ChloeWatts.com

Sunday, July 13th: One month Post Op!

Colin nailed it when he named his YouTube video “A Strong Little Girl”

Chloe showed us all just how strong a little girl she is, with a turnaround from last night of mega proportions. I was accused of doom and gloom after last night’s blog. All I can tell you is that I’ve faced that face before and it scares the bageebies out of me. Chloe was not in good shape last night. After I left she unloaded a Linda Blair that Dana said was the worst she had seen. I can’t please everyone. I’ve heard from so many that love the reality of my messages. So if you weren’t there, don’t judge me. Just read the truth. That’s why my personal company is called “Truth Writer.” That’s all you’ll get out of me. No hype, no sugar coat, just the truth.

Enough about me, here’s Chloe’s story for today.

Dr. Norwood, Swamp Fox, was on today. I really like this guy! He is ‘to the point’ and, what I consider, one of the best doctors around. Remember, I’ve seen more than I ever wanted to see. (We have a very good team in our corner as well.) Maybe they’ll give us a grading form someday…

Chloe tends to agree about Dr. N, as she let him sit on her bed and run his fingers through her hair as he spoke with Mama and her. She also let him look through her new Collide-a-scope that Rev. Barb brought to her. It reminded him of his dad who used to make them himself. He told her “Chloe, you aren’t broken.” He said something like, ‘we just have to tweak a few things to get you better.

Dr. Norwood made some great decisions today, along with the suggestions of Dana. He decided to keep fluids going but to reduce the feeds to a minimal amount. This would keep the nausea down and inspire her to eat. They would bump the feeds only a little when they did raise them. Dana suggested reducing the number of meds Chloe would take and Dr. Norwood agreed to minimal pain and nausea meds, an appetite stimulant and an antibiotic. Let’s see if some of this is about the number of meds this non-medicine type little person has been filled with.

All day the temps were under 101. To top that she had a little energy and, a n d …. Ate a pretty good meal… for her. First Dana and then Grandma were the tray tables. I’m sure that helped. We even had her up for a walk with Mama, Grandma Lee and Ron. She’s wobbly but it was wonderful to see her up! All the nurses were praising her. Made her feel even more special.

Another high point was a visit by Rev. Barb, one of Chloe’s most favorite people in the world. Barb sat with Chloe and read her a wonderful, heartfelt story. She brought some gifts from my favorite state, Vermont. Chloe loved every minute of that visit. They are special together.

Colin, Dave and Ramona were able to make a visit today as well. Colin just hasn’t had enough Chloe time as he was sporting a very bad cough for a month after the surgery. He HAS loved his freedom to go visit friends and do things the Pre Teen years wouldn’t allow. Tonight he is at a sleepover that had him very excited for days now.

Cousin Jeremy wanted a little overview of the past, present and future. I’ll do my best. Especially since he did such a tremendous job on this website!

If you look back to post op, plus a few days, Chloe is so much better. Take a look at the Picture Page that Jeremy put together. You can see some beautiful differences. However, don’t forget that some of the bad pictures were of late. I really wish I could say everything is wonderful, we are out of the woods, and there are no more worries. I’d have to have my head in the sand to say anything close to that.

What I will say is that I think last night was a great corner to turn. There may be others she has to turn, but last night was a big one. Her eyes were back today.

We found out today that the PIC line will be staying in for, at least, a month. “It’s working so let’s keep it. We need it” was the word that came down from Dr. N. Chloe doesn’t like needles anyway so let’s use this if we are sure it’s not a source of any infection. They will monitor it well. Dr. N. intends to keep us through tomorrow night for sure. That is when any cultures they took will come back. The decision to let us go back home will come at that time. With what I’ve seen today I’d say we go home on Tuesday.

Tomorrow we have meetings with Dr. Dorsen, the surgeon and our oncology team. She may need to have the site drained again as it’s a little puffy now. We should get a little better picture of what’s ahead for the near term at that time.

