I had a reassuring chat with Gannon’s neuro surgery team – I’m going to explain this in kind of a weird way so bear with me.
Spinal cord: horses tail Fibrolipoma: piece of gum on the wall of the stall
Once in awhile the horses tail might get stuck in the gum and cause an issue but for the most part the horse doesn’t even notice. BUT for a very small percentage of horses, it does cause an issue (tethered cord syndrome) and the gum needs to be removed from the wall of the stall. But honestly, it’s just a tiny piece of gum and could it really cause that much trouble? There are probably a lot of people in the world who have gum on the side of their stalls and don’t even know about it but there are also people who have gone on the side of their stalls and it causes a lot of entanglement.
Make sense? So we have the telehealth conference call on June 25th with neurosurgery to discuss whether or not the gum needs to be removed off of the stall (ha) or whether or not it is contributing to anything.
Then back to Milwaukee for a neurology appointment/get blood drawn for genetics/get Botox in the bum on June 30th. Then another big visit with the muscular dystrophy, neurogenetics, and a couple other people on August 10th.
For now, we will continue in Milwaukee until we have a diagnosis and then transition care back to the University of Iowa. It’s a long trek but we feel like we are getting places we didn’t with U of I. In their defense, neurology wasn’t even like a possibility/thought in anyone’s mind until the past month but Children’s is really making it happen.
I work tonight and tomorrow night overnight. I haven’t worked an overnight since April so wish me luck! I got a hotel room (deeply discounted for hospital employees) for tomorrow to stay in town and sleep. Lots of driving – lots of time away from home.
We had SUCH a normal day, it was so great. The boys played outside all morning (no clothes required appearently) and I watered all my flowers that Craig tried to kill while I was gone.
I know you guys have been waiting, I don’t have much to offer.
Gannon has a fibro lipoma of the filmum terminale. If you google it, it’s associated with kids with spina bifida and tethered Cord syndrome. Maybe Gannon has a form of that, maybe not.
This is an abnormality of his spinal cord. It could get bigger and cause more problems as he gets older. This could mean something, this could be nothing. This could be the answer to all of our questions – this could explain every single one of Gannon’s symptoms. It could be totally benign. We were supposed to find out today but we didn’t.
Gannon has anal achalasia – this could be totally explained by his fibro lipoma or it could be totally unrelated.
Gannon could have a genetic condition. Doctors are leaning more towards Ehlers Danlos syndrome and less toward Prune Belly Syndrome but we won’t know until we consult genetics which also didn’t happen today. His distended bladder, undescended testicles, and paper thin abdominal muscles could be prune belly syndrome or totally explained by the fibro lipoma.
Gannon may need a laminectomy (spinal surgery) to cure/treat his fibro lipoma, he may not. It could be nothing.
Gannon’s low muscle tone cannot get better. Gannon can gain strength in his muscle though through physical therapy but you can’t change muscle tone.
Gannon is being referred to a muscular dystrophy clinic. This could just mean he is being referred to a clinic who specialized in muscle disorders, this could mean they need to rule out muscular dystrophy.
Gannon is being referred to a neurosurgeon and a geneticist, all in the muscular dystrophy clinic.
It’s all up in the air, the ride home from Milwaukee was the longest 4 hours of my life, Gannon threw up on the way home, we both cried on the way home, we were both so sick of being gone. We still didn’t get a diagnosis. Only more questions, now thrown into the outpatient world of coordinating appointments.
Someone once told me chase the therapies, not the diagnosis. We will start physical therapy ASAP.
The most reassuring conversation I will take away from this week was with one of the residents caring for Gannon.
“We see a lot of kids who are perfectly healthy and parents INSIST there is something wrong with them but they have a perfectly healthy normal child. This is not that. There is an answer to be found. This isn’t just coincidence. Your concerns are valid. Something is wrong but it isn’t life threatening today.”
That’s what I know which isn’t much. I’ll update when I know more.
This morning I just wanted a break. After rounds, Gannon was wild. I had to chase him around with his IV pole, we aren’t allowed to walk outside of our room in the hallway, the play rooms are closed, we were absolutely stir crazy. Gannon was fussy because he couldn’t eat or drink anything because he was sedated for his MRI.
