Kaylee Gommel's fight against Neuroblastoma. This is her Road to Recovery!

Posts tagged ‘Catheter’

5 day Summary – “Eventful”

 
 

It’s been a pretty hectic week since our visit from Hank Fraley and his family. What started off as a great week, ended with Kaylee, Kyle and me – all sick. Carol mentioned a slight sore throat, but appears to have dodged a bullet. On Thursday, Kalyee had an appointment with Rainbow to have blood drawn. This blood draw was one for her record books – her white blood-cell count was a “goose-egg”. For the first time since she started her chemotherapy treatments, her white blood-cell count hit rock bottom – zero. On top of that news, we learned that she needed a red blood-cell transfusion too. 

They started the transfusion, but about halfway through the transfusion, Kaylee developed a fever which immediately prompted the nurses to stop the transfusion, and administer antibiotics. We’re not sure whether the transfusion or her low blood-cell count caused the spike in her temperature, but no matter what, she needed to be on antibiotics. 

This next part is a bit foggy, but somehow, we learned that a epidural staff infection had formed in one of Kaylee’s tubes. We’re pretty sure this is the reason for the spike in her temperature. This new dilemma introduces a whole new scenario for us… we were unclear about how this would affect the schedule!? We already knew that if the infection could not be contained and dealt with – Kaylee’s surgery, to have the temporary catheter installed would have to wait.. Now we’re flirting with time! If we pushed out too far, we would miss the opportunity to collect her white stem-cells… her white stem-cell counts are rising. 

On top of all that, Kaylee developed a few sores in her mouth; one on the tip of her tongue and the other on the back of her throat.  The sores made eating food very difficult for her.  She had to be put on an antibiotic for that too.  to help combat the pain in her mouth, she was given morphine. 

With all thats been going on with Kaylee, things have not been quiet at home either … both Kyle and I have not felt well. Over the weekend, Kyle developed a fever, and complained of stomach pains. Carol came home for a few hours to be with Kyle and me, whiile grandma and papa  (through the woods) stayed with Kaylee downtown. Carol wasn’t in the door 30 minutes, when Kyle mentioned that he was cold and his side (stomach) hurt. Carol checked his temperature, and sure enough, he was running a fever. It took the entire weekend, but it looks like Motrin and lots of fluids did the trick for him. I on the other-hand need to make another appointment to see my doctor – I can’t get rid of this nagging cough. 

This morning I spoke to Carol and we both agreed that there was no way surgery would happen today (Monday)… 5 minutes after I hung up with her, she calls me back and told me that the nurses were just in and it looks like surgery will happen today. The doctors have not made their rounds yet, but the nurses were fairly confident that surgery is in Kaylee’s very near future. 

I’m heading down to the hospital today for the first time. Now that Kaylee’s white blood-cell counts are on the rise, I feel better about being in the room with her. I had planned on visiting with her regardless of the surgery, but since the surgery is happening today – I definitely need to be there.  

 

Nighty Night

Kaylee is now sound asleep thanks to our friend the anesthesiologist.  Kaylee has been put to sleep four times since her diagnosis, and we’ve been there for 3 of the 4.  You’d think that by now it would be easy for us, when in-fact, it’s the exact opposite – it gets harder each time.  This time was particularly hard on me because they allowed Kaylee to stay on my lap and in my arms.  The anesthesia they gave her almost instantly put her to sleep.  She winced and appeared uncomfortable, but we were assured that she is okay, and this is normal. The entire procedure should only take about 60 minutes.  When we next see Kaylee, she’ll have yet another catheter – arghh.  Kaylee will be just fine because Bear Bear is with her.

Carol and I took this opportunity to grab some much needed food and some alone time.  We’re now back in Kaylee’s room waiting for her return.  The pheresis (stem-cell) harvest should begin soon after she is out of surgery.

We’ll keep you posted.

