Krysten: A quick update

Not a whole lot going on on her end.  I'm working summer camp this week and have a gazillion other things going on so I've been lazy to post anything. 

Krysten ended up with a blood clot in her upper arm so the Dr.'s decided they wanted to put the central line in over the weekend instead of Monday so she could get IV heparin to dissolve it quicker.  They got it in after 6 attempts they said.  It's in her neck as they couldn't get anything else in her arms.  She started on the heparin drip and then had to stop it because her blood levels dropped which signals a bleed somewhere. They did some testing and there was not any, thankfully!  Blood clots are always worrisome to me as you never know what they will do. 

Here is a picture of Krysten she posted on Facebook yesterday with her central line.  She thinks she looks awful, but from my perspective I think she looks pretty darn beautiful.  But I've seen her with the ventilator and a ton of other lines coming out of her and she doesn't really remember that or knows what she looked like I know. 

She's lost a good bit of weight this go around in the hospital again (aside from the weight she lost from the last stay).  They started giving her a medication that would up her appetite and it seems to be working as she has gained a few pounds back, last I heard. 

She will likely stay in the hospital about another week for observations with the blood clot, medications, etc.  They were hoping she'd be home by the end of this week but better safe to keep for observations.  She'll also come home on blood thinners and be on them for a few months it sounds like. 

Please continue to keep them all in your prayers for a speedy recovery.  She and Patrick are extremely grateful :) 

Also, if you have any prayers to spare.. my grandfather was admitted to the hospital for some testing to figure out some things with him.  Hoping for the best.  Thanks ya'll! 

In the meantime, I'm heading out of town in a few days and will likely not post any updates for awhile.. hopefully the next time I do it will say KRYSTEN IS HOME :) 

Krysten: The past few days..

Not a whole lot going on.  I visited for a couple hours today and she was doing ok.

She's been doing physical therapy daily and getting up and walking.  The anxiety comes and goes.  Her breathing was much better than the last time I saw her.  She is also off the high flow nasal cannula for oxygen and just on a regular one now.  So that's great, especially since her breathing is good. 

Otherwise she was pretty much hating life today.  She needs an IV line so she can get her antibiotics but all of her IV lines were shot.  They tried putting in a PICC line yesterday, no luck.  Between yesterday and today I think 3 or 4 people have tried to get an IV line in, no luck.  They decided to have a central line put in but they can't do that until Monday because she wants to be put in a twilight sleep and she had eaten today so they could not do it.  The central line will go in her neck.  So until Monday, they had to try again to get an IV line in and boy she was not happy.  They finally got one in in her arm.

Her poor arms are all blue and purple.  Can't say I blame her about not wanting more IV's, I know they have to hurt.  She said today was the worst day since she's been in the hospital.  From my point of view, I would definitely say that the 4 days when she first went in was the worst, when she was unresponsive and the Dr.'s didn't know what was wrong or what would happen.  She was sedated and can't remember that though!  It's so funny how each of us have different times that are good/bad points.  Even though I know she is not having a good time now, I know things could have been much different and I am thankful that she is on her way to recovery (again). 

Some more good news is she did get moved to another unit.  It's the same place she was the last time before she got discharged.  Fingers crossed for her to get discharged sometime next week.  I know her Orson guy wants his momma home again :) 

(Orson and Sophie)

Krysten: My visit today..

Krysten was doing pretty good today. Actually.. I would probably say outstanding compared to a week and a half ago, but she's got some hurdles to climb (as she did the last time she was in the hospital.  The mild pneumonia seemed pretty good to me as well. 

She has a lot of anxiety.  It's from being in the hospital.  Can't say I blame her.  The last time she got out it seemed to go away a lot.  Hopefully this time will as well.  But until she's discharged.. it's going to be there. 

