Thoughtful gesture...

My cousins' (Judy, Ed and Jaime) mom had asked if we had an offiliation with any churches and so I told her that Mario and Karen had attended Spirit of Christ in Arvada. She thoughtfully requested a mass in honor of my mom and this Sunday is the weekend that they responded with.

Anyone is welcome to attend. Spirit of Christ is at 7400 W 80th Ave in Arvada and the service will be at 5pm.

Memorial Slideshow and Video...

A link to the Memorial Slideshow of my mom (10:29)...



And a link to the video from the service (4:52). It's priceless to see and hear her laugh at the end. Hopefully soon I will have the Eulogy readings too.

Tina Rivera memorial video from April Hayes on Vimeo.

Obituary...

Ernestine “Tina” Rivera, 67, passed away February 26, 2011 in Denver, CO.

She was born on November 18, 1943 in Pueblo, CO where she attended East High School and was a Psychiatric Technician at the Colorado State Hospital, later becoming a Social Worker for the War on Poverty at the Salt Creek Service Center. She married Joe Rivera on February 28, 1970. Tina attended the University of Southern Colorado where she earned a Bachelors degree in Accounting. She worked at Pueblo County Legal Services for a short time as an accountant before moving with her family to Denver in 1985 to work as an auditor for the US Department of Commerce, OIG.

Tina had an early disability retirement which allowed her to do things that were important to her; spending time with her family, attending grandchildren’s sporting events and programs, and contributing time to her granddaughters’ human rights case, Jessica Gonzales vs The United States. She enjoyed writing, reading, doing research on her Native American background and completing projects around her house.

She will be greatly missed by her husband, Joe Rivera; children, Jessica (Bobby) Lenahan, Joe Jr (Denise) Rivera, Tomasita “Tommy” Rivera, Mario (Karen) Rivera and Mondo (Kelly) Rivera; grandchildren, Jessie, Alejandro, Adrian, Aubreyana, Darren, Mateo and Sophia; great-grandchildren, Josiah, Jazmariah and Jayda. Preceded in death by her parents, Fidel and Andrea Gomez; grandchildren, Rebecca, Katheryn and Leslie.

Click here to view funeral arrangement details.

Funeral Arrangements...

Click here to see my mom's obituary.

Thursday, March 3rd
Viewing & Visitation, 5pm-7pm
Romero Funeral Home
4750 Tejon St
Denver, CO

Friday, March 4th
Funeral Service, 2:30pm
Reception, immediately following service in church hall.
The Sanctuary Downtown
2215 W 30th Ave
Denver, CO 80211

Saturday, March 5th
Viewing & Visitation, 9am-11am
Rosary, 11:00am
Romero Funeral Home
110 Cleveland St
Pueblo, CO 81004

Interment, following Rosary
Roselawn Cemetary
1706 Roselawn Rd
Pueblo, CO 81006

Memorial Dinner, 3:30pm (Please bring your favorite story of mom to share)
Home of Dorie & Isaac Gonzalez
7 Malibu Ct
Pueblo, CO 81005

For those of you who have asked to contribute food, we thank you very much. Please contact the following people to coordinate:
Friday, Denver: Rosita Coca 303-477-7940
Saturday, Pueblo: Gloria Gomez 719-564-0693 or 719-214-7211
*If anyone has folding chairs or chaffing dishes we can borrow in Pueblo, please call Dorie at 719-582-9006.

An obituary will be placed in the Pueblo Chieftan later this week.

Just a quick note to let you know that my family is in the process of making funeral arrangments for my mom. I will post details as soon as they are determined.

Peace be with you momma...

My momma fought long and hard. I think she stayed around to give us a chance to see her laugh, and hug us and kiss us goodbye.

She was 67 years old (11/18/1943).

She was two days shy of celebrating her 41st anniversary with my dad (2/28/1970).

Focusing on LOVING her...

I'd really like to thank everyone for respecting my dad's, my brother's, my sister's, and my desire to spend yesterday alone with my mom.

She continues to be a fighter, which as I have said before, is true to her spirit.

We would also like for you to know that we have not made, and will not be making, any decisions on mom's arrangements at this time. We are thankful to spend what time we have left with her, loving on her.

Thank you,
Tommy

Pray for us...

O Lord, grant that I may meet all that this coming day brings to me with spiritual tranquility. Grant that I may fully surrender myself to Your holy Will.

At every hour of this day, direct and support me in all things. Whatsoever news may reach me in the course of the day, teach me to accept it with a calm soul and the firm conviction that all is subject to Your holy Will.

Direct my thoughts and feelings in all my words and actions. In all unexpected occurrences, do not let me forget that all is sent down from You.

Grant that I may deal straightforwardly and wisely with every member of my family, neither embarrassing nor saddening anyone.

O Lord, grant me the strength to endure the fatigue of the coming day and all the events that take place during it. Direct my will and teach me to pray, to believe, to hope, to be patient, to forgive, and to love.

Amen.

Heart wrenching decision...

Mom stayed sedated through the night yesterday evening and mostly comfortable. There was a point that her blood pressure got low enough that Dr. Solomon was called and ordered a fluid bolus to counteract. It didn't take long until it worked and mom's blood pressure readings came back to normal.

This morning Dr. Soloman came in and told us that mom's sputum lab came back positive for a kind of "super bug" infection. From what I understand, the strain of pneumonia that mom got at Swedish hospital was very resistant to antibiotics. The exception was the one that they chose to treat her with (Zosyn). Eventually, the Zosyn stopped being effective and was discontinued. The lab tests done on this new bug, are showing resistance to all other types of antibiotics that might be available. They are going to try to treat it with Amikacin (a previously used antibiotic), but aren't very confident it will work.

He also thought mom was dehydrated and ordered a fluid drip. By this evening, her lungs were sounding very "junkie" and the respiratory treatment did not seem to be doing the trick. Joseph, her nurse, called Dr. Solomonn and explained the symptons and her input/output stats. He ordered Lasix to help with removal of the extra fluids. She seems to be breathing better in the 3-4 hours since it was administered.

On a very much harder to write note, my brothers and sisters and I talked to my dad about mom's state and about her future care. We all agree that we have done everything we can to give mom a chance to come back to us and we believe that it has come to the time to let her go as peacefully as she possibly can. My mom, true to her spirit, has fought hard and allowed us some precious moments since this journey started back on January 1st. We were blessed to have her back for a short time to "talk" with us (ya ya ya), laugh with us, see joy in her face as she looked upon us, and even care for us, as she fought. I know that I will always cherish those moments.

Friends and family, if you haven't had a chance to say your goodbyes and you would like the opportunity, please stop by Colorado Acute anytime tomorrow (Monday, February 21st).

We - my brothers, my sisters, my dad, and my nieces and my nephews - would like to take some time to share the day privately with my mom as we place her in "Comfort Care" on Tuesday. (Comfort Care is like Hospice Care, except it will continue here at Colorado Acute Hospital instead of transfering her to another location.) The doctors are unable to tell us how long mom will stay with us once this transition has begun.

It doesn't matter how much we know that this is the right thing to do, it's the hardest thing ever. My heart aches more than mere words could ever convey...

We do thank you, for all of your thoughts and prayers...

xox,
Tommy

Removing stressors...

I know I should have posted this much earlier. In a way I didn't want to say anything in fear of jinxing it...

About 11:30pm last night, mom's heart rate went down dramatically to the low 80's. I watched the monitor for a minute and seeing that it didn't bounce up and down as it had been, I asked JJ to keep time on it. Five minutes later, it was still steady at 81-82. Rachel, her night nurse came in and turned off the Diltiazem. Her heart rate maintained and she came in and turned off the Amiodarone. The term they use is that her heart rate "converted" and went back to a normal rythym. It's held through the night and the day.

Treatment has continued. The doctor came in and said that they discontinued the Vancomycin antibiotic since they found out what "bug" she has. He believes it should respond to the Doripenem. She has been put on full support of the ventilator to relieve any extra stressors being placed on her. Throughout the day mom has been given painkillers (Oxycodone, Fentanyl and Ativan) in hopes of letting her recover from the trauma of yesterday. She's been in a highly sedated but restful state through the day.

Thank you God for giving me one more day with my mom.

xox,
Tommy

Annointing of the Sick...

Mom's very early morning (3am-7am) was a little bit rough. She had a fever and her heart rate and respiratory rate were elevated. She was doing better by morning after medication (to treat and for pain) was administered. Her linens were changed and the CNA Naomi layed her on her side about 8:30am. She seemed to really like that and laid there comfortably until the physical therapist came in just before 11:00am.

Her physical therapy session was pretty intense and lasted about 20 minutes. She did better than yesterday in the way that she opened her eyes pretty wide and even held her head up a bit. She seemed to focus on dad and look in the direction of where he was standing. For some reason, her physical therapist had shut off the monitor which also shut off the feed to the main desk. When we put the monitor back on, her heart rate was elevated up to the 170's (normal range is about 60-100). An EKG was ordered and confirmed that she was having an episode of atrial fibrillation (afib).

She has been given a series of medications to treat her high heart rate.

• Metoprolol first, with no positive results.
• Diltiazem next, with no positive results and rate going up to the 180's.
• Then Amiodarone. This drug is administered in a different manner. First, they did what's called a "bolus" (which is a faster way to get the medication) over the first hour. For the next six hours it was administered via IV at a slower rate. And the next 18 hours at an even slower rate. By 6:30pm, it also had no positive results.

