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.
Sunday, March 29, 2015
Saturday, March 21, 2015
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!
[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!
Monday, March 16, 2015
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.
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.
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