ChloeWatts.com

Sunday, March 21, 2010

Saturday was a full day, filled with fun, arguments, work, cooking and exhaustion. The night was more active than usual also so it was questionable what Chloe was going to be able to participate in with any enthusiasm. She came through on all of the above.

The morning was a mix of waking up. Chloe and I were the first to stir, then Dana and then Colin… somewhat… Typical 14 year old… Uncle Kevin was coming by to bring Colin with him for a full day of yard work for hire. Aunt Laura had asked us what we were comfortable with him doing. We accepted the electric lawn mower, as long as she didn’t mind if the cord got cut… but we opted out of the hedge trimmer. Keeping the fingers is a good thing, especially for someone who is trying to become a musician.

After we were finished with the tube feeding we started discussing Chloe’s shopping list. She was up for cooking dinner and dessert, with an appetizer plate to start. That was the first argument… sort of. Dana was trying to impress upon her how much work she was setting herself up for. They settled on the high side of Chloe’s desires.

With as good a day as it was we needed to get out in the sun. So we did a bit of that before heading out to the store. The garage was the project of the day. One could hardly walk in there for all the supplies, oxygen and other miscellaneous stuff. Dana finally gave me carte blanche on the area.

Mainly Chloe planned the store outing. She decided she didn’t want the walker or wheelchair, that she’d rather just hold onto the cart as if it were a wheeled walker. So, with her purse over her shoulder, we walked to the car, put the suction and emergency bag within reach, buckled in and took off.

We don’t have the handicapped window hanger yet so we lucked out getting an up front parking spot next to the carts. “Proud” is the word I’d use to describe what Chloe looked like as she pushed the cart across the one lane of the parking lot and through the front doors of Fred Meyer. However, then it was “tired” that showed up. She stood and looked around at the remodel job the store went through since she last stepped foot inside. We walked to the café and had her sit in the chair. I, then, was off to get the wheelchair, leaving Dana and Chloe to enjoy the atmosphere.

Back in the store with the wheelchair, and Chloe was off and rolling. She wheeled herself to all her favorite food groups… that are all of them at this point. The silent smiler was watched by all she passed and she seemed to feel quite comfortable in the environment. Then we wheeled outside to the garden center where Dana spent some quality time looking over all the plants and trying to decide on three nice ones to start the front garden area at the house. Chloe tried smelling a variety of plants and said she thought she could get a small scent out of a couple. Without air going through your nose you don’t really have a sense of smell. At the checkout counter was another small argument, as Chloe wanted to pay for the food. That didn’t happen but she was thanked for the offer.

After a good trip we were back at the house to finish the garage, get some sun, start another tube feed and more arguing about what was better for the cook. She wanted to start right away but there was way too much sun to let that happen. She wasn’t happy with Mama but parents still need to be parents.

While they basked in the sun, I finished the garage and filled the recycle bin. Kevin brought Colin home and said Colin had earned his keep. It’s good to hear. You know what I mean if you’ve ever had a 14 year old. He’s a great kid but lighting a fire under him is sometimes like trying to start water ablaze. He was happy with the opportunity and we were grateful to Kevin and Laura, once again, for making something good happen for Colin.

As soon as the feeding was complete then Chloe was going to start cooking. We were all absorbed in a variety of things, from homework, to home work, to music. It looked as though there was only about five minutes of feed left in Chloe’s bag, and after about 30 more minutes, I finally decided something was wrong with the pump. Air in the line kept it from finishing so we made adjustments and she was on her feet at the cooking station.

She and I worked on the appetizers first, Stuffed mushrooms and wheat crackers and garden style cream cheese. Then on to “Peeps.” I never knew there was so much work in making marshmallows… or so much mess! By the time we were back and forth to the computer receipt, we had our batch of sticky white stuff with a side of sugary yellow stuff. Then it was time to squeeze out the Peeps onto the wax paper. By the time we were through we had a bunch of indistinguishable blobs of white stuff, sprinkled with yellow stuff and Chloe was starting to look like the DoughBoy. They never really set up but I’m told that could take up to four hours. Chloe WAS able to sit and have three taste tests of the mixture and she said she could taste Peeps… her favorite Easter food!

