Thursday, May 24 th 2007

Services.
Visitation will be held on Friday, May 25th from 5 to 8 pm.
Baldwin Fairchild, Oakland Chapel
5000 CR 46A Sanford. (corner 46A and Rinhart)
Robin loves flowers. We spoke in advance about it and that is what she wants.

The Funeral Service will be held Saturday morning, 11 AM at Annunciation. Then we will return to Baldwin Fairchild (the cemetery).
Annunciation Catholic Church
1020 Montgomery Road
Altamonte Springs, Florida 32714
407-869-9472

Wednesday, May 23 2007

It is over.
Robin fought hard. She didn't want to give in but the cancer was too much. She passed away peacefully and when she was ready. We played music for her at the end. She was with the people she loved and the people that loved her. Pray for Katelyn, Alyssa and Anthony as they come to grips with this. The funeral will be held on Saturday.

Sunday, May 20 2007

Robin is heavily sedated to ward off pain. Her heart continues to go on because she is a strong women who refuses to give in . She would endure anything to be with her children again. Robin did not have the luxury of growing up in a typical family. She so much wanted her children to have what she did not.
Thank you Ives for last night and Lourdes for staying tonight.

Saturday, May 19

The doctor who examined her said that Robin could possibly only last a few hours this afternoon. As usual, Robin proved him wrong. Her vitals were stable at 10PM tonight. Special thanks and love to Eives for staying the night so that I could get rest. Thanks to my friends who I haven't heard from in years. Robin is strong, not in pain, and could prove the doctors wrong again. We continue to be grateful for all the prayers, love and support from family and friends. I know that I wouldn't be able to do this without each and everyone of you.

Friday May 18th 2007

It is not going well. I don't know if she has a rally left in her. Please pray that she no longer suffers and that she can find some peace.

Thursday May 17th, 2007 (morning)

When they went to draw fluid from her lungs they discovered that there was not enough fluid to make it worthwhile. I guess that's a good thing. They didn't have to put her through a procedure that could have caused other problems.
Unfortunately, allthough they loaded her with platelets last night she was low again this morning. Last week I had a conversation with Nurse R about the possibility that the edema dilutes the platelet reading. She has been going up in fluid volume so that may have an effect. Dr. F informed us that the CAT scan from the other day showed possibly tumors in her lungs. I'm going to choose to believe that he read it wrong.

Night update

Robin has a procedure to remove fluid from her lungs tomorrow at 8:00 am. The risks are bleeding and a collapsed lung. They are loading her with platelets overnight to prepare her. She was nervous about it tonight. But when it is done it will make breathing easier. They've started diuretic again to help the edema. That should also help breathing and relieve pain in her legs.

I called my sister and put her on speaker using the cell phone. That worked well because we both could hear. She even wrote out questions. We watched a movie and she seemed to enjoy it.

Wednesday May16 (morning)

Robin had a problem last night after they repositioned her. It made her short of breath and she went into a panic respiration. It took about an hour to settle her down. We need to get fluid (edema) out of her (but not too fast). Also the Dr will drain fluid from her lungs as soon as her platelet count gets high enough.
We are trying to learn actual sign language.

Visitors

I don't know if anybody has been holding off but I think Robin is okay to have visitors.

Tuesday May 8th, 2007 (Morning)

KT reports that Robin is chipper again this morning. Dr. F reports that her liver is doing better.

We got platelets again last night but no tag came with it so we can't thank the responsible party. Keep up the good work. Yesterday they brought a bag of platelets (Scott S) in the morning. They asked for 2 but the blood center wouldn't give them up because they didn't have spares. When we have the directed donations waiting for her we won't have that problem. So your pain and time is helping so much.

Night update

Robin survived surgery and is recuperating. They found that the g tube had pulled out of her stomach. I suspect that all the jostling caused by moving her when the power went out might have caused it. They removed the tube. Now she has a nasal g tube to drain her stomach and perhaps later feed her. This is more uncomfortable but in the long run the tube had to come out of her stomach anyway. They discovered that her surgical wound ( about a 7" opening) is not healing well. Also tomorrow they will stick a big needle in her back to drain fluid out of her lungs.

Another update - Surgery needed.

Robin was doing well but Xrays show a leak from her stomach. She will have to have surgery today to repair it. All the usually concerns apply. Hopefully she will not be in so much pain when she comes out of surgery. Best case is that they decide to remove the G-tube entirely and use a nasal tube to drain and feed her directly to her stomach.

We got our first directed donation for plateletes. Scott S. was the donor. She is in constant need of platelets - in fact right now we are waiting for platelets to arrive so that they can start surgery. Try to stagger the donations because the platelates don't last long.