We don’t know the final long term plan other than MRI follow-ups every three months to start. They can go to six months when the tumor proves it is going to behave and, either stay there, or, as I see it, dissolves. As strong as this little girl is I can see her body saying, okay, you’ve had your say, now it’s mine; Bye, Bye.

NEWSFLASH UPDATE: Dana just called. Chloe asked the nurse over and said you know what I really want … 10:50 pm? I want a plate of spaghetti. Nurse Joshua told her he didn’t have that but he did have spaghetti O’s. “That will do.” So, he’s off to cook up some Spaghetti O’s for our beauty. This is big! She’s eating today. Let’s all see that happening on a regular basis.

God is good. Be well all. Ron

Saturday, July 12th:

Last night Dana was awake all night fighting the fevers.  It would spike and she’d ram some fever medication.  Nausea would show up and she’d fight that back.  It was a back and forth battle all night.  Morning came and it started calming down.  Chloe has enough drugs in her little body to fight every germ Mexico.  Yet the mystery continues.  She slept a lot these last few days. 

At 3:30 pm Dana gave her a barrage of drugs at the prescribed times.  Six minutes later Chloe threw up the tube and all the meds.  Her temp was 102.5.  This is critical!  Dana called me in tears because we both knew what this meant.  She called the doctor and I jumped in the car to get over to the house. 

By the time I was almost there we knew the verdict.  Go to the emergency room and expect to be admitted. 

I carried Chloe up the stairs and put her in the car.  She was so weak that her voice, like it’s been the past few days, was but a whisper.  Her grip around my neck was still firm but her energy is zero.  She has had no quality of life for quite some time now. 

At the emergency room they took three blood samples, two from the PIC lines and one from the other arm to compare.  They took a urine sample.  They took electrolyte samples, they took another test that I have never heard of before.   

She has a UTI on top of everything else now.  They hung a bag of saline to get her re-hydrated.  This brought her energy level up so she could make a complete sentence in a volume we could actually here.  That lasted about 10 minutes and she went south again.  Morphine, Antibiotics, Fluids, Anti-Nausea meds.  What are we doing wrong?  Maybe the easier question is What are we doing right?  Dana and I sure are wondering that a lot lately. 

The word came down they would keep Chloe until they figure out what’s going on with the fever and infections.   

Dana suggested I go back to the house to make sure Ivey was okay, as Colin and Lee were headed to Dave’s house.  After bringing her emergency bag into the ER I kissed Chloe and told her I’d see her tomorrow.  The same treatment was for Dana.  As I started to leave I looked back and Dana was about to fall apart.  We know how serious all this is and it’s those really bad times that we can see it in each other’s eyes.  We could see it in Chloe’s eyes as well tonight.  I just won’t let myself see it in my heart.  I still believe Chloe will heal and grow to be an old lady after doing so much for the world. 

Dana’s house is now ready to accept another hospital stay.  Ivey has full food and water.  The dishes are washed and food put away.  But none of that really matters that much to me at this point.   

God is.  I know that.  I know that Chloe is wrapped in his embrace.  I want to know that this will have a very happy ending soon.  I want Chloe to know it as well.  She and I promised each other that she will get well.  I intend to keep my promise and she is a little girl that is true to her word. 

Pray for her.  The prayers will be answered.  See her healthy, whole and vibrant.   

Blessings,

Ron

Friday, July 11th: There is a bolded revision to yesterday’s blog.

I thought you’d like to see what Dana goes through on a typical night. This is the early email I received from her this morning. I’ve been staying at my house over night as Grandma Lee is using Dana’s bed as Dana sleeps with Chloe.

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“I’m happy to say that she still has the tube as of this writing but it was an ugly night. After 2 doses of children’s Tylenol, diluted, at 2 different intervals, the fever only came down one point. It decidedly went up after that…I called Dr. Norwood again.