Next up were Quesideas… (or however you spell it…) That was the main course. Of course, we forgot a few things at the store so we improvised. Scrambled eggs, mushrooms, tomato and cheese set in between two tortillas. I burned mine by didn’t let on too much… Everyone agreed it was a great job in the kitchen by chef Chloe.

Just before I left to go take care of Kitty, Dana called me into Chloe’s room. Chloe was apologizing to Mama for not knowing she was right and to me for being her only kitchen helper. She said, next time I’m just doing one course, one dessert or one appetizer. I assured her there was no apology necessary when she is doing something to try and better herself through knowledge of any kind. She tried, learned and advanced her knowledge in the kitchen.

Now we are back to rainy days but the sun is shinning inside from now on!

Be well,
Ron

Saturday, March 20, 2010

It’s morning now and Dana is still asleep, something that doesn’t get to happen often. Chloe has been up for about a half hour and I was up to see the Nurse Joanna out the door at about 7 am. Chloe’s night was more active with five suctions and lots of de-sating beeps going off. When watching her I have found she tends to sleep like me. She breaths as a convenience and not very deep. This leads to her not getting the 100% required O2 levels and the beeping. Then she takes a couple good breaths in her sleep. She just nodded in agreement.

Yesterday went well. She made it to school on time but without the charger for the suction machine. We noticed just as the bus pulled away from the house so I jogged up the hill, getting there as they were unloading her from the bus. It seems crazy to have the bus bring her that little distance but with all the equipment and the steep hill, it’s really necessary. I’d love to have a Club Car EzyGo Golf cart. Then I’d just drive her up the hill myself and save the aggravation of the school bus. It would probably just be one more thing we don’t have any idea where to store. We are looking like a hospital her lately.

Later in the day she spent time doing homework. With Colin back home it’s dueling schoolwork as before. Chloe has kept up well with school, except for math, but we do have a lot of material to complete over spring break. Colin has created a situation for himself now that requires having constant supervision. It will probably help him get back on track with his schoolwork, something he really wants to do. It’s not surprising there have been slips over the past four months.

The evening was good with Kathleen and Tim bringing in a great dinner. Laura and Colin took Dana’s car out to the carwash bay and cleaned it all out. It shines like a new 1992 car now. My next project for that car is to replace the lift rods for the tailgate. For some reason or other both of the tailgate lifts in Dana’s cars were replaced with ones that were too short. She drives one and the other is in the garage wanting to be driven someday. Whenever I try and get into the back of either car I end up with a concussion.

A good friend has organized a movie event through her company. Originally it was just for the sake of presenting a great movie. However, after thinking about it, she asked if she could make it a fundraiser for Chloe and Dana. This took a lot of consideration on our part, as there were a lot of balls to juggle and feelings to protect. (That’s another story.) Finally we decided it was in the best interest of Chloe and Dana to let Trinity “give” as she wanted. So please click on this link to get all the information. http://www.brownpapertickets.com/event/101267 We do remind you that this is not our fundraiser, so we are unable to answer any questions what-so-ever. Our fundraiser is still the Chloe Watts Peace Sun Tee Shirt drive. They will be available for quite some time and will be printed in colors soon.

It’s time to get this day rolling. From what we heard on the news we only have today for Sun and fun until Tuesday. After being inside the hospital for 3 ½ months we hate to waste any sunny days!

Forgot something… If anyone is good with a sewing machine we need a half dozen cloth sleeves for the suction tool Chloe uses.  It’s 9″ x 2″, sewn on all but one short end, and has to be something we can wash.  She is not a “Pink Girl.”

Be well,
Ron

Thursday, March 18, 2010

It was a much better night last night. Nurse “E”, yup, that’s her name, was all over it that the pulse ox machine didn’t have the needed attachments. We didn’t get what we really needed but did get something to keep her safe through the night. Tonight will be the same thing with a monkey rigged toe sensor.

Morning came early again but, at least, we were able to sleep most of the night. The quiet nights are good nights. Getting Chloe ready for school seemed to go a bit easier also. We asked the nurse to take care of a few things in the morning that make it quicker getting her ready.

