19-11
This evening they’re going to run some blood tests on me. It is because I have been lying in bed for two days feeling terrible and I have no appetite at all. It’s not going well. My temperature is high and I’m in a lot of pain. We assume that it is because my platelets are very low. Better to get it checked, was our thought.
00:19 – my platelets are fine but the inflammation values are a bit on the high side, the rest of the results will come in on Friday. My temperature went down and I could go home, because nothing was wrong.
20-11
The decision has been made that I should be hospitalized. This sucks. The entire department is running and all kind of checks are being done. What’s going on?
21-11
For a couple of hours I’m having a high temperature and now I’ve also passed the 40 degrees. The found a bacteria in my urine and that’s why I have to take antibiotics. They are testing to see if it is a kidney pelvis infection. My blood pressure is stable, but they did hook me up to the heart monitor. I was showing signs of dehydration, that is why they gave me fluid through the IV. Also I have been very nauseous and have worked myself through multiple anti-nauseous medicines.
The doctors ran their tests. They have decided to start treating me for a kidney pelvis infection, but they also feel pressure from my stomach and therefore they decided to make an echo. If they don’t find anything strange I’ll start with probe feeding.
On the echo and the pictures you can see that my intestines are not working and that my stomach is filled with fluid. Currently my stomach is being emptied and the content looks terrible. During the echo I also puked at least 10 to 20 times. My body was a mess.
22-11
I’ve been throwing up the whole night. They think due to a burst blood vessel, but they’re also checking other causes since it’s taking such a long time. My esophagus got damaged because of all the puking, which could also be the reason why I’m throwing up blood. A moment ago they took another blood sample and a team of doctors will start making a plan. I’ve been pushing them on my platelet values to get another transfusion later today as in the evening I’m starting again with my treatment. Still I’m having a lot of pain in my esophagus.
The CT-scan, which has been done today, shows that there is a thickening of the mucous membrane in the bottom of my stomach and the connection to my upper intestine. If this is an infection can’t be said yet, but they’ve also found an E.coli bacteria for which they will start treating me as well. The doctors are still figuring out how exactly, since I’m also getting treated for my kidney pelvis infection. The treatment for my brainstem cancer will be temporarily suspended (after being discussed with my own doctor) until my body is in a stable condition again. But they will start probe feeding me today to relieve my stomach and intestines, they’ll also give me a range of vitamins. But: when can we go home?
23-11, 03:30
I’m having trouble falling asleep, but why? Pain? Not tired? Trauma from the previous hospital visit? I keep staying away and time continues to pass. I don’t mind that much for myself but I do mind for my mother, because every time I have to ask her if she can rinse my mouth or grab the nose spray, etc. After discussing I’ve got a sedative to be able to sleep, so I’m wondering what it will do to me. For the last couple of days, and even now, I was not allowed to eat or drink, which makes me feel super dehydrated. That is why I’m rinsing my mouth quite often. Oh, AND: mints work really well when you’re not allowed to eat or drink! The strawberry and breath mint were my favorites during these hydration-free days. So I’ve been sitting up straight for a good half of the night and I think it is because they’ve started too late on my probe feeding. I think that is what gave me the energy. But that is only a Korver-theory; I wouldn’t know.
Instead of regaining strength I had to take a step back today. They started to give me Kalium as well and the fever is now above 39 degrees again. Plus: they connected me to the permanent heart monitor. The problems are adding up again. The infection values are rising and so is the fever. Also this is the third time they’re giving me a different type of antibiotics. All the values are going down, minerals, salts, blood values and also my white platelet values. Today they’ll try to stabilize everything, that has the first priority. I’m entering the night with my temperature being above 40 degrees and they’re giving me extra paracetamol. What’s happening to me?
24-11
Today I started they day with a 40 degree fever. Today not a lot will happen, because it’s Sunday. They are going to check Friday’s scan again with a focus on a possible appendicitis and / or peritoneal infection, because we insisted. As always I’m being taken care of with lots of love and my family tries to get me through this as good as possible.
A appendicitis infection has been ruled out. The medication has been scaled up and I’m also getting a treatment against a yeast infection. Just a moment ago they hooked me up to a bag of thrombos for my platelets and I’m also getting an injection for the white platelets. Also a team of the IC will come by to think/ have a look with the doctors to see if they can help. Now I’m exhausted, today was the first time since a couple of days that I could have a shower and wash my hair. I’m really looking forward to have a sneaky sip of hot chocolate in a couple of days #Ihaventbeeneatingordrinkingforalmostaweek. ut I was allowed to have popsicles, so that was my breakfast, lunch and dinner!