I spent the morning cursing coronavirus because I just wish I had someone with me who could take over. I wish a volunteer could come sit with him while I stroll to the gift shop. I needed a break.
Gannon is currently in MRI getting imaging of his spine and brain. All I wanted this morning was a break and now all I want is Gannon to be back. It’s been a few hours, we have a few hours to go. This empty room is too empty.
I thought I wanted to leave and drive to Lake Michigan that I can see our the window but it doesn’t feel right leaving.
They’ve coordinated a genetics consult for us whole we are in town. Might be tonight, maybe tomorrow. They are so hard to get into so I’m so so thankful. So, another night.
I took a bath, did my hair, washed my clothes, caught up on Netflix, I feel human again and I smell good again.
I wanted to offer a glimpse into how COVID has effected our hospital stay.
First of all, this admission/testing was scheduled for April and canceled and rescheduled.
I’m not even going to get into the COVID swab fiasco but we had to have two negative COVID swabs to be admitted.
Second of all, only one parent is allowed. That sucks.
Third of all I have to wear a mask everywhere (understandable) and all nurses/doctors are wearing N95s.
Fourth of all, some consults with the specialists have been on zoom.
The gift shop is closed/limited hours which is a bummer because I want a T-shirt.
The main registration almost kicked my grub hub delivery driver out of the lobby before I could make it downstairs to get my food because he wasn’t with a patient. I hollered “Hey are you grub hub? That food is for me!” After I hadn’t eaten all day and spent the only 5 minutes I had to myself walking down to get my food this was kind of frustrating but I get it.
There are no volunteers which is a huge bummer – so many times they’ve offered to sit with Gannon or take him in a wagon ride to give me a break but not this stay.
It’s all okay but a huge difference from our other hospital stays.
That’s what I know. I’m counting down the minutes until Gannon comes back. Did you catch this mornings update? Check it out here:
I’m typing this in between snarfing down breakfast. Rule #1 of having a kid in the hospital is eat what you can, when you can, as much as you can because you don’t know when/if/where your next meal is coming from. Yesterday I realized I didn’t drink any water – AT ALL. It can be hard to prioritize your own needs when your kid is sick.
We’ve had a busy morning. Overnight went GREAT – We only woke up at 4 am for a change/vitals so we are feeling well rested.
A neuro PA came and assessed Gannon before clinic – she wanted to know any possible concern or question we’ve ever had about Gannon since I was pregnant with him. And I happen to be an expert on that topic.
She agrees: way low muscle tone and LOOSE. She feels like his shoulders aren’t symmetrical- she again validated all concerns that I’ve had and brought up. She says they are all very subtle but all over are concerning – the next step neuro wise is lab work and the MRI of brain and spine and possibly genetic testing.
Then we got the results of the motility study and *drum roll please* Gannon has a problem with his anus! I’m still waiting to hear back on an official name of the diagnosis but essentially there is an internal sphincter and external sphincter that have to work together to pass stool. The external anus is just fine – the internal sphincter does not relax. It’s like trying to push poop through a closed locked door. This is NOT anal stenosis like we were first diagnosed with – this is NOT something that can be treated with anal dilation like Mayo and U of I told us – he needs to be sedated and get a Botox injection into his bum to help the sphincter relax. This condition causes painful defication and chronic constipation! Otherwise the motility study was just fine which I’m so thankful for because motility conditions have no cure – just treatment. We have a diagnosis, they found a problem, now we have a treatment plan.
But that’s not all, Dr. Sood emphasizes that the lack of abdominal muscles and generalized low muscle tone is contributing to his chronic constipation.
They are concerned that Gannon has something more wrong with him. Here are a few points I’d like to share:
Gannon May have Ehlers Danlos Syndrome – a connective tissue disorder. Ever seen someone with that crazy super stretchy skin? There’s much more to it than that but it’s a concern that causes low muscle tone and very loose joints. There are many different kinds of it. I have two cousins with a form of Ehlers Danlos syndrome. It can be genetic but also 30% of people with Ehlers Danlos syndrome have it but do not have the genetic mutation.