Dr. Waddell consulted with Dr. Solomon and added Diltiazem (again) to the administration order in addition to Ativan. This is where she currently is at. Her heart rate has come down to the 110 to 130's. Not where we want it to be, but closer. Her nurse has been asked to make sure her blood pressure does not get too low. If it does, they will treat with fluids. So far, it's been okay. She also has a fever of 100.9 which is being treated with Tylenol.

At the same time, she is being administered pain medication to make her as comfortable as possible.

We had another meeting with Dr. Waddell this evening and have made a decision to place mom on a "Limited DNR" order at this time, which means they will continue to treat her, but should her heart give out, we will not ask the medical team to try to resuscitate her electronically or with compressions.

Father Daniel Cardo came in this evening to administer the Annointing of the Sick (I'm sorry if that's not the correct terminology - I didn't even know that they no longer give last rights). We think it's what she would have wanted.

Dad especially wanted me to ask and thank you for your prayers.

xox,
Tommy

Family Meeting...

Before we had the family meeting, Dr. Solomon came in and told us that they had results of the CT scan from yesterday.  Mom has had at least two more strokes - this time on the right side of her brain.  He said specifically in the right middle area and the right posterior area.  This can be part of the reason that mom is not waking up and responding as we would hope for her to.  That being said, she did open her eyes a couple of times last night and today. 

He thinks that bloodclots caused by the cancer thickening her blood are the cause of the strokes.  The thing is, they can't really treat her anymore for this because she is already receiving the maximum dosage of blood thinnner that is safe for her to take.  He mentioned that they could send her to Saint Anthony's for an MRI to better determine the exact source, but even with that he doesn't believe there is any alternative treatment.

They have taken her off the last antibiotic she was on called Zosyn and have ordered a couple of new ones, Doripenem and Vancomycin, intended to treat a new infection as well as her pneumonia.

They also have weaned her completely off of the ventilator and she is using what is called a "trache-collar" to offer oxygen support.  So far, she's doing well on it.

The family meeting was held with Dr. Solomon, Dr. Waddell, our Patient Advocate, a nurse and a respiratory therapist.  Basically, Dr. Solomon said that they really have done everything that they can do for mom, he doesn't think she will ever get to the point of being able to leave the hospital, and the chances of her getting any better than she is right now are very low.  There's no guarantee either way, but he offered up the decision for us to choose if and when we might want to put mom in a "Comfort Care" facility or a Hospice center.  The choice is either to treat her "aggressively" or just try to make her comfortable.

We have decided, for right now, to continue to treat mom.  Aggressive is a bit of a reach as they are unable to do any surgeries and won't transfer her even for the MRI, knowing that it won't change the current course of treatment.  They will, however, continue to administer antibiotics and pain medication.

We are very hopeful that we'll have some more time with mom, but we just don't know how long that will be.  We understand that some of you might want to visit and want to let you know that she is in the ICU ward at Colorado Acute. If you come, please go to the 2nd floor and come into the Family Waiting room first before you head to her room. 

Thanks for all of your thoughts, love and prayers.

xox,
Tommy

Pardon my language... Again.

Nothing much new yesterday except that mom had her last dose of Amikacin (which we expected) and she was taken off one of the anti-seizure medications called Dilantin. She had some Physical Therapy where Jeff and Garth came in and moved her legs and arms. And she still had a low grade fever through the day. Dr. Solomon mentioned that he might take her for a brain xray if she didn't respond by opening her eyes in the next couple of days.

Today...

Dr. Solomon (Pulmologist) came in again and said that he would be ordering a lot of labs (blood, urine, fecal and sputum) and also a CT scan to see if they can figure out the source of her fevers. The most common source would be an infection (and her white blood counts are up which kind of goes with that). However, they've been treating her with so many antibiotics for so long, it's hard to tell. He mentioned that he would hope that it's a stomach type issue rather than something more serious like bleeding in her brain or meningitis, and I just kind of had to catch my breath. It's hard to know all the things it could be and it's even harder to think about them once they mention it. (He did say that it was an extremely low chance of meningitis and that she was not showing other common symptoms of it). Another source would be blood clots (and he mentioned she had one in her arm). The third source, cancer. Have you ever heard of a cancer fever? I've heard the term quite a bit lately and I don't like it.

When he mentioned the blood clot, I asked him if he was talking about the superficial clot they had found back when she was still at Swedish (because that was the third time I had heard it referred to in the couple of days). He double checked and said that this was not a superficial clot, it was a new one that was found on the 12th. The cause is likely the PICC line (one of them told me it was common) and it's being treated. He didn't seem overly concerned about that, although that hasn't given me much comfort.

Lastly, he said he would like to have a family meeting within the next couple of days to get on the same page with all the docs and to discuss the next steps. I've had a hard time catching my breath over that one too...

Dr. Waddell (Hospitalist) talked to us, basically echoing what Dr. Solomon had said - except while he said he might put her on a broader antibiotic, she said she would like to take mom off of the rest of the antibiotics she's currently taking and try to see how that goes. Reasons given are that antibiotics can lose their effectiveness when given for such a long period of time and that they can cause false results on lab tests. I asked how this would affect her pneumonia (the last antibiotic she is on was ordered for that) and she said it might be that her pneumonia is not as bad as they think. What??

Dr. Yarnell (Neurologist) - is an ass. I'm glad he's supposed to be so great and amazing and a genius and all that, but he has the worst bedside manner. No people skills. And, he's never done anything more than come and look at my mom, ask us and the nurses questions, to which he never seems to listen to the answer of, and then say "She had a seizure" or today "I think you've done all you can". Serioulsy? WTF!!!!

I just looked at him and I bet I looked angry, because at least this time he asked me if I had any questions. And I said "Yes. My question is why do her other doctors say that it can take a couple of days for the Propofol to wear off. And, they've also said it's good that she is moving and showing in expression when she feels pain, and at least twitches her eyes when we talk to her?" And then he says "Well, she is moving both of her legs and her left arm. And she is doing good on CPAP. The first thing we need to do is get her off the vent." Then I asked him about Dr. Solomon mentioning ordering a brain scan to check for bleeding and he says "I don't know anything about that." Well, can you find it the fuck out please?!?! I mean, I may be wrong, but he's neurology. Shouldn't he be checking on her brain!!!

<<<Sigh>>> Sorry about that. I've been dreading writing this because I just don't know how to say what I've heard, what's going on, and to separate it from how I feel - because I'm pretty pissed off. And I'm scared too...

The thing is, I don't need false hope. If the doctor told me that there was no way she was coming back to us... No chance of recognition... Then I would process that. It would be the hardest thing in the world, but I would. BUT THEY HAVEN'T SAID THAT! They've been giving us hope and saying it could go either way, but one of those potential ways is her getting better. And if there is any chance for her to get better, we all (dad and brothers & sisters) agree that that is what she would want. What she would fight for.

Anyway, just a little bit after that, Jeff, one of her Physical Therapists came in and he asked me how I was doing. But he didn't ask it in a way where I could just say "I'm okay" and I don't know if I would have anyway. I said "I'm kind of frustrated" and I mentioned my meeting with Dr. Yarnell.

Wow. Jeff was amazing. (And I should say, he is not the first to understand my frustration at the lack of Dr. Yarnell's manner.) He talked about working with stroke patients and having seen them come back from places as bad or worse than where my mom is right now. He talked to me while I helped him with her therapy and he sat her on the side of her bed. As he held her up from the back, he asked me to sit on a chair right in front of her and talk to her. She opened her eyes. Now mom's eyes are not in the best shape and they've been closed for a long time, so they're swollen. It was more of a squint, but they were open and he said - "Now, if Dr. Yarnell would have done something like this, he could have seen. She needs stimulation." He was so caring and talked to me about real-scenarios and gave me hope.

Well, I didn't hear when the meeting will be but I suspect probably tomorrow. I'm guessing some labs will come back too.

Please pray for my mom.

Thank you!
xox,
Tommy

Let the weaning begin...

4:30am - Temp 99.0.

8:00am - Temp 101.6.

About 8:15 this morning, Karen (her respiratory therapist) put her on CPAP (continuous positive airway pressure) of 15. This is a weaning as she had been on "full" support for a while.

At 8:45, Ashley (her nurse) turned of mom's IV drip of Propofol. We don't know how long it will take for this heavy sedation to wear off, but have noticed that she is moving a bit more. Her arms and legs hardly stay still as a matter of fact.

A few times it looked like she might be trying to open her eyes, but that might just be wishful thinking. Being sedated and on the ventilator for this period of time has had affected her eyes - to me - quite a bit. Her left eye has badly broken blood vessels (we'll told that they will heal over time) and her right eye looks swollen and perhaps infected. A new antibiotic called Gentamicin was adminstered a few hours ago to treat that.

9:05am - Ashley stopped Amikacin, an antibiotic which they started administering on Tuesday, February 8th. It's a pretty serious drug and they take blood labs every so often to check levels. Mom's levels were high this morning, so the pharmacists will work with the Infectious Disease doctors to come up with a new dosage. From what I've found, this is a short-term drug and would not be administered for more than 7-10 days, and she's at the 7 day mark today.

