Hard

Hard

It's just hard right now. Eli is stuck in PICU b/c the cvvhd machine (slow continual dialysis) can't go with him to BMT. They used to allow them there. The BMT nurses told me they've had the machines there. But not in a long time. The BMT docs say the dialysis nurses don't want to come on and off the BMT floor to service them. The dialysis folks say the BMT doctors don't want the cvvhd machines in their unit. Who knows. The fact is we're stuck in PICU until Eli can transition to intermittent dialysis or until his kidneys are fully functioning. Either way it'll be awhile. It's like the movie Groundhog Day here. Everyday is the same. 

I'm not ungrateful for the miracle of the adenovirus being annihilated and Eli surviving and having no observable organ damage from it. I'm so thankful he's still with us and showing his spunky personality. That's about the only thing that keeps me going up here. But emotionally I feel like I'm dying a slow death. 

Outside the world keeps going. Spring came and now summer is imminent. Families are out and about, teenagers are going to prom, children are practically vibrating with excitement that the school year is nearly over (as are their teachers). My friends are taking their kids to minor league baseball games and Disney world and the beach. 

I just want my kid back. I just want to take him and big brother to go fly kites at the beach, hunt for shark teeth, go for a hike. I want to take them to a baseball game. 

And every night that I go to bed at the Ronald McDonald House, I wish Eli was next to me. Heck, I wish either one of my kids was next to me, or better yet, both. I not-so-secretly love having my kids in my bed (even though one thinks he's too grown now), and Eli has been sleeping with me since he got sick. 

I just want my kid back. This is really hard. 

Currently Eli is in acute renal failure. I'm not sure when it goes from being acute to chronic, but probably soon-ish. The doctors that we like and trust the most say Eli's kidneys just need more time. How much time? No one knows. More than a few days. 

It could be so much worse. Eli is SUCH A CHAMP. God has definitely healed him. But Eli still has so far to go. 

I just want to take my kid and go home. I want this all to be behind us. 

I was talking to my mom about all this today. She was rather enlightening. Leave it to moms, right? She compared it to the transitional time in labor. When you just can't do it anymore and you beg to home, or be done, as if that's an option. That's precisely when things start changing, the end is sort of in sight (after a pretty giant hurdle) and so much of the labor is behind you. In the case of Eli in renal failure and waiting for his cells to grow...I hope she's right. I hope we've done the heaviest lifting and we're on our way to a new and healthier life. Theoretically in a few more weeks we should know the outcome of Eli's transplant. Which cells engrafted, if it's permanent, if the old rogue cells were sufficiently killed off. And in a few more weeks hopefully Eli's kidneys will be more functional, and/or he will have transitioned to intermittent dialysis. But like in transitional labor, I just can't do it anymore. I want to take my kid and go home. I don't have anymore weeks in me. 

On one hand I think I should probably just take my anti anxiety med. I don't take it regularly. I got it to help me through the hard parts of this process. It would definitely help presently. On the other hand, what I know about myself is I process things by feeling my way through them. Remember "Going on a bear hunt" from preschool? "Can't go over it, can't go around it, gotta go through it." It's like that for me in life. So I am cautious about anti anxiety meds because I have to fully go through something to get past it and move on. I do usually take it on big days (like Eli's birthday) so I don't turn into crazy anxiety lady and ruin everyone's fun. I'm great at getting uptight and spazzy, so it's helpful.

But I think I'll be okay if I take it now, just so I can get through the next few days and weeks. I don't think there's anything wrong with taking medication and I'm not trying to prove anything to myself or anyone else. I just want to make the best choice for my health. Which is why I haven't had any alcoholic beverages in a few weeks. I don't think it's healthy for me to put wine on top of a depressive state. So I haven't. I have tried to eat a more plant based diet, as that affects my mood positively. Sleep has been hard to come by, even on the nights I get to sleep in a bed. I've walked to and from the hospital to the Ronald McDonald House a bunch instead of driving or taking the shuttle. It's a little over a mile. It's a pretty nice walk. So I think doing those things are helpful, and the next right choice is a pharmaceutical. 

My family and friends have been great. Better than great. I have had more friends, old and new, reach out to me in love than I would ever have expected. They've been so kind, tender, encouraging. My family has been loved so well by so many people. It's humbling. I don't know that in five lifetimes I could return or pass along all the love we have received, but I sure will try. 

Which leads me back to being D-O-N-E. I want to take my kid and go home.

We just have to get past this hard part. And the only way out is through. 