I called him at 7 pmish when the fever hit 101.7 and again at 10:21 pm when it went UP to 101.8 after those doses AND she was spiking a pain thing. I had to know what more/what else/how else to deliver meds AND what to do about the feeds. He agreed with me…I had too much to handle, keep the feeds off.

Finally around midnight she faced me, was snoring gently and didn’t answer when I said Chloe? I fell asleep. We slept till about 6:30, not bad considering.

I checked her and thought that she had barfed in her sleep BUT it was the feeding tube…my bad. Cap came off and leaked on her and the bed. Will be doing sheets today…I hope…

Dr N said we might have to bring her in today to figure this out. He was great over the phone…all night…said he was available and told me the plan was to call him first should I need to admit her myself.

I did tell him this was familiar…the pain spike, the fever and it was very likely fluid built up in her head. He asked where pain was…I said all over her head.

She was writhing in pain for about 20 minutes. Lee said it was painful to be in Denver imagining this, but the reality check is worse.

Luv you/see you…be prepared for anything.

But I still envision her growing old, being healthy, wealthy and wiser than us all.

Fever this am? 99.5. go figure. I started the feeds at 20ml at 7am after the Zofran.”

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After all that I showed up in the A.M. All in all Dana was much more together than I would have considered. She was actually cleaning the sink and putting dishes away as Lee sat with Chloe.

All day Dana spent chasing the fever. Chloe was very sleepy today and much of the day she had her eyes closed. She did ask me at one point, “do you know what today is?” I asked, “other than Friday?” She said, “It’s the first day I’ve kept my tube down.” We high fived.

Very special for her was a visit by Rev. Barry and his wife Heather. These two are very special people to all of us and Chloe was well cared for in there presence. Heather did some Reiki on her after giving her some memorable gifts. Among them were three handmade black angels from Nigeria. Now this wouldn’t be too interesting to many unless you heard the rest of the story.

A couple hours prior to B&H arriving, Chloe had Dana bent over in front of her. She was playing with Dana’s hair, as she loves to do. She said to Dana, “do you know how you dreamed of being a Chinese man?” (Yea, I know… a little strange…) “Well, I believe I am an African American Girl. I saw this in a flashback.” Is she tuned in or what?

Rev. Barry prayed over Chloe. Later she said, “I think Rev. Barry and I had a good connection there.” HOW OLD IS THIS GIRL ANYWAY?

All in all I’d call today a managed day, filled with healing sleep. The temps never came down to where we like, but, the nausea was managed well. Dana spoke with Dr. Dorsen, the surgeon, and was relieved to hear that it would be a stretch to think the tumor was causing the temperatures. This sentiment was shared by Dr. Norwood. I like it when two Mega Minds concur. Dr. Norwood also about had a heart attack when he thought he heard Dana say she gave Chloe 5 ML of a drug instead of point 5 mL. In any case he did say she could back off to .3 so that Chloe wouldn’t be so tired. Maybe tomorrow will be more of a moving day.

Dana did get Chloe into the bath tonight but that was about all the energy she could muster. She gave us some great smiles and hugs today. She had a fun moment with Dana. She scared the bageebies out of her with a little practical joke. We all got to laugh today. That was a big gift offered up by our star patient.

Thank you all for all your offers to help. Keep them coming please. We will be in a position to start accepting the generosities soon. We want to make sure we go about all this right so that it is known to all parties, ahead of time, to avoid any misunderstandings that would distract from the real priority, Chloe’s improving health.

As I stated before, if you care to contact any member of the family about individual support it will certainly be welcomed. There is a very real need building.

Blessings, Ron.

PS. My deepest apology Lee. I thought I was honoring a request. My misunderstanding I believe. You are so appreciated!

Thursday, July 10th:

I’ve been sitting at home for over two hours now putting off this blog. I really wanted to be able to have an uplifting day, but reality is reality.

