September 28, 2024

 So, this will probably be my final update.  Also, it will talk of the passing of Katharina and the steps she went through so if you don't want to read about that, please feel free to skip this entry.

On Sunday Katha's specialist stopped by to check on Katha.  He said her heart was steady but weak and he was afraid that she would start having seizures.  He wanted to make sure we had medication if that happened.  He also felt like we had a few days to a few weeks left.  Definitely not a month.

After he left Amory's parents and niece came to stay a few days and say goodbye to Katha.  Rosie, who is 2 years old was very interested in Katha and why she slept all the time but we tried to keep her out of Katha's room as much as possible.

Katha's eyes were very dry because of the dehydration, so Amory ran out to get eye drops and we applied them and they seemed much better.  Also, her lips were very dry so we would take the sponges on a lollipop stick and put apple juice or water around her lips.  

On Monday we got something for Katha's lips because she hadn't drank anything in days and was so dehydrated.  Anytime I tried to put something on her lips she would open her mouth as if she wanted to drink it.  So, thinking I could moisten her tongue as well, I put the sponge into her mouth and she chomped down on it.  My first instinct was to pull it out but I ended up with just the stick, the sponge was still in her mouth!  I got her mouth open and I tried to sweep her mouth like I had been taught when she was choking.  But, she clamped down on my finger and almost took the tip of it! She was definitely still fighting.

On Monday afternoon, I ran out to get Jay from volleyball practice and get a couple things from the drug store.

When I got home, we had a house full of visitors.  One of whom was an old homecare worker of Katha's.  She had the best stories of Katha and definitely brought a lot of cheer into the home.

After everyone left and the in-laws and I were about to go to bed, Katha started breathing funny and was no longer responding at all.

Her breaths came out in little puffs, and when I called Amory in, he rested his hand on her stomach and could feel her heart beat, strong and fast.  In fact, when we pulled back her covers, you could even see her heartbeat.

I immediately called my mom and told her that I thought that Katha could pass away in the night.  She started getting ready to come over.  

Less than an hour later, I noticed a dear friend who has helped me so much was up (she is a nurse and a mom of a kid with special needs, not to mention an angel on earth!) and I asked her if I should call homecare. She said she was driving by and would drop in.

She came in, took one look at Katha and told us she is entering the final stages of life.  She then proceeded to tell me what I could expect step by step as Katha's time came to a close.  

When mom got there we sat for a few hours with Katha and she started slightly responding again.  Because Katha doesn't know the meaning of the word quit, mom said she would stay up with her while I got a couple of hours of sleep.

I slept until 7 the next morning and went and checked on Katha.  When I left her breathing was very loud and when I came back you could hardly hear it.  I told the boys that I didn't think Katha would make it through the day and that they were welcome to stay home.  They both chose to go to school.

As the day went on, Katha's breathing got more and more quiet and shallow as well as her heartbeat got slower.

I tried to move Katha legs into a more comfortable position but she was too close to the end of the bed so I asked Amory to move her up in the bed.  

After he did, a couple minutes later, she started gulping air, which we were told would be one of the final steps before she left us.  I got my mom to quickly call my sister and my niece who wanted to be there and Amory called the boys to come home and Amory's dad went to pick them up.

Then, with Amory, my mother and I all surrounding her and loving her, she winced a few times and was gone.

My sister came in a few minutes later, followed by my niece a few minutes after that.

Dom and Jay came and saw her but didn't really feel comfortable so they went downstairs pretty quickly.

A nurse came and confirmed she was gone, then the funeral home came and took her body.

It's hard to remember everything, and I'm sure I've missed several details, but that is pretty much Katha's last moments.

I just want to thank everyone for their outpouring of love.  We never truly realized the community we have behind us and we have been so touched.

Life without taking care of Katha is going to be a huge adjustment.  Amory and I keep catching one another going to check on her.

We are so thankful she is in a place where she will be able to laugh, sing, shake her booty and tell stories again.

We have a funeral mass planned for November 1st at 1 PM at St. Mary's Church and a celebration of life planned for 3:30 PM at Alix Hall.  If you can make it, we would love for you to join us. This may still change but it is the tentative plan.

Thank you again to everyone for all the love, prayers and hugs that have been sent our way.  It is very humbling.