9:45am - Karen reduced CPAP to 12. Mom is doing well respiratory wise.

At about 10:15am, a Physical Therapist came in to work with mom. He sat her up in her bed and tried to get her to open her eyes. He did some excercises with her arms, stretching them out and then reaching up to her nose, ears and head. That lasted about 10-15 minutes and he said he would come back tomorrow. I can't wait to see her be more responsive, or at least, a little bit alert. Her vitals all stayed good through the session.

10:35am Temp - 100.7.

So, it's noon now and she seems to be doing okay. She's wiggley, but her face doesn't seem to be showing an "in pain" grimmace. We're keeping a close eye though.

Lab results for the fluid taken from the side of her lung yesterday will be back in waves, some possibly today or tomorrow and some, not until closer to the end of the week. I'll let you know when we hear anything.

Take care & xox,
Tommy

Fluid in the lining...

Did I mention that mom had a CT scan yesterday? The results from the X-ray were apparently inconclusive so Dr. Vocal ordered the scan. He came in a couple of hours ago and gave us some information about what the results can mean for mom.

Firstly, there is a fluid build-up. However, the scan doesn't show exactly what the cause is.

Possibilities follow;

1) Extra Fluids: Fluids may be draining slower than it would normally take because of excess fluid intake. If this is the case (and we want this to be the case), she will possibly be given Lasix to help remove the fluids and the remainder should drain or absorb eventually.

2) Infection: There's a chance that infection has spread to the lining. If so, he has told us that the response would be to insert a chest tube. He could insert a large chest tube here at Colorado Acute or she would be transferred to Saint Anthonys for a small chest tubes. There are pros and cons to either option. And although he acknowledges that the large tube would be painful, he seems to be leaning towards that one for a recommendation. They would use this tube to drain the fluid causing the infection.

3) Metastasis: It's possible that the cancer has spread to the lining. He is especially concerned about this because after reviewing the scans from Swedish and comparing them to the scan from yesterday, he noted dramatic growth. If this fluid is caused by cancer, it will limit the options available to apply to this root cause. It could be that we would only be able to try to make her as comfortable as possible and continue to use ibuprofen to treat the "cancer" fever (has to do with swelling). We would continue to try to wean her off of the vent and pull her out of her coma-like sedation in order to do as much to help her recover from the stroke and be able to continue on with her therapy as much as she is able to handle.

Right now they are preparing to do a procedure called thoracentesis on her to collect some of the fluid to determine which situation is her's.

Thoracentesis

Thoracentesis

To remove fluid for laboratory analysis, your doctor may suggest a procedure called thoracentesis. In this procedure, your doctor first injects a local anesthetic, then inserts a needle through your chest wall between your ribs to remove fluid. In addition, a sample of tissue (pleural biopsy) for microscopic analysis may be obtained if your doctor is concerned that the fluid collection may be caused by tuberculosis or cancer. If only a small amount of fluid is present, your doctor may insert the needle with the help of ultrasound guidance over the site of the fluid.

Tracheostomy and fevers...

Mom had a temp through the day yesterday, which they said may be attributed to the seizure (neuro) but not sure. They started her on a new medication called Metropolo, to treat high blood pressure as well.

Early this morning - 5:45am - the transport team came in to prep her for the move to Saint Anthony's. It's only a couple of blocks away, so leaving Colorado Acute at about 6:15am got us there about 6:30am. She was prepped for the procedure and given some more medication to calm her and for blood pressure and heart rate. Surgery was scheduled and performed at 8:30am.

At about 9:30am Dr. Beck (her surgeon) came out and told us that everything went well. She was moved back to Colorado Acute at 11:15am. She is resting now, but has a fever of 103.2. Dr. Vocal says that it could be a couple of things, but is concerned that it might be a fluid buildup in a lining on the side of her lungs. An xray has been ordered to see if this is the case. If it is an infection, the fluid would need to be removed via a needle that would be stuck through her side. Another possibility is that her tumor has metastasized and is causing a blockage that is not allowing the fluid to drain. If this is the case, then that would mean that her cancer is Stage IV (right now it's IIIb). Nothing about that would be good. As far as we have been told, not only is mom not a surgical candidate - it's my understanding that they wouldn't even treat her. She's just not strong enough to take any kind of chemo or radiation type therapy.

Please pray that the fevers stop and that if they find the source of them, it's something or somewhere that they can treat.

Right now I can't help but be thankful that she finally got the tracheostomy. Thank God.

xox,
Tommy

Tracheostomy scheduled...

Mom is still in stable condition.  Her respiratory therapists are a bit concerned about the possibility of her having too much fluid in her system again.  They will talk to her Pulmologist today.

 

The tracheostomy has been scheduled for tomorrow at Saint Anthony's.  She'll be transported over there at 5:45 in the morning and it's expected that she will be able to come back to Colorado Acute Hospital by the evening.

F this "bug"!

Yesterday morning...  Because of mom's level of discomfort and pain, Dr. Lyn-Kew has taken her off of the Versed and Fentanyl and put her on a new drug called Propoflo.  It put her in a semi-concious sedation while they tried to figure out what was causing her agitation.  He believes it was too much fluid in her body causing what I am pretty sure he called a pulmonary edema (non-cardiac?).  They have treated her with lasix (as they did before) to remove the extra fluid and it seemes to be helping as her breathing has become much less labored.

Yesterday evening...  Dr. Lyn-Kew asked the nurse to start a gradual decrease on the dosage drip of the Propoflo.  He would like to be able to pull her out of the sedation enough to respond, but not so much that she is in pain.  By the time I left last night, she was moving her arms and legs, but not responding much more than that.

He also talked about the "bug" mom has which I gather from our conversations is her pneumonia.  We're told it's a strain that is very resistant to antibiotics, with the exception of the one that they happen to be giving to mom at this time.  There has been some improvement in the pneumonia looking at the last couple of xrays, but Dr. Lyn-Kew stressed that it could reverse or change at any time.  He talked to us about this in case there is a time when we would need to look at an alternative.  It turns out that what might be available are a couple of very old treatments that also happen to be quite toxic.  As a precaution, he is going to start a conversation about mom's case and condition with the Infectious Disease (ID) doctors so that if we get to that point, we have a plan in place.

(By the way, if you visit - she is under somewhat of a quarantine room.  It is important for the safety of the other patients in ICU who have weakened defenses that you wash and santize your hands when you come in and leave her room.  And also just a warning that the nurses will put on gowns each time they come in, so it doesn't freak anyone out.)

We asked Dr. Lyn-Kew if we could solicit other hospitals in the area for the tracheostomy.  He said her levels are at a point where he could recommend her for the surgery and we don't want her to fall out of that.  Since we've asked for the tracheostomy, they have only been working with Saint Anthony's to schedule it and it just doesn't seem to be moving along. He promised that he would call on someone at Swedish and if that didn't work out, move on to Rose Medical Center.  Both are capable of performing the procedure.  Hoping and praying to hear things move along quickly regarding this.

They also took blood labs from mom (they are always taking blood labs) and the results came back with low blood counts.  Ashley, her nurse (love her), said that it could be that her blood was diluted due to the extra fluids she recieved on Sunday.  However, it might also mean that she will need a blood transfusion.  She had said that the results from that lab would come back quickly, but as of this morning, dad had still not heard anything or been asked to sign a consent.

This morning...  Dad said that she had a pretty good night.  They stopped lowering the dosage on the Propoflo at shift change (7pm) and she stayed about the same as she had been when I left - that is moving, but not in pain and not alert.  Dad said he even got some rest and was happy that although mom wasn't in "need" of the kind of attention she's needed the past week through the night - her nurse still came in and did everything to make her comfortable.  Changing her sheets, cleaning her up and rubbing lotion on her back - just because.

Again, if you could please send out good thoughts and prayers about getting her tracheostomy as soon as possible, that would be great.

xox,
Tommy

Propofol

Propofol

 

General anesthetics normally are used to produce loss of consciousness before and during surgery. However, for obstetrics (labor and delivery) or certain minor procedures, an anesthetic may be given in small amounts to relieve anxiety or pain without causing unconsciousness. Some of the anesthetics may be used for certain procedures in a medical doctor's or dentist's office.

Propofol is used sometimes in patients in intensive care units in hospitals to cause unconsciousness. This may allow the patients to withstand the stress of being in the intensive care unit and help the patients cooperate when a machine must be used to assist with breathing. However, propofol should not be used in children in intensive care units.

X-Ray Results...

Mario and I stayed with mom last night, although I slept the whole night. He said she rested and was given pain medication when needed. The results of the xray showed that the intubation tube was placed correctly and there were no changes from the last one - meaning she did not aspirate that they could see. Thank God.

Re-Intubation...

I could use a Valium about now...

Another rough night starting about 3am. Mom was in an obvious discomfort and looked as if she was in a lot of pain. At 4:15am she had a fever of 100.6. At 5:35am, it was 101.9 with an elevated heart rate and blood pressure. She was administered extra Fentanyl, Cardizen and Tylenol and eventually settled down, albeit hours later.

Mom's day nurse from yesterday was back and I was, and am still, so thankful. He paid such close attention to her, checked on her constantly, pro-actively monitored and treated her for pain and just in general was amazing.