Monday May14 (morning)

Quick Update.
Robin is doing better this morning. According to KT she is awake and smiling and asking about what is going on around her. They are moving her to ICU #6 which is a little larger and brighter. They are also taking her down this morning to xray her to see if they can start feeding her through her G tube.

Mother's Day

Not much change today. Mostly she "rested". She acknowledges visitors but does not interact. She asked to see the kids so we brought them on. But she was too tired. But they got to kiss their mother on Mother's day and she got to see her children. Hopefully she'll start to gain some strength again.

May 12th, Saturday

Robin was a little better today. More awake but miserable. Hopefully she will be well enough tomorrow that we can bring the kids to see her for the first time in 3 weeks.

May 11

Robin is not having a good day. Low HR and BP, leg cramps and a clot in her leg. You may want to consider that when making visitation plans.

May 10

Trach surgery went well today. Robin had the tubes removed from her nose and mouth. Although she is still on a respirator and can not talk or eat she can at least smile and mouth words.

Wed May 9th

Afternoon -
KT called me this morning and said Robin was doing well, like yesterday. Trach surgery is tomorrow (no time yet) and the PICC will be done then. Her platelets were over 50 (which they need it to be +50 for surgery) and they will be giving her more today.

Night update

She is the most communicative today than any other day - writing lots of notes. She wrote a note that said "I want to go home". She even said she wants to see the kids. We'll wait until she gets the trach put in then hide her neck under the blanket. She is watching TV for the first time. Scratching and moving her feet around.

Platelets were low today even though they gave her some yesterday. She had been doing a good job of maintaining them. They are giving her more today.

They put on a diuretic yesterday and she lost 5950 ml of fluid (they put 2690ml in). The doctor decided to give her half the amount of diuretic today.

Trach surgery is scheduled for Thursday and she should get her PICC line tomorrow. If she has strong days like this she'll be strong enough to ween off the respirator. She hasn't been asking for the anti-anxiety med. Her HR has been low (50's) with a good BP.

Tuesday May 8th, 2007

So far this morning she is resting okay. Kathy may get to talk to the doctors this mornming and then I will have another update.
Platelet donations are now set up for friends. The account # is 290982. Make an appointment.
There are many Florida Blood Center locations throughout the state. I don't know for sure that if you are in a non-local county that they can transfer the blood. You will have to ask when you make the appointment.
http://www.floridasbloodcenters.org/

Seminole County
Florida's Blood Centers—Altamonte661 E. Altamonte Dr. #327 • Altamonte Springs, FL 32701(407) 831-6373 FAX 407-303-2680 Hours: Tue, Wed 11:00 AM - 7:00 PM Fri 7:00 AM - 3:00 PM

Florida's Blood Centers—Oviedo1954 W. St. Rd. 426 • Suite 1100 • Oviedo, FL 32765 (407) 588-1291 l FAX (407) 365-9982 Hours: Wed, Fri 9:00 AM - 5:00 PM Thu 11:00 AM - 7:00 PM Sat, Sun 8:00 AM - 4:00 PM

Florida's Blood Centers—Sanford1302 E. Second Street • Sanford, FL 32771(407) 322-0822 l FAX (407) 328-1119Hours: Mon, Thu 11:00 AM - 7:00 PM

Florida's Blood Centers—Winter Springs268 East SR 434 • Winter Springs, FL 32708(407) 327-3336 l FAX (407) 327-4347Hours: Mon, Wed 9:00 AM - 5:00 PM Tue, Thu 11:00 AM - 7:00 PM Fri 7 AM - 3:00 PM

Local Hospitals We Serve ( Hospitales Locales Que Suministramos):
Florida Hospital Altamonte
Central Florida Regional Hospital
South Seminole Hospital

Orange County

Florida's Blood Centers—Headquarters Campus8669 Commodity Circle • Orlando, FL 32819(407) 248-5000 l Toll Free (888) 9-DONATEHours: Mon 9:00 AM - 7:00 PM Tue, Wed, Thu 9:00 AM - 5:00 PM Fri 6:30 AM - 5:00 PM Sat 9:00 AM - 3:00 PM

Florida's Blood Centers—Downtown Orlando345 W. Michigan St., Suite 106 • Orlando, FL 32806(407) 835-5500 l Fax (407) 835-5505 Hours: Mon 9:00 AM - 5:00 PM Tue 11:00 AM - 7:00 PM Wed 6:30 AM - 8:00 PM Thu 9:00 AM - 5:00 PM Fri 6:30 AM - 5:00 PM Sun 8:00 AM - 4:00 PM

Florida's Blood Centers—Apopka131 N. Park Ave. • Apopka, FL 32703(407) 884-7471 l Fax: 407-884-7475Hours: Tue 11:00 AM - 7:00 PM Wed 7:00 AM - 3:00 PM Fri 9:00 AM - 5:00 PM

