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

Aphasia

Aphasia is a condition that robs you of the ability to communicate. Aphasia can affect your ability to express and understand language, both verbal and written. The amount of disability depends on the location and the severity of the brain damage that is the cause.

Aphasia typically occurs suddenly, after a stroke or a head injury. But it can also come on gradually, from a slowly growing brain tumor or a degenerative disease.

Once the underlying cause has been treated, the primary treatment for aphasia is speech therapy that focuses on relearning and practicing language skills and using alternative or supplementary communication methods. Family members often participate in the therapy process and function as communication partners of the person with aphasia.

Mom has aphasia. To read more about it, click here.

Rollercoaster...

Yesterday was pretty great - comparatively...

The steroid they had been giving her was not, it turns out, to treat swelling in the mass. It was to treat the possibility of sepsis. Dr. Acosta discontinued the order as mom's blood tests came back negative.

Her blood sugar has been high and they have started to give her insulin when it reaches a certain point. They did say that the food they feed her through the PEG is high in sugar, so it's not unusual. I think I may have already mentioned this.

The pain medication they gave her seemed to ease her into a nice rest. When Mondo and Kelly came in she seemed in much better spirits. Around noon, Jess and Nikkita stopped by. I was telling them how she wiggled her toes for Dr. Acosta (first time) and lifted her right hand. Jess asked "grandma, can you lift your arm" and she almost flew away. She lifted both arms to show him, in a kind of flapping up and down way. She lifted both up past her shoulders. First time for that too. We were all very excited and she was excited to show us. When the nurses came in to check on her and asked her how she was doing - she did it again. Show off! :) She looked at Nikkita and said "ya ya ya". I said "I think she might be asking about the kids". Nikkita told her that they went back to Alamosa and mom made a sad face and said "Ohhhh".

Anyhow, she felt so good that she let us know she wanted to get up and out of bed and sit on her chair. We talked to her and she laughed a lot with us. She seemed to comprehend a lot of what we were saying. However, she tried to join in the conversation, and all she could say was "ya ya ya" and it made her a bit sad. We told her that she would get her words back, it's just going to take time.

She stayed in her chair for over an hour and got pretty tired out. And then of course, the Speech Therapist came in and wanted to work with her. I didn't stay in the room, but was told they hooked up electronic stimulation "thingamabobs" to work with her muscles in her face and throat. Also;

• she noted that mom was recognizing and understanding a lot more of what was going on and being said to her
• she was able to make the "ah" and "oh" vowel sounds
• the way she "smacks" her lips is good
• they worked on making "clicking" sounds with her tongue
• she brushed her teeth on her own

and during the session, she got up and walked to the bathroom using her own strength. Huge accomplishment as she has only been able to stand up for minutes at a time with assistance. She ended with a swallow test having some ice cream.

The Occupational Therapist came in afterwards and worked on arm and hand excercises with her, mostly having her reach for her (the OT's) hand. She also stood up with her.

Mom slept through the night pretty well. So did I thanks to Lindsey (her nurse) who brought in a cot. Dad and I each got up a couple of times to suction her mouth after a few good coughs, but all seemed well until about 5:45am.

Even though she can only say "ya ya ya" clearly at this point, she says it at different tones and speeds, and it could totally be my imagination, but she seems to indicate a level of urgency. I got up as soon as I heard her, wondering if she had been stirring prior to that, and if so, for how long. She looked uncomfortable and her pleading eyes told me she was in pain. The stomach pains she was experiencing a few days ago returned.

Lindsey worked over two hours with her, way past her shift time. She did give her pain killers which helped a bit. She recommended the doctor order a CT of her abdomen to find the source of pain. He did. He said it could be caused by a number of reasons, but he did not think it was a complication of the surgery of the PEG. Just to be sure, the nurses swabbed the area of the incision and sent it in for labs. Better safe than sorry. In addition to all that, her bloodpressure was up to 220/? and her temp was over 102 so they ordered more blood labs to test for sepsis once again.

Mom went down for her CT scan at 8am. She got back close to 9 and was still not feeling well. The painkillers wearing off sooner than I had thought they would. Her new shift nurse gave her some more (she really needed them). In the mix of it all, during an IV change, she bled on her bed. Lindsey told us about it so that we wouldn't freak out, but she didn't tell Shelly (the new nurse). Shelly kinda freaked out. It was a little funny, but not so much just because of the way the day was going. Well, mom got a good bath and her hair washed out of it. She was so much more relaxed after it.

