Hi,
Well, we are home. We drove home on Saturday. It rained the entire drive. Luckily, the traffic was pretty good, so that was a blessing. I always think Connecticut has the worst traffic. It was definitely the heaviest leg of the trip. While there, we were in the left lane just a couple cars behind a Uhaul truck that was in the right lane. He stopped short of an overpass because he didn't think he could fit under it. The under part of the bridge was kind of arch shaped, so his best bet would've been to go under the middle, which would've put him in both lanes. We have no idea what happened, because we passed him right as he was stopping. Thank God! I was thinking, we are SO lucky! Haha! I crack myself up.
We left at 2:45pm and got home at 12:30am. Not too bad for a rainy trip with only two stops. Harlie is a champ traveler! At one stop we were standing in line in the restroom and all the ladies turned to me and said they wanted her to go before them. Ugh. It was such a sweet gesture, I almost started to cry. You can tell when people are kind. They were looking at me and I could feel their empathy. As we were leaving one of them said, "I hope she feels better soon." So kind.
As far as how she's doing, she is of course, happy to be home. But, it is hard. Because of the swelling, she can't wear her hearing aid in her right ear. Swelling also makes it really difficult to understand what she's saying. She's had some facial paralysis for years. Anytime you undergo reconstruction in the jaw/face, especially in a kid with an asymmetrical craniofacial syndrome, there is a risk of damaging facial muscles. The left side of her mouth doesn't turn up like the right side. So, every time she is recovering and can't move her mouth, I am nervous. She asked me yesterday when she will be able to do her "angry face" then she tried so I could see how she looks. Even during recovery, that girl cracks me up. I hope she gets back what she had and didn't lose more. Time will tell.
She definitely looks different. This has happened every time she's had craniofacial surgery. I've talked about it before - but this is very hard. We have loved every one of her faces. But, it seems cruel to keep changing them. She said the other day that she looks like Frankenstein. You'd understand why she says that if you could see her incisions. I'm tempted to post some pics, but I'm afraid they might be too much for most of you. Plus, Blogger has been really weird lately and keeps taking down some of my old posts for "breaking community guidelines." I think that's pretty funny considering this is our life and it is too hard for community guidelines. Tell me about it, people. But, we don't have a choice - we have to live it even if it is too hard for others to simply hear about it.
She also asked me why she was born this way. Ugh - that WHY question. I really try hard to not ask why. There is no answer. We'll drive ourselves crazy trying to figure that out. Anyway, I told her that we don't know why. It is just the way God made you and we love you just the way you are. Then she started to cry those big silent tears.
This is when I get worried about her being on Instagram, where she sees girls her age, looking very different than her, doing very different things. It was bad timing that on her way home she saw tons of photos of girls her age going to homecoming. Other girls grow up into young women, then women. They have friends, they date, they get married, etc. But, Harlie is frozen in fucking size 10 clothes. Do you know how hard it is to find age appropriate clothes in the children's department? No girl her age shops in the same department as her. Not to mention that her body isn't shaped like a typical girl who wears size 10 clothes. I don't know if it because of the pulmonary hypertension, the lobectomy, or the four open heart surgeries where they had to break her sternum (probably a combination of all) but her rib cage is really wide. So dresses that zip up the back have to be bigger in the chest, but then they are too big in her shoulders and length. Well, she's 4'4" so the length on most things are a challenge.
She has girls from her school (or ones she went to school with in the past) follow her on Instagram. I can't help but notice that all of the comments on her posts are from my friends and family. Thank you for all you say, by the way! I don't recall ever seeing a comment from a person her age. I get texts and comments all the time from people asking how we are doing, telling us they love us and are thinking of us. She's missed two weeks of school - and not one kid has messaged her telling her they miss seeing her at school or are thinking about her. Is it really that hard for a high schooler to think that they would want to know people care about them if they were going through something really hard and painful? Why did they want to follow her on Instagram anyway? What is the point? This KILLS me because my friends mean so much to me. This is a lonely life when you have friends who love you. What is it like when you don't?