I left for a short time just before his shift ended at 7pm. When I got back from dinner at about 8pm, her night nurse was just coming in to change her. When he rolled her to her side, her intubation tube came out. All hell broke loose about then and I am not going to lie, I was scared. The respiratory therapist came in and "bagged" mom while she ordered an emergency intubation kit and called for the doctor. He had already left for the evening and she simply said "Get him back here. Now." A scene right out of ER errupted right in front of me as the room was filled with people. Joseph (her day nurse) came in too - already changed and with his jacket on ready to walk out the door, he quickly got right into the mix and started helping.

We waited in the hall while they worked on mom. Joseph came out with an update telling us that the tube had come out and they would have to re-intubate her. He assured us that she would be okay. An hour later, Dr. Patel (the day hospitalist) and the night doctor, came out and let us know that the re-intubation had been completed and that it appeared to have gone ok. Mom's vital stats stayed steady throughout the procedure. They've taken an xray to check that placement is correct and should be able to tell if she aspirated as well. Not sure when those results will come back but we were told it would be sometime tonight.

She was heavily sedated for the procedure with Versed, Fentanyl and Succinylcholine and appears to be resting okay. We're definitely keeping an eye on her.

As always, your thoughts and prayers are appreciated.

xox,
Tommy

Temp 104.7

Mom was uncomfortable yesterday evening when her night shift nurse came in (about 7pm). Mario was staying with her as my dad went home for the evening and he had been trying to get her some pain medication for a while. He was told by the day nurse that they would alternately be administering Versed and Fentanyl every half hour. At 8:10, she got her first doses. About 8:30 two nurses came in to set up a Fentanyl drip so that they wouldn't risk missing a manual administration of the prescribed dosage.

At 9:00pm the drip was just finishing being set up, when Mario asked the nurse if she knew what mom's temperature was because she felt hot. She didn't know so she started to take a reading and before the thermometer was done, she confirmed that she did have a temperature and then left the room to get a doctor. Her temperature was 104.5.

Five minutes later Dr. Patel, the hospitalist, came in and checked her stomach. He said it was not acute. He was concerned of a distended abdomen. He told Mario that if there was a perforation it might cause her stomach to harden and swell. If this happens, Dr. Patel says that they probably will not be able to treat it as she is not likely to be a surgical candidate.

At 9:15pm her temp was 104.7. They iced mom up pretty good - ice bags under her neck, arms and legs and treated her with Tylenol, Ibuprofen and Vancomycin. At 11:20pm her temperature was 99.6. The nurse said she had never seen a temp go down so quickly.

Blood labs were drawn and showed that her white count was up. Dr. Patel said that it was good that they had already ordered and administered antibiotic to treat.

At about 4:40am, mom's blood pressure started getting low and her temp was at 96 so they turned off the Fentanyl drip. There's a fear that in such a sedated state, mom's brain might not be allowing her to "take care of herself". After that it seemed to be okay as she rested well through the rest of the night and most of the morning before needing another dose. (At 5pm this evening, the drip was put back on and they will be monitoring it closely. )

At 7:30am, her heart rate went crazy. It got up to 155 and they acted fast to get that under control by administering Lopressor and Cardizen. At 10:50am it stabilized and has been okay since then. Likewise with her blood pressure.

It's been a whirlwind of medications today and I will have to look them up to get it straight in my head. They kept a really good eye on her and I think she rested well. It's hard to know since she is unable to communicate with us at all. It's very hard to see her like this, but I am faithful and hopeful that the tracheostomy will happen next week and put her on a road to recovery. Please pray for this.

xox,
Tommy

Intubation... (is that how you spell it?)

The EEG trip took just over an hour and there were no issues going and coming back from Saint Anthonys. We still haven't got the results, and are hoping that what we have learned is true - No news, is good news.

Yesterday she was started on another anti-seizure medication called Dilantin in addition to the one that they started her on on Wednesday (Keppra). I'm not sure what has done what, but she doesn't appear to be tensing up with her brows furrowed nearly as much. Dad said she rested through the day and got by okay with Percocet. She does wince and get fidgety, but it's not as constant as it was before. Her face was more relaxed (her lips were not pursed together like they had been) and she seemed to get some rest through the night.

------

Just talked to Dr. Vocal (Pulmologist). He is recomending that we intubate my mom to reduce the risk of her getting another case of pneumonia. In her current state, she non-responsive and the fear is that she will aspirate on the mucus that she does manage to cough up. This will put her on a ventilator and in a medicated coma. We are hoping that this will help to speed up the scheduling of her tracheostomy, which we have been waiting for.

This is not considered an emergency procedure - as in placing her on life support with no other options. She has been breathing on her own (although with a nasal cannula to offer supplemental oxygen) - and we were asked by the doctor if we wanted to go through with this recommendation. We feel like pneumonia is a huge risk and has been one of the main things to bring her down, again and again and because of that, we wanted to do the elective tracheostomy in the first place.

Once more, I don't know if this even makes sense... I'm trying to wrap my head around it and am praying that we are making the best decisions for my mom.

Please pray that we are...

xox,
Tommy

Restless night...

After the Ativan wore off last night, mom started getting fidgety again.  The Percocet helped for a short time, but did not last the whole four hours between does.  She was given Dilaudid as well, but I don't see that having a great effect on her either.  Her night was quite restless, spent tossing and turning and moaning in what looked like pain to me. 

I left at 6:15 this morning as she was just about to get another dose of Percocet.  I talked to my dad at just after 8am and he said that it had seemed to calm her down and allow her to rest.  They were getting her prepped to transport to Saint Anthony's so that they could perform an EEG on her.

EEG (electroencephalogram)

An electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This activity shows up as wavy lines on an EEG recording.

An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders.

 

To read more about EEG's, click here.

Seizure...

Here I am again, not knowing where to even begin. My face hurts from crying... yet I know that things could be far worse and I have faith and hope that they will get better.

Mom had such a great day yesterday and I was so happy that it was a "snow day" at school which allowed me to spend time with her - seeing her do so well. It's hard to believe how quickly things can turn around.

Early this morning I talked to dad and he said she walked all the way around the ICU ward (more than twice as far as yesterday) without stopping for a break.

Today was a good friend of our families funeral. Manuel, who my dad worked with at RTD, passed away last week from Stage IV liver cancer. Mario made arrangements to come and stay with my mom so my dad would be able to attend the services.

I called Mario at 11:45 this morning to see how she was doing and he said good. She was sitting in her chair, dozing in and out while listening to the radio.

About 11:30, the nurse had come in and said that they might move her back up to the 3rd floor (non-ICU unit).

They had just taken her vitals at 11:40 and everything was good;
Temp 97.6, BP 132/60, Oxygen 97 & Heart Rate 79.

After our phone call, Mario said he noticed her dozing and told her "Mom. Wake up! You're missing the story!" and she looked at him and laughed, then dozed off again.

At 11:50 she suddenly woke up groaning and lifted both arms at the same time in a locked position in front of her. When he called to her and tried to get her attention, she lulled her head to the left but didn't focus or respond to him. He called for help.

The doctor came in with more staff and took her down for a CT scan. They had told Mario it could be another stroke, the same stroke, a hemorrhage, an infection or a seizure.

When I got to the hospital, she was lying in a non-responsive state with her lips pursed shut (very strange because we usually can't get her to close her mouth when we want her to breathe through her nose). The respiratory team was suctioning mucus through her nose.

The results of her CT showed no acute bleeding - although we were told this might not be seen for 6-7 hours. The neurologist came in and when he examined her, she finally responded. She raised her arms and moved her feet when he asked and she even seemed to open her eyes. He believes that she had a seizure which is apparently a common result of bleeding in the brain from a stroke. They have started her on a seizure medication called Kepra.

The best she came out if it was when she saw Mateo and Sophia and reached over to hug them. It was a brief glimpse of mom. Soon after, she seemed to be in pain and received her pain meds. It looked like they offered her some comfort in a less tense sleep.

About 6pm she started getting fidgety and making more groaning sounds. Her breathing sounded horrible. Her nurse said it was similar to her fit this morning. Respiratory did another nasal drain and she got more pain killers along with some Ativan. She is resting in a comfortable - or at least less tense although completely "out of it" kind of way. I can only hope and pray that this is what she needs. It's hard to imagine how much this day has taken out of her.

My apologies if this doesn't make a lot of sense. I'm writing this out on my phone with bloodshot eyes and a pounding headache.

Please pray for her.

xox,
Tommy

Spa Day...

It was a good day for mom. She walked almost twice as far this morning as she has this whole month - about 225 feet down the ICU hallway. She was doing well enough to be able to take a shower too. Although it wore her out, she was very relaxed when she got back into bed.

Her oxygen levels are doing better as well, and she is back on 4 liters. She is continuing to take Lasix to remove the extra fluids from her body and the reduction in swelling is really apparent. They have also ordered a new medication for the purpose of keeping her heart rate and blood pressure in check. All of this should reduce the risk of complications with the tracheostomy.

It was great to see her alert and even laughing today.

Hopeful for a good night's sleep and continued improvement of her condition.

xox,
Tommy

Baby steps...

Came in about 6:30 tonight and mom was walking with the help of a walker and her physical therapist. Yes, WALKING. She walked about 100 feet outside of her room, to a window and then back to her bed. She was wiped out by the time she got back, but she did it. Yay Mom! Keep it up!

No tracheostomy today...