Okay, just took break to comb mom's hair and stuff kept coming up...

• CT was inconclusive so they've ordered an ultrasound
• her fever has broke and her bloodpressure is back to normal
• when she wakes, she smiles and responds to people
• she had a session with the Speech Therapist and she was pretty groggy through it, but did "ok"
• the nutritionist will start her feeding again after the ultrasound. (she thinks that her current food Osmolite is probably not causing her pain).

She's sleeping well right now. Thank God.

xox,

Tommy

Knowing looks...

Last night I got back from the Mammoth game at about 11pm. I was told that everything went fine through her evening and that they started her on a new steroid medication. This should reduce the swelling in the mass in her lungs. They also gave her a prescription medication to rinse her mouth out so that she doesn't get an infection. I'm relieved about that because although we are constantly rinsing and sponging out her mouth, she isn't taking any fluids orally to combat the dryness.

Through the night she did well and seemed much more comfortable than the two previous. No fever, no high blood pressure readings and her oxygen levels were good.

At 4am when she could have taken percocet, the nurse and I discussed her state and how she only appeard mildy uncomfortable, so decided to only give her Tylenol and see how that worked. She slept fine until about 7:15am when she needed to use the restroom. After she was back in bed, she didn't seem to be doing as well and started to get fidgety. When I couldn't make her comfortable, I called the nurse. It was about 8:30am. It took so long for them to respond, I called again.

The new shift nurse came in and started asking mom to rate her headache pain from 1-10 and of course, all mom could do was say "ya ya ya" with pleading eyes. I told the nurse that mom hadn't been able to communicate that clearly since she'd been here. When the nurse asked mom to show her where it hurt, mom used her right hand to motion to her belly. She wanted to give her Tylenol and see how she did, but I told her that my observation was that it was more than a headache and I would rather her give her the painkillers now. She said okay, but holy cow she was slow. I was getting pretty upset and I think my mom was too. The nurse, as I said, was working slowly and she walked out twice and both times as soon as mom saw her walk out, she looked at me knowingly as if to say WTF?! It would have been funny if she wasn't in so much pain, but she clearly did not approve of the time it was taking for it to be handled!

I'm not knocking the nurse yet. She seemed thorough and I had actually been telling dad this morning that I didn't want them to continually give her percocet if she didn't need it and it was just going to knock her out the whole time.

So mom is sleeping now.

Oh yeah, for those of you worried about my dad... He is getting some sleep at night. The couch in here isn't so bad, but Tina likes to keep the room COLD! so we bundle up quite a bit. He's been pretty good about letting us take him out of the hospital close to once a day too. This morning, he actually agreed to let my godson Adrian pick him up and take him to my godson Mateo's wrestling match.

Well, again. Not much to say. Hopeful for another good day.

xox,
Tommy

Potassium - ouch!

I didn't update last night because yesterday was fairly uneventful - Thank God...


Mom did have physical therapy in the morning. She wasn't able to get out of bed, but she did do some leg and arm excercises while lying down. And then she sat at the side of her bed and did some more leg motion excercise.


All visitors left early last night (which gave me some time to sleep before "relieving" dad at midnight"). About 11:30pm the nurse came in and said she would be giving her a potassium and magnesium drip. Hearing the word potassium woke me up. I've had that drip before and remember it being kind of painful causing a burning sensation at my IV site. Within about fifteen minutes, she started complaining that it was hurting. The nurse was able to slow the drip so it didn't seem to cause as much pain - but it bothered her enough to keep her awake. She finally finished it and then had stat checks and such that kept her up until after 4am, when she finally fell asleep.


About 6:30am they gave her a painkiller and she slept until they checked stats again at 8am. Through the night her temperature and oxygen levels were good, but her sugar level went up enough that they gave her insulin. The nurse said that's normal with the PEG feeding and shouldn't be permanent. In relation to that, she seems to be taking food through her PEG well and hasn't had the bad cramping in her stomach. Praying for that to continue because the cramping was so very painful for her.


Today she got an xray and a bath :)


The xray results are good, but doc said it will take time to see how the pneumonia is progressing. She's resting well and pretty much only wakes up to see who is visiting and give a smile.