It's just part of being a mom of a black son

Tonight Jerry, Ty, and I had the wonderful opportunity to go to dinner together. It was such fun! We ate oysters, burgers, and loaded fries. We laughed and joked. It was a gift.
When we got to the restaurant there was a short wait. We added our name to the list and they said they'd text us when a table was ready. We were on a cute little street with tons of little shops and restaurants, so we started walking around, taking it all in. Before long I got a text that our table was ready, so we turned around and headed back to the restaurant. Ty started running and immediately, without blinking an eye I said firmly, "Ty don't run." Not because I thought he'd run into traffic, or because he wasn't being considerate of others, or because I'm a stick in the mud. But because he's black, and I don't know what any bystander or the security officer a few yards away in his vehicle will think of a black teenage boy running down the street at almost 9pm on a Saturday. People are insane. And black males are viewed as a threat. So my automatic, knee jerk reaction to anything Ty does in public is a split second assessment of how threatening his behavior could be interpreted. That's how it is for me, and every other mom of a black boy in America.
I just thought you should know, in case you didn't.

A taste of Eli's medicine

A taste of Eli's medicine

I like to think that because I have been Eli's primary caregiver from the beginning, I have an intimate understanding of what he is going through. And on some level I do. But really, I don't. No one is poking and prodding me, taking 1,000 X-rays, pumping poison into my body, restricting my liberty and my diet.
Until now.
The doctors have decided that the best treatment for Eli is an additional haploidentical transplant (half match) along with the unrelated cord blood stem cells. Oh, and granulocyte transfusions (white blood cells).
A haploidentical donor is a biological parent. Two biological parents should each be a perfect half match to their child's HLA type.
And granulocytes? Those are like platelets in that you don't have to match blood types. BUT they don't live long and are not typically sitting in great number on a blood bank shelf. Plus, a person needing granulocyte transfusions will more than likely need them ongoing, so then you get into concerns like stacking up the variety of donors. Realistically, it's better for the body receiving transfusions to have as few donors as possible. So with all of those things in mind, they like to use a parent as the granulocyte donor. We are physically present, usually healthy enough, and as they say, "invested".
It makes sense that all things being equal, either Jerry or I could be the donor for the haploidentical stem cells or the granulocytes. But I'm here, and it's just easier if it all comes out of the same person. Less paperwork, less appointments, less testing. So I'm the big winner.
To get my blood easily and regularly they are going to put a central line in my chest. On Tuesday.
Yeah, it kinda got real when they made those plans. Which brings me to my point. Any parent would jump at the chance to DO something to help their child. I've been wanting to DO something since August. And now that I am? I am surprised to find out it comes with a side of anxiety. Not a terrible amount, just more than expected. I figured on a scale of 0-10, I'd be feeling level 1 or 2 nervous about getting a line. I'm actually more like a 4. I'm just so surprised by that.
Maybe you're thinking, "Ok sure, but it's not that big a deal." Um, yes an no. Yes, they do it all the time. And they also treat infections from lines to people that have to be hospitalized all the time, too. A catheter from the outside of your body into your heart is not without risks. It should be fine, but again, not without risks.
And then there's the care of it. It can't get wet. I can't imagine it's terribly comfortable.
Additionally, I will gain patient status. So I'll be a caregiver and a patient, which can be tricky, especially when I have to go to the clinic for several hours a couple times a week to have my blood taken, processed, and returned, and my dressing changed. It makes a HUGE difference that my mom is here for a long while to help care for Eli. Really, my mom being here makes this whole crazy (to me) plan possible.
Since they'll be taking my white cells twice a week they'll give me injections twice a week to up my white cell production, and I have to keep my iron levels up. So I'll be eating meat like it's my job. Ugh.
Now that I'm staring down a central line placement, I have an entirely new appreciation for what Eli has gone through. He's had a line of some kind for 8 months, not to mention ALL his various treatments and hospitalizations.
I absolutely have no second thoughts about doing this. My love has no bounds. I think science is incredible. I just get to anticipate it for several days. And then I get a small taste of what my baby and all our little fighter friends are going through.
And eat a lot of meat for next few months. :-/
Wish me luck!

