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.

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