Sorry for the late post, but glad there isn't anything too concerning to add to her condition. We're hoping for continued rest this weekend to prepare her for the biopsy next week.


xox,
Tommy

Some complications...

Just minutes after my brother JJ's family left and I posted the blog about the biopsy, the nurse came in and told us that the xray showed signed of pneumonia in her right lung. She said that they really need to keep an eye out on her oxygen levels, but they were good at the time. (They need to stay above 90). She was put on antibiotics and we're praying that those do the trick.

At about midnight, during her vital stats check, they found her with a fever of 101.1. Blood tests and a urinalysis were ordered to check for a bacterial infection. She was again restless and in pain while waiting for the tests to be taken. As soon as they were, they gave her some more pain medication and Tylenol for her headache.

She did sleep, but not well.

This morning, her blood pressure, oxygen and temperature were all good. She was still very tired but looked much better than last night.

Dr. Gruber (surgeon) came in and discussed her biopsy. He thinks that it's best to let her recover through the pneumonia and maybe try on Monday. We agreed.

Dr. Pratt (neurologist) came in and basically went over the same thing.

Dr. Acosta (hospital doctor) came in and discussed her tests. The blood tests will take up to 72 hours for results, but meanwhile, they are treating with antibiotics. She has a bladder infection and that could be causing the fever as well as some of her pain. The CT scan from yesterday showed stable results. A bit of good news in this overwhelming day.

As of right now, her fever has come back up (100.1) and her blood pressure is coming up too. Oxygen is good. Basically, the plan (at the moment) is to let her rest and recover over the weekend and see if she is strong enough to withstand the biopsy surgery. She also started a feeding through her PEG. It's going to be a small "meal" to see how she reacts, especially with how she's been experiencing stomach aches.

Not sure how to ask this, but if you would like to visit this weekend, we would appreciate "quiet visits" with minimal conversation in her room and kids to join us in the conference room while you see her. And if you do visit, please sign her guestbook.

We really appreciate your love and support and prayers.

xox,
Tommy

Pneumonia

Mom's nurse just came in and notified us that mom has pneumonia in her right lung. She said her oxygen levels are good and that's a good thing - they need to stay good.

Please please please pray that the antibiotics work and that it doesn't get worse. Please.

Biopsy scheduled...

Mom stood up twice today during physical therapy this morning. She needs to work a lot on the strength on her right side, but the therapist thinks she did well.

She had a lot of company in the mid-day when Mondo and I left to check out some rehabilitation centers. That didn't go as well as we had hoped. The facility we visited looked really nice, but we were told that most centers will not accept patients who are receiving chemotherapy or radiation treatments. We don't even know what her care plan will be in regard to cancer, so it's like another waiting game. There are a lot of other factors that are adding to the complication of selecting the place. I wish I had a genie who knew everyone to contact and every question to ask so that we would have the information we need to make this decision. It's a mess and we'll try to hit it up again tomorrow. Hopefully with some sort of advocates help.

When we got back to the hospital, mom was still out of her room getting her CT scan and then her PEG. She came back up about 3:30pm and was in a lot of discomfort and pain. We were told she had to lay down until 4:30pm and wouldn't be able to get pain medication until then. Just about that time I let her nurse know that she was not laying still and talked about her obvious discomfort. We left the room for a time so that she could use the restroom and the nurses could assess any issues. We came back at about 5pm and whatever they gave her for pain (found out later it was percocet) seemed to do the trick. She rested well until about 9pm when my nephew Jessie came in from Las Vegas. She woke up and gave him the biggest smile I've seen from her today. However, she was still too drowsy and uncomfortable to socialize and quickly went back to sleep.

We spoke to the surgeon who is going to do the biopsy and he said he will meet with us tomorrow morning to make sure she's okay to go through with it. If she is in as much pain as she was this evening, he may postpone it. We also met with the anesthesiologist who did an intake of her medical history and they just came in and did a chest xray. If everything looks okay in the morning, the surgery is scheduled for 10am. She probably won't be back to her room until 1pm and her afternoon and evening should be pretty quiet so that she can rest and recover.

Please pray for a restful night to prepare her for a safe and sucessful surgery.

xox,
Tommy

Night report...