Mild Neutropenic at 670

Kaylee’s second clinic visit went very well.  Dr. Levien was back from his vacation and he told us that he thought about Kaylee while away.  I absolutely love this doctor!!!  We also met with RN, Holly again and we spent allot of time with another RN, Tara.  We like both of these RN’s too.  Holly took Kaylee’s vitals, while Nurse Dan drew blood from Kaylee’s tube… unfortunately, he had a difficult time drawing blood – he was able to get enough for her labs though.IMG_0511

Dan decided to put some medicine into Kaylee’s red tube to try and help break up a possible clog.  Carol and I had a tough time with Kaylee’s Broviac Catheter the past few days.  The red tube felt like it was clogged because it was very difficult to flush. This medicine needed to sit in her tube for about an hour, so Carol, Kaylee and I left for lunch and an hour later Dan checked her tubes again, this time he was able to draw blood without a problem – no more clog.

Tara read us Kaylee’s numbers… this is the moment we were waiting for… 670!

Darn, she’s still Neutropenic.  Her white blood-cell count came in at 670, but the good news is that the numbers are going up.  Kaylee’s numbers from a few days ago were at 420.  Now we just need to get over that 1000 mark to no longer be Neutropenic.  We also found out that her red blood-cells were okay too, 8.8 – she did not need a blood transfusion this time – woohoo.   Anything lower than 8.0 requires a blood transfusion.

Neutropenic Breakdown
1000 – 500 = Mild Neutropenic
500 – 250 = Moderate Neutropenic
> 250 = Severe Neutropenic

So now we’re home, and Kaylee is playing in her room.  Kaylee has been in a great mood the past 3 days!!!  It’s amazing how well the first treatment changed her.

I attached this drawing of how the Broviac Catheter is inserted, and where it goes once inside the body.  The only difference with Kaylee’s is that her’s is on the left side.

broviacWell, that’s it for today.  We’re getting ready to eat some dinner.  I’ll post again tomorrow.  Hugs and kisses from Kaylee.

Cycle 1, Day 4: Cyclophosphamide and Topotecan

Today was really quite.  We met with Regan around 2:00pm and learned how to replace Kaylee’s Broviac Catheter dressing.  Once we learned how to replace the dressing on the dummy, it was time to do it for real on Kaylee.  We did pretty good for it being our first time.  Kaylee wasn’t too happy about the change though :-(

After the dressing change, Kaylee started her physical therapy; which she REALLY loves.  She loves playing games with the therapist’s.  Today they kicked a ball back and forth.  The therapist told us that Kaylee is doing great.

Kaylee’s 4th chemo treatment started a little after 3:00pm.  She’s getting used to the treatments now.  She fell asleep during the treatments, and slept a really long time.

We had a few unexpected guests; Uncle Jesse and Brian Poe.  We sat around and talked a bit, and watched some of the Monday Night Football game before Kaylee woke-up in pain. Her stomach, hip and throat all hurt.  A few meds later, including a shot of morphine – she was back to normal.  One more chemo treatment and the first phase will be under our belts.

Kaylee is laying on the bed singing right now – it brings a tear to my eye when she sings… I know she’s feeling better and she’s happy.

Well, it’s off to bed for all of us.  Tomorrow is a big day – hopefully we’ll know by early evening if we’re going home on Wednesday or not.

Until tomorrow – we love you all and appreciate all your support.  Thank you, Thank you, Thank you from the bottom of my heart.

Good Morning

Kaylee just wanted to say Good Morning and tell you that we met with the doctors this morning and got word that their taking her off Morphine completely – woohoo!  Every three hours they’ll give her a morphine shot through her Broviac Catheter (as needed).  We’re hoping that she won’t need any Morphine – keeping our fingers and toes crossed.  We’re meeting with Regan later this afternoon to go over how to care for the Broviac dressing and catheter.  I’ll update you more a little later.

Have a great morning and afternoon.

Cycle 1, Day 3: Cyclophosphamide and Topotecan

Day 3 was a really good day.  The night didn’t start too well though – more on that in a moment.  Let me tell you about last night first… The plan was to spend the evening as a family; eating some popcorn and watching a movie.  Everything started off really well, but Kyle started complaining about a stomach ache.  We thought he just needed to go to the bathroom.  Kyle ended up getting sick, and had to go home.  The nurses felt it would be safer for Kaylee if he went home.  So… off yo home we went.  I spent the evening with Kyle at home.  By the time we got home, his stomach no longer hurt, and he felt fine.  He was just upset that he had to go home – he wanted to stay with Kaylee.  Poor guy!  Once we got home, I checked his temperature, just to make sure – he was okay.