Finally there is some clarity. The infection has spread towards my kidneys. They haven’t been able to get my salt, minerals, platelets, kalium and all the others to stabilize and if that doesn’t happen I won’t recover. Now they made a plan. In a moment I’ll be brought to the operating room in the hospital next door for a small surgery while being asleep. I’m not nervous at all, because it can’t get a lot worse than the current state I’m in. During this procedure they’ll insert a tube in one of my bigger blood vessels, where they can put medicine and other stuff through. After that the expectation is that I’ll be patched up in a couple of days.
The procedure took a lot more time than expected and of course: complications. When the tube was inserted in my neck vein it tickled my heart a bit by which my heartbeat rose to 190bpm. With shocks they tried to lower my heartbeat but it didn’t work until they gave me an injection. Because of that I had to stay longer in the recovery room. When all my values where checked over there, everything seemed to be wrong as a lot of blood values were far too low. So: that that resulted in transfusion number three for the day and multiple injections with I-have-no-idea. Now everything is being set up and they’ll give me even more different types of medicine. Unfortunately my good friend Prednisone also popped by.
25-11
My blood values are finally improving and the fever is reducing. Small steps are being made. They just made an ECG and today I’ll get a visit from the physiotherapist. A culture has been set to develop from my tongue and urine. I have blisters in my mouth, so they’ll give me something for that as well. In a moment I’ll go to the hospital next door again. They’ll insert a probe which will reach below my stomach. Slowly they start probe feeding me again but also medication will have more impact that way. The stomach probe will remain, so that will be tight. Two probes in one nostril. The joke of the week was then of course: that’s double trouble!
26-11
I slept well! No fever. The surgeon came by at 08:00, nice and early. We’ll have to treat the wound on my back a bit different for the time being. All the checkups have been done and the doctors are pleased! It’s going well and the blood values look good. The amount of probe feeding will be increased and then during the week I can slowly start to eat and drink again. Unfortunately, I’m not allowed to order a big-mac menu, just yet, said the doctor. ell, If I could pick what I would eat first it would be a simple sandwich. McDonald’s; for now no thanks. If I start with that I’ll have to go straight back to the hospital, haha.
27-11
The oncologist came by and told me that I would have to regain more strength before I can start with the treatment on Monday. The coming days the emphasis will be on regaining my strength. In a moment I’ll have a cup of soup! he doctors said that on Friday he’ll look into when he’s going to fire me from the hospital, to which my response was: ‘I’m my own boss!’ 😉
28-11
I’ve slept quite well but we’ve been putting quite some work in stopping my nose from bleeding. Thick clots came out. Then we decided to call in a nurse and she put in a drip of some substance. After that I fortunately fell asleep. oday a very sweet lady came by and asked me if I wanted to some ‘craft works’. Sure, why not!? So I’ve spend the day making an embroidery and I was enjoying it. Completely in my element and we had a great time! Also later on the day a nail stylist came by and asked me if I wanted my nails to get done. Sure, bring it on! That was also really nice. After that I could use a small nap, but that was allowed. Also I’ve spend quite some time with my mom to make necklaces for www.littlelovebird.nl, because bead necklaces are becoming hip again!
29-11
It seems that I can go home on Tuesday. I can have light meals (think of plain yoghurt). The blood values are looking good. Tomorrow they are taking me off the prednisone fortunately and on Monday I’ll start with the treatment again. They’re also removing the tube from my vain, but that will happen in my room. What a relieve that must be: all those tubes and probes gone.
2-12
Going home tomorrow just became uncertain. My infection values rose from 26 to 60. Everything is being checked again: urine, blood and in the afternoon they’ll make an echo of my stomach and belly. Also they want to keep me for 24 hours under surveillance after I took the medication, but I’ve explained them that side effects only start to show áfter 24 hours. Big bummer.
3-12
Today they finally removed the probes and tube, ahhh what a relief! It was more of a burden than I realized. And yessss I can finally go home! They restarted my treatment again and I’ll be back on Friday for my checkup. It was so nice to come home since my dad bought a Christmas tree!!! Cozy days here I come.