Dr. Lyn-Kew said the tracheostomy will not be scheduled until mid-week.  He wants to wean mom off of dilaudid and aspirin, which are blood thinners and can add to the risks of the procedure.  He also does not want to transfer her in this weather if it's not an emergency.  Dr. Lyn-Kew also said he wants to start her therapy back up.  Dad talked to someone who is doing an evalution on her today. He says mom is still on an oxygen mask and is doing okay.

Episodes...

Mom's weekend was pretty good considering how bad Friday was.  She seemed to regain some of her strength and was even able to sit in a chair a few hours each day (although reclining almost as if in bed).  It was good to see her alert and smiling when she saw family and friends visit. 

 

She did have a couple of "episodes".  I don't know what else to call them, but what happens is everything pretty much goes bad.  Her  Blood Pressure gets too high or too low, Oxygen Levels get too low, Heart Rate goes up, Temperature goes up, Pain and Discomfort is evident.  So that's what I mean when I say "episode".  From each one, Saturday morning and Sunday morning, she seemed to recover.  Sunday her oxygen levels didn't bounce back as much as they should have, so they kept a 40% oxygen mask on her.  It made her pretty miserable. 

 

Late yesterday evening the respiratory therapist suctioned her through her nose.  It was pretty traumatic for mom, but it did clear her up enough that she was able to remove the oxygen maks and put back on a smaller nasal canula (the kind that looks like a mustache) and she seemed to be resting well for a short time.  I'm not sure what time it was (last night was somewhat of a blur), but I think about 3am, she started having another "episode".  It was the worst I've seen, and dad said it was like Friday's, but not as bad.  It took about 2 hours to get her settled down.  This time, percocet seemed to work and it didn't knock her out as bad as Friday.  I guess they had given her Ativan on Friday and that was maybe part of the reason she was so unresponsive.

 

I left the hospital at about 7am and she had been resting - what seemed comfortably - for a short time.  She woke up enough to say goodbye to me and nod in acknowledgement when I asked her if she was okay. 

 

I taked to my dad about an hour ago and he said that he spoke to her hospitalist, Dr. Patel and he said that they are going to try to schedule her tracheostomy for today.  This will require transporation to another hospital.  Probably Saint Anthony's, but maybe Swedish.  He is concerned about the swelling in her arm.  Mom's right arm has been swollen pretty much since this all started because of the lack of use.  We try to keep it elevated and move it for her, but it's not the same as daily use.  He mentioned to dad that he has some sort of medication he may give her to treat that - not sure what it was.  If and when it is scheduled, I'll post a quick update.

 

Dr. Lyn-Kew said that this surgery is statistically pretty safe.  Please, please, please keep her in your prayers today and send any good thoughts that it will help her with her breathing issues and allow her to move on in her recovery and rehabilitation.

 

Thank you.

 

xox,

Tommy

I like to call her "Yeah-Yeah"..

Dad had finally went home (his first night since this happened) and I stayed the night. Even though they had brought in a cot for us, I just reclined in the chair next to her bed. It's the most anxious I've been (and I have been pretty anxious lately) and I couldn't help but open my eyes every several minutes to check her heart rate, blood pressure and oxygen levels. Her blood pressure had been stabilized with the fluids they were giving her during the day, but in the nightime, it had been going down again.

Finally, about 2am, she became really fidgety. It was the most alert I had seen her. She even gave me a kiss. Before that, she wasn't even opening her eyes when we talked to her. She affirmed that she wanted to use the bathroom and used a lot of her own strength to stand up and get to the comode. I rested a bit more comfortably after that.

At about 9am she started to exhibit signs of pain and discomfort. I was scared as I saw her heart rate and blood pressure increase and her oxygen levels decrease. It wasn't until about 11:30am that the doctors decided to give her Lasix. The Lasix was supposed to help remove some of the fluids that were given to her yesterday and increase her blood pressure. It seemed to work quickly and it helped her to calm down. They also increased her pain medication to full dose. It was a rough couple and a half hours, but she finally started looking better and resting comfortably in the afternoon.

Although she was in pain, it was good to see her more alert; responding to her name and answering "yeah, yeah" to every question we asked her. She even sat in her chair, although reclining, for a good hour or so. She was very happy to have some visitors in the afternoon, especially grandchildren Sophia and Mateo who shared their latest sporting endeavors with her. Sitting in the chair also seemed to help her breathing. I hope she will be able to do more tomorrow. I'll be happy with a good night's sleep for her though.

So... today was definitely better than yesterday. But, she is still in ICU and her condition is still critical. Please continue to pray for stable vitals and for her to be able to clear the junk out of her chest, or at the very least, it not to get worse.

By the way... if anyone happens to know where I can get some no-rinse shampoo caps, please let me know. Mom hasn't had a good hair washing for over a week and I'm sure it would give her great comfort to have it done. The no-rinse gunk they have here is kinda gross!

Tough night... Tough morning...

About 2am this morning, mom's heart rate went up. Way up - to 160. We haven't really been tracking her heart rate because it hasn't been an issue, but we know that it should have been around 60 or 70. Last night was alarming enough that it freaked dad out. He asked the doctor if he should call us kids. Dr. Lyn-Kew (correct spelling) told him "no". The fact is, mom has took a turn - in the wrong direction - and she is "sicker" right now. The stress of everything affected her heart rate. Apparently, it's pretty common and they were able to control it with medication. Since then, it has been stable.

At 4am her temp went up to 102.7. Blood cultures were taken to test for sepsis. The results will take 24/48 & 72 hours. Urine was also tested and that came back negative. By about 6:20am, her temp was down to 100 and then 99.4 at 7:35am. At noon, her temperature was 97.8 - *whew* back to normal.

Dr. Lyn-Kew, her Pulmologist, talked to us about her most recent chest xray. She has new pneumonia in her lower right lung caused by aspiration, which is a result of her inability to swallow and cough up the junk in chest. He has asked us to get together and discuss options of what to do in the case that they have to put her on a ventilator. He also mentioned the possibiliy of performing a tracheostomy. These things will not happen sooner than Monday unless an emergency situation should arise. We have asked if a selective tracheostomy is possible and Dr L said that it is, but not in her current condition. We need to see if her blood pressure improves (it's been low since I arrived this morning). Hopefully her condition will improve enough that we can be pro-active in getting her this option.

Right now, she seems to be resting comfortably. Her heart rate looks good, as does her oxygen level. Her blood pressure is still low, but improving (with the help of fluids, they think she was dehydrated and this might have caused the LBP). She is much less responsive and has hardly opened her eyes, but we're told that this is also expected with her worsened condition. They did take a blood gas lab to make sure those levels were okay and we were told they were. This is really good because if they were not okay, they might have had to put a tube in her throat (ventilator) to help her breathe.

In addition, she seemed to be having stomach pains and they took an xray of her stomach to see if they can figure that out. In the meantime, they have stopped her feeding tube.

In the whole scope of things, this is of little importance - but I woke up this morning to a leaking boiler and a flooded basement. I've never been one to ask "Why me?" - but I did ask "Why now?".

Here's to having faith that there is a plan. Please pray for her condition to improve and please pray for my dad.

Thank you.

xox,
Tommy

Sepsis

Sepsis is a potentially life-threatening condition, in which your immune system's reaction to an infection may injure body tissues far from the original infection.

As sepsis progresses, it begins to affect organ function and eventually can lead to septic shock — a sometimes fatal drop in blood pressure.

People who are most at risk of developing sepsis include:

• The very young and the very old
• Individuals with compromised immune systems
• Very sick people in the hospital
• Those who have invasive devices, such as urinary catheters or breathing tubes

Early treatment, usually with large amounts of intravenous fluids and antibiotics, improves chances for survival.

To read more about sepsis, click here.

Tracheostomy

Tracheostomy (tray-key-OS-tuh-me) is a surgically created hole through the front of your neck and into your windpipe (trachea). The term for the surgical procedure to create this opening is tracheotomy.

A tracheostomy provides an air passage to help you breathe when the usual route for breathing is somehow obstructed or impaired. A tracheostomy is often needed when health problems require long-term use of a machine (ventilator) to help you breathe. In rare cases, an emergency tracheotomy is performed when your airway is suddenly blocked, such as after a traumatic injury to your face or neck.

When a tracheostomy is no longer needed, it's allowed to heal shut or is surgically closed. For some people, a tracheostomy is permanent.

To read more about a tracheostomy, click here.

Aspirate

Aspirate

To inhale something, especially a liquid, into the lungs.

A new ICU...

Mom went in to Saint Anthony's for an MRI yesterday afternoon. Dad said that one of the doctor's came in and the results were "clear". He wasn't sure what they were checking for though. I asked him to ask the doctor the next time they come in - but for now, I'll take "clear".

She had a respiratory treatment just before I left last night and it was with Chris, who has been there the last three nights. He's a funny guy and has made us all laugh each time he comes in. But what I really like, is how he calls mom "beautiful" and tells her what a beautiful smile she has. It's really sweet.

Today - just talked to dad and he said that he spoke to Dr. Lin-Q (not the correct spelling) and they will be moving my mom to their ICU floor this afternoon. He made it sound precautionary, but the deal is that her oxygen levels have been really low. Right now she is at 97 with 15L. She had been in the 90's with 2-5L.