They still aren’t entirely sure that Gannon doesn’t have a variant of Prune Belly Syndrome. The three hallmark symptoms of this are lack of/extremely thin abdominal muscles, enlarged bladder, and I descended testicles – mostly result in malformations/problems of urinary tract. This was my first diagnosis I Dr. Googled for Gannon back in August. U of I And Mayo both told me that he doesn’t have it because his belly isn’t wrinkly enough and he hasn’t had a UTI.
The neuro PA who evaluated him does not think it is Ehlers Danlos because he has SUCH low muscle tone – more than you’d expect with Ehlers Danlos – she thinks we will find something on the MRI.
So that’s the update. We don’t know/think we will be released today. Gannon did not have another episode of croup but he will be Sedated again today so we will see how that goes.
Also – is it weird to talk about my sons anus to thousands (yes – thousands – over 2,000 people read my blog yesterday) of people? No. In our house your butt is the same significance of your elbow. We use proper terminology to describe body parts, we have an open dialogue with Carver about body parts and plan to continue that way. I have an awesome resource/page I follow on Facebook I’ll link below which emphasizes the need to start this kind of open dialogue with kids from the start. I sometimes think I missed my calling as a sex education teacher!
Also, while I snuck to breakfast the nurses got Gannon to sleep for me by rocking him in the stroller and playing blippi ❤️❤️
To list out the days events in order in a nice blog post would take too long. So here it is:
We are staying another night. That was pretty clear when I went back to the PACU/recovery. I could hear that classic barking cough/stridor that only my boys have from the entrance. I told them Gannon had stridor/upper airway swelling after his last surgery. They used the small size tube to intubation him – a newborn size AND they gave him steroids before he even woke up – he still was croupy and had a terrible time breathing/getting calmed down. Sounded just like croup. They doubled down in the decadron and still no relief. That was enough to keep him overnight, especially because he rebounded in the hospital last time around midnight and needed more meds/treatments.
here’s the link to the first time this happened at the university of Iowa in February.
Gannon will need Botox in his rectum which is another procedure and can be done at university of Iowa – his rectum does not relax and is very stretched out – otherwise everything appeared okay colonoscopy wise – no issues with blood flow or inflammation or obstruction.
Everyone is stressing that his GI issues are only a symptom – something else overall is going on – his muscle weakness is a concern for everyone – Dr Sood is leaning more towards the prune belly variant idea that I suggested last August. He said he could feel his scope move through Gannon’s intestines if he put his hand on his belly. His abdominal walls were “paper thin.”
The general peds GI surgeon (who was AMAZING!!) told me that he suspects Gannon will need some kind of operation in the future ranging from colostomy to just a button on his belly to flush to keep him cleaned out/release gas – he was so so kind – he said he would be honored and privileged to be Gannon’s surgeon and remain on his team.
He says he’s seen a lot of kids butts (it is his specialty after all) but the actual buttocks muscles of Gannon’s are unique – very flat – very low tone – he says that he appreciates how hard I’m fighting for him and emphasized that his GI issues are only a symptom of what is wrong with Gannon.
The swallowing – the walking – the delayed sitting up – the spine that sticks out – the legs that bend funny – the constipation – the big bladder – the big belly – the hernias – the testicles – all of it – they are all just individual concerns – I feel like independently there wasn’t a concern but FINALLY someone cares enough to tie them together – Dr Sood isn’t our answer, he is just treating a symptom of a larger disease process – a disease that involves LOW MUSCLE TONE. Over and over that has been the theme of the day: hypotonia.
They are so concerned in fact, that Gannon is having an MRI of his brain and spine tomorrow. He will need to be sedated but not intubated. They’ve coordinated a neurology consult for tomorrow as well. These people are on top of it.
Gannon held so still and slept for most of his manometry test. Dr. Sood is reviewing the tests and will be giving his conclusion/recommendations tomorrow morning in combination with the neurology and hospitalist team who coordinated this whole thing.