Chloe had a terrible day, as did Dana. The night wasn’t any fun either. They were both awake all night fighting nausea and fever. The tube came out again! It’s really getting to be like a lesson in insanity. You do the same thing over and over again expecting different results.

Well, that’s not exactly how it’s going but it’s close. How many times can you put a tube through her nose? Dana is varying the meds a bit, with the doctor’s coaching, to try different approaches for controlling the nausea.

Today was Dana and Grandma Lee’s turn to take Chloe to the doctor’s office. Dana lost her patience with the NP. Why is it that some in the medical profession have such big egos that they won’t listen to family and patients that have been going through things for weeks? This moron wouldn’t listen to Dana when she told HER (correction. thought it was a him when I wrote of this last night.) the weighted tubes wouldn’t work on Chloe. After trying both sides a couple times SHE consented to do what she said in the first place. It’s Chloe that suffers when they do things like that! And yes, I hope SHE reads this. iT WAS HER ATTITUDE THAT REALLY SET DANA OFF. WHEN DANA ASKED FOR A #8 TUBE TO BE USED THE NP SAID, WITH ATTITUDE, “WE’LL SEE WHAT WE HAVE ON HAND.” SHE WANTED IT HER WAY BECAUSE SHE IS THE PRO. SHE FOUND OUT SHE WAS WRONG AND I HOPE SHE LEARNED SOMETHING SO OTHER KIDS DON’T HAVE TO BE ABUSED BY HER EGO.

The CAT scan showed there might be fluid at the incision site but without another MRI, they can’t tell exactly how much. The guess is it’s not enough to drain again. I guess you could put that on the plus side. On the negative side is the fact that, if Chloe can’t keep the tube down this time, she will be back in the hospital. If that happens, and they need to feed her through her PIC line she could end up with a damaged liver.

Dana is planning to be awake all night again tonight to make sure the meds are on time or early. She bought a new $50 anti nausea medicine that they are trying. She is also able to dilute the liquid Tylenol so it can go down the tube. We need this to work!

This roller coaster is getting too scary for even someone who loves them. We are doing all we can to assure it stays on the track. It’s too close…

At one point in the day Chloe had her whole family support team there. Dave, Ramona, Grandma Lee, Colin, Ron and Dana were all there. Even then, our Chloe was too weak to participate in the conversations. In fact, when I showed her the guitar that Gary Sugal sent her from his heart, she gave a big smile but didn’t even want to lift her hand far enough to strum it once.

I am at a loss for words now. Some of the family is still able to find a laugh. I’m not one of them and Dana is far from one. Things just don’t feel good right now. Dana is lower than the other day I wrote about. I hope I’m able to give you some better news tomorrow. We need something big to happen! Very good, very big!

Wednesday, July 9th:

After three violent vomiting episodes Chloe had a fairly restful night, although not a lot of real sleep.  I know, I was on the couch all night checking on her.  Interesting sleeping style we all have lately.

Because she threw up her newly placed feeding tube she was without any meds or feeds all night.  We tried a little bit of melting Tylenol but never got a full dose without upsetting her stomach.  Even with nothing in her she felt like coming out in the living room to visit all morning.  Her temperature had subsided, like it has been doing in the mornings.

She was scheduled for the IV nurse visit today at 11:30 and then Dave was going to bring her to her clinic appointment to have yet another tube placed.  Believe me, this is her least favorite procedure.  If you’ve ever seen it done I think you will know why.

The IV team was late, about an hour, but came and was very informative.  They showed us all about the IV materials and then changed her dressings.  The nurse even let Chloe flush her own IV line.  She liked that although it hurt her thumbs a bit.

Dana asked her if she still wanted to be a vet and Chloe, sheepishly answered, ah… maybe. 

We called the doctor to make sure we could move her appointment a little bit and, of course, there was no problem.  We’re talking about their favorite patient after all.  So Dave left with Chloe about 1pm. 