Yesterday I was feeling particularly sad and mad about it all. I am afraid that this surgery tipped the scales and put us into the THIS IS TOO FUCKING MUCH category. I mean, come on! She's had well over 100 surgeries! We are all so tired of doing this over and over again. We go so low and eventually we bounce back. But I'm not feeling so bouncy this time around. Then, Harlie's afternoon bus driver called. He told me that he was calling to check on Harlie and that he and the aide on his bus miss her every day. I couldn't help but cry. Wow. What a difference that short phone call made! It isn't really that hard to make someone else feel loved and feel like they matter. He made my day, too, because as a parent, don't we want our children's lives to matter?! They miss her! How great is that? Her nurse that goes to school with her misses her, too. Edited to add that I heard from her special education teacher yesterday afternoon and they miss her in class and her classmates made her cards. She will love that.
I don't like feeling angry. I'm always kind of sad. I'm feeling it, even when I don't show you. I guess that's grief for you. So, the sadness, I am "fine" with - the anger though - that's tough. A friend called me shortly after the bus driver called. I was dealing with so many emotions at the time. The kindness of that phone call just broke the dam. I hate sharing the anger. I don't know why. But, it is definitely a part of our life. Heck, it is a part of everyone's life. Anyway, B got an earful, that's for sure. Haha! Thanks, B!
Anyway, I have been very busy taking care of her and trying to get all her meds and follow up doctor's appointments straight. The medication that the cardiologist put her on in Boston isn't something I can give her. He called it in to our local CVS and our friend Craig went and picked up her scripts so we would have them Sunday morning. He also went to the grocery store and got us some stuff so we wouldn't have to on Sunday. He also got me some flowers! So nice! Thanks, Craig!
Anyway, when I went to give her the medication (for her non sustained ventricular tachycardia - NSVTs, which can be very dangerous, by the way) I noticed that it was written to give her one tablet by mouth per day. The directions say "do not chew or crush before swallowing." Um, yeah, that's not going to work. She cannot swallow any pills. So, I messaged her electrophysiologist (EP) in DC. She has to put her on something else that can be compounded into a liquid. So, I had to find a pharmacy that compounds and takes Harlie's Medicaid. It is Wednesday and we still haven't resolved this issue. I can't help but feel afraid. I mean, what if she gets another NSVT and it is bad, while we are waiting on the meds?
When we got home it was overdue for me to order her monthly supplies. I have PTSD about her supplies/equipment because during (and after) Covid supplies became SO hard to get. All that bullshit about "protect the vulnerable" was hard to swallow when you have a medically fragile child who REQUIRES certain supplies and equipment to remain alive and well - but you couldn't get them. Every single month, I was told about something that was unavailable, back ordered or no longer covered by Medicaid.
I just want to say right here that I would not need any of this crap if she were healthy. I don't WANT any of it. None of it makes me happy. So, I sat down to fill out the monthly spreadsheet. I did it and emailed it. I received an email back that I would be receiving a new spreadsheet to use starting next month. It said the new spreadsheet is MANDATORY. For each item I order I have to state the REASON WHY in the JUSTIFICATION column. Are you kidding me? If the sheet isn't filled out correctly, they will send it back. They also want us to fill in a column that asks for how many of that particular item we have ON HAND.
In order for Harlie to go on Medicaid - we had to go through a bunch of medical paperwork. There are tons of doctor's orders (there has to be an order for every single thing). We had to do a big update a couple of years ago where a person had to come into my home and we had to fill out a huge amount of paperwork and he asked me a million questions. He was here for several hours. We get phone calls and we have to see our case manager on a regular basis. Our case manager is always changing and I currently have no idea who it is. Someone called just the other day and she said she was calling for our case manager? Okay. So, I took the opportunity to tell her I need cotton swabs to do wound care. But Medicaid stopped providing them. If I don't do proper wound care, it could get infected and she would need to be hospitalized. I think it makes sense to cover the fucking cotton swabs. I'm not going to get the cotton swabs. I have to complete paperwork every year. She is seen by a million doctors a million times a year. But, I have to JUSTIFY SINGLE THING I ORDER?! What the actual fuck? Is there a scandal of people wanting trachs, but not actually needing them? Have people lied and cheated through all that paperwork, doctor's orders and home visits to get to this point and that justification column will be just the thing to discover them? Are people reselling saline bullets on the internet? Split gauze? Heated circuit wires? Humidification water? Suction canisters? Suction tubing? Suction catheters? G-tubes? Trach ties? Feeding tubes? I mean COME ON! For 99% of this stuff, we cannot buy them on our own. If we can purchase them, they are SUPER expensive, so it isn't reasonable for us to commit to purchasing things like trachs. This is why Harlie is on Medicaid. I'll never forget the company coming to our house with our first shipment of supplies and equipment. He set it all up and taught us how to use everything (this had to be done before we brought her home, obviously). He told us that it cost like $7,000 per month to have this stuff. That was 17 years ago. Imagine what it is now. Anyway, I think whoever is coming up with these rules is just trying to break us. How can we make their lives harder??? I mean, no parent wants to do what they have to do, but let's see how far we can take them until they snap. Insert evil laugh here.