The bus drivers need some kind of guide for parking in front of the house to pick Ms C up. It’s just not a very smooth surface out there so the different drivers have been trying different places. Some stops have completely blocked the street and these stops aren’t quick. One stopped driver gave Dana a few road rage gestures the other day.

Dana and I were able to get out and run some errands today while Chloe was at school with the nurse. It was good to get her out, even if it was just three hours. We returned to the house with ten minutes to spare before Chloe got home.

Laura delivered a delicious tuna casserole and dessert. We sure have a wonderful group of friends supplying food. That takes a huge load off our daily to do list. Karen Preston helped with the website lotsahelpinghands.com. It’s probably easier for anyone who wants to get involved to just get in touch with Karen directly or through this website.

Chloe, Dana and I walked across the street to sit in the grass. Chloe flipped dandelion heads to us until there weren’t any more. At first she didn’t want anyone to see her walk but we soon had her motoring along. While we sat there a half dozen of her friends came by and they all were happy to see her. Colin came home from school about then and joined us.

Today Chloe has been planning dinner for tomorrow night. She emailed me from way across the room this message: “So do you have whole milk, good quality 70% semisweet chocolate and confectioner’s sugar? Bob Evans maple roll sausage, Montery Jack cheese, green onions, sour cream, salsa, and quacamole.” I don’t, so I guess we are going shopping tomorrow afternoon somehow.

Hopefully you all were able to get out in this wonderful day. Tomorrow is supposed to be even better so we will be out for sure!

Be well,
Ron

Wednesday, March 17, 2010 – St. Patricks’ Day

Just when you thought it was safe to leave the ladies alone for the night… Dana loaded the feeds for 10 pm. Five minutes later the stretched out feed tube leaked all over Chloe and the bed. The entire bed needed to be changed, Chloe’s cloths needed to be changed, and the bag needed to be reloaded with feeds and meds. By the time everything was back on schedule Dana noticed it was after 11 pm and the new nurse wasn’t here. Then the phone rang to let her know she was on the way. Dana was just about to crawl in bed with Chloe for the night when the nurse finally arrived. Then it took a lot of time to get her briefed. When I last emailed with Dana it was past 2 am.

The morning came way too early. After getting the nurse out of the driveway, Dana was back inside getting Chloe ready for school. Our other school nurse was with Chloe during school and everything went very well. However, the tube had been leaking overnight and during school, so Dana called Dr. Marshall to see if we could push up the procedure to get the “button” placed so she wouldn’t have the external tube. That wasn’t possible but he did agree to meet us at 2 pm to get the tube fixed somehow.

At 1:15 the bus pulled up to the house and we transferred her directly to the car for the trip to the Dr. office. That all went well and we got to the office with 10 minutes to spare. Chloe’s eyes got a little big when she saw the doctor come in with a pair of scissors in his hand. At first he suggested just kinking hose but I asked if there were replacement ends and clips for this. He said of course and went to get them. It was a quick fix once he got back.

Chloe took the offer to go to the other house and see Kitty and walk in the grass. We didn’t have a lot of time there but it was a nice visit, although Kitty was not impressed. Leave it to a cat.

We were back in the SW in time for Oprah. Dana wanted to see a featured story. Then we watched Dave Ramsey. She is very happy to have Dish TV as of yesterday. I’m dumping it from the other house so we can have it here now. With this house the “prison” we needed something to help pass the time.

Later Sharon M stopped by to bring Chloe a Lilac Tree and a book. We had a great visit and Karen P stopped by with some corn beef and cabbage for St. Patrick’s Day dinner. Tomorrow Chloe is planning on doing some cooking for us. We’re all for it if we can have her on her feet.

After homework and computer games Chloe is now winding down for the night. We are waiting for our nurse, “E”, and plan on having a good night. Tomorrow will be Chloe’s first day at school without either of us. We have confidence in the “at school” nurse so we plan on just chilling for a change. Soon we will have Chloe going from 11 until 2:15. Then it will be on to a full school day as her energy builds up. Of course, then we will be starting our PT/OT/SP at OHSU. That will be interesting coordinating the transportation as it takes two of us in the car to transport her safely. One to drive and one to take care of the suction machine. Even on the way to the doctor we had two incidents needing the suction machine, one there and one back.