At the clinic they asked about a new type of feeding line, the G tube.  This would go directly into her stomach through the skin.  Chloe likes that idea, however, it does come with its own risks.  They placed another NG tube, and again it was not quick and easy.  Some of the nurses have the wrist action and correct amount of lube to make it happen the first time.  Others don’t quite have the moves down to my liking.

Chloe said Dad was a great coach to have there today.  After the tube the doctors decided they wanted another cat scan to see if the fluid had built back up at the incision site again.  This is common.  If it has then we will need to have it drained again.  We have two appointments set up for Monday just in case.  Tomorrow is also a possibility if it’s really full and they think it shouldn’t wait.  That damn tumor is right in the wrong spot, a spot that could promote nausea.  With the extra pressure of fluid it’s an uphill battle.  They did give us a new anti nausea medicine that Dana is pushing tonight.

Dave missed work today, but, I believe, he was very happy to have been able to be with her today.  They even ran into The Iceman, Dr. Dorsen, the surgeon, today, as they were leaving the office.  I did yesterday.  Good timing.

Dave returned Chloe to the house and then ran to the airport to pick up his mom.  Then he returned to Dana’s house to leave Grandma Lee there to learn the what needs to be done for Chloe when she goes to Dave’s house soon. 

Aunt Laura and neighbor Cindy showed up with food tonight.  With the alone time Dana had today she bar-B-Qed some chicken and hotdogs for dinner.  I guess there was quite a feast there.  I was home trying to make some money…

Chloe ate some of many things.  At one point she looked at Dana’s hotdog and opened her mouth.  So Dana obliged and Chloe ate some of that.  Then she went after some other things like apples and even two thirds of an ice cream sandwich.  That’s what we need!

Her fever is back for tonight.  101.4 is not anything to sneeze at, so Dana is chasing it with everything she can.  The melt-aways are the easiest if Chloe can eat them without getting nauseous. 

All in all it was a much better day than yesterday… but that’s not much of a comparison.  Chloe even came home from the doctor’s office with a couple new books they gave her.

Once again, thank you for all your emails of love and support.  They mean so much as does all the help that everyone is jumping in to provide.

I even stopped by her auto mechanic today.  He’s worked on her cars for years.  The owner was off today but I’m going to try and get them to finally fix her little ’85 Toyota Celica.  It’s her favorite car and it’s been in her garage all winter.  I’m hoping they will fix the heater, the radiator leak and get it so it will pass inspection, all gratis.  This would be a big boost for Dana.

Thanks for all the concern you all have expressed that we need to take care of ourselves as well.  We are doing the best we can for now but it’s always nice to be reminded.  That’s probably the best thing we can do for Chloe also.

Blessings,  Ron.

Tuesday, July 8th:

Just when you thought it was safe to go back in the water…  Today was one of our worst days!  Chloe woke up nauseous, feverish and in pain and it has gone down hill all day.  We did pretty well keeping ahead of everything until about 12:30 noon when she threw up her feeding tube again.  Her temp was 100.4.  We got her calmed down and called the doctor.  They were pretty busy but said they would work us in. 

At the doctor’s office she continued the nausea and her pain went up.  When we finally were able to get the nausea medicine in her she was in a lot of head pain.  So much pain that she vomited hard.  Then next medicine came as “by mouth” medicine.  This wasn’t going to work so we had to get it reordered to go in her Pic line.  This was to calm her down for the tube insertion.   

The meds were administered and the tube procedure started.  There were problems from the start.  The tube wasn’t cooperating and kept trying to loop the wrong way.  We gave her a break as she had a sneezing fit.  The next effort got results.  The tube went down and the vomit came up, fast.  The tube stayed in place and true to form Chloe apologized to the nurse for getting sick. 

We waited about 20 minutes before bringing her home.  The ride was uneventful as she slept the whole way, all of about 15 minutes. 

