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.

#carnivore

So, I'm basically attempting to inflate my iron level, as it is unlikely, but has been mentioned that if they decide to give Eli a certain blood product they could filter it from my blood. This way it would be fresher (less cells to die off while it's on a shelf or shipped) and multiple transfusions could come from a single donor (less antibodies to be added to Eli's cocktail of antibodies). But my iron is typically on the low end, sometimes too low. It's not a big deal to me, but doctors seem to dislike anemia, and also pushing people into anemia. So I need to boost my iron quickly, I don't care if it's temporary. 

Our bodies don't absorb iron well. They absorb iron from meat at a rate of 30% and iron from plant foods and fortified grains at a rate of 10%-20%. I'm not interested in gradually and healthfully increasing my iron level. I want that baby inflated in under a week. So, meat. Lots of meat. 

Sometimes I just forget to eat meat. I'm not really into it. Today I ate a burger and wanted to pump my stomach, I felt so sick. It wasn't the meat so much as the grease that came with it. It was a freshly prepared burger, not fast food, so I figured I was making a decent decision. Ugh. Then I didn't feel up to eating dinner and realized at 8:30 I had missed the meat window at the hospital. Meat fail. Tomorrow it's chicken liver tacos. I found a restaurant here that makes them. Hopefully they'll taste more like taco and less like chicken liver...

Everything I have to say about prepping my iron for a small possibility of blood letting can be said in hashtags. You're welcome. ;)

#jesustakethewheel #addthattomyresume #meathangover #allmeatallthetime #meathead #moremeatmoreproblems #eatmeatdonatebloodsavealife #carnivore #iwishcheesehadiron 

How to celebrate Valentine's Day

When I grow up I want to be like my 16 year old cousin, Carly. She and her friends are having a "gal"entines get together (thank you Amy Poehler for my favorite word!) where they will be making blankets for kiddos in the hospital. I mean, were you this noble when you were 16? Carly is also wildly smart, hilarious, thoughtful, just, and beautiful. I just love her!
Anyway, what a beautiful way to celebrate valentines day, a day that usually leads to so many let downs, so much wasted money, just ugh. I have long wished to not celebrate valentines day, just because expressions of love are more meaningful on a day when they're not required. I'm also crowd averse, so please let's just stay home and boycott valentines day with a pizza on the couch. But Carly officially wins at valentines day. She is celebrating love by showing love to those could use a little extra.
Inspired by Carly, here are some ways to truly celebrate valentines day and spread the love:
(some of these are very specific to my geographical location and life, but there are similar scenarios near you, I promise)

- make blankets for kiddos or adults who are in the hospital. If you're not sure where to take them, I know a few places, or you can contact the child life department at your nearest children's hospital. The Child Life folks will know just what to do.

- bring a few bouquets of roses (de-thorned!) to a nursing home and pass out single roses to the residents and wish them a happy valentines day. It's likely been awhile since most of those folks have received a flower, and a flower can brighten a day. Kids passing out the flowers would make this exponentially better.

- I would love to be able to take a load of healthy snacks to the family lounge at the hem/onc unit at Wolfson. It's very challenging having a child in the hospital, and it's very challenging to leave your child's hospital room to get a meal, much less a healthy meal. At Wolfson there is a family lounge that is always open with coffee and hot water (sometimes/usually tea bags), a microwave, tables and chairs, and a tv. It looks out over the river. On several occasions people have donated snacks for the lounge, and they always go fast, but are always so very appreciated.  It's meant a lot to me when someone considered the parents and delivered healthy things like bananas, apples, individually packaged cups of microwaveable oatmeal, granola bars, individual packs of crackers or trail mix, etc.

-Bring flowers to someone who has lost a loved one in the past year, especially a spouse or a child.

-make a connection and forgive someone who you have been holding a grudge against or estranged from. Far be it from me to tell you what to do, but it is a great act of love.

-hand write a letter to your child's teacher telling him/her the things you appreciate about them.

-babysit the kids of a single parent so s/he can have some time to him/herself.

-get background checked and fingerprinted and sign up to offer respite babysitting services to foster parents

-I'm still working on this one. I'd like to do something for some patients at the VA hospital across the street from our hospital. My resources are a bit limited, it's not like I can buy flowers and go pass them out. I need to be able to do something from our hospital and walk over to deliver it to the VA hospital and come right back. I can't leave Eli alone very long. I don't have space, access to a craft store, or much time. I have my crochet stuff, but I'm pretty slow. Anyone have any thoughts? Should Eli and I just make valentines cards?

There are at least a thousand more ways to show love on valentines day. What do you have in mind?

"He's awake!" and other ways medical people are not helpful

Sitting in the surgical waiting room, I hear several families get called to go see their child in recovery.  The nurse calls the family's name, and the family rushes toward the door. As they walk across the threshold the nurse announces, "He's awake!" in a boisterous, cheerful tone.
Let me tell you, I want to punch* her for that family. Because when she announces to me that my child is awake, it will not be a comforting statement. "He did well", "He's doing fine/great/good", "Everything went exactly as planned", these are somewhat comforting statements. Hearing he's awake is not comforting, because it tells me he's terrified, because I'm not with him. He's scared when he wakes up at night if I'm not there. He's scared when he wakes up from a nap if I'm not there. And you can bet your sweet bippy that if he wakes up in recovery and I'm not there he is going to be scared. You have procedures and protocol and policies, I get it. But please don't use this opportunity to remind me of my son's fear, especially when there is nothing I can do about it.
There is a good chunk of medical professionals who act like this is all just everyday life. And for them it is. It is their everyday work life. When it is your real, actual everyday life, it is exhausting and terrifying and frustrating. I get that you as a medical professional can't necessarily emotionally engage with all (or any?) of your patients for your own sanity. That makes sense. I'm not unreasonable. But do you know what is not helpful for exhaustion, terror, and frustration? Cheerfulness. Cheerfulness glosses over true feelings and experiences. Do you know what acknowledges the hard paths your patients are on? Compassion. Helpfulness. Calm. Empathy. Listening. These are things that help communicate that you see the patient. Being cheerful tells me you are not on my team and you do not really care.