Colin will be home tomorrow after his Choral Concert. I plan on kicking Dana out of the house to go to that. I’ll have one student earlier but then I should be able to be with Chloe for the evening.

It’s never dull.

Be well,
Ron

Tuesday, March 16, 2010 – 6 days at home!

It’s a brand new ball of wax! Being home may bring a new form of healing but, in the meantime, it’s bringing a new meaning to the word exhausted. Between Chloe, Dana and me, we probably get a full night sleep… every third night. Who would have guessed the workload of looking after one little 11 year old girl could be so vast?!

Here’s a typical day. 9 am, the night nurse leaves after keeping us awake all night by walking on the squeaky floor just above our head, so that she can look in on Chloe, who has been getting tube fed and vital signs all night while listening to the machines going off or just plain running… like a freight train down an antique set of rails.

We have been up since 6 am waiting for our turn to go get Chloe ready for school, which is only three hours right now. At 9:10 Dana yells for me from the bathroom. Chloe is on the verge of passing out. She is sitting on Dana and I needed to get her feet raised to get the blood back to her head. It worked but it was a scare for Dana and Chloe. Chloe freaks out when Dana panics. We’ve suctioned Chloe a couple times by now as well.

At 9:45 the bus with the wheelchair lift shows up at the front of the house. Keep in mind we are at the bottom of the hill from the school… about a quarter mile. However, with all the equipment and the chair it takes three of us to load her up and get her to class. The “at school nurse” meets us by 9:30 and we get Chloe and her four bags into the bus.

For now, Dana is at school with Chloe along with the nurse. I spelled her in an hour so she could get something to eat. When they had left I stayed at home to meet with a utility person who had work to do at the house starting at 8:30 am. At least I was able to get some cheerios.

The kids at school went nuts seeing Chloe. Wheeling through the cafeteria everyone was either waving or saying “Chloe’s Back!” She sat at the end of a table of her friends and showed off her computer text to speech program. The only problem… have you been in an elementary school lunchroom lately? You can’t hear yourself think much less hear a computer program.

By 1:15 we were back on the bus having danced between the raindrops. Then it was the long 30 second ride to the base of the hill. We unloaded Chloe and all the gear and made it into the house fairly dry.

Dana was at the house when we arrived and had received and returned a bunch of phone calls. So much for catching a small nap before we got back home. Our friend Larry called to say he’d be over with the speech machine he thought we’d like. So he and his daughter came by to get Chloe started. It’s a neat little machine that should be so much easier than taking her full size laptop to school every day. We need to cut down on things to take.

That being said, there is a misinterpretation of the orders given by the doctor that we will have to straighten out. Do we need oxygen and a pulsox at the school? This would mean more equipment. The way we read it is that the doctor has given us the responsibility of determining if she really needs it there. We know she doesn’t but we need to be sure of how it’s written for both piece of mind for the nurse and legalities for the school.

It seems I’m still battling the problem of the blog. There is still some fear about how we watch over Chloe without a lot of regard as to a person’s ability or qualification. We decided long ago that if we saw something we knew needed to be addressed that we would do so. To stand by idly would be a disservice to Chloe and is a breach of ethics for us. Unfortunately, sometimes this leads to hurt feelings. Hopefully everyone can be adult enough to store their EGOs away for the sake of the mission. We aren’t intentionally cruel to anyone but we are fried and on high alert to the best care we can give her. If we are short with someone it’s not intentional… or is it…

All this being said we don’t know how we can keep this up for the long term. Because it’s now 3:30 or so and I’ve sent Dana to get a nap. I rearranged Chloe’s room to fit the equipment better and set up her 4 pm feeds. At 4 pm I hooked her up and she started her homework. At some point here I’m on the phone with Qwest getting the computer to work right. That was about 30 minutes I’m sure.

About 5 pm and Dana was back upstairs in a fog. She tries to do something and forgets before getting started. Chloe continues about her business. I’m in the kitchen cleaning the stove and doing dishes. Dana tries to get some things done in the living room. Time moves through the day.