At home she was hot.  She also exhibited the same problems as the rest of the day.  Then about 7:30 pm she needed Tylenol.  It’s too thick to go down the tube so we asked her to try to get some in her.  She gave us a very suspicious look but tried.  She got about half down, took a drink of water and threw it all up, including the tube again.  We decided she wasn’t going through that again tonight and that we would get some dissolving Tylenol for her.   

As we cleaned her up she told Dana “You do too much for me.”  This tore Dana apart.  She was wiped out from the previous part of the day but this totally destroyed her.     

I went to the store and got the Tylenol and when I walked in the house Dana was on the phone with Dr. Noorwood.  Chloe had a shooting chest spasm while I was away.  The doctor calmed Dana a bit and told her what she needed to watch for.  We will be bringing her to the hospital tomorrow morning.  In the mean time, while I’m over here writing this and taking care of my house and Kitty, she has 911 dialed up and ready to go.  I’ll be back there before midnight to handle any transportation that might be needed.  I think it’s going to be a pretty sleepless night. 

What can you do?  I haven’t a clue.  I know Karen from Celebration Church is getting with people to see what they would be willing to do.  If you need to get in touch with her you can send me an email @ ronhorton21@msn.com.  I’m just not sure what we will be in need of.  We are still trying to figure all that out.  For now I’d say it’s in your court.  If you want to help anyone in the family in your own way I’d say go for it.  Nothing is organized at this point in time.  Trying to figure out the logistics and the right thing to do is mind-boggling.   

All of this is so back seat to the care of Chloe right now that we are having a hard time thinking about it.   

So pray for Chloe, but let me tell you this.  I’ve been living with seeing a Mom torn apart.  She is as strong as anyone could be in this battle.  Tonight was as low as I’ve seen her since the news of the tumor.  She just doesn’t know what to do, why this is happening, how to give Chloe hope, how to continue.  Pray for Dana.  She needs your prayers. 

Come five minutes from now Mama Loon will be back in the game, at full throttle.  She hasn’t let up for one minute.  She has never taken anything for granted.  She has not once believed that we are home free.  She is fully aware of the seriousness of this situation and is in 100% Chloe protection mode.  That’s all that matters to her.  I’m not saying others aren’t concerned and involved, they are.  What I am saying is that I’ve seen and felt this unconditional commitment by Dana, fully, as only a Mama could give.   

Blessings, Ron.

Monday, July 7th:

Chloe’s first night at home started out with a little bump.  She spiked a temp enough that it warranted a call to the doctor.  Dana received an answer back in two minutes.  Think they don’t care about Chloe?  Ha!  She gave her a little boost of meds and the night went well from there on out. 

Today was a sleepy day but she seemed comfortable from what I was told.  I’m headed over there in a little while so I’ll see for myself.  Dana doesn’t have DSL so I have to do this post early.  That’s a gift I’m trying to get her but it’s on the back burner right now. 

Today was an amazing weather day and Dana was able to get outside for some yard time.  I can only imagine how that made her feel.   

Come Wednesday, when Grandma arrives, she should be able to get a little normality back for a couple weeks.  We believe all will go well and Grandma will be able to watch both Colin and Chloe over at Dave and Ramona’s house.  I’m sure the cleaning detail is happening over there even as I type.  Fred likes germs so, it’s germ free for lil’ Chloe.  That’s your rhyme for the day. 

I guess you could say is, not much news must be good news.  This is one of my shortest blogs of the session.  You and I both need a rest.

Sunday, July 6th:

Okay, I’m baffled.  I have no idea why yesterday’s blog did not show up.  You can read it below if you’d like.  Cyber something happened I guess. 

So here’s the Sunday blog, the one we’ve been waiting for. 