Life in the BMTU

Life in the pediatric bone marrow transplant unit...there are lots of rules. So. Many. Rules. All for the safety of the patients, who are here because this is their only choice. So it's a good thing. But a lot to keep up with.
The BMT is a locked unit. When you get buzzed in you enter an anteroom where you put booties/shoe covers on your shoes and then scrub your hands with soap for 15 seconds at the sinks. Then you can come on the unit.
There are not even two dozen rooms. Nurses have two patients and they are always busy. Also, they are always available to help cheer on a kiddo or assist with an IV pole while walking or tricycling down the hallway.
There are no residents, only 2 fellows, a few nurse practitioners, and 5 or 6 attending doctors, who make decisions together regarding patients' treatment plans and issues that arise. That is probably my favorite aspect. You don't have one brilliant and highly experienced doctor leading your child's care, you have half a dozen. These are some passionate, hard working doctors.
One of the best parts of BMT is child life and the family support program. They plan daily and weekly activities to get the kids out of their rooms and engaged. Things like an Easter egg hunt, art activities (sand art, painting, bead projects), bingo, science activities, etc. They also plan and implement perks for caregivers. There are weekly massages (15 minute chair massage. It's not earth shattering, but it's nice), twice monthly relaxation tea, monthly (?) salon day where a hair stylist gives free cuts to caregivers (because we spend months in the hospital and get a bit raggedy), and occasionally other things. Usually a few times a month a church or other organization will provide a home cooked meal for the BMT patient families. The patients can't participate because the food prep is not controlled, which leads me to...
Food rules. This was the one big (HUGE) surprise for me. I didn't realize there was a special diet or how restrictive it could be. Whoa. First, it's a low lactose diet. I'm pretty sure that has to do with the chemo messing with your insides. It can be difficult for these kids' bodies to process dairy, so everyone gets a low lactose diet. This means lactose free milk and ice cream, and only certain kinds of cheeses. So in addition to the low lactose diet there is the neutropenic diet, which maybe I should have known about that since Eli has been neutropenic for all of 2015 so far, but...whoops! The neutropenic diet cuts out most opportunities for foodborne illness and fungal acquiring. So, no fresh, raw fruit or vegetables (fungus loves fresh produce). Any fresh produce must be cooked thoroughly. No beverages from a fountain. Basically just processed/pasteurized/lactose free/bottled beverages are allowed. Nothing at all from a deli, nothing from a buffet, no hand dipped ice cream, no soft serve ice cream or yogurt. No dried fruit or nuts. Nothing from a bakery. Homemade or commercially packaged baked goods are fine.  Pretty much well cooked from scratch or totally processed foods are acceptable. Everything else is a no-go.
There are also rules about food prep and clean up. Wash the tops of canned goods before opening. Wash a can opener after each use. Dry your hands with paper towels. Replace dish towels daily, sponges weekly. Food can only sit out for 1 hour. Leftovers are to be discarded after 3 days. No thawing meats by sitting them out. Eggs have to be cooked through. Cold cuts heated until steaming. Only restaurants with an A in sanitation are acceptable and you have to ask them to prepare your food fresh. No garnishes. There's more, but that's what I remember right now. It's a lot.
In BMT the entire staff wants to see the kids as active as possible. That means they constantly encourage the kids who are walking/riding in the hall. It also means that when a doctor wants to talk to you, and you are in the hall with your kid, they tell you that they'll come find you when you're done, they don't want to interrupt the kids doing any sort of movement.
Eli is becoming slightly famous for his "walking music" as he calls it. The kid loves music. He's always loved Motown. So I just turn on my Motown station on pandora on my phone while Eli is walking or riding in the stroller around the unit. The nurses will sing along or dance as we go by with the music playing. Eli thinks it's hilarious. And when he's riding in the stroller he has his head bopping along to the music.
There are 2 washers and 2 dryers that are not vented externally so they take ages. There's a small kitchen that the caregivers share. Everyone gets half of a shelf in a cupboard and whatever space they can glean in the fridge/freezer. It works. There are mini fridges in the rooms, but they are for patient food and drinks only.
Until last month, the bathrooms in the patient rooms were for patients only. There were two bathrooms, one had a shower, for all the caregivers to share. You live on the unit for months at a time. Yikes. The week before we transferred into BMT they changed the policy. Now resident caregivers (not visitors) can use the bathroom and shower in the patient rooms. But you have to wipe it down with bleach wipes before and after use, every single time. That means wiling down the ENTIRE shower. It's a chore, but immensely better than sharing with dozens of your not so closest friends. They dont allow shower curtains b/c plastic harbors mold. If you intend to shower you have to get a flat sheet and drape it over the shower curtain rod. It works pretty well, except when it falls to the ground in the middle of your shower.
Overall, BMT is not a bad place to be. It's pretty cheery a lot of the time and other parents/caregivers are generally warm and respectful to each other. There's some comraderie since we all know each one has experienced some similar, difficult days. But the reality is no one wants to be there. We're all there because it's our last option, there are no other treatments for our kids. And that fact just sort of bubbles under the surface all the time.