More phone calls for Dana. Her speaker phone is junk upstairs and it’s hard to hear who has called. If the messages don’t get through just right I don’t know what to tell you. One person called and gave me a name. He said he knew Dana from High School and hadn’t spoken to her or the family in a year. She didn’t recognize the name I wrote down so I could have been off by a country mile. Emailing through the website contact page is sometimes best. Too many calls is Too many calls. I even got one from the night nurse supervisor. Even though I have full authorization through the hospital to discuss and work with Chloe’s case, this person wouldn’t even give me a message for Dana. She didn’t get called back.

At 8:30 I run to the pharmacy only to find that the insurance information is, once again, screwed up. So I got one thing we needed and I was off to Fred Meyer for some food options. Basically milk, bread, cream sickles and lettuce. Back to the house and Chloe loved a little bite of the cream sickle. We all live for the day she won’t have to spit it out after tasting it. She so wants to swallow it, but can’t yet.

At 10 pm I set up the night feeds and medicine. Chloe was headed for bed and would get the feeds over the next hour and a half. At 11 pm the night nurse would show up and Dana would spend 30 to 60 minutes briefing her on the day. Tonight is a new nurse so it will take some time. Our bedtime will be about now, 1 am or so.

Recently I’ve admitted that, although I’ve been through the healthcare for and death of a wife, two parents, and two girlfriends, this past two year period has come to break me. It came to me about three weeks ago that I flamed out. It’s hard to describe and even harder to admit to, especially with all Chloe is going through, but I’m just hammered and running on whatever it’s called to get the job done. I’m not the comic relief I have been in the past for sure. And I’m not the person you want in front of you if you want to complain about anything.

Dana is worse off and has more to do. What has helped her a lot is all the support from people wanting to help. Meals have been a God send. By the end of the day she says she doesn’t even want to open a can of soup. So when the meals have been delivered she can, at least, keep nourished. For all of you who have been able to participate in this effort… and others… we thank you from the bottom of are hearts. Those of you at Celebration Church have been amazing. Barry and Heather have been so much a part of our healing. We are blessed to have such a wonderful place to look forward to going back to when we can. Let no-one take anything away from the light our CC spreads.

Be well,
Ron

Saturday, March 13, 2010 – 003 PH

She’s lovin’ the idea of being home, however, it’s been a conflict.  Although she is home she still needs to do things to get better.  It didn’t turn off when we left the hospital.  It’s almost like she thought she would be stepping into the house whole and complete.  Slowly, she is coming back to reality.  The more she works the faster she will regain everything, including the ability to swallow and eat.

Night nurses were a big downer for her until Dana and I both discussed it at length.  Without them we would have to stay at the hospital.  The two of us can’t do it all and she fully realizes that… maybe doesn’t like it much…. But realizes it.

We spent the second night with a nurse at the house.  In fact, last night there were two, as one was training so there would be a smooth transition when she takes over in a couple days.  There is focus on details all night long.  Keeping Chloe safe is our number one concern and we feel that is being realized.  We are also getting some good tips from nurses that have done the home care for a while.

Supplies will be adjusted to fit our needs.  Some were delivered that we didn’t need and others need to be exchanged.  The company supplying these seems to be working well with us.  They probably see a lot of parents that come home just fried and need lots of help and compassion.

Chloe is having a ball at the house.  She has been up and down the stairs many times.  Down on her butt and up on her feet with help.  Around the levels she either uses her walker or scoots on her butt.  She’s trying a lot of different ways to become independent.  The only place we definitely don’t leave her alone is in the tub, and she does enjoy her baths.

Tomorrow we are hoping for sun so she can get outside.  It was dry today but cold and there was a lot going on so we stayed in the house.  The wheelchair ramp is complete now, with anti skid strips, so we are ready to roll.  I’m still considering what to do about the deck and getting her in the back yard.

Those of you who have been helping with meals have been a God send.  Larry came by with a meal and baby monitor last night.  What a great gift of each.  It’s been a while since we had a good Greek meal.