The next morning, I awoke to my buddy; Mike cutting my lawn – THANK YOU Mike.  By the time we arrived at the hospital, Kaylee had lots of friends and family visiting.  My aunt Kay, uncle Bill, miss Amy and her two sons; Alex and Nathan, and my friend Brian.  Soon after we arrived, my parents showed up too.  It was one big party!!!  Kaylee was sitting in the chair soaking up all the love.

Her 3rd Chemo treatment started around 3:20pm today.  I can honestly say that I think the pain in her hip is nearly gone – thanks to her physical therapy and Chemo.  She hasn’t complained of pain in her leg in a few days.  She also hasn’t had to use the Morphine pump (boost button) in the past 4 days.

So… it’s now later in the evening, and we give Kaylee her bath and nurse Michelle comes in to administer Kaylee’s evening meds. So far so good… It wasn’t until it was time to give her the last oral medication that things went south.  She was half the way through her last oral med when she started spitting saliva, and the corners of her mouth started to bubble-up.  We were too late – Kaylee had a reaction to something, and the poor thing threw-up all over her bed.  We immediately stopped the oral med and let her stomach and nerves relax.  She’s sleeping really well right now.

Well, we should only have two more days in the hospital (maybe 2.5 days), and Kaylee can finally go home.  We have all sorts of things lined up for this week at home – furnace duct work cleaning, carpet cleaning and a professional cleaning service.  My in-laws and family friends spent the day de-cluttering our house for the cleaners – THANK YOU.

Hopefully, Day 4 goes well for us too.  I know Carol and I will be spending allot of time with RN Regan and the social worker; Kristy the next two days.  We’ll be learning how to take care of Kaylee’s Broviac Catheter and also how to replace the Broviac’s dressing.

Well enough rambling for now.  I’ll try to post an update earlier in the afternoon tomorrow.

Until tomorrow (or today, since it’s 12:17am) – we love you all.  Hugs and kisses from Kaylee.

Uneventful evening

Sleeping with mommyGood evening friends and family!  It’s been a pretty uneventful evening.  Grandma’s, Poppa’s, Kyle and some friends visited, and Kaylee slept… allot!  I believe she slept for 4 hours straight until her grandma and grandpa showed up. I took a really cute picture of Kaylee and Carol sleeping together.  Check out SpongeBob hitting on my wife – lol :-)

Kaylee did go back down to the playroom again.  She played with her uncle tom and brother; Kyle.  She really seems to like playing down there.

Any minute, the nurse will be coming through Kaylee’s door with her flu shot – yuck.  Kaylee already knows a shot is coming, because she’s started to associate the numbing gel on her arm with a needle.  Where there’s numbing gel, there’s a needle right behind it.  Poor thing.  I feel bad, because we were told that there would not be anymore ouchies once the Broviac Catheter was installed… that isn;t the case at all.

Well, Kaylee is tucked into her bed and watching SpongeBob for the evening.  Tomorrow will be a long day…again.  She’s scheduled to have the MIBG scan at around 11:00am.  Sometime after that her first Chemo treatment will begin. We do know that her treatments will take place in her room – we will not have to go to another building/room.  Her chemo is administered through her IV and the Broviac Catheter.

I have to remember to ask the nurse about the annoying clicking noise coming from Kaylee’s heart monitor, or IV machine.  It’s driving me nuts.

Until tomorrow, we send our love to all our friends.  Goodnight from Kaylee – we love you all.

Change in plans…again

Well, we have a slight change in plans for the day… Kaylee’s day is done.  No more tests today.  We ALL misunderstood the MIBG procedures – today we only needed to have the dye injected into her system through her Broviac Catheter.  The actual MIBG test will happen tomorrow around 11:00am.  Right now nurse Becky and Child Life specialist; Sarah are in the room trying to coax Kaylee into putting the magic cream on her arm or leg.  Kaylee needs a flu shot later today, and the magic cream helps numb the area where the shot will enter.

The rest of the day will be pretty much boring – YAY!  Much needed rest and relaxation for all of us… oh wait, we’re in the hospital where there’s never any rest – lol :-).