Sending my love to you all, and in Katha's language "Na-Foo" which she said instead of I love you because it was the sound of blowing a kiss.

September 22, 2024

 Hi Everyone!

I didn't expect to update so soon, but things are happening fast now.

Last Monday I contacted Katha's specialist.  I told them how little she is eating and drinking.  They recommended that I take her back to ER with a letter from them explaining the situation.  I informed them that we would like Katha to pass at home.  So, they sent an urgent referral for a palliative team to come to our home.  They were also worried that Katha wouldn't make it through the night.

I had some friends come over that night and while we were talking Katha tried to get out of bed and walk.  She took a pretty nasty spill but didn't react at all.  There was no crying or yelling, she just sat there and waited for us to pick her up.  That was the first time I believed she wasn't in pain at all.

On Tuesday the palliative team came in.  They gave us a bunch of information but couldn't do much for us.  The most important thing they did was make it legal for Katha to pass at home and for us to be able to contact a funeral home rather than EMS when she does pass.

On Wednesday we found a funeral home that we liked and contacted them and they are on call for when Katha passes.  We also called a priest to do her last rites.  Katha was sitting at the table when the priest came in with food sitting in front of her.  So, when we started we took all the food and the drink away as well as taking off her bib.  When we bowed our heads to pray she pulled a piece of bacon out!  I spent the rest of this time that should have been very sad trying not to burst out laughing.  It was just so Katha. However, she started gagging at just the thought of eating.  She would put food up to her lips and gag without ever putting anything in her mouth.

The aide Katha had for years in school also came on Wednesday for a visit.  As soon as she went into Katha's room, Katha's eyes lit up and she immediately put her arms out for a hug!  Katha giving an uninitiated hug is unheard of, I cried.

On Thursday Katha tried to walk again so we had to put the rail back on her bed to make sure she stays in it!

On Friday we had some sippy cups that Katha can use in her bed delivered so she can just constantly suck on the sippy cup because she hadn't drank in a couple days.  We also decided to stop giving her insulin at all.

Saturday I was pretty scared would be her last day because she hadn't drank anything and her blood sugar was getting really low.  It occurred to me that if she has a low, there is no way for us to get any sugar into her.  Jay also had his first high school volleyball tournament and I wanted to be there for her.

Saturday morning her blood sugar was at 10 (normal is between 4 and 8) and I could watch her on video so I decided to go to the tournament and she was fine all day.  In fact, she drank two glasses of water (which totaled about 8 oz. of water)!  I still called her doctor for advice on whether or not we should give her medicine if her sugar gets low.  He advised that we should simply because watching her having seizures would be harder on us than it needs to be.

We tried giving her chocolate milk in her sippy cup just to help keep her blood sugars up and she refused to drink it.

Last night her glucose alarm went off at 5 in the morning and I jumped out of bed to see what was wrong.  She was having a high and was at 15!  Then, when I woke up at 8:30, I went to check on her and she was at 22.

What I have learned over the past week is that Katha survivors instinct is strong.  We have to watch her like a hawk.  I have had to tell her to get back into bed several times.  She smiles at me when she does something that she would get in trouble for normally.

I have decided to write down some of her progress in the same manner I wrote her symptoms.  This part may be a lot harder to read so please feel free to stop reading here.

Weight:  Katha has lost about 100 pounds now.  Her bones protrude and the port that we use to have to search for now sticks out and you can see the entire thing.

Lips: Katha's lips are so dry they are bleeding.  My friend gave us some ideas how to keep them moisturized so that she can be more comfortable

Skin: Katha bruises so easily.  I'm scared when changing her because the slightest touch causes bruising.  She also get sores really easily.  The skin on her feet was peeling off but the nurse told me to put some vaseline and socks and her feet and that cleared it right up.  Her pressure ulcer had healed really well.

Eyes:  Her eyes are blood shot and dry.  She keeps having goop come out of them.  They have also sunken in quite a bit.

Breathing: Katha's breathing is very shallow.  I often have a hard time telling if she is still breathing

Comprehension:  Katha is with it.  She still understands what is happening around her even if she can't communicate at all.  She still tries to help me while I change her.