The anxiety kept her from wanting to participate in PT today I heard.  I just missed the being there when they came, of course!  PT is very important for Krysten as we all want her to keep getting stronger.  I had a pep talk with her and I made her promise me (with a candy bribe) that she would participate every day from now on.  So Krysten.. you better be doing it tomorrow.  I'll hear about it if you don't ;) 

While I was there, Krysten developed a headache.  First one she has had since the first day or two she was in the hospital.  The Dr. came in shortly after and did a neurological check and everything was good there.  Her blood pressure and other stats were also good.  He wasn't to concerned but said he would call neurology and ask them for an opinion.  He also said they would likely send her for a head CT just to be sure.  A few minutes after the Dr. left she also started to feel nauseous and made herself vomit.  They decided to head down and take her for a head CT then.  In fact, they didn't even wait for transport, the Dr.'s and a few nursing students took her.  Talk about service. 

Everything turned out fine with the head CT.  No new brain bleeds etc.  I'm definitely glad they took her just as a precaution.  The Dr. on the unit said neurology would be in sometime tonight to talk to her.  It sounded like people who have bleeds on their brain like she did tend to get migraines sometimes afterwards though. 

She was chowing down on a chili-cheese dog that Patrick brought her up from Anne's Dari Crème when I left.  She even had a sip of water, and then a few more because Patrick left it sitting where she could get to it.  She's a sneaky little thing.. that's for sure!! 

I probably won't post every day now unless something major happens.  So if you don't see a new post every day, don't think the worst.  It's likely that there just isn't much going on :)

Love you Krysten!

Laura

Krysten: The Past Few Days..

Sorry about not posting anything in a couple days.. it's been about the same up until today and I have had killer migraines every night. 

Saturday/Sunday were pretty uneventful.  She ended up moving to the MICU, where they could monitor her breathing better.  She ended up with a tad of pneumonia, but it's been getting better every day since Saturday.   She was also breathing heavier, but that was likely due to the pneumonia.  Patrick said she was breathing a lot better today. 

She was anxious a lot this weekend due to not being able to drink/eat.  Thank goodness for dum-dums! 

Today Patrick said she is going to be transferred to the MICU step-down unit as soon as a bed is available!  She also had a swallow study done and she is allowed to have everything except thin liquids.  All liquids will have to be thickened.  They think the thin liquids going into her lungs is due to her high respiratory rate.  I'm not sure when they'll do another swallow study on her.  I haven't talked to her but I hope she is at least happy she can eat.  She also got up and walked 120 feet today. 

Hopefully when I visit tomorrow evening she will be in the step-down unit. 

Since you are likely reading this now Krysten, I'm so proud of you.  You are such a fighter and have more strength than you know and will overcome this obstacle as well.  Know that you are an amazing person inside and out :) 

Laura

Krysten: A Challenging Day

Yesterday was a challenging day.  I spent about 11 hours at the hospital.  I was too tired to write a post last night after I got home. 

The morning started off good.  Krysten was sitting up in a chair when I got there.  They decided to do the swallow study and put a halt on drinking.  The nurses were only letting her have swabs of fluids every 15 minutes or so.  She was none to happy about this as they had let her drink the prior day but she was still in good spirits. 

The respiratory therapist (RT) came to observe her drinking around 11.  Krysten was coughing after every drink and her voice sounded raspy and "wet."  The RT decided that it would be better to not have any liquids just yet, and to wait until Monday so she could get the full swallow study.  This was because the liquids could go into her lungs instead of her stomach and she could aspirate.  This would increase the risk of putting the ventilator back in amongst other things. 

Let me tell you.. SHE WAS NOT HAPPY ABOUT THIS.  She was thirsty, her mouth was dry, and she just wanted to drink. 

But otherwise, she continued to do good until just after 1pm.  Then her oxygen levels dipped and her respiratory rate increased.  From there is was just an up and down day.  She was upset and somewhat panicking because she couldn't drink. 

They are giving her IV fluids and she is getting food through a tube.  So she isn't dehydrated, but her mouth is dry and that is making her upset.  Because of the panicking feeling she had, her oxygen levels kept dipping to the 80's. 

I had many, many pep talks with her to try and calm her down.     The risk is just too great of fluid going into her lungs at this time.  One of her CF Dr.'s even called from his vacation in Ireland to make sure she wasn't getting anything.  Unfortunately, by the end of the day she could only have one mouth swab of water an hour so that did not help matters.

A few hours after I left last night Patrick said her oxygen levels were back up to 94-95, which is where we want them to be. 