Kaylee is going to rest for a bit, and then I think we’re all going to try and go back down to the play room again.  We’re not sure when the flu shot is supposed to take place, so that will make a difference when/if we go to the play room.

I’ll post an update atleast one more time today before we head to bed.  Keep your fingers and toes crossed that we can finally start her Chemo treatments tomorrow.  We REALLY want to go home next week.

1 down, 1 to go

It has been a really long morning, but the first test is complete, and Kaylee was a real trooper.  Kaylee normally wakes up on her own, but this morning, we had to wake her up at 7:00am so that the doctor could give her a mini shot (I know, I know – a shot is a shot).  The test she had this morning was the Renal Scan.  As I mentioned in my previous update, A Renal Scan is used to help diagnosis kidney disease and certain problems with the rest of the urinary tract. It is primarily used to evaluate the function and size of the kidneys.  Kaylee had to pee right after the injection, then again at 9:00am and one last time at 11:00am.  Along with the urine samples at 9:00am and 11:00am, the nurses had to take a small blood sample.  The good thing about these blood samples was that there were no ouchies – the nurses are able to take blood from her Broviac Catheter – yay! :-)  In order to help Kaylee along with her pee schedule, the doctors upped her dosage of Saline, and asked her to drink plenty of liquids.  We don’t want any radio-active pee in her system – yuck!

We also had a visit from the physical therapists again.  Kaylee really had fun with them – she stood on her own and showed the therapists just how strong and determined she is.  She stretched, twisted, kneeled, bent etc… all without complaint or pain.   It did take her a few minutes to build up the courage to get off the bed, but she did it.  Everytime she gets off the bed, she builds her confidence.

We also received a visit from her really good friend from Child Life; Sarah.  I took a couple photos of her with Sarah – I’ll upload them soon.

Well, I’ll update you more a little later.  We have one more test to go – the MIBG.  We’re told that they should be up to get her around 12:50pm, so I need to cut this short.  I can tell you that this test will last atleast 60-90 minutes – eeww!  Kaylee will have to remain very still and might have to do this one alone.  We’re hoping that we can go in, but we have not heard yet.  This one will be difficult because your trying to get a 4 year old to lay still when their tired and cranky.

By the way, it looks like her chemo treatments are being pushed back one more day while Dr. Levien does a bit more research on the study we’re thinking about participateing in (COG ANBL0532).

Until later!  We love you all – hugs and kisses from Kaylee.

Busy day!

It was a REALLY busy day for us!  Is was  so busy, I wasn’t able to get to the computer and post an update until now – phew!  It’s 10:00pm and Kaylee is tucked into her bed. I bet you can’t figure out what she’s watching on her DVD player right now? Yep, you guessed it – Spongebob!  So let me start with our morning.  When the clock hits 7:30am, our door becomes a revolving  stream of nurses, doctors, house keepers and food service members.  First thing this morning, the nurses came in and informed us that Kaylee needs to sit-up and walk today – she can’t lay in bed all day anymore (exercise).  This didn’t go over well with us since we knew how hard it was for Kaylee to move – her leg/hip hurts really bad… (more on this in a bit)

After a few more visits from the nurses and the food service members, Kaylee’s primary care team visited us and spent 90 minutes talking to us.  They didn’t even realize we talked that long.  It was a really good talk – we learned allot in that 90 minutes.  Kaylee’s primary doctor, Dr. Levien (Grand Daddy) told us that by the time we are through with this, we’ll have a degree in medicine.  We’ve received so much information up to now, it’s almost information overload. While talking to the doctor, nurses and the social worker, it was decided that Kaylee should have a Physical Therapist come in and play some games with her and help strengthen her leg’s, arms and any other part of her body that hasn’t really been used that much the past week.  We thought this was a good idea since the nurses asked us to get her up and moving around some today – this was a great opportunity to make this happen. Watching TV

In the meantime, Kaylee has been taking lots of different medications; some through her Broviac Catheter and one orally.  The oral medicine is really yucky according to Kaylee, so we started to mix it with chocolate milk – yummy.  The oral medicine is needed in order to complete an MIBG scan.  An MIBG scan uses a chemical called metaiodobenzylguanidine that is slightly radioactive to identify areas where the neuroblastoma has spread. It is a very sensitive method of detecting the spread of cancer in bone and soft tissues.  This test will occur sometime around 1:00pm tomorrow.