Mario's report:

Mom had another restless night up until about 3am. Her stomach ache kept bothering her and her headache has been pretty consistant.

At about 10pm, they came in and gave her an ultrasound on her left side around her arm and neck. We're told that they probably ordered it because of bruising or swelling in the area. The results showed a superficial clot near her elbow. At about 3am they administered a blood thinner called Lovenox. The doctor does not feel like this is a major concern.

Mom got up three times during the night to try to use the restroom. She was able to communicate (still without speaking) that that was what she wanted to do. She got up two more times in the morning to use the restroom. I consider this an indication of progress in communication and timing, but the frustration level is still there at times when we don't understand her. Mario mentioned that there was a moment when he is sure he didn't understand what she wanted and he asked "should I turn off the tv?" and she finally just said "yes" in what seemed like resignation at his incompetence. (hahaha)

Because her headaches are returning consistantly every 3 hours and Tylenol can only be adminsitered every 4 hours, she has been schedule for another brain CT. They want to make sure there is no more bleeding and just see if there is any other concerning reason for the headaches.

We were told that mom aspirated when eating, which can lead to pneumonia and because of this, she won't be able to continue eating the puree diet she tried last night. The Lovenox was stopped this morning in order to prepare her to receive a PEG. (Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall to provide a means of feeding when oral intake is not adequate.) The nasal feeding tube will be replaced when the PEG is inserted successfully. This procedure is scheduled for 2pm. The plus side of the PEG is that;

1. it should be more comfortable than the nasal tube
2. she can use it as a supplement to gradually build up capability when she is able to try again to eat food orally
3. the tube can be removed easily and should heal without issue or another required procedure

We went ahead and confirmed again that we want the surgical biopsy on the tracheal mass. Not sure if that can be done today, but hopefully. Pathology results will take two days, but should be able to give us type of cancer and staging.

I have to run. Probably missed something, but will update again tonight.

xox,

Tommy

Pardon my language...

I don't even know how to begin this. Trying not to be angry. Trying not to be frustrated. Trying not to cry. I want to stay as positive as I can because I know that that is the best thing for mom. But it's hard. I want to scream.

Dad talked to Dr. Acosta this afternoon and he is sure that mom has cancer. I thought I had prepared myself to hear that confirmation. I've been telling myself that since they found the mass - they really didn't give us much hope that it wasn't. But hearing it said like that is a whole different story.

I got to the hospital around noon and found dad in the hallway. He asked if I had heard from my brother JJ. I hadn't. "Is there something else? What's wrong?" Dad could barely tell me, but it turns out the hopeful results Mondo was given about the PET scan this morning were wrong. They discovered another mass near her trachea. Saying I feel like someone knocked the wind out of me is putting it as mildly as I can... but same effect, I can hardly breath. I feel sick.

This news changes the type of biopsy they had initially planned. Instead of a fine needle they will have to do a surgical biopsy. They will take a sample from the new mass and if it is positive for cancer, it's... well it will be very sad news. If the cancer is contained within the lungs, there is a posibility of surgery to remove it and and of "curing" it. If the cancer has spread to the lymphatic system or any other organ, then mom will no longer be a candidate for surgery.

The information we got was a bit more detailed than this, but I'm just not ready to go there. Things we've been told by one doctor or nurse has changed with the telling by a different doctor or nurse one too many times. This time they said the biopsy will be tomorrow. An OR had to be scheduled. Not sure when we'll get the results.

However, I will say this... FUCK CANCER! I want to scream it up and down all day long. I want to beat the hell out of it. Sorry if I offend, but not really.

(((deep breath))) In an effort to end on a brighter note, mom's day was pretty good again. Although she still cannot speak, I think she... we, are communicating better all the time. She still gets frustrated at times, but there are also many times when she is able to let us know what she needs and wants. Her sense of humor is amazing too! She was sitting in a chair, looking at my dad and just started laughing - "hahahahaha". I look over, and my dad (who was laying on the couch) is rolling off in slow motion. She was laughing so hard at him falling on the floor! And when I walked in, I asked her if she missed me and she scrunched her nose and nodded her head NO! and then laughed!

She also had another "swallow" test today, and while she didn't pass with flying colors, they put her on a limited puree diet. She just now finished her first meal since she's been here and she seemed to really like it. She even fed herself when I put the food onto the spoon for her and held her cup to take a drink. It was awesome. Her stomach was hurting earlier today and I hope the food doesn't make it worse. She was really happy to get a real meal.