Chloe’s home.  About 3:30 P.M. today Dana was able to bring Chloe back home.  This now means she is in a much better environment to heal, as far as I’m concerned.  However, this also means that Dana’s job has really ramped up.  She will now be nurse, doctor and mom.  Chloe has her rental pump and her new pole.  She doesn’t particularly like the new pole as it is very light and wants to go where it wants to go, rather than where Chloe would like it to go.  I told her it just needed a little more weight on it to behave.  I can see her skateboarding around the house on it anytime now. 

We are all happy to have Chloe home but Chloe is pretty sad about leaving her friends and comfort of the hospital.  She grew attached to the people and the place.  She’s just that type of person, very caring, very loving, devoted.  In fact, yesterday when the roving music lady, Dawn, showed up to see if Chloe wanted some music, the answer was yes.  She wanted Dawn to sing, “A Bad Day.”  She did.  Then Chloe asked her if she could print the words for her.  She did that as well.  Just a few minutes ago, when she exited the bathroom, she asked Dana where the words were to the song.  Dana gave them to her and she went into her room and began singing the song.   

What does this say?  It says she is good enough to sing.  It also says she doesn’t consider today as good a day as the rest of us do.  That’s a pretty good perspective.   

She still has her feeding tube and will have until we are convinced she is able to take in enough calories to gain weight.  She has gained about five pounds since the operation but that has all been due to the continuous feeding.  The doctor wants her to look good before we make any changes.  She is looking better though.  She has some fullness in her face and her ribs don’t show as much.  When her arms and legs start showing definition I’ll be much happier. 

I asked her if Ivey went bonkers when she came home.  Her response, “not as much as when you come over.”  Made me feel pretty special.  The fun part was when Colin came home and saw her.  He lit up like the sun.  That was great to see.  

He confided in Dana that when he was downtown watching fireworks, he started to cry.  He realized it was the first time the three of them were not together for the 4^th.  Colin is a Holiday type of guy and having family together during any of them is very special to him.    

Before Chloe made it home Colin had made a welcome home sign and brought flowers for her.  He took some effort with this.  Soon after they were together again he had her downstairs playing her new X-Box.  Unfortunately she didn’t last long.  It was dinnertime and then she was ready for a nap. 

Dinner was pretty good for her.  She ate quite a bit of the lasagna.  It probably tasted good after the little bit of hospital food she ate.  It was good to be able to sit at the dinner table with all of us there. 

Dave and Ramona made it over shortly after Chloe got here.  We were able to go over the procedures for the pump that we are in charge of now.  The IV nurse will arrive tomorrow to go over those procedures.  They are a bit tougher than the feeding tube but we all should be up to task by now.  Chloe also showed Dave and Ramona her Hanna Montana balloon.  It sings a song when you tap it.  Well, Chloe isn’t a Hanna fan so she belts the balloon like it’s “Fred.”  Good anger management techniques I’d say.   

Chloe’s temperature was up to 100.1 tonight but that may be due to the meds.  She was also in a little bit of head pain.  Dana is watching her like a Mama Loon so I’m sure she will be getting the best of care.  Chloe has a bell and the intercom phone in case Dana dozes off and doesn’t here her requests.  I won’t be surprised if both sleep through the night, as they won’t have the hoard of medical nuisances waking them up every two hours.   

The plan is to keep Chloe home, get her off the feeding tube and PIC line and bring her back to the hospital in three months to make sure the remaining tumor is behaving itself.  Personally, I see that part of the tumor going away.  I am believing the next MRI will show nothing there.  That’s my belief and I’m sticking to it! 

Be well everyone.  Ron

Saturday, July 5th

Almost… but not quite. Chloe had a rocky start today. The doctor came in to say the numbers look pretty good so we are shooting for tomorrow sometime. Chloe is a bit nervous about leaving this safe environment but, hopefully, we will be able to show her we are capable at home.