I’m getting ahead of myself here… I’ll tell you more about tomorrow, in a bit.

So, we found out that one of the reasons they wanted her to get up and move around a bit was because they needed her to have a bowel  movement… she hadn’t had one in a week. We’ve had her on a few different stool softeners, but their really not effective if your not up and moving around.  Well, low and behold she had her first bowel movement later in the morning – yay!

Soon after the bowel movement, two more nurses; Holly and Linda came in to visit us.  Holly and Linda are two more nurses on Kaylee’s primary team.  I think we’re up to 6 doctors and nurses on Kaylee’s team.  They talked with me a bit while Carol attended to Kaylee.  They really didn’t tell me anything new, or ask a whole lot of questions… the one question they did ask, was how much have we  discussed Kaylee’s disease with our son; Kyle.  They encourage us to sit down and be as open as we can with Kyle and make sure he’s not left in the dark.  We have full intention of talking to Kyle and making sure sure he doesn’t feel left out.  Kyle REALLY misses his sister and just wants her to come home.  I think some of her changes; Hair loss and lack of spunk/energy is going to be tough for Kyle to adapt to, but we will be there to help him through it.

While I spoke to Holly and Linda, a few more nurses came in to give Kaylee a hearing test.  I didn’t stick around for the hearing test – my father and I stepped out to go to the store and relax a bit.  I think her hearing test lasted around 90 minutes (phew!).  When we returned to the room, Kaylee, Carol and my mother were not in the room – they had all gone down to the play room.  I noticed the red wagon was missing, so I assumed they took her to the play room in the wagon. This is huge – that can only mean that she was sitting up.  There’s really not enough room for her to lay down in the wagon.  My father and I were just about to go down and meet up with the rest of the family when uncle Jesse (Jesse Guimbellot) walked through our door – surprise!  We knew Kaylee would be surprised and delighted too.

Here’s the REALLY cool part.  When we walked into the play room, Kaylee was sitting on one of the toys in her own clothes (shoes included) and was rocking the toy back and forth to music.  She was doing this on her own, and with no pain.  This brought a few tears to my eyes (happy tears).  Then the really exciting news — Carol told me that Kaylee walked (yes, I said walked), with Carol holding her hands from the bathroom door, around a table and back to the toys, and Kaylee with masknever once said anything about the pain in her leg/hip. Walking back to the play area was Kaylee’s idea. I think she was just so excited to be out of her room and out of bed – she almost forgot how to be a child.  This is a HUGE step forward, and we haven’t even started her chemo yet.  One of the stipulations around leaving the room and roaming the hospital was that Kaylee needed to wear a mask to cover her nose/mouth.  We don’t need her picking up something else just before her treatments begin.  In order to make sure Kaylee was comfortable, we all decided to wear masks too, so we all looked like Kaylee.

Before we headed back to the room, we stopped off for some dinner in the cafeteria and got to see a really HUGE pumpkin. Kaylee wanted to make one big pumpkin pie with this pumpkin – :-)  After dinner, we headed back to the room where Kaylee undressed herself completely and put on her own pull-up and hospital gown.  We got her all snug in bed and turned on her Spongebob… remember I mentioned that around 10:00pm (a few paragraphs ago) – guess who’s still awake and watching Spongebob at 11:00pm.

So the last thing I wanted to mention was what we’re doing tomorrow.  Other than the MIBG scan I mentioned earlier, Kaylee also has a Renal Scan scheduled at 7:00am.  A Renal Scan is used to help diagnosis kidney disease and certain problems with the rest of the urinary tract. It is primarily used to evaluate the function and size of the kidneys.  This scan test will begin at 7:00am, but will continue all morning until around 11:00am (just before we start preparing for the MIBG scan).

With both of these tests out of the way, she should be cleared to finally start her first round of chemo treatment.  I’ll try and update the blog earlier in the day tomorrow since it’s going to be another long day of tests, tests and more tests.  We should be in the room most of the morning.

Until tomorrow, we love you all and thank you for all your kind words.  Kaylee sends each and every one of you a big hug and kiss.

Good night!

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