Colin has been around also.  When he headed out to go to his dad’s house, Chloe stuck out her bottom lip.  I think she really enjoys the whole family together.  She even played tug-o-war with Ivey for a half hour last night downstairs.  It’s probably the most exercise poor Ivey has had in three and a half months.

All’s well tonight.  Hope it is with you also.

Ron

Thursday, March 11, 2010 — 001 PH

It’s been over 24 hours at home now. When Chloe walked in the house poor Ivey didn’t know who she was. She smelled differently, hospital smells, and she wasn’t talking to her. However, within a half hour they were on the floor together.

When we arrived the house looked like a medical warehouse. Stuff was everywhere and the equipment is plentiful and noisy. We will be doing some modifications to try and quiet her room up at least. Dana said it sounded like a helicopter over her head when she was downstairs. All that being said, Chloe told us she slept better last night than she has in three months. Maybe though, it was because Dana and Ivey were on the bed with her and I was on the couch on the other side of the wall…

I was on the phone twice with the company who supplies the equipment. There was one piece of equipment we couldn’t figure out at all and there was another that wasn’t operating the way we thought it should. I will say our questions were addressed immediately. It’s a good thing since we were both out on our feet.

Discharge went long yesterday. We were home about 6 pm after being done with therapy at 3:30. It was just one thing after another, but we finally were done and gone. It took three of us to get everyone and everything to the two cars. Sandy went right home with the equipment and we went to RiteAide only to find they didn’t have the prescriptions ready. Dana had to go back later. The same thing happened two years ago.

During the evening I sorted and stashed supplies. We had a fairly good system but found things that were wrong items and things that were missing. The supplier did come out today to go over things again and retake the order. We also need a different walker, as Chloe has decided it’s a great tool for getting around. However, this one just fits through the doorways and is way too wide for her.

The company providing the night nurse visited us again today. They discussed our concerns and had Dana fill out a packet of releases. They brought the last candidate for a nurse today and that meeting went well. It’s tough getting someone for those hours and especially tough for the weekends. Chloe will have a big say as to them being a good match or not. And my main concern is that they are physically able to get to Chloe in a flash and start suctioning. When she gets her blockages she needs someone right now, now in a few minutes. Tonight will be the first tryout I guess.

Dana won’t be getting much sleep again tonight I’m sure. She will be on guard with having a stranger in the house and having someone, with qualifications that may not be what we need, taking care of Chloe all night. We’ve brought her this far; we aren’t letting our guard down now.

It is great being home though.

Be well,
Ron

Wednesday, March 10, 2010 – Escape from Emanuel

Here we go! The last feedbag is hung and the prescriptions should be ready to pick up. Sandy will be here at 5 pm to help with the transport back home. And Chloe has had a constant stream of well-wishers who have grown very fond of her.

Today has been nuts. Every PT/OT/SP was a review and preview. The company that provides the night nurses visited us, and then two of the nurses came by. Dana and I couldn’t even get away to eat. She hadn’t had breakfast or lunch yet and was about to fall over. But, finally, at the final OT we had a chance to jump out, one at a time. The café actually had my favorite, the potato bar.

Our supplies were to be delivered yesterday. Some were, some weren’t. More were delivered about 4 pm with Sandy there to accept them. Nothing like waiting until the last minute.

RT Joseph has been in a bunch of times with last minute tips. Dr. Cuyler stopped by and got a two thumbs up for him. Wound Nurse Ted was with him and we got to say our goodbyes to him. We thanked them both for their sincere, and successful, efforts to make Chloe finally become at ease with the trach changes.

I was able to sneak away to the administrative offices to pick up a business card and confirm the name of the hospital administrator. We had some great things happen here but we also had some things that need to be addressed. I’m all for “Kite Awards” for the good things, but I’m also in favor of “Non-Kite Awards” to those who need improvement.

It’s sunny and cool, the perfect weather to be skating from this place. With as much as Chloe has become invested in the recliner in this place I’m thinking we will probably have to look for one for the house. She loves that chair. Somebody should…

We will keep the blog going, as Chloe has a long way to go before she is 100%. However, I will probably save my posts for the monumental events. So look for “week in review” type blogs, maybe a few each week. You, on the other hand, are invited to send us email through the website at any time. Blessings to you all.

