A new day, a new week. Full of possibilities and opportunities. And maybe even some answers and plans if we are lucky.
I figured after my crazy whine/rant last week that it was time for an update, and time to change my attitude.
The update is that Kendall’s lab numbers came back looking even crappier than we expected, and her team in milwaukee STILL didn’t have a good plan. to say I was disheartened, depressed, disillusioned and defeated would be an understatement. I have honestly never seen Kendall’s H&H so low (hemoglobin and hematocrit – markers in the blood that indicate how well the body is doing getting oxygen to all of it’s various parts). But the on-call NP (nurse practitioner) that had the bad luck of getting my phone call stuck adamantly to the plan that the doctor had come up with earlier that afternoon (BEFORE we received the lab results).
The plan? continue giving enteral iron drops into kendall’s stomach, except now we make sure it is completely empty for two hours beforehand and two hours after we dose her with 300% of the recommended dose for someone Kendall’s age, and we also give a vitamin C supplement plus a few cc’s of pure orange juice in for added absorbability. I know that this all sounds like a pretty easy thing to do, and such a simple fix, but it unfortunately is not that easy!
First of all – we’ve BEEN giving iron, as directed by the floor team at the hospital when she was discharged in December with anemia – for three months now. And yet her numbers are still dropping. Milwaukee argues that i’m not giving her “the right kind” of iron. when I explained to Kendall’s pediatrician what we were dealing with, she recommended a supplement that she has researched extensively, and recommends whole-heartedly. It is an organic preparation of iron that HAS been proven to have high absorbability, especially in the way it is prepared – with B12 and Vitamin C added in with the iron. It is gentle on stomachs (regular iron drops are notoriously very hard on even the healthiest of tummies), absorbed and tolerated well, and proven to have results. It doesn’t have a lot of the unnatural chemical fillers that most commercial preparations have, etc etc etc. I’m not trying to be a spokesperson for this iron supplement, i’m just explaining WHY we went with this one.
Two years ago when we had this same issue (Kendall’s H and H were dropping due to anemia – she ended up being transfused and THEN we started the oral iron therapy) – the iron drops ended up causing a pretty good-sized GI bleed, made her non-stop nauseated, and in general were not well-tolerated. Of course the transfusion helped her bone marrow be able to produce it’s OWN red blood cells, so we didn’t have to do a long course of oral iron. (In case you’re wondering, most people get iron absorbed in their functional stomachs as they eat a variety of foods that contain iron, and their levels aren’t being dropped due to blood infections, UTI’s, and general energy-crashes. Obviously, kendall’s kinda behind the 8-ball in this department). But because of those issues, I wanted to see if there was something else we could try this time. In theory, Kendall’s blood counts were high enough (her iron stores were what were bottoming out in January before our Disney trip) that ANY iron supplementation should have resolved the issue.
Unfortunately, the stress of the trip, the respiratory virus, and a couple UTI’s in between now and then have all served to suck the energy she needs to absorb, convert and utilize the enteral iron. Bringing us to now, as her iron stores have still continued to drop, as have her blood counts now also.
So Milwaukee’s grand plan is that we do THEIR drops (which aren’t theirs – they are basic generic over the counter ferrous sulfate drops, which happen to contain at least three or four unnatural ingredients/chemicals designed to help stabilize the iron on the shelf.) The same ones that made her so sick last time. Except this time we are doing a CRAPLOAD of it. Where one bottle should last most kids a couple months, we have to go get another bottle in two weeks. Everything i taste or touch reeks like iron. And i’m not even taking it! I jsut squeeze it out of the dropper! We have to crush up a Vitamin C pill, dissolve that in warm water, and give it with the iron into her stomach. Even if I push it painfully slow, she still gags and retches after I do this for a good 15 minutes. A few times it has even exploded back out of her stomach through the stoma (hole) that her GJ tube goes in. That was fun. Let’s just say that iron isn’t the easiest medicine to clean out of clothes/carpets/floors/skin. It turns this nasty black color and is just disgusting. We also can’t have anything that might remotely have dairy in it in her stomach for two hours prior and two hours after we do the iron. Trying to juggle this schedule with naptime (when she is typically hooked up to formula feeds) is enough to make me want to pull my hair out.