I do have a message for a surgeon who once consulted on Gannon’s case:
Dear Dr. P – You once told me that the only facility in the world who does motility studies is in Ireland and that the research is very new and not accessible to kids with “lazy intestines” like our Gannon. Well, you were wrong. I found one for myself with a quick google search and asked for the referral myself. Thanks for nothing. Sincerely, Kalissa and Gannon Milwaukee, Wisconsin (4 hours away from the office we were sitting in when you told me that last October)
Gannon got a bath and ate real food and got all of his tubes out (except IV) and his currently watching blippi on my lap. He’s pooped. My food is being delivered soon but I wanted to hammer out an update quick.
Here’s an example of how Gannon sits/how his legs appear. Just not quite right. He was eating supper – they sent up a fork and Gannon jumped right on it – he wouldn’t use his fingers or let me help him.
It’s all coming together. Hopefully he doesn’t rebound overnight and his breathing is well enough to be sedated for the MRI tomorrow.
Thanks for reading – I’ve actually got a lot of time on my hands between visits and in waiting rooms so I enjoy keeping ya’ll up to date. See you tomorrow!
Here is the text I got from Gannon’s surgery nurse. P is for Paul and he’s very nice.
Everyone is so great here. It’s a wonderful experience.
I showed Dr. Sood the picture from last night when you could see his bowels just under his skin and he said that is not normal and he expects to find a diagnosis with the tests today.
Gannon got more versed (relaxant) on his way back to the OR and I got to see his smile and hear his giggle for the first time since yesterday morning.
He is back right now getting a colonoscopy, an endoscopy (upper GI scope), biopsies, a Pena stimulation test and manometry wire placement.
It was a tough night with even more enemas, replacing his NG tube again, another X-ray, so so many blow outs.
We had to attempt to replace the NG tube probably 5 or 6 times. We don’t even know how it got out. The nurse and I were talking one minute and we looked at him after he gagged and it was out.
It was a terrible 45 minutes. It just would not go down and would coil out through his mouth. We ended up having to squirt water in his mouth while holding him down and placing the NG through the nose so that he would swallow the tube and it would go in the stomach. If it didn’t work (which happens) he would cough and gag and sputter and we would have to start all over.
He was screaming so hard and couldn’t relax during the enemas that the water wouldn’t go in. Every time we laid him flat he would scream because he thought he was getting another enema. It was TERRIBLE.
I’m exhausted. I’m eating my omelet in the waiting room with all the other nervous parents. I feel like you can just look at someone and tell if they are a parent of a child here or not, we all have that’s same tired, anxious look.
We might be released today, we might not be. We will see what the tests show. I know we will be here until at least 4 pm. Gannon will have a tube out of his mouth and a tube out of his bum. The wires loop through his bowels and see how his bowels work. He has to be hooked up to the machine for several hours – at least until 4.
Here’s a video about manometry, I know is is a hard concept to wrap your head around.
Anyway, that’s what I know. I’ll update when I can. Thanks for reading. If you missed yesterday’s post about Day 1 in Milwaukee, read more here:
We were up and on the road to Milwaukee (4 hour drive straight East) by 4:00 am.
I was so thankful there are Kwik trips all along the way to Milwaukee. I had to stop for gas on the way and I had to use the bathroom so Gannon came with me! Can you imagine how difficult it is to hold a child the entire time you go to the bathroom and wash your hands? It was great. He was still in his jammies. People were judgy. It’s fine.
When we finally got here, there is a TON of construction so I got lost in the parking ramp and the whole time I was trying to find my way there was a jack hammer running in the loud echoey parking ramp that made me and Gannon both a little anxious.
Finally got in, checked in, with all the bags, just me and Ganjo, and that was a ride. A dad passed me carrying a single empty infant car seat. HA! Only a dad could do that – no diaper bag, just whizzed right by no problem followed by me with the toy bag, the clothes bag, my fanny pack, and the stroller loaded down. I’m sure it was a sight to see.
The Iowa/Wisconsin border over the Mississippi was beautiful
Gannon got some meds to help him relax (intranasal versed) which was great. He was so giggly by the time we were starting the IV and putting the tube down his nose. It went okay, he wasn’t completely asleep by any means but he won’t remember anything. That was all great and fine. The flight team was a dream and got the IV no problem.