*the urge to punch is really not her fault. Most of the time it is bubbling just below the surface these days, waiting for any small reason to poke its head out.

On faith intersecting with watching your child suffer

One of the things that has been bothering me since Eli got sick is the lack of scripture pertaining to watching your child suffer (and death being a possible scenario). I hear a lot from Christians about taking joy in suffering. Paul (of the bible. Author of a lot if the New Testament) talked a lot about having joy in all circumstances, taking joy in suffering, suffering for his faith, guaranteeing trouble in this life, and on and on. But people that talk about joy in all circumstances (including Paul), I don't think watched their child suffer from a life threatening illness. Or laid in a hospital bed, holding their child's listless body while a team of people wheeled the bed to the PICU while others were administering drugs on the way. There's not a lot of joy there. Mostly fear.
To me there are two applicable stories in the bible about losing a child. The first is where Jesus heals Jairus' daughter. Jairus sought out Jesus because his daughter was so sick, near death, and he appeared to think Jesus was his only hope at that point. By the time Jesus gets to Jairus' house, the girl is dead. But Jesus says she's not dead, she's sleeping. He tells her to get up and she does. It's a miracle. I'll get to the second story about losing a child in a minute.
My issue with the story of Jairus is that there's no guarantee that if I just ask Jesus to heal my son, he'll do it. And I know this because I'm not the only parent with a sick kid who could die. There are TONS of parents begging Jesus to heal their child and let them live (here. On earth. Not heal them in death or in heaven, but nice argument.). I know some of these parents. They are some of the best people I know. However, it's not my favorite club to be in. And let me just say that I cannot believe or trust a God who would perform a miracle because someone believed enough, had enough faith. My faith IS shaky right now. But I don't think that's why God hasn't swooped down and miraculously healed Eli yet. (And if I do lose my son and you think it's because I didn't believe or trust enough, please come to my house so I can personally punch you. No, I mean it.)
Here's what I mused about today. God gives us gifts with an open hand. When we hold those gifts with an open hand both us and others are blessed by it. It's not diminished. When your kid gets a life threatening diagnosis the knee jerk reaction is to grasp more tightly, more desperately to them, so as not to let them go (as if you have any control). But what if I am to hold my children, as a gift, with an open hand? Will that change the outcome here on Earth? Nah, I doubt it. It might change me. (Not that I particularly want to change, I really just want Eli to be healthy again and life to go back to normal. Regardless of what happens, healed in life or healed in death, I don't think I get to go back to "normal". Dammitsomuch.)
Okay, so here's the other part of scripture about losing a child, connected through an experience of mine. I have a friend who lost her teenage daughter very suddenly a couple years ago. It was even more terrible and heartbreaking for my friend than you are thinking. At some point in the months following her daughter's death, I remember praying and weeping and begging God to relieve some of my friend's complete and total shattered heart. I remember telling God that it wasn't okay and no one should have to feel what my friend was feeling. That I could hardly breathe thinking about it, and I wasn't the one who had lost a child. That it was too much, and who was He anyway? And you can doubt me or dismiss me, but in my weeping and begging God told me He lost his son, too. He knows what it's like to lose a child because he lost his son, too. (Even in my shaky faith that's kind of a profound statement that still causes me to step back. So take it in for a minute.)...........Sure, in the last few months I've questioned God on that because he knew from the beginning what was going to happen, and his son DID ascend to be with him....but I can't argue too much with the fact that God did watch his son suffer and die.
So where does that leave me? I don't know, man. I'm not going to stop praying for my son to be healed (miraculously, or through medicine, or miraculously through medicine), even if I'm unsure about the receiver of my prayers. Maybe I could try holding him slightly less desperately in my heart with more of an open hand for receiving and giving....although that sounds like a joke because have you met any mothers? We specialize in desperate love. And "Here Lord, I trust you enough to take my son if that is your will" makes me ragey and want to puke.
So I have no way to tie this all up with a bow, nor do I really care. It's just some of the better thoughts I've had in the last few days. Go forth and kiss your loved ones.

"I just can't imagine"

One thing Jerry and I hear a lot from other people regarding having a kid with a life-threatening illness is, "I just can't imagine!" It's okay, it's not offensive. Perhaps it's a bit distancing, but I get why people say it. I probably would have said it too, six months ago. 

Except I think it's a lie. I think people tell us they "just can't imagine" because they actually CAN imagine just a tiny bit and it is utterly horrifying and terror-inducing. Yes, it is those things as well when it is real life and not just an imagining. But what can we do? We wake up every day to fight the good fight. It is exhausting, but it's what any parent would do. Which is why so many people just can't imagine. They know they'd go to the ends of themselves and the ends of the earth for their kid. But they maybe don't know what those places look and feel like. I've been there. I kinda live there right now. It's survivable. You could do it, too, if you had to. I hope you don't.