She was also transferred back to the MICU, where she was during her last hospital stay.  They have no concerns neurologically anymore and since she was having difficulties with her breathing yesterday that was the best place for her.  The neurological team is not used to having patients with breathing problems.  They wanted her to go to the MICU step down unit but there were no beds available.  Let's hope that her breathing continues to do better and so she can be transferred out of the MICU in a few days. 

It will be a long weekend with no drinking though.. that's all I have to say.  Thanks for all your continued prayers and support. 

Krysten: Ventilator is out!

Hi everyone!  I didn't get to see Krysten today between the bad storms and work. 

They took the ventilator out this afternoon!  While this is very exciting, Patrick is still a bit concerned because they let her start drinking right away.  He is worried about the fluids not going to the right place and getting into her lungs instead, which would lead to pneumonia.  The nurse did say that she is coughing after she drinks and not during so that is good.   We are kind of surprised they didn't do a swallow test first.  Just continue to pray that while she is drinking, it goes to the right place!

Her breathing was pretty good after she got it out.. so that is definitely a good thing. 

Otherwise that was the biggest news of the day.  I'm going up again tomorrow to see her. 

Thanks for the continued prayers and support!

Laura

Krysten: Making GREAT STRIDES!

I woke up this morning and checked Facebook.  Krysten had been "liking" things and changed her profile picture.  I knew that was a great sign. 

I got ready for the day and headed up to Hopkins to spend the day with Krysten so Patrick could go to work and get some work done.  I got there around 8am, and didn't leave until almost 7. 

When I got there, she was wide awake watching TV.  During the morning, she had chest PT (for the CF) and the Dr.'s did their rounds.  The Dr.'s asked her to move arms, legs, tell them which arms they were moving, etc.  She did perfect for all of it.  Her CF Dr. also came in and checked out her lungs, in his opinion all seemed great there and he was OK with taking the ventilator out. 

In the end, the neuro team decided to keep the ventilator in for the day.  They were concerned with the last two chest CT's because they seemed a little cloudy (pneumonia).  They decided to change around her antibiotics to ones that would clear any pneumonia she might have.  They also decided to send her for another chest CT.  We still haven't gotten the results from it.  After talking to Patrick this evening, he thinks it really depends on the person reading the CT scans.  Sometimes he hears she doesn't have it, sometimes she could.  Last night he requested the CF Dr.'s come look at it because typically people who have CF have different looking CT scans (as in they tend to look cloudy to begin with).  But I understand that neuro is just playing it safe by changing her antibiotics around.  It sounds like tomorrow they are going to attempt to take it out.  Fingers crossed! 

During physical therapy this morning, the therapist asked if Krysten wanted to sit up in a chair later.  She shook her head yes.  The therapist then asked if she wanted to try and walk too, she eagerly shook her head yes.  Now, I was kind of taken aback by this.  The last time she was in the hospital it was like pulling teeth to get her to walk sometimes (and she didn't have the vent in then).  She was a lot weaker then as well, but I was still expecting her to say no.  The therapist came back a few hours later and told us she'd be back at 3pm to walk. 

From about noon to 3 Krysten did a lot of sleeping, there wasn't much action going on with people coming in and out either.  She was sleeping for about an hour and I decided to go out to the waiting room and grab a drink and snack as I didn't want to eat in front of her.  Imagine my surprise when about 10 minutes later my phone is ringing and it's Krysten.  She can't talk because of the vent, so I answered it and told her that I was in the waiting room, and I'd be right back there.  I hung up.  She immediately called back and I said "Krysten, it's a long walk back to the room but I promise I am in the hallway and would be there in 10 seconds."  I waited for her to hang up this time and she did.  LOL  Turns out she wanted her ice water.  

She can't drink anything since she has the ventilator in still.  With her water she gets these little sponges on a stick that she is allowed to out in her mouth.  Earlier today at some point she was bugging me to get money and go to the cafeteria and get a drink.  Bless her soul, I can only imagine not being able to drink when you want.  I felt so bad being the "bad guy."