So began the Go Litley. They have to clean Gannon completely out just like adults do for their colonoscopy. That sucked. The first two hours wasn’t bad and then all hell broke loose.
Gannon isn’t allowed anything but water apple juice or jello. The go litley goes through his NG tube. On top of that they had to give Gannon an enema. This is the last happy picture of Gannon I have from today. Things went downhill after this.
Guys, the orange jello came out the other end looking like Intact orange jello. I thought he puked – nope. That’s all I’m gonna say. It was terrible.
I went through three outfits, so many bed changes, my clothes are in the laundry in the parents lounge. Gannon would cry whenever another wave of diarrhea came. We are going to be continuing the enemas HOURLY on top of the go litley going in at 300 ml/hr.
Then Gannon’s IV came out. UGH. The flight team, again, amazing, came today start another one only this time no versed. Gannon can’t have any pain or sedation medications at all or it will skew his studies tomorrow.
So so so many doctors have been in to see Gannon and you guys, they are CONCERNED. They think that all of these issues are all tied together! They want to investigate it! They want to do more imaging! They believe me and can’t believe no one else has been able to put together the puzzle. There is a lot of talk about a neurology referral and possibly an MRI of the spine to check for abnormalities that could be causing all of these issues. However, Gannon really only was referred for the motility testing, not neuro concerns so there’s some red tape there. I say bust through the red tape and give us some answers.
Gannon’s belly is so distended and they are working on that right now. They think there is still poop stuck up in there – that everything else is coming around it and that’s why his belly is getting more distended instead of less distended as we clean him out.
Here’s a picture – those lumps? Those are literally his bowels, right under the skin. Everyone comments that his abdominal muscles are separated but they actually are concerned about it today. When should that go away? When does that get better?
He’s finally asleep but it was so hard to get him to sleep and for him to let me put him down. We will see how the night goes. I’m hoping it is restful. It’s already been a long ass day.
A year ago today, I was spending my time with my Dad in his last few hours on earth. At 12:15 am, it will be one year since I last heard his voice. I think the kindest thing anyone can do is reach out on death anniversaries and so so many people have to let us know that he isn’t forgotten. Thank you.
Tomorrow is the big day – what we’ve been waiting for – the manometry study. I’ll explain more later. For now, it’s only 7 but I’m heading to bed. Who knows what kind of sleep I’ll get tonight (and yes that is a pull up over a diaper, the CNA thought of that!)
So today was insane. Carver was in RARE form so here it goes.
Carver is an early riser – like way early – usually up by 5 am. We’ve let him come in our bed, sometimes he goes and gets a snack, sometimes he watches the TV in our room, sometimes he crawls in Gannon’s crib. I’ve woken up to crumbs in my bed but nothing more than that – he’s usually pretty good and we DON’T want to get up that early.
This morning he burst into our room as soon as our alarm went off and exclaimed “I CLEANED GANNON’s room mom! Mom come look!” Well Gannon’s room is the hallway. We store a few things in the hallway, it’s typically kind of messy – a catch all area.
We walked out and yes, the hallway was clean. By that I mean, there wasn’t any clutter because Carver had thrown everything in the hallway over the railing and down the stairs.
Carver shoved half the junk in his room
So he spent quite some time hauling everything back upstairs. I appreciate the thought, I don’t think he was “trying” to be naughty but..yeah that’s not cleaning (although it seems that’s how his dad cleans 😉 )
He threw the other half down the stairs
I should have taken that as a warning to NOT TRUST CARVER when I assume he is sleeping. It may have prevented incident #2 of the day…
I nap with the boys. Gannon is ready for a nap around 11 am and honestly, today, so was I. Carver usually naps with us. He laid on the couch and I did too – we usually sleep upstairs too but carver wanted to watch Frozen 2 which we have to watch on the downstairs TV.
We all laid down and Gannon and I and (I assumed) Carver fell asleep. I woke up after the movie, Carver asked if he could still watch TV on the couch and I put on a new show for him and now I know he fell asleep at my feet. I woke up later, Carver was still sleeping, Gannon was still sleeping. I snuck out into the kitchen to get a glass of water.