Be well,
Ron

Tuesday, March 9, 2010 – Last night in Emanuel

Jenny wanted Chloe to try doing the E-Sim test again today. The plan was for Chloe and I to both have the electrodes attached at the same time. That couldn’t be done so I took my turn first. It was just like a TENS unit. Chloe was really reluctant to try it but when I suggested she just use the control to pump up the intensity herself she conceded. By the time we were done she was up to 7.0 and leaving it there. She hated the fact that my statement about anxiety usually being much worse than reality was confirmed. The actual results weren’t there yet but it was a huge start toward her being able to swallow again.

Most of the PT/OT was used for discharge testing. There was a lot of substance also but measurements had to be taken for the charts. She is doing very well on all the charts.

We had our full staff meeting today and much of this went very well. Everyone is excited for Chloe to be able to get home. And Chloe is excited that she will soon be able to hold Firebolt, her bearded dragon, again… with precautions.

Five o’clock was set for the trach change and silver nitrate. Dr. Cuyler was on board for the trach and Nurse Ted for the S/N. Chloe wasn’t on board much but she had good meds to prep her, Jessica was here for distraction, Mama and Sandy were here for support and I was standing by for suctioning and gathering supplies for the doctor. When we were done, Chloe was smiling. It went perfectly! She is finally feeling better about something that will be a way of life for a while.

Movie night tonight is Planet 51 and we are all set up. Most of the trips to the cars are done and we have a plan for tomorrow. Many of the supplies were delivered to the house and tomorrow we will try and sort through the mess so we can get Chloe in the room.

Dana’s brother, Kevin, built Chloe’s wheelchair ramp yesterday. After considering pressure treated lumber and exterior plywood he decided on building the most temporary ramp ever. The goal is to have it last a month and then tear it apart because it’s in Chloe’s way. I like his way of thinking.

Dana was at Hollywood Video today and ran into a guy who, nine years ago, was diagnosed with a benign brain tumor. He was so touched by Chloe’s story and vows to follow it. And he gave Dana so much hope for life after brain tumor. We thank you.

All evening we have had our goodbyes going on. I guess Chloe touched a lot of hearts here… go figure… We have some favorites but… don’t take it personally… we won’t be sorry not to be seeing you every day. To those who have been there for us thank you.

Be well.
Ron

Monday, March 8, 2010 – 2 Days, 1 night left

Oh so close. Two days! And figuring out what we will do at the house is the challenge. Today we received our suction machine. Tomorrow we are supposed to receive our oxygen and feed machines, along with many other supplies. This all depends on timing, as Dana can’t be at the house past noon due to things going on at the hospital. Whew.

Tomorrow is a big speech therapy day. We will try the E-Stim unit again to see if we can get a swallow to happen. This is key to getting Chloe to be able to eat again. She and I will wear it at the same time so that we can match my sensations with what she is feeling. Her feelings may be confused with all that has happened to her and she may not be feeling exactly what she should be feeling. Don’t try to make too much sense of that statement but it makes sense to us.

Tomorrow we also have our last full staff meeting. This will be a pre-discharge meeting. There should be more plans put in place then.

And lastly, tomorrow is trach change day with the next, new trachs. These are actually the ones we wanted the first time but weren’t completely successful in getting the message right. As of today these new trachs were “on the dock” in Indiana. They were to be overnighted to us for the change in the afternoon. We’ll see.

Looking at what we need for the house we seem to be getting there. One very big thing we need, that we are hoping to be able to borrow from someone for a couple weeks, is a good baby monitor. We will have an overnight nurse but she will have to hover over a sleeping Chloe if we don’t have a monitor. We’ll buy one when we can get out and about but for now a good loaner would be wonderful. If we aren’t at the house and you have one to loan, please put your name on it and leave it in the cooler at the front door of the house.

Thanks for all you do and for all you’ve prayed for. We are on the way home. This should be a big step in her recovery. The miles now seem shorter when we look to the future.

Be well,
Ron