for Give Kids the World: http://www.gktw.org/blog/our-happy-place/
For more on our Make-A-Wish trip and lasting impression please check out:
- Make-A-Wish Part 1-Make-A-Wish is going to grant Scarlett 1 wish: http://atouchofscarlett.blogspot.com/2014/01/scarlett-makes-wish-part-1.html
- Make-A-Wish Part 2-It's Official: WE are going to Florida: http://atouchofscarlett.blogspot.com/2014/02/scarlett-makes-wish-part-2.html
- Make-A-Wish Part 3-Wish Reveal Party:http://atouchofscarlett.blogspot.com/2014/03/scarletts-make-wish-reveal-party.html
- Make-A-Wish Part 4- Dear MakeA-Wish and GKTW: http://atouchofscarlett.blogspot.com/2014/04/the-most-amazing-thing-i-could-never.html
- Make-A-Wish Part 5-Give Kids the World, GO to your happy place: http://atouchofscarlett.blogspot.com/2014/04/go-to-your-happy-place-give-kids-world.html
- Make-A-Wish Part 6- A lasting Impression: http://atouchofscarlett.blogspot.com/2014/06/a-lasting-impression.html
- Scarlett's story on Make-A-Wish, SF Bay Area: http://sf.wish.org/wishes/wish-stories/copy-of-i-wish-to-go/scarlett-disney-world
- Here's the piece I wrote for Give Kids the World: http://www.gktw.org/blog/our-happy-place/
For more stories on raising children, when one of them has a bleeding disorder please check out:- Raising Siblings, when one of them has a special disorder: http://atouchofscarlett.blogspot.com/2013/11/raising-siblings-when-one-of-them-has.html
- A Mother's Guilt: http://atouchofscarlett.blogspot.com/2013/12/a-mother-guilt.html
- It Takes a Village: http://atouchofscarlett.blogspot.com/2013/12/it-takes-village.html
- My little prince, (the non bleeder): http://atouchofscarlett.blogspot.com/2014/01/my-little-prince.html
- Family Fun Days-keeping the kids entertained safely: http://atouchofscarlett.blogspot.com/2014/02/family-fun-days.html
- My son bites Scarlett: http://atouchofscarlett.blogspot.com/2014/02/no-no-bite.html
- Raising Siblings, when one of them has a special disorder: http://atouchofscarlett.blogspot.com/2013/11/raising-siblings-when-one-of-them-has.html
- A Mother's Guilt: http://atouchofscarlett.blogspot.com/2013/12/a-mother-guilt.html
- It Takes a Village: http://atouchofscarlett.blogspot.com/2013/12/it-takes-village.html
- My little prince, (the non bleeder): http://atouchofscarlett.blogspot.com/2014/01/my-little-prince.html
- Family Fun Days-keeping the kids entertained safely: http://atouchofscarlett.blogspot.com/2014/02/family-fun-days.html
- My son bites Scarlett: http://atouchofscarlett.blogspot.com/2014/02/no-no-bite.html
Scarlett's interview: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html
- The Jackass Whisperer, Dealing with other people's judgements: http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html
- Help wanted!Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- Defending our Disorder: http://atouchofscarlett.blogspot.com/2014/02/defending-our-disorder.html
- Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html
- Fear of the Unkown: http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html
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