She had a visitor today. Her classmate Natalie was at the hospital with her mom so they stopped by. That was fun for Chloe as they are two parts of a three part Harry Potter club. We had Harry and Ron in the room. Not exactly sure how long the visit was but afterwards Chloe hit the wall with pure exhaustion. She liked the visit but said to warn people this is what will happen afterwards. We’ll see how she progresses. Getting home will be very telltale.

Dave was able to make it over today after work. He sat with her while she rested and it seemed good for both of them.

Colin will be coming home tomorrow and said he wanted to stay with Chloe and Mama for the weekend. Grandma will be here on Wednesday so he will go to Dave’s house and, hopefully, Chloe will feel good enough to join them during the visit.

Dana spent the day trying to figure out what needed to go to the car, finding out about the 10 drugs Chloe will have at home, checking with the doctors about her status… you know… the usual day. I really do know how she does it but it still amazes me.

I spent the day cleaning house, specifically, Chloe’s area in the house. Karen Preston came by to give me a hand with some other areas in the house and I was very happy to see her. I was a in a little over my head. Chloe has a lot of stuff to disinfect!

Let’s see Chloe home tomorrow and everything working the way it’s supposed to work. We had a preview on the portable pump she will have for her feeding tube. Tomorrow the IV nurse will brief us on the procedures for her PIC line… yes, it stayed in. We thought it might come out but since it’s working so well still they decided to keep it.

Hope everyone is having a fun and safe July 4^th holiday weekend.

Blessings. Ron

Friday, July 4th:

Well, we had hopes of going home today but reality got in the way.  Chloe woke up with little to no energy.  All morning was the same.  When I spoke with Dana I suggested she ask the Doctors about a transfusion as the red cells were way down.  As you have it, the doctor came in and said, “I think we are at the point we need to transfuse her.”  I’ve been around hospitals WAY too long. 

Of course this put the kibosh on us getting her home tonight.  She is still planning on being home sometime during the weekend.  So I’m going over in the morning to start cleaning the house! 

Sometime after 5 pm they hung the unit of blood for her.  Chloe was grossed out so they put a pillowcase over the pole so she wouldn’t have to look at the blood.  It was transfused at over two hours.   

When I was finally able to get to the hospital the transfusion was in its last 45 minutes.  I wasn’t seeing much improvement in her energy at that point.  Within another hour I’d say her energy started picking up.  Those good ol’ Red Cells sure do make a difference. 

Dave called and Chloe was able to speak with him for ten minutes or so.  She was reluctant at first, as phone conversations tend to wear her out, however, this seemed to do the opposite.   

Our plan was to go to the sky bridge on the 5^th floor to watch the fireworks at 10 pm.  Originally I was told this was outside.  It turned out to be inside but way up there.  We wheeled Chloe in a chair, hauling “Harold”… the IV pole… along with us to the viewing area.  We were right in front of the Waterfront Blues Fireworks and we could see and hear well.  Chloe took a ton of pictures and had a great time.   

After leaving the sky bridge we had her walk to the room… and then take a lap around the unit.  When we went in the room I suggested we go try and pull up the YouTube that Colin put together.  Chloe jumped at the chance.  She wanted to see it as bad as we did.  Bummer, the security protections on the hospital computers prevented us from opening the video portion.  We left to go back to the room and Chloe wanted to take a side trip to the Starlite Room to look around.  We did, she did and we left for her room.  She all but ran back to the room.  I had to keep the IV pole moving!

Back in the room I tried to pull the video up and it worked!  It’s titled “A strong little girl.” So the three of us sat through a couple viewings of it.  Colin did a nice job… although he really needed to check his spelling.  Aaarrrgggg.  We’ll have a little discussion with him later about the rest of his site I believe… 

Vital signs tonight turned up a 100.1 temp.  This is still in range of being okay but it’s more than we want to see.  We will watch it and see if it controls itself before adding any medicine to bring it down.

Today was just another typical day in paradise.  One up, two down and a bunch sideways.  We are hopeful tomorrow will bring better news.

Blessings!  Ron