Fingernails: Her nail beds are just a little bit blue.

I can't think of anything else for now but will add more next time if I do.

September 15, 2024

 So, when I first started this blog it was because I had a lot of questions after Katha was diagnosed.  I went to the internet for answers.  My biggest question was what is our journey going to look like?

What I found was a lot of medical sites but not a lot of personal experiences.  So, I figured I would start a blog that could keep all of my loved ones updated while hopefully giving another parent some answers they were looking for.

Mostly, I wanted to know what the end is going to look like.

Well, in this latest update, we're experiencing what I wanted to know about at the beginning.

For months now, Katha has not been eating or drinking a lot.  Currently, she has a couple of bites of food a day, if any food at all.  She also has about 10 oz. of fluid.

Katha's weight has dropped significantly.  At Katha's highest weight she was just over 200 pounds.  Currently, Amory and I guess she's around 120 pounds.  Her bones are sticking out and I can lift her again.

I believe Katha's blood platelets are low causing her to bleed and bruise easily.  

She is getting pressure ulcers from the way she sits.  We went to the hospital for this a couple weeks ago because I was worried it was infected.  It wasn't and the doctor informed us that it would heal by itself.

Katha is tired all of the time.  She still gets out of bed every single day.  Mostly, I think because she is too stubborn to stay in bed.  She gets up between 1 and 4, usually, falling asleep at the table by 8 and can be convinced to go to bed around 10.

She has also started to have absence seizures.  When most people think of seizures, they think of falling on the floor and flopping around.  That's not what happens to Katha.  She spaces out and it looks just like when anyone spaces out.  However, when you call her name and touch her, she doesn't "come back".  It usually lasts 2 or 3 minutes.  One night, while I was putting her to bed, she had an absence seizure and I noticed I couldn't hear her breathe.  So, I put my ear to her chest and I still couldn't hear her breathe.  As I lifted my head she started breathing again and looking around, then she fell asleep.  I was so worried she wouldn't be breathing the next morning but she continues to be the warrior princess I know her to be.

Dom and I were discussing Katha and he was saying he just wants one more Christmas with her.  I'm not convinced she will make it to Christmas so, this weekend, we are going to set up the tree.  I figured, why wait?

I don't know when I'll be able to update next, it's emotionally difficult right now but I do want to record this as it happens so that I remember everything.  I also know, it's awkward to know what to say during a time like this so I have a request.  Please, feel free to message me on facebook with some memories you have of Katha or favorite stories of her or a way she has touched your life.  I'm finding myself very sentimental and it's helping to remember the good times.

Thank you everyone for your continued support I truly love and appreciate all of you.  Onto the symptoms:

Enlarged liver and spleen: They are large but not overly.

Dysphagia:  I believe this is part of the reason Katha doesn't eat.  She chokes on everything, and badly.  It freaks people out when they are around her.  I think she's partially scared to eat because the choking is so bad.

Basal Ganglia (holding limbs in awkward positions): Whenever I wash Katha's hand I have to pull them straight and it's stiff and sore.  

Dementia:  Katha shows a lot of signs of dementia now.  About a month ago she was sitting on the toilet watching me go about my business.  I looked at her and suddenly a look of recognition came across her face.  I believe that she actually forgot who I was for a minutes.  But, being completely non-verbal now, it's hard to know for sure.

Seizures: As stated above, Katha has absence seizures.  The frequency, I would say, is every few days.  Which, for a person who has seizures is still quite rarely.

Gelatstic Cataplexy (falling down in response to a large emotional outburst): When Katha passes out now, it lasts about 45 to 60 seconds.  Her breathing can get really shallow during these spells.  

Sleep related disorders:  Katha sleeps on and off most the time.  She always seems tired but refuses to stay in bed.

Hearing Loss: I haven't noticed any significant change but again, with her being non-verbal, it's difficult to assess this.

Diabetes:  Katha has been on 2 types of insulin since her diabetes diagnosis.  Fast acting insulin is for when she eating and helps control her blood sugar quickly.  Long lasting is for keeping her blood sugar stable consistently.  Katha hasn't had any fast-acting insulin in a few days.  We also try to keep her blood sugar slightly high because we often can't get her to eat or drink anything and lows can be quite dangerous.