Please pray that mom gets the strength she needs to cough out the conjestion in her chest. It's critical. Pray that she relearns how to use the muscles she uses to speak and swallow so that it's not so hard for her.

Thank you.

Talking, smiling, singing, laughing...

Mom was in regular pj's yesterday. Well, like hospital scrubs. That was very cool to see. I don't know why, I guess because it made her look less fragile to me. She was hot at one point and had barely covered herself. But when the respiratory therapist came in, she pulled down at the hem of her top and pulled her sheet over her. It looked like a dispay of modesty to me, and that made me happy to see too. Could have been, and more likely was, that she was cold.

She slept for the first couple hours of the evening when I got there (she had just got her pain killers) and then all of a sudden must have got some energy because she woke up and starting hamming it up. Talking to us and smiling and laughing. Dad sang "Las Mananitas" to her while she was getting a massage on her back by her therapist. Mom has always loved that song and she perked up so excited and sang along with him.

It was a good night...

Day one. Again....

Things seemed to have got at least a bit better by the afternoon (and after we had a talk with our case worker).

When I stopped in after work last night, mom had just got a PICC Line. Finally. A PICC line should stop the need for having to keep moving her IV every few days and poking her again for a new one. I can't even count how many IV sites she's had since this all started. We asked if she could get a PICC at Swedish, but they said they didn't know how long she would need it. It's appearing that she will need IV antibiotics for a while.

Dad said that the Occupational Therapist came in to work with her, but he was downstairs having lunch and wasn't sure what they worked on. When he came back, she was sitting in her chair. The Physical Therapist came in to work with her in the evening (right after I arrived), but she was in a lot of pain and after a couple of steps, we all noticed that her new PICC line site had started bleeding. We're told it's not uncommon, especially since she is on blood thinners. The site was wrapped to put pressure on it, and mom sat in her chair for another hour or so while she got a respiratory treatment and then I gave her a good lotion rub down and moved her ankles in circles. They took off those things that simulate walking that have been on her legs since she got to the hospital, saying that they could break up the blood clot. Sounds fishy to me that Swedish would push it so much and it's not a big deal at Colorado Acute. I asked dad to check again with her doctor.

Well, if you have free time in the day and want to visit, it would be great. We (my siblings and I) are all back to work and can't be there as much as we'd like to. Dad is still staying the night and of course all day. He could probably use some company too...

xox,

Tommy

PS - I added a guestbook to this page (top). Please sign it and I'll let mom know you "stopped by".

PICC Line (Peripherally Inserted Central Catheter)

PICC Line (Peripherally Inserted Central Catheter)

A peripherally inserted central catheter, or PICC line, is a soft, thin, flexible tube that is inserted in a vein in your arm and threaded up into a larger vein near your heart. Ultrasound imaging may be used to help guide insertion of a PICC line. And an X-ray may be taken to verify correct placement.

To read more about a PICC Line, click here.

BTW - Mom is not receiving Chemotherapy through her PICC Line. We have not begun the discussion of her cancer treatments yet.

You got jokes huh?

So Saturday I got to see mom walk about 125 feet with the aid of a walker and her Physical Therapist. It was awesome!  Her PT said that she wasn't responding to commands as well, but her strength was better.  It's not unusual, some times are just better than others.

Yesterday was pretty good in the morning and early afternoon.  I woke up at 8am to see her sitting upright at the side of her bed.  Up until then, she had woken me when she wanted to get up by saying "yeah yeah yeah".  She was just sitting there.  I asked her "Whoa.  Where are you going!?!" as I jumped up to check on her.  She just looked at me and quietly said "Yeah, yeah."  I asked her if she had to go to the bathroom and she confirmed it.  We called for assistance and just afterwards, I noticed that she pulled her PEG tube out.  Not the whole thing - there's a breakaway piece and that came disconnected though, and her liquid diet was dripping onto the bed.  Everything was okay though.  She was reconnected and was happy to get back to bed. 

A couple of hours later her Tech came in.  She wasn't very alert and didn't want to sit up, but we moved her to a chair while her linens were being changed and told her she could put her head back and sleep there if she wanted to.  It's good for her to sit up, hopefully helping break up the conjestion in her lungs.  BTW, she sounded a lot better yesterday too.  Still bad, but better than the day before.

Mom ended up sitting in her chair until she was picked up for transport to the LTACH.  Towards 1pm she was really putting on a show for us and making us laugh.  I had walked by her with my soda and she started licking her lips and reaching for my cup.  I felt so bad when I said "Oh mom, you can't have this.  You can't drink anything.  Let me get a sponge-pop to clean out your mouth."

When I came back and put the moistened sponge in her mouth, she clamped down and started sucking away.  There wasn't enough water to hurt her, so I let her keep it.  A few minutes later she was playing with her ice pack and looking at me.  I said "You want some ice, don't you?" and she nodded yes.  I said "Mom, you can't have any.  You can't have any liquids right now.  It's too dangerous until you can swallow correctly." and she looked sad.  She lifted the bag to her mouth as if she could drink the ice cubes right out of it, keeping her eyes on me.  Then my dad said "Whoa.  What are you doing? You can't have that.  You can't drink that, it's bad for you." It looked like she was trying to use the sponge-pop as a straw and he told her "that's not a straw!".

She put her head down, hiding behind the ice-pack and began to cry.  We all siezed up and got quiet and my dad leaned over to say he was sorry and hug her.  As he did, she peeked over the top of the ice-pack and started laughing - really loudly.  It was so funny!  We all laughed out loud for a while and she laughed and smiled a lot too.  She was clearly pleased to pull a fast one on us.

The transport picked her up at 2pm and dad went over with her.  I went home and met up with him at her new place at about 5:30pm.  He wasn't very happy.  The change hasn't gone smoothly so far and the bedside manner is leaving much to be desired.  I called him this morning, and he seems much calmer - but getting tired of hearing that they don't have her chart or doctor's orders to continue her care in a seamless manner.  It's quite a hopeless feeling and I hope to have a better report the next time I write.  If I don't, you know I will be raising some hell.

Please pray that it's all in our head and that she is in the best possible place she can be.  The most important thing right now is her rehabilitation, but her comfort is important too.

xox,
Tommy

Day 23...

Mom will be transported to the LTACH we chose this afternoon - in just about two hours.

The facility is near Sloan's Lake in Denver. I don't know how long it will take her to get set up and ready for visiting, but visitors are allowed. Please contact me if you plan on stopping by and I will give you information when I get it.

xox,
Tommy

Kisses...

And... she blew me a kiss last night! ;)

Next steps...

I guess I was right about mom getting her strength back.  JJ said that when she worked with the Physical Therapist yesterday, she was able to walk about 100 feet with the aid of a walker.

Her vitals are stable.  Low grade fever comes and goes, and her bloodpressure has gone up a few times in the last day too.  However, the doctors sound like they are ready to see about discharging her. 

A discharge from Swedish doesn't mean she'll go home and she won't be going to the type of rehab facility we were originally told to look at either.  They've asked us to visit some local LTACH's (see previous post) which is pretty much a hospital.  They will be able to focus on a rehab program with her using Physical, Occupational, Speech and Respiratory Therapy.  At the same time, they can closely monitor her (especially for the pneumonia which she still has which is causing breathing problems for her) and complete xrays, scans and other labs that might still be needed at this stage in her recovery.

Her OB surgeon came by and said that her hysterectomy is healing well.  Her neurologist came by and didn't have much to say, just waiting for her hospitalist to make the call.

So we're just waiting to see what happens... But it looks like this is our last weekend at Swedish Hospital.

BTW - I washed her hair for her today.  It made us both happy :)

Oh, her Physical Therapist is here!  I finally get to see her work out!

Long Term Acute Care Hospital (LTACH)

Long Term Acute Care Hospital (LTACH)

LTACH's are focused on patients with serious medical problems that require intense, special treatment for a long time (usually about 20-30 days). These patients often transfer from Intensive Care units in traditional hospitals. It would not be unusual for a LTACH patient to need ventilator or other life support medical assistance.

For more information on LTACH's click here.

Getting her strength back...

Mom had respiratory therapy last night (she has it up to four times a day) and was quite successful in getting some of that gunk out of her chest and throat. She still sounds raspy though and it's hard not to think of how miserable it must make her.

This morning she was trying to tell us she wanted something and we couldn't figure it out. We wanted her to turn on her side, to give her some movement - and before we knew it, she was sitting straight up. I hate not knowing what she wants. Not knowing how to make her comfortable. But it was really good to see her get some of her strength back. And she was still making new sounds. No words yet, but definitely some new sounds.

The OB techs were really great with me and my dad last night too. (Techs take vitals and assist the nurses). The room is about half the size of the one she had on the 7th floor, but somehow they managed to put two recliners in for us.

Out of ICU...

Mom did fine with the restart of her feeding tube and her vitals stabilized so they gave the order to move her out of ICU about noon.

Her OB surgeon requested she be placed on the OB floor and we're just now getting settled in a room. It doesn't have quite the critical care feel that the neuro floor did, but I guess I'm just partial to the crew up there. We've spent a lot of time with them.

Off the Ventilator

They have removed the ventilator and she is doing fine on her oxygen levels, - although they have increased her "nasal canula" (lil tubes that feed through her nose) to 6 liters.

She's had a slight fever since they started the weening.

She still seems sedated but wakes up to look around and when she is in pain.