Florida's Blood Centers—Florida Orlando2311 North Orange Ave • Orlando, FL 32803(407) 898-6446 l FAX (407) 898-6447Hours: Mon, Tue 9:00 AM - 5:00 PM Wed, Thu 11:00 AM - 7:00 PM Fri 7:00 AM - 3:00 PM

Florida's Blood Centers—Valencia Community College1800 S. Kirkman Road, HSB Bldg. • Orlando, FL 32811 (407) 522-3779 FAX 407-522-3797Hours: Mon, Wed 9:00 AM - 5:00 PM Tue, Thu 10:00 AM - 6:00PM Fri 9:00 AM - 3:00 PM

Florida's Blood Centers—Winter Park5201 Raymond St., Bldg. 3126 • Orlando, FL 32803(407) 644-8927 l 407-644-7609Hours: Mon, Tue, Fri. 9:00 AM - 5:00 PM Wed, Thu 11:00 AM - 7:00 PM

Local Hospitals We Serve ( Hospitales Locales Que Suministramos):
Arnold Palmer Hospital
Florida Hospital Apopka
Florida Hospital East Orlando
Florida Hospital Orlando
Health Central Hospital
M.D. Anderson Cancer Center
Orlando Regional Lucerne Hospital
Orlando Regional Medical Cent
Sand Lake Hospital
Winter Park Memorial Hospital

Night visitors

I can't be there for the night shift so I like to know someone else will be. Let me know if you are going to be there after 8pm. (just got off the phone with Debbie K and she is on her way up.)

Orders to allow friends to donate platelets were faxed over after hours today. The surgeon is trying to fit Robin in for the trach surgery. She really is needing to get that done before the tube causes a problem. They are giving her benydral for itching. That coupled with the sedative makes her sleepy. But sleepy is a lot better than how she was Sunday. The nurse said being on the respirator makes patients nervous so that adds to her wanting sedative. She has to ask for the sedative and she can have it once every 6 hours.

I charted the #s for her fluid gain/loss each day. She lost 50% of her fluid in 3 days. They have put her back on a different diuretic at a lower dose.

Platelet donation update

Good news is that we have a donation account #290982. So you can make an appointment. At the moment though the orders are written for family only. I've asked the nurse to get the orders rewritten to include friends.

Monday, May 7, 2007

Quick morning update:
Thankfully, Kathy T. is back after having to be in a wedding over the weekend. It sounds like Robin is more relaxed and interactive this morning. (I'm sure just having Kathy around relaxes her). They are scheduling a trach and PIIC line for Wednesday. They have to get her blood clotting level just right before they can do that. They'll give her the complete package of blood, platelets, plasma etc.

And that reminds me. We may actually be able to donate platelets soon. The Dr. did write the orders to allow friends and family to donate (per Kathy R's request) but it was never sent for whatever reason. Might be because it was unreadable. Mara, yesterday and today's nurse said she will type the orders, have the dr sign them and fax them to the # the blood center gave me.

I'll have at least one more update before the end of the day.

Honestly, there are so many of you to thank that I can't thank all of you enough. But, again to everybody that has helped you are Robin's angels. (Just visiting and talking to her helps too). I don't know what I would do with out all of you.

Sunday May 6 2007

Rough day.
Which I suppose I could have predicted after having such a good day yesterday. Her BP dropped early in the morning. They gave her BP medicine but then her HR jumped to 160 and her respiration was in the 30’s. She was very critical. Even the Nurse was nervous. It took a few hours but she finally got stabilized somewhat. The nurse attributted it to the rapid fluid loss of the last few days and took her off the diurectic.

The weekend kidney doctor came by and wanted to put her back on the diurectic but I told him I didn’t want her to have another episode. He argued but in the end he left w/o writing the orders so the nurse said she would wait until morning for the regular doctor to get it claified. We checked the volume #s (BTW I have the red notebook with me). And it showed that she was getting more liquid than giving at first but for the last 3 days she was losing more than gaining. The nurse and I think that was a shock to her system. The doctor on the other hand was just looking at her overall #s and just wants her back to admitting weight.

I imagine she will have to get a trach tomorrow. I don't see her being taken off a respirator with what happened today. She might get the PICC at that time too.

There was a whole issue with her getting anti-anxiety meds. She had asked for them yesterday and I thought she got them but apparently not. When I got there I had to make the nurse get orders for them which she finally did. May have contributed to the problem this morning.
On a positive note her bowels are working. If she didn't have the other setback today we'd be in good shape.

Lets pray for a better night.

Cinco do Mayo,

Post OP Day14 - Robin wants a Margerita.


Robin is doing quite well and has a renewed positive attitude. She is feeling so good that she rescinded the DNR that she had wanted at the time of the surgery. She is writing on the white board w/o any problems. Most of her requests are to scratch an itch on her head. She has told me things to do regarding the children. When I told her Katelyn was going to Steak-n-Shake after her competition she asked if I gave her money.