Hospital Hacks

Things that make the hospital a little less awful....
This is a work in progress. If you have anything else to add, let me know!

Cheerios + m&ms = hospital trail mix

Lemon juice packet + sugar packet + washcloth = hospital facial

3-4 smashed up icee pops (flav-or-ice) + 7up or ginger ale = slushie
Can't take credit for that one. My new friend Ronnie taught me that.

If you ever find yourself in need of a shower curtain and no shower curtain to be had, a flat sheet works marvelously. Just drape it over the rod. Shower curtains aren't allowed in BMT, so that's what they recommend to do. I can't believe how well it works.

Disconnect the hospital phone from the wall when you're going to sleep. There are so many beeps and noises already, you don't need a wrong number calling you at 1am. Or 6am. Voice of experience here.

Hospital issue toothbrushes last about 2 weeks. Plan accordingly.

Body lotion will totally double as hair conditioner in an emergency.

Inquire about any meds scheduled for overnight. Some hospitals (cough :Duke:) automatically schedule certain meds for certain times, like a diuretic at noon and midnight, or an oral med at 2pm and 2am. Because apparently it's never occurred to them that an actual human being who is already sick and in need of rest will have to wake up and pee 12 times, or wake up to take a med, when they could have just scheduled it according to normal human activity.

I highly recommend bringing your own socks, blanket, and toilet paper. The hospital version of these 3 items is dreadful.

Netflix on a tablet

Put a sign on your door instructing any and every one to see the nurse before coming in. And talk with your nurse about whether you want random medical people waking you up if you happen to be napping.

Nothing makes a doctor come to your room faster than you stepping into the bathroom. I have no solution, just prepare to yell, "I'll be out in a second" at least 5 times a week. And no they don't come at the same time each day, or even close to it.

Ask if there is a caregiver discount in the cafeteria/food carts.

Bring slippers or slip on shoes. Not flip flops or anything that laces/ties.

Ridiculous things I have said during this hospitalization

My last post was pretty raw. I have absolutely no qualms about that. But I'd like to lighten it up a little. And also be completely real. Here are some of the more ridiculous things I have said to nurses and doctors since we've been at Duke:
 
[Phlebotamist shows up to draw blood.] "Who are you? What you doing?" "Here for labs, ma'am." "He has a PICC line." "Can we use that?" "It goes into a large vein which is where blood is located."

"If someone tells me my son has developed diabetes I will throat-punch them. I like you. I don't want to throat-punch you. But I will do it. Don't draw the short straw." (The resident then reassured me that Eli was in no way developing diabetes but might still need insulin in the short term.)

"I understand YOUR have a policy against drawing labs off PICC lines, but I don't personally have a policy against it. I'll be happy to get the blood from the line for you." That particular resident took it rather personally and started fear-mongering me about kidney toxicity. Not informing me of risks, fear-mongering. There's a vast difference. I looked at Eli and looked at her and told her, "He's fine. Our doctor will address it when he gets here in a few hours."

"This place does not make me suicidal, it makes homicidal. I'm not going to kill myself, I'm going to kill one of you."

"I do not possess the forebearance to talk to one more resident." Those were dark times. I eventually banned that resident from seeing us because in a month of daily contact he never once actually listened to me.

"Really?? More steroids?? Do you really think they're going to do anything??" That one I actually texted to our captain doctor. A day later I told him how pained I was to say it, but the steroids appeared to be making a very small difference (and nothing else makes any difference). He then told me about a paper he published in '86 basically about this scenario and the effect of high dose steroids. The man is good.

"I already told Eli he was done being poked today. If they want this test, the doctors need to come down here and wake him up and tell him themselves they need more blood. I'm not doing it." (Spoiler alert: those particular doctors were conveniently off the floor and unable to fulfill their duties. Although the nurse and I did tell Eli it was the mean doctors who lied to us that made the poke happen because that is 100% what happened that day.) Which was shortly followed by:

"If one more person comes to the room to do something to Eli and I don't know about it before they arrive, I am refusing it. I don't care what it is or why. If you order something and you didn't tell me to my face about it, then you better walk down here and do that. Or it's not happening."