She'll probably move out of the ICU tomorrow.

Post-Op Update

Mom came out of surgery close to 10am. We didn't get to talk to Dr. Guber who did the biopsy of the lymph node in her chest via mediastinoscopy, but we were told it came back positive for cancer.

Her OB doctor, Dr. Schmidt, ended up performing a full abdominal hysterectomy. I can't remember her exact wording, but it sounded as if the tumor there might have been pre-cancerous.

The anesthesiologist recommended leaving her ventilator in due to previous complications with pneumonia and oxygen levels. After surgery, she was taken directly to ICU for recovery.

Since she's been here, her vitals have been good. She is under sedation and restraints so that she doesn't try to remove the tube. She has started moving her hands a bit.

The ICU pulmonologist, Dr. Wink just came in and listened to her chest and cleared her to begin "weening" from the ventilator as long as a chest X-ray comes back okay. We're waiting on that. I'll update again tonight.

Thanks for your thoughts and prayers!

xox,
Tommy

Mediastinoscopy

Mediastinoscopy

During this procedure, a tube is passed through a small incision at the base of the neck while the patient is under anesthesia. This allows doctors to take a biopsy of the lymph nodes in the chest. A surgeon can then define the tumor stage and determine whether surgery is an option.

To see more procedures click here.

Inferior Vena Cava Filter Placement and Removal

In an inferior vena cava filter placement procedure, interventional radiologists use image guidance to place a filter in the inferior vena cava(IVC), the large vein in the abdomen that returns blood from the lower body to the heart.

Blood clots that develop in the veins of the leg or pelvis, a condition called deep vein thrombosis (DVT), occasionally break up and large pieces of the clot can travel to the lungs. An IVC filter traps large clot fragments and prevents them from traveling through the vena cava vein to the heart and lungs, where they could cause severe complications or even death.

Until recently, IVC filters were available only as permanently implanted devices. Newer filters, called optionally retrievable filters, may be left in place permanently or have the option to be removed from the blood vessel later. This removal may be performed when the risk of clot travelling to the lung has passed. Removal of an IVC filter eliminates any long term risks of having the filter in place. It does not address the cause of the deep vein thrombosis or coagulation. Your referring physician will determine if blood thinners are still necessary.

To read more about it visit: http://www.radiologyinfo.org/mobile/en/info.cfm?pg=VenaCavaFilter

Biopsy Rescheduled...

I'm back... from San Diego.  Got in about 8:30 last night and made it to the hospital around 10pm.  Mom had just got up to use the restroom, so I didn't have to wake her to say 'hi' before she went back to sleep. 

Dad and JJ gave me some information on the past couple of days and I read over the notes everyone took turns taking as they visited.  For the most part, things seemed pretty consistant;

• Blood Pressure: Good
• Oxygen: Good
• Sugar: Mostly high, but that was expected.  They added a long lasting type of insulin shot to her medication list.
• Temperature: Low grade fever coming and going.  Not above 100 degrees.
• Pain: Still consistant, but she was going longer periods of time before needing the next dose... From 4 hours to about 6 hours.

Some of the notes I wasn't sure of - doctor noticed swelling in the left leg.  I have to ask about that.

Some I had been filled in about over the phone.  The one I mentioned in my last post was about the blood clot.  Mom was feeling pain in her right leg and unable to place any weight on it when she tried to stand up.  An xray revealed that there was a blood clot.  The hospitalist doctor consulted with her neuro doctor and decided to place her on a low-dose of IV administered Heparin.  In addition, they inserted a filter in her carotid artery to "catch" the clot should it try to travel up to her brain.  I don't have many details on it except for what I have tried to Google.  I'd rather get more information from her doctor...

She's been working with her therapists (speech, physical and occupational) and had some ice cubes a few days ago.  Dad thought she did well, but they haven't introduced and liquids or purees back into her diet yet.

I feel like I've been gone for weeks.  Mom looked weaker to me, but I also came in very late.  With working through the day, I haven't got to see her at her most alert hours.  But I've heard she does good and is very responsive and even watched a movie with the boys a day or two ago.

When I told her I was leaving this morning, she puckered up to give me a kiss right away (usually I have to bug her for one) and she lifted her arm to give me a hug.  She tried to say something to me and I've noticed (in talking to her on the phone and from what the family says) that she is making more sounds.  More than "ya ya ya". 

I guess since her fever hasn't been over 100 degrees for several days, they have scheduled her biopsy for tomorrow morning at 7:30am.  At that time they will also perform surgery to remove the cyst on her ovary.

Thanks for all your thoughts and prayers for mom.

xox,
Tommy

Another consult...

I heard mom had a good day yesterday. But that damn fever is still there, although it's called "low grade".

Just talked to my dad this morning and he said that she was complaining of her right leg hurting. They took her down for a scan - an ultrasound I think - and found a blood clot. Dr. Halmark is going to consult her neurologist to see if he can treat with blood thinners or if that will cause complications. Waiting to hear back on that.

Please pray that this is able to be treated without complication.

xox,
Tommy

*Whew*

So I am in San Diego and it's 10:30pm here...

I just called dad and he said that she had a really good night. Her fever finally broke. He said that she was doing her hand excercises and laughing with Denise and in general good humor.

JJ said that she said "Mario" and then "JJ" and I said "No she didn't!"

Quick update...

I didn't get to spend much time with mom yesterday, but I heard that there was not much to report. She was released from the ICU in the afternoon, but they didn't have a room for her right away. They actually moved her to a different ICU room. And then at 2am, finally moved her back up to the 7th floor.

She worked with one of her therapists yesterday and they gave her some excercises to clasp her hands together and bend at her elbows. She was supposed to do that excercise four times a day and when JJ asked her to try it, she gave him a dirty look. That's what he said at least...

She slept well through the night and did good with the transition to her new room. Her new nurse responded quickly when she started to be in pain again, and took care of me too (warm blankets and a recliner). I left at 6:30am and told her that if she did good today I would go ahead and take a trip I had planned to San Diego this weekend. She shook her head no.

I'm in a rush, but want you to know she is doing ok. She has had a low grade fever come and go since she was taken to ICU and they are concerned enough about it to bring another specialist in to do smoe tests. I'll let you know when I hear more.

xox,
Tommy

An elephant in the room...

When we got to the new room, there was a little elephant made out of towels on her tray. I pointed it out to mom and she laughed. It was a relief to see her get some of her spirit back so quickly.

She rested well through the night. Since she was in ICU dad stayed the first half and I went in the second. By the time I got in there, her nurse (Kelly) said that she had been able to take her oxygen mask off and reduce her back to 2 liters. She placed the monitor on her ear and said she was able to get a better reading. This was good because not five minutes earlier, mom was asking me to take the one that was taped to her finger off.

Shift change brought in "Bob" who was very stealth like and I almost didn't wake up when he came in to check her vitals. Almost. She was showing signs of a low grade fever - about 99. I asked for an ice pack to put behind her neck and when he brought it in, he gave it to me and said "I'll let you do this, since you know what she wants." As he passed it over the bed to me, mom lifted her head and he laughed saying "well, she knows." He laughed again when mom gave a refreshing "ah" as she laid her head down on it. She was given more pain killers at about 4am and was resting well when I left at 6:30am.

Both Kelly and Bob think that she will probably be moved back to a private room some time today. Dad said he will update me with any news.

Thanks for all your prayers and notes of support.

xox,

Tommy

(ABG) Arterial blood gas analysis

(ABG) Arterial blood gas analysis

This blood test measures how well your lungs are bringing oxygen into your blood and removing carbon dioxide.

Back in ICU...

After I left, I heard that she worked with the Physical Therapist. She was putting lotion on her legs, even with her right hand. She lifted her right leg all the way up to pull her sock off. And then the Physical Therapist asked her to put them back on. I guess mom was not happy about that. She put the left one on quickly and the right one was a little bit harder. She was getting tired, especially on the right side - but she still did it. Then she asked her if she was ready to lay down. Mom definitely was, and was already reclining when the PT said "Wait! Give me a high five!" Mom did (with her right hand), lifting her hand up to her shoulder level. She needed a little help straightening her fingers out, but it was definitely progress.

Five minutes later, her Speech Therapist walked in. Mom refused, shaking her head. She was exhausted from the PT workout.

About 15 minutes later, they took her down to prep for surgery, which started at 3. Her nurse came in and told my dad, not to be surprised if she was taken to ICU after the procedure. I wrote a previous post with the details I had received about the surgery briefing. I'm told they also took an xray to make sure she didn't have a collapsed lung.

So when I got here about 5:30pm, she had just been brought up to her room from the surgical recovery area. She was in a fit of pain and fever, with high blood pressure and low oxygen levels. The nurse came in and was really concerned about her breathing. They had to bring her oxygen up from 4 liters to 15 liters (huge increase) to keep her levels above 90, and even at that, it had been dipping. Her fever was over 102 and her blood pressure was over 200. The nurse called in help immediately and quickly put an oxygen mask on her. They administered Tylenol to break her fever. They also gave her blood pressure medication and a series of meds for stomach pains.