Around 3pm, PT came back and got her all set up to walk.  There was a lot to do to get her ready.  They had to get a portable ventilator, a portable machine that watches her stats like BP and heart rate, and her IV stuff.  When we finally got ready, there were 4 people around her pulling stuff and making sure she didn't fall.  She got up, walked about 4 steps, and sat back down in a wheelchair because she was lightheaded.  A few minutes later she was up and at it again and walked about 8 steps.  She got to the doorway of the room and sat down again. 

She was tired by now and said she was done.  But.. not before she tried to sucker us all into going to the cafeteria to get a drink.  I bartered with her and told her we would push her down the hallway in the wheelchair and back if when we got back to the doorway she would walk back to her bed.  Haha.. it worked!!  All in all she walked somewhere between 20-25 feet all with the ventilator in.  I am so proud of her!! 

She was really tired after this little adventure.  She rested some, but is having a hard time really sleeping which is understandable. 

After awhile, she was up and watching TV again.  She asked for her ice water a good bit as well.  One time I caught her with her mouth wide open with the two hands around her cup getting ready to try and drink.  That didn't go over well when I said "no way, no how."  She gave me the evil eye.  Bad sister moment again.  She just can't do it with the ventilator in and the risk of aspirating. 

Compared to three days ago when she wasn't responding to anything.. she is making GREAT STRIDES toward healing.  She's also still got her feistiness in her, that's for sure. 

Krysten, I loved spending the day with you!  You are an amazing gift from God and you are doing amazing things in your recovery.  I am so proud of you.

Thank you all for the messages and prayers being sent.  They are definitely working.  Praying she can get the vent out tomorrow :) 

Laura

Krysten: Hopkins, Day 5

Not much to update today.  I had to work so couldn't go and see Krysten.  So, everything here is  through my mom and her visit today, as well as Patrick. 

Krysten is still on the ventilator.  They did all the tests they were planning while she is sedated so she is good to get off of it when her oxygen level gets to 40%.  Then they will attempt to take it out.  As of 4pm, it was 45%.  Hoping for tomorrow morning but Patrick said not to rush it.. hehe

My mom said she walked in and Krysten waved to her.  She is doing better than yesterday.  She was asked a bunch of questions by Dr.'s/nurses and only got one question wrong (the current month).  She's also asking for swabs of water in her mouth, and she wrote down "chap stick" earlier when she wanted that.  Overall, they are very happy with her progress and expect her to make a full recovery. 

I will find out a lot more and get to see for myself tomorrow. 

As always, thanks for everyone's continued prayers and support!  They are sure working.  Love you all!

Laura

Krysten: An Amazing Day

Here's today's update on Krysten.

Patrick and Krissy (her other sister in law) got an update from the Dr. late last night.  They were kind of leading away from their prior thoughts of it being RCVS.  They basically said we'd have to "wait and see" what happened when she got taken out of sedation, and that they didn't really know if they would ever figure out what happened.   Her MRI results were good and everything looked about the same as two days ago.  Also, from what they had seen of the EEG so far, everything looked good there too.  As in, no seizure activity.

Patrick went to bed and woke up around 4am.  She was the same as she was the night prior, unresponsive to all commands, etc.  He then went back to sleep and awoke around 8am to the nurse asking Krysten to move her toes.  He said he looked at her feet and they were moving!  He jumped out of bed and she had her eyes open, was shaking her head yes and no, and squeezing her hands.  What a miracle!  The nurse said the only change that had taken place was that they took her off one of the medications they had been giving her (for seizures I believe).  He went out and asked the Dr. what happened between now and last night.  The Dr. did not have an explanation, only that it must be from the guy on his shirt.  He had a bright orange Jesus shirt on.  Wow!

He called me around 8:45 to tell me all this and I had tears of joy in my eyes.  What happened between last night and today?  It was all the prayers being sent for her.  Amazing.

I was about to walk out of the house to head up there.  I got there and had to wait until noon to get in and see for myself.  What a long wait.

I finally got to go in and she opened her eyes and was shaking her head.  I started crying again.  Honestly, I was probably scaring her.  I made sure to tell her that they were happy tears and nothing was wrong.  I also told her that her best friend Mekayla was going to find out if she was having a boy or girl today and not to worry, that Mekayla was going to tell Patrick and she'd still be one of the first to know.  After a few minutes of talking to her, I let her rest.  She needs that so she can continue to get better.