It was rather fitting that on our final night on a main floor of the hospital Eli had to be woken up twice for insulin shots. Now that he's in the bone marrow transplant unit the care is much more patient centered. AND there are no interns or residents who don't possibly have the time to read the novel that is Eli's chart and understand the complicated issues that need to be weighed before making decisions. I'm really relieved that I won't have to spend every moment on guard in order to protect my traumatized kid from more unnecessary trauma. In BMT there is a small team of highly trained doctors who have an intricate understanding of each patient's case and history. They communicate well with the caregivers. They have protocols and policies to protect patients and keep them as healthy and comfortable as possible.
So as ridiculous and obnoxious as I have been for the last two months, there is absolutely no reason for it to continue. Now I get to actually be a part of the team and focus on taking care of my kid instead of fighting them all the time. BMT is a completely different world and I am so thankful!

Not forgotten

It's been really really rough recently. Eli's autoimmune disease has been in high gear and we have precious few solutions for the acute issues, plus Eli is experiencing tons of side effects from different drugs that need to be "fixed" with other drugs. Intervention leads to more intervention. A lot of times he needs medical intervention and plenty of times I'm fighting against it. Which is another issue. I'm exhausted from battling the hospital in order to advocate for my son. There are WAY too many spoons in this pot, they don't communicate well enough with each other, they DONT have a good understanding of Eli's medical history and his body's obscure ways, and they don't communicate well enough with me. To put it simply, I have very little trust in 95% of the people that are treating my kid. I have immense trust and respect for our primary doctor who is captaining the ship. So most of the time I'm fighting smaller battles with how Eli is being cared for and addressing the bigger issues with our captain doctor., who is well equipped to treat Eli.
I've been weary. It's difficult to solve one problem only to meet another problem and watch your kid feel worse and worse and get sicker and sicker. It's tiring to constantly (constantly!) chase people with needles away just because it's more convenient for them to poke your kid than access his central line to get blood. It's maddening to wake your kid up a few minutes after he falls asleep because the pharmacy just sent a med up and he has to take it, only for the tech to come by 15 minutes later, as soon as he's fallen back asleep, to get vitals, which will wake him again. Multiply by 5,280 and that is my life. It's painful to lift your kiddo who is carrying an extra 40% body weight and has no strength to hold himself up onto the potty with your bad back. My whole life I have been completely non-confrontational, to a fault at times. But this hospitalization in this hospital that centers around doctors' convenience instead of patient care has brought out a side of me I did not know existed. Maybe it's fear and maybe it's sleep deprivation, but I am a beast. I mean that in both the best and worst way. But I am not afraid at all at how my words will be received, only that the person I am speaking with understands what I am communicating. I do try to give as much respect as I would hope to receive (a considerable amount), but as the mom I am ignored and disregarded the majority of the time. I guess that always has been the quickest way to fire me up. I'm so thankful that our captain doctor values my experience and observations. He is a great doctor and really, an even better human being.
But I'm tired. I'm tired of advocating 24 hours a day, I'm tired of waiting for another shoe to drop, I'm tired of watching my kid suffer, I'm tired of being tired, I'm tired of living in a hospital, I'm tired of moving hospital rooms (we're on room #10 currently), I'm tired of missing my husband and my firstborn, and I'm really tired of just wondering where God is.
Yesterday, a friend of mine back home woke up in the middle of the night and her heart was really heavy for me and Eli. She felt an urging to drive up to see us. She prayed and went back to bed, and in the morning she felt the same, strong urging to get in the car. She told her husband and she went to church.
At church, another friend messaged me, asking me if I was watching church online. I wasn't. I was catching up on sleep from being woken up so much at night.
It seems our pastor had felt prompted to throw his whole sermon out and spend the service praying for some people who needed healing. They started with Eli.
After church my friend who had felt a strange urge to drive up to see me texted to tell me she was coming immediately. This was the first I had heard of any of it. Normally I would be horrified- it's not necessary for someone to take a 14+ hour round trip just to hang out with me and be a friend for a few hours. But I wasn't horrified. I just felt so loved. In the moment I read her text, I realized how much I have missed friendship. And I felt the extent of my brokenness that I am constantly hardening myself to. I felt like God was telling me he hadn't forgotten me. He saw me in the suffering that I have refused to acknowledge and sent someone to hug me. And because I experience love through acts of service, it was a big act of big love.
If I'm being 100% honest, I'm not sure what God is doing here. But I'm thankful he is looking after me, regardless of my doubt or rage or ridiculousness, with big love and faithful brothers and sisters.
LOVE.