Mario and maybe Mondo are staying the night with dad. Darren really wanted to stay at our home tonight, and I promised him he could - but I think my intention was just to pick him up in the morning and take him to school. I guess my plan has changed and I will go home tonight. I don't want to leave, but I can use a good night's sleep and tomorrow we will try to visit a couple of rehabilitation centers.

Not sure how to end this either, except to say I am still hopeful. Please continue to pray.

xox,
Tommy

PET Scan results...

First, mom had another good night. She fell asleep before 8pm after a pretty exciting day. She slept well through the night with minimal fuss during nightime checks on bloodpressure, bloodraws, turning over, etc.

She woke up about 5:30am and had me lift her bed so that she could sit up a bit and "watch tv". Well, at least she nodded "yes" when I asked her if she was going to watch tv. She fell back asleep and I held her hand and laid my head down by her side. Just before 6am, she stirred a bit and I asked her if she wanted me to lower her bed. She nodded "yes" and as I pressed the button, she stopped me and put her hand on my head and lowered it back down. Then she ran her hand through my hair a couple of times and patted my head. She's still my momma.

Mondo stopped by for a bit on his way to work and took my dad some breakfast. While he was there Dr. Pratt came in. This is what I understand was said;

• Results from the PET scan: The tumor and lymph node in her lungs are active, but masses were not found anywhere else in her body.
• Biopsy: The biopsy may or may not happen today. Dr. Pratt's biggest concern about the biopsy would be bleeding, so they have taken her off blood thinners. He feels it's a relatively low risk procedure. We haven't been given a time when the procedure will take place (we do know that she cannot eat 4 hours prior to it).

Love to hear you laugh...

I didn't get to see mom until about 5pm this evening. Having to go to work was painful, but thankfully my brother Mondo got to spend the whole day here with my dad. Kelly joined them in the early afternoon and then shortly after, Mario, Karen and the kids.

The day went pretty much as Mondo laid out. They took her for her PET scan, but no results yet. Not surprising, but hopefully tomorrow.

She didn't have her swallow test with the speech therapist as far as I am aware. Hopefully that gets passed tomorrow too.

Mondo reports that mom was really excited to see my uncle Lawrence who stopped in for a quick visit. She really has not seemed to have any problem recognizing people. Karen said that she had Sophia lay down with her in bed and kept adjusting and scooting over to give Sophia more room. Once the bed alarm went off, she moved over to the chair, where Mateo told her the story of how he did on his latest wrestling tournament.

Mondo also said she made a request for paper to write on. She tried to write with her right hand, and when that didn't work, wrote with her left. She focused extremely hard on it and when she began to get frustrated, Mondo suggested she try her left hand. She did, but she worked on guiding herself with her right hand for that too.

When I came in, she let me talk to her and responded with nods and sounds that seemed to be in the positive tone anyhow. At one point I asked her "Where's dad?" and she looks right over to him sitting on the couch and makes a big shrug with her shoulders and rolls her eyes like as if to say "I don't care". I look over to my dad and he says "Are you fighting with me?" and she busts up laughing. She thought that was so funny!

She's much more comfortable this evening and not picking at her lines as much. Praying for her comfort through the night and another good day tomorrow.

xox,
Tommy

Next steps...

Mom slept well last night after 11:30pm.

Through the night, Dad and I took turns making sure she didn't try to take out her feeding tube. They had put these giant soft mittens on her to prevent that, but she got them off. She is determined. She did so well that she didn't make a huge fuss when they came in to check her bloodpressure through the night (four times) and to take blood either. She calmed easily and went back to sleep. I was so very happy for that.

I had to leave about 6:30 this morning and I told her "Momma, I've got to go. I have to go to work." and she picked up my hand and kissed it. They say she doesn't understand us and that to her, it might sound like we're speaking another language, but sometimes it's really hard for me to believe that. She definitely gives us kisses when we ask for them now and hugs too.

Mondo gave me a report on what's been going on today so far;

• She will get a PET scan today at about 1:30pm to check her whole body for any other masses.
• She should get a "fine needle biopsy" tomorrow. They'll poke her in her back under her shoulder blades for this test.
• She will take another "swallow test" today to see if she can be taken off of her feeding tube or if they will need to move it from her nose to her stomach. It sounds like the doctors think she should be able to pass this test soon.
• The doctor thinks the strength that she is exhibiting from her right side is encouraging.
• They will try to get her out of bed at least three times today.