There was a big orange spill on the counter. I thought that was weird. I went to wipe it up and try to figure out what it was. It smelled like Children’s ibuprofen. Weird.
I had given Gannon Tylenol/ibuprofen this morning because he his teething and miserable. The Tylenol was still in the counter, but the orange ibuprofen was gone. Weird.
Then I got thinking – did Carver get into the medicine? I go and wake him up and demand to know if he has seen the bottle. He said no and fell back asleep. Whew! Okay. But WHERE IS IT?
I frantically searched around the house some more when I couldn’t find it I really woke Carver up. Like REALLY made him wake up when he showed me where he had taken the bottle…the toy room closet. Another big orange puddle on the floor, it was almost EMPTY.
I’m not exactly sure how much was in it, but I would estimate 3/4s full when I gave Gannon ibuprofen that morning. There was probably still 1/4th left with a big puddle on the counter and a big puddle on the floor. So that was still 1/2 the bottle to account for.
Carver had drank it. Panic mode? Not for this ER nurse. We got a lot of “kids getting into medicine” in the ER – usually it isn’t a huge deal so I called poison control. They were so helpful and agreed – just keep an eye on him – make sure he doesn’t get too sleepy or he will have to go in. If he finished the bottle it could have been worse.
Then carver INSISTED on going back to sleep and telling me how tired he was. Eek. That made me nervous. He was yawning and he’s typically a no napper to begin with. So we went on a bike ride to stay awake and he’s been just fine ever since. I think it’s safe to say we are out of the woods. Lesson LEARNED. He says he needed medicine because he sneezed 🤦♀️🤦♀️
Shame me if you want, but don’t pretend like it couldn’t happen to you. Anyone keep pills in their purse? Anyone also keep candy in their purse? What if your grandkids or kids can’t tell the difference? I’m sharing my story to make sure you double check. We thought medicine was safe on the counter with the lid on. I thought I could trust carver.
And for the grand finale, Craig and I were playing at my moms outside – teasing each other, playing keep away when Carver ran right up to me and bit the fleshy part of my upper thigh – hard enough to immediately bruise and draw blood. I think he got too excited and wanted attention and wanted to play/tease too but OWWW!!
Anyway, so that was my day! Carver always keeps us on our toes! We’ve had lots of long talks today. It’s hard being a mom some days! As we were laying in bed about to go to sleep Carver looks up and asks “Mommy, do you still love me?” My heart BROKE. Yes of course Carver, there’s nothing you could do to make me love you any less.
None of what he did was malicious, he really thought he was helping clean, he really thought he needed medicine, and he just got too excited when we were playing. He’s just all the way 3 years old.
My father, Roger Kramer passed away from lung cancer on June 2nd, 2019 after his 129 day battle. His cancer progressed quickly after his diagnosis on January 24th 2019. The cancer spread to his C2, eating away at the bone and fracturing his neck. After finishing chemotherapy and radiation, a PET scan t revealed the cancer had spread throughout his body. I was honored to care for him in his final days and he passed away 4 days later. We not only lost a father but Craig and I lost a dear friend and community member. A Fatherless Daughter is a blog series that highlights his last few weeks and the struggles we have had to overcome as a family as my dad’s cancer battle came to an end.
May 28th 2019
Dad had a PET scan today. The results suck.
Cancer has spread just about everywhere it can go. His femur and hip, a couple spots in his colon, his lungs lit up, they keep calling it “bad acting” cancer. It’s very aggressive and unfortunately we don’t have much time left with him and Dad will be referred to hospice care.
We’ve got lots of plans to make. We’re okay. Cancer sucks. That’s all we have to update tonight.
May 29th, 2019
Here’s the Kramer family update:
We are okay. We are working on planning out our next few weeks.
There’s an odd sense of calm in the midst of all this. We are getting family pictures taken on Sunday. We are planning a baptism for Gannon and Georgia so dad can be there. Karl is on his way home from Houston as we speak. Last night mom, dad, Carver and I went to see where the plot is in the cemetery. We are talking about funeral arrangements and wishes. Mom and dad are going to finalize things with the lawyer.