Dr. Warner, an ICU pulmologist was called (same one who saw her in the ER and ICU when we arrived) and she assured us that her lungs were not collapsed. She ordered an ABG blood test to double check oxygen immediately and also send out for cultures to check for bacterial infections. The ABG came back quickly, and she said actually it showed better levels than the room monitor and comforted us a bit by saying that the test should be a more accurate reading. Nevertheless, the whole situation was cause enough to put her back into ICU. She will need more frequent monitoring and the ratio of nurse/patients will allow that. She'll also have access to an ICU pulmologist, which is important to all of us. Better safe than sorry and I think we're all happy she's been moved.

Dr. Warner retouched on the fact that the mass was scraped during the bronchoscopy which caused bleeding. Without having to try to repeat her explanation, she did say that it's not unusual for oxygen levels to decrease when this happens and it will eventually work itself back as the body heals. However, there is also a slight chance that mom may need a blood transfusion. The ABG blood test will indicate that.

Another concern is that they had to pump fluids into her lungs to do the procedure and since she is still not able to cough productively, it's - well it's not good. I'm not sure if they said there is a way to pump it out - it was getting really crazy in the room at that time.

Well, here we are back in ICU. I'm not saying that it's not serious, because it is - but I'm relieved that by the time we got her to her new room, she seemd a bit more relaxed, her fever had broke and she was more responsive to us. She still has the oxygen mask on and I guess it's just another waiting game now.

Please continue to pray.

xox,
Tommy

PET Scan

Positron emission tomography (PET) scan

A PET scan (positron emission tomography) is an imaging test that can help reveal how your tissues and organs are functioning. To show this chemical activity, a small amount of radioactive material must enter your body.

The precise type of radioactive material, and its delivery method, depends on which organ or tissue is being studied by the PET scan. The radioactive material may be injected into a vein, inhaled or swallowed.

More radioactive material accumulates in areas that have higher levels of chemical activity. This often corresponds to areas of disease and shows up as brighter spots on the PET scan. A PET scan is useful in evaluating a variety of conditions — including neurological problems, heart disease and cancer.

To read more about it, click here.

Procedure Report...

Just got a call from Mondo, and mom's bronchoscopy is done. The doctor explained that the scope needed to go down her throat and then 180 degrees back up into her lungs and it didn't do so easily. There was some bleeding which they coated with ??? and he was not worried about her recovery from the procedure. They were able to "brush" the mass and have sent the collections out for labs. He's not sure if they will be able to tell anything from it. I guess he didn't mention anything about being able to see if there was blockage either. At least Mondo didn't have that understanding. Results will take a couple of days.

I forgot to mention, the OB Oncologist came in yesterday and said that she would sway to the side of believing the cyst they found on mom's ovary is not cancerous. She mentioned that the area wasn't "hot" on the PET scan, but said she would order some blood labs to see if she can get more information. Again, she doesn't think mom is a candidate for any type of surgery biopsy yet.

By the way, when I stopped by for lunch, I heard mom had been having a pretty good day and had sat up for about an hour in her chair. Mondo said she was watching tv and laughed pretty hard at all the appropriate times. Wonder what she was watching?? When I came in I asked if she was going to work with her speech therapist and she gave me a face that said "No" and laughed. I told her she had to get on that if she wanted to get her voice back and asked her if she would practice singing happy birthday with me. This is one of the things the speech therapist practices with her. She opened her mouth and bobbed her head to the tune, and even though she didn't say the words clearly - she did sing (kind of hum) to me. Made us all so happy. Mondo is excited to hear her tomorrow.

Bronchoscopy

Bronchoscopy

A flexible tube is passed down the nose or mouth to look inside the lungs and remove a tissue sample for examination by the pathologist.

To see more procedures click here.

Bronchoscopy today...

Yesterday I got to the hospital just after 5pm and mom was still out, as in sleeping. JJ had to leave at 3:30 and dad was alone. I hate leaving dad alone at the hospital. It's really bothering him when he can't figure out what she wants and it looked like maybe she had been trying to tell him something and she got mad when he didn't know what it was. It's a hard thing. I can only compare it to having a baby and not being able to comfort them. You just try and try one thing after another and hope that one of those things you try will give them comfort. Are you in pain? Do you have to use the bathroom? Are you hot? Are you cold? Do you want your blanket? Do you want an ice pack? Do you want a pillow under your legs? Do you want the music off? I don't have to think so hard about the questions anymore. I told him, "Just wait 'til she gets her energy and strength back and can really get mad at us."

And it wasn't just dad. He said that when the speech therapist came in, she refused to work with her and even started crying. But when another therapist came in (can't remember if it was occupational or respiratory) she was good to go. She wasn't full force on the OT, and didn't have the energy to stand up, but she sat on the side of her bed to do some excersises.

Oh yeah, in yesterday's post I forgot to mention that the results of the lab on her PEG incision came back negative. All of the labs and tests done to find the root cause of her stomach issues have (so far) been negative. In a way, it's a good thing. It means she doesn't have an infection. But it also means, we don't know the reason :(

Last night mom had another fever. Nurse Shelly said that they hadn't given her percocet as they were trying to "test" to see if the Tylenol was working on her headache (percocet contains Tylenol). It appears to be, so they administered some to her and her fever did break. She slept until about 5am when she had to use the bathroom. She came out in pain (but it didn't seem like the same stomach pain she was having before) and it was time for her to get some more medication, so they gave her some. She fell asleep pretty quickly, but looked tense. I left at 6:30 this morning and she felt a bit clammy. Dad said her last stat check at 8am came back with a slight fever, about 99, but he also said she seems to be resting more comfortable.

Dad told me that a few doctors had already come by. The neurologist checked her reflexes and said they were looking good. The pulmonologist said that he had spoke to her hospitalist (Dr. Halmark) and that they have decided to do a bronchoscopy. That is scheduled for 3pm today. He had to sign a consent form because they will be using anesthesia, but it's not considered a surgery so the fevers should not affect it. The hope is that they will be able to find out if there is an obstruction, but they can possibly get a biopsy as well.

Please pray for a good day.

xox,
Tommy

<<<Sigh>>> Just breathe...

Sorry this is coming out so late.  Came in to work today and been having lots-o-fun catching up...

Yesterday:
Mom's afternoon and evening continued to go okay.  Her fever did come back, but only for a short time before it broke again.  She has been on strong pain relief medication - dilaudid and percocet - since her stomach pain returned.  These pretty much knock her out and she seems to rest comfortably, occasionally looking up to see who is in the room.

Mario stayed with dad last night and told me he would call or text if there was anything concerning going on, and would just keep track if things were okay.  I was thankful not to hear from him for that reason.  I returned to the hospital for a quick visit this morning before work and he confirmed that all her stats were good through the night (BP, Temp, Oxygen and Blood sugar).  The blood sugar was probably okay because they stopped her feeding tube, which they also had some complications with.  It kept stopping (and beeping), so they switched it out.  They also changed her IV.  The one she had was in the bend of her right arm and she wouldn't keep it straight.  Not necessarily because she was moving it for comfort, but because it was reflexing back up towards her chest.  I don't understand an IV in the crease of your arm anyway - they hurt there.

They started a respitory therapy and she will be getting four treatments a day that involve massaging her chest and administering an nebulizer treatment.  They are hoping to break up the "yuck" in her chest that she has not been able to cough up. 

Today:
I went to visit mom and take dad something to eat during my lunch hour.  Mondo took him breakfast and JJ had been there with him through the morning.  It sounds like her stats were still good and she is still "out of it" and resting well.  The floor doctors doing rounds came by and noted that she has a cyst on her ovary, but apparently didn't sound concerned about it.

Her nurse let them know that they would be changing back to the original food and trying some other medication.  When I got there, they were changing that out and she had just finished a respiratory treatment.  

Dr. Halmark (her hospitalist taking over for Dr. Acosta) came by just as I was leaving.  I'm sorry that this part won't be as clear as I would like it to be, but I'll do my best...

He said that the last xray showed that the pneumonia was getting worse.  I'm not sure which xray he was referring to because her pulmonologist had just been in and hadn't mentioned it.  He said she might get another xray in a day or two.  I'm really mad at myself for not asking more on that, but I'm confused now because as far as I had heard, her last xray was "better" but not great.  There is concern that the mass may be causing a blockage that will not allow mom to expel the crap she needs to get out of her lungs.  They might have to do some sort of bronchial scope (surgical) to check on it.  He said they may be able to biopsy during the procedure if it's decided this needs to be done.

He talked about the changes that were being made regarding the cramping in her stomach.  Her food will be changed and administered at half the usual amount and increased as tolerated.  She will be taken off of one of her antibiotics that is known to cause stomach irritation.  She will be given Immodium and the pain relievers will continue as long as she is having the severe cramping.

Dr. Halmark also mentioned the newly found cyst on her ovary.  He sounded a bit more cautious about it and suggested that if we plan to treat her cancer, we have this looked at by an OB Oncologist.  We do plan to treat her cancer as soon as she can tollerate it and so he is getting that into the works now.  He did mention that it's unusual for this type of cyst to be found in a women mom's age and that in general, ovarian cancer usually shows multiple tumors on the ovary.  They've only found one. 

Discussion with all of her doctors is consistant with saying she needs to be stable without fever for a period of time in order to perform the biopsy.  For the time being, we just don't know when that will happen.  Honestly, my first priority (I think all of ours) is to get her well enough to start rehabilition from the effects of the stroke.

Well, I'm off work now so I will be heading back to the hospital.  Hope you all are well.

xox,
Tommy