I had to leave around 2, and my mom went up around 3.  She gave the same report as me, and also that Krysten looks really good today and she is breathing on her own for the most past even with the ventilator in.   We are hoping after she gets a few more tests, that the ventilator will come out in a day or two.

What a miracle.  I really don't know what else to say.  It has been quite the emotional roller coaster the past few days with all the unknown.

I want to thank everyone for everything.  You all are truly a blessing and we are all truly thankful for all the thoughts, prayers, everything!   They are truly working.

To all my friends who also have loved ones in the hospital, because it seems like quite a few of you, they and your families are also in our thoughts and prayers for complete healing.

Laura

P.S.  Mekayla found out that her and her hubby are having a girl, and Patrick was one of the firsts to know.  So I know Krysten knows by now :)

Krysten: Another Journey

I think I am just going to do what Patrick does and update on my blog.  I can write more and it's easy to do. 

This is strictly through my eyes. 

On Thursday around 11:30, Krysten called me asked if I could take her to get a CT of her abdomen.
She has been having major stomach pains and vomiting/nausea since Monday or so.  CF patients are prone to digestion issues so we all just thought it was that. So anyways, I said sure, she said she'd text me when Hopkins sent over a script to the local lab.

I went out and ran a few errands and hadn't heard from her so I sent a text. No answer. I then went to another store and called when I got out. No answer. I figured she probably went to sleep, but also had a bad feeling at the same time.   I went right over there, it was around 2:15.

She had been sleeping, but I could tell something was wrong. She said her head hurt so bad, and she started crying. I asked her if she had eaten anything but she hadn't and she couldn't hold anything down. I got her some pain meds for the head, and made her drink a little Gatorade. I told her I was going to get her something to eat, so I went downstairs to see what there was.  Her sugar drops sometimes so I thought since she hadn't been able to hold anything down, that she was sick and had a headache from that. 

I came back up less than 5 minutes later and she was having a seizure.   I immediately called Patrick and 911. She started to come back out of the seizure before they all got there but she wasn't speaking.  Then she had another as the paramedics were taking her out to the ambulance. 

We finally got an abdominal and head CT around 3.5 hours later and the Dr. came in with the radiologist on the phone while she was still in having the scans and was asking us if she had fallen because the head CT showed a brain bleed as bad as a person in a major car accident.  He went back out to talk to the Radiologist and then came back in to talk to us.  My mom, Patrick, and I literally looked at this Dr. with our mouths wide open.  No, she hadn't fallen, she hadn't had a traumatic injury. 

They vented her there, did a lumbar tap, and transferred us to Hopkins right away which Patrick requested but they were going to do anyway.  

Since Thursday when she got to Hopkins, they have done a lot of tests.  MRI's, CT's, an angiogram, EEG's, lumbar taps, etc. 

The Dr.'s did finally tell us yesterday that they think she has RCVS (Reversible Cerebral Vasoconstriction Syndrome) and should make a full recovery. 

However, on Friday morning Krysten was able to talk and could understand what we were saying.  Throughout that day, she deteriorated to the point today where she is only opening her eyes slightly and moving her limbs if we annoy her.  She will not squeeze hands or do anything the Dr.'s request of her.  This concerns us.  Today they took her for another MRI, which we are still waiting on the results of.  They also started a 24 hour EEG to look at brain wave activity for 24 hours. 

I have also received many questions regarding her Cystic Fibrosis.  This has nothing to do with that.  In fact, her CF Dr. at Hopkins said that this was a first for him.  He has never visited a patient of his in the NCCU.   She has had borderline high blood pressure since she was in the hospital the last time, which they think may have caused this.  As of now, her lungs are looking good. 

Everyone, please keep Krysten and Patrick in your thoughts and prayers.  Krysten has already showed that she is a fighter with her last hospital stay.  She can do this but it is an extremely difficult time.  We just want them to come home and be the happy in love newlyweds that they are. 

Love you guys!  Here are a few pictures from their wedding on June 1st.