Is it morbid to be doing all of this? Maybe. It does not feel that way. We talk about it openly and often. Carver knows Papa Moo is going to be with Jesus soon. His response was, “Okay! Me pop tart?” 😂 He came with out to the cemetery last night. We need to keep talking about it for his sake and ours.
How are we doing? Sometimes we are sad and crying and can’t even explain why. Sometimes we are laughing so hard we can’t breathe. Sometimes it feels like we can’t breathe at all.
We are all fielding tons of phone calls and messages. If we don’t get back to you, don’t take it personally. Maybe we are busy or maybe it just takes too much emotional energy to open the message and respond and keep up a conversation and it’s easier to just say nothing.
Dad is doing actually really well. He’s on less pain medication every day – the radiation to his neck is really starting to work to keep him comfortable. He needs more oxygen than he used to. He gets tired out easily.
Lots of people ask if dad is well enough for visitors or phone calls. The answer is YES! Dad is still the same as he was – probably even clearer since we have half the amount of narcotics on board. Please call, please visit, please send a message on facebook. If you’d like to arrange a visit, please message me or mom. Drop ins are okay but we’d prefer a little notice in case mom and dad have a scheduled meeting or visitor.
Lots of people want to help. I am cautiously offering the opportunity to provide food. We have a ridiculous amount of family coming, mom is STILL doing childcare through all of this so nap time is between 1 and 3 pm. Please feel free to drop off a casserole, hot dish, sweets, meat and cheese, preferably in a freezable container that does not need to be returned to you.
I think that’s enough for today. I was going to elaborate more on the behind the scenes of this post but I’ll save that for a part two tomorrow. It’s a rough week. I just realize now how little time we actually had with him after his diagnosis of terminal cancer. We were hoping for two weeks and we got about three days.
My father, Roger Kramer passed away from lung cancer on June 2nd, 2019 after his 129 day battle. His cancer progressed quickly after his diagnosis on January 24th 2019. The cancer spread to his C2, eating away at the bone and fracturing his neck. After finishing chemotherapy and radiation, a PET scan t revealed the cancer had spread throughout his body. I was honored to care for him in his final days and he passed away 4 days later. We not only lost a father but Craig and I lost a dear friend and community member. A Fatherless Daughter is a blog series that highlights his last few weeks and the struggles we have had to overcome as a family as my dad’s cancer battle came to an end.
Here is the Kramer family update:
I know we’ve been a little quiet since dad is in the hospital. It’s all been up in the air.
Here’s the scoop:
1) Dad met with speech pathology. They assessed dad’s swallowing. They think dad might be aspirating which means part of his food/drink goes into his lung instead of his stomach thus the pneumonia won’t go away or “aspiration pneumonia.”
2) Speech pathology couldn’t quite tell what was going on so dad essentially swallowed a few video cameras to see if he was aspirating. He passed that test just fine and is NOT aspirating.
3) They did not end up doing a bronchoscope. If they do the bronchoscope, dad May need to keep the breathing tube in for a few days and be sedated. Hopefully this new antibiotic will take care of everything.
4) On paper, dad looks good. Dad feels much weaker and requires much more oxygen all of the time. He used to be able to wear it here and there and now he needs it all of the time until this pneumonia clears up.
5) Dad will get a PET scan on Tuesday (which was supposed to be today) and results on Wednesday.
That’s dad’s plan. Everyone has been sending and posting pictures wearing their #kramerstrong shirts! It has been so uplifting to see while dad is in the hospital. If you have a picture leave it in the comments!!
As for now, mom and dad are on their way HOME! If you’re the praying kind, please include mom and dad in your prayers. Please let us just have a weekend at home. Please no more ER trips and ambulance rides and hospital admissions. Please allow these antibiotics to work. We are strong but we are tired.
I have some more to update on how amazing our community has been and has supported us but for now we are scrambling to get the house ready for mom and dad to come home.
Are you still reading? That was a long post! Thanks for keeping up with us! ❤️