I can't help but be perplexed by the juxtaposition of the abortion debate to hospitals bragging about saving 24 week babies, only to send these babies (and babies with other life threatening conditions) home to families that will struggle for the rest of their lives to get the supplies and support they need to keep them alive. Good luck families! At least one of you parents will have to quit your job and work tirelessly to find nursing, supplies, equipment, appropriate education, etc. Of course they don't tell you that. You have to figure that out yourself.
5 comments:
I don't know even know what to say about all you go through to take care of your precious daughter. You are a strong woman and certainly deserve the anger and frustration expressed. You are a human being who cares deeply for all your family and would do anything to keep them healthy and happy. Harlie is a strong young lady because she's learned that from you. This has been such a long road for you all but I can't help but think back to that moment when the doctor(s) told you she only had a 5% chance of survival and look at her now!! And the fact that she can still crack you up is heart-warming. We continue to pray for your family and hope that her recovery will go well.
Hi, I am Noelle, and you don’t know me also, but I get it. I have two medically complex children that require multiple specialists, and infusions every two weeks. I don’t know how I found your blog, probably researching something. We used to live in a Twin neighborhood near you. My kids have a primary immune deficiency, pots and a host of other letters. To get diagnosed we had to go to DC, but for three years we have had to drive to Connecticut every other month to get transfusions for their rare disease. We had to withdraw and homeschool since we kept being reported to truancy officer even with doctor notes. We eventually found care closer to home and that did not require traveling up every major city on the east coast. We ended up going south to Charlotte. The infusions are now done at home, but most every month the supplies aren’t right, although we have a better company now. Each infusion is around 30,000 a month. One daughter was diagnosed at 8, one at 14 or 15, so 60,000 a month just for infusions. We have met our out of pocket maximum by the first week in January. My daughter is also missing homecoming this weekend, infusion tomorrow. It is not an easy life, but we love them too, just the way they are. You, unfortunately not alone, and if you ever want to get coffee, to vent, commiserate, or talk, I still live in Glen Allen. Let me know, I don’t want to share contact info publicly, so I don’t know how exactly to connect. I hope that knowing you all are not alone helps. ❤️. We are rooting for you all.
Hi, I am Noelle, and you don’t know me also, but I get it. I have two medically complex children that require multiple specialists, and infusions every two weeks. I don’t know how I found your blog, probably researching something. We used to live in a Twin neighborhood near you. My kids have a primary immune deficiency, pots and a host of other letters. To get diagnosed we had to go to DC, but for three years we have had to drive to Connecticut every other month to get transfusions for their rare disease. We had to withdraw and homeschool since we kept being reported to truancy officer even with doctor notes. We eventually found care closer to home and that did not require traveling up every major city on the east coast. We ended up going south to Charlotte. The infusions are now done at home, but most every month the supplies aren’t right, although we have a better company now. Each infusion is around 30,000 a month. One daughter was diagnosed at 8, one at 14 or 15, so 60,000 a month just for infusions. We have met our out of pocket maximum by the first week in January. My daughter is also missing homecoming this weekend, infusion tomorrow. It is not an easy life, but we love them too, just the way they are. You, unfortunately not alone, and if you ever want to get coffee, to vent, commiserate, or talk, I still live in Glen Allen. Let me know, I don’t want to share contact info publicly, so I don’t know how exactly to connect. I hope that knowing you all are not alone helps. ❤️. We are rooting for you all.
Your blog means the world to me. Somehow it make life more real. And it makes me want to be a better person. Hope that doesn’t sound too weird. But it’s true. Your most recent blog resonates - the cherry on top of the justification for swabs would put me over the edge. That’s truth staring at you in the face. Ugly Clarity. But you connecting with people that love you and your daughter is real.. I’m thinking of you from afar in South Carolina and look forward to any of your future posts. Thank you for sharing your life. I am blessed to get a glimpse of your world and want you to know that I hold that dear. Kisses and hugs to your beautiful family. Jennifer
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