The last time she had surgery it took a long time (a month) to rid herself of the fluid that had accumulated in her tissue (edema). In the last 2-3 days she has lost most of the fluid she has gained. This is wonderful progress.

The edema is painful and causes lots of complications. They have to be careful giving her diuretics because of its effects on the kidneys. It also causes problems with BP and heart rate. But Robin has had none of the problems. Her vital signs have held and her kidneys are functioning well. She can bend and move her legs and she is just more comfortable. (We did some PT on her legs today). Also because the edema is gone they can take the central line out of her neck and use her leg instead (if they don't do a PICC in her arm). The fluid tended to leak out of wherever it could - like her surgical scar. So now that can heal better. Also because she has less fluid in her the platelet count is better although the # may be the same. It's a higher %. So a count of 24 today is a lot better than a count of 24 a week ago. In fact, I think they are skipping a platelet infusion. Not having the edema makes it easier to sit up which is better for respiration. Also she needs to be sitting up to be fed.

Everything today was positive. When they changed the dressing on her surgical scar it was dry. The biliary bag was changed and was draining properly. Kidneys are fine and she doesn't have any new infections. She is healing and getting stronger.

Unfortunately, they don't wean off the respirator on the weekends in case of problems so we'll have to wait until Monday. But I'm pretty sure she is close to not needing it.

Thank you again to everybody for the help and prayers.

I met the infection Dr. who said she was doing good in that she didn't have any new infections. Due to her "liver failure" they have her on a series of 3 antibiotics that they rotate through out the day.
She was very responsive today. They took her off the sedative. She is still off the BP medicine. They gave her lasic to make her eliminate all the fluid they put into her. It worked and they were very happy that she was able to keep her BP up. She lost at least 6 liters.
She did well over night breathing on her own but she wasn't getting enough oxygen in her blood so they had to turn that up. Either she'll work her way off the respirator now or she'll get a trach and do it later. A trach is better than having the tube down her throat.
They are worried about her getting an infection in the central line in her neck so that is why they want to put a PICC line in her arm. The Dr. they need to do the arm procedure isn't on this weekend so they'll have to wait until Monday.
I think of much more to write while I'm there but I'm too tired by the time I get home. Thank you to everybody that has been helping.
Oh. Tomorrow she has RN Ruel who we like. Sarah, our other favorite, is also working tomorrow. She checked in on Robin this afternoon. Susan has had her all week and is also very nice. They have a pretty good crew of nurses up there.
Sometimes Robin points down at her bed with both hands. That usually means "what day is it?"
So she is still a bit confused.

Thursday, May 3 2007

They need to try to change her IV line in her neck so that it doesn't get infected. They couldn't get a vein to put a PICC in her arm. I don't know what they're going to do. The more she stays in ICU the more likely she is to get infections etc. Kathy said she was more lively during the day. She looked tired tonight. They had to give her benatral for itching probably because her bellarubin is going up. Lets hope she gets off the respirator. They turned down the settings while I was there and she did good. I talked the doctor out of giving her a trach for now. They are going to try to wean her off the respirator. Platelets were up (for her) to 42. Highest they've been while in the hospital.

Wednesday May 2 2007

Seemed like a good day today. Dr.s Curan and Kiley from Annunciation stopped by yesterday to visit and pray the Rosary for Robin and she was much more settled today. They cleaned her all up and got rid of one of the bags hanging off her. Surgeon said she was healing good. They took her of the BP med. We'll see how that does. She has a button that she can press to administer extra morphine when she needs it. ( They keep changing the pain med). She was awake and aware much of the day. Communicating by using the white board. She asked me if she was going home and I told her eventually. We have a different day nurse, Susan, that we like. Greg said the night nurse was one we had before to so I'm sure she's nice. Ethel bought a guest book to leave in the room. You can sign it and leave a note when you visit if you want. I'll check it for notes. Sometimes people come by and I don't even know it. Sorry if I left anybody out. We have been using the red folder to note any medical stuff (changes in meds, BP, etc).

Tuesday, May 1, 2007

They did a CAT scan over night because she was having stomach pain. They saw something in the spleen. The surgeon didn't see anything when he was in there, though. She was awake during the day but in pain so we told the nurse. I don't know if they upped the pain med or sedation. I hate to say it but her current day nurse has not been as attentive as the other nurses. I wrote the names of the drs, nurses and meds on the back of the red folder. If we take a note of which nurses we like we can request them. I've also started to keep some notes in the folder. Feel free to update them.

It appears to be so hard to donate the platelets for Robin that we may have given up on that. They seem to have enough so we can leave that on hold for now.