So this magical new iron formula (i’ve taken to calling it unicorn tears because apparently it is supposed to MIRACULOUSLY magical in its healing properties) is supposed to make her feel better within three days, and to have brought her blood counts up within one week. Ignoring the medical FACT that it takes 6 weeks to make red blood cells, i’m hopeful that this doctor knows what she’s talking about. I’m not supremely confident that this is the best course in this particular situation, but I am going to trust that she knows more than i do about how blood counts work in general. I know Kendall – but she knows medical stuff.
The phone conversation I had with the on-call doc/NP on Thursday night however was NOT pretty. I was frustrated to TEARS by what I perceived to be their complete lackadaisicalness in handling Kendall’s situation. While I am hopeful that the unicorn tears iron drops work their magic – WHY has it taken this long for them to call and help me? Why have they just sat by and watched her drop to transfusion level before coming up with this magical idea? And why does SHE have to be the one suffering and feeling so crappy while THEY sit around and wait for the unicorn tears to work their magic? I completely lost it on the poor NP when i heard HER kids happily playing in the background. I said “ I am SO TIRED of watching my child have ZERO energy to play with her sisters, I’m tired of being Dr. Mom, I’m tired of trying to constantly balance her medical needs with her need to be a regular kid who just wants to LIVE.” She said “ i know you really want a transfusion but that’s just not where she’s at right now.” Oh then i got REALLY hot. “ I do NOT want a transfusion for my child. I want her to feel better. I want YOU to do your job. I want what you have going on in the background – just regular kids playing around. Have YOU ever had to decide to transfuse or not transfuse your child? Have you stayed awake over her bed at night watching the monitor, praying for numbers to stabilize, adjusting oxygen flow rates? NO. So until you have, do NOT tell me what i do or don’t want for my kid. I want her to BE a kid. The end.” By this point I was screaming and crying. I think I said something about seeing her in the ER when my kid crashed and i hoped she kept good notes about telling me it was fine to let my kid crash because it would be HER responsibility, and then I hung up.
So I have watched her closely all weekend. Ben was gone with Kealey driving to Texas, so it was just the mommy show all weekend again. (Luckily we were able to have a few hours of nursing coverage, and my mom was able to come spend Friday night, so i didn’t completely have a breakdown like i felt like i was on the verge of!) She was low-key all weekend, as I expected. No crashes, thankfully. And I am quite sure that is due to the large amount of people who do pray for her every day. I know there is no magic. There is only God and His saving grace, His physical healing. And whatever is going on in her body, He is aware of it. He is in control of it. I am letting go of my own stress over this situation, and letting Him be in control. Really, I have no other choice. I do not have it in me to be able to be stressed non stop about Kendall. i have FAR more stress in other areas of life. Like having to figure out how we will all live in this house peacefully adding in another adult. Our house is small for the six of us. Add in the nurses and it gets smaller. Add in the mother in law and we are going to start exploding out the windows. But we are blessed to have this house. I will find some way to make it all work.
Kendall today is in a lot of bladder pain – having a lot of spasms because her pee is almost straight mucus. She has another UTI, which is pretty much the last thing she needs. Hopefully her body can fight that off without having a majorly increased need for white blood cells because i’m pretty sure her bone marrow is doing it’s darndest to produce red blood cells right now. It’s the typical “let’s hope that B happens before A, and that C hurries up before D” time game we play with her. She is looking paler by the minute, and she was already extremely pale. Today she has this frenetic energy that we used to see as her body’s last ditch effort before it crashed, and I hope that isn’t what is happening today. i hope maybe she is just having a burst of real energy.
So that’s where we are today, Monday morning. Things change around here pretty quick though sometimes.
Thank you so much to all of you who messaged/texted/commented here and on FB your words of support after my last post. It all made me very emotionally overwhelmed, and I was not good about responding to everyone. I’m hoping to catch that up today. I’m in a MUCH better headspace for this week. It’s going to be a good week, a better week. Sending you all a huge hug from me – thank you.
Hope you all have a rockin’ Monday!