She was also given an exam where they go in and ask her questions. They asked "Can you make a fist?" and she immediately did. They asked "Am I wearing a hat?" and she put her hand on her head. They asked her to hold up two fingers, and she made a fist again. Two out of three? It's not an exact science. Can't tell if she understands from this, but it's hopeful.

Good Day. Hard Day...

Mom started the morning well.  Bath, hair washing and getting out of bed for some juice and apple sauce.  Then she got really worked up because we didn't understand something she wanted to tell us.  It wore her out so much, she pretty much slept through her whole meeting with the speech therapist. 

The speech therapist doesn't just work with mom regarding vocalizing, she also monitors how she swallows and her ability to protect herself from ingesting into her lungs.  She didn't pass the test the therapist gave her today so they ordered a scope that would show on camera whether or not she was able to do this on her own.  She couldn't.  This evening they gave her a feeding tube so that they could give her some nutrients she needs.  The feeding tube is one more nuisance among the many she notices.  She hates her blood pressure cuff, the IV area right in the crease where her arm bends, the circulation socks she has to wear.  Hates.  Them.   She doesn't have to verbalize that to let us know.

The good thing today is that - well, there are lots of good things...

• The MRI shows that this is her first stroke.  I think that's good because she doesn't have previous damage that we didn't even know about.  The bad thing is that they haven't been able to identify the origination.  Might not ever.  Or it might be due to plaque build-up from smoking.
• She was moved out of ICU to a "regular" room.
• Since she was moved (about 4'ish), she's been regularly using her right arm.  She's twisting all over the place and re-ajusts herself with it.  The bad thing is, she's really uncomfortable and has been fidgety pretty much all evening.
• She's out of the critical "danger zone" following a stroke and is ready to move onto getting prepared for rehabilitation.
• They should be able to give her a biopsy within the next couple of days.

The hard thing is that she gets pretty upset and frustrated about not being able to tell us what she wants.  It breaks my heart.  At one point, during one instance this evening, she seemed to give up, lay down her head and tears came out of her eyes.   :(

She finally got some nutrition through her feeding tube about an hour ago.  This should take away and hunger pains she was feeling.  Her blood pressure had went up to about 220, and they received an order to put her back on her high blood pressure medication.  This might be a big reason for her discomfort.  Even a headache that she seemed to be telling us she had.  The nurse also gave her some Tylenol and took out an irritated IV on her left arm.  It's 11:30pm now and she has been asleep for about 5 minutes.  Praying that she will rest well for at least a little bit.  Counting my blessings for all the good things and that even though she's frustrated, she's aware and alert. 

Happy New Year? WTF!

Saturday, January 1st

About 2:00am: I get home from being out on New Year's Eve and mom and dad are both still up working on a puzzle.

9:45am: I dash upstairs to put a french toast casserole in the oven for brunch. I'm running late, but mom and dad are both up, working on the puzzle. Mom says "you're up early!" and I say "no, brunch is supposed to be at 10:30 and this will take an hour to cook. Guess I can move it back to 11:30."

Mom starts cleaning up the kitchen and fights with dad about what parts of the puzzle he's working on that she set up. They give a big show for my friend Claire who spent the night. I warn dad "You're brave. She's doesn't care dad. She'll kick your butt whether Claire is here or not!"

11:30am: We have brunch with my friend Claire, our neighbors Ray & Carrie and my sister Ruth. Mom is fine participating in conversation and eating.

12:30pm: Mom and Ruth go to work on the puzzle. Dad goes outside to warm up my car so that I can give my friend a ride home. Ruth yells at me from the kitchen "Tommy, get in here." I ask "What?" She says, "Get in here now!" I go into the kitchen and she's holding mom up, standing by the kitchen sink. She yells "I think mom is having a stroke! Get dad!" Dad is coming in from warming up my car and runs up the stairs. Darren runs across the street to get Ray, our neighbor who is also a fireman. Dad and I walk mom into the living room and Ruth calls 911. Mom is grunting, and her face looks like it's about to burst. She's crying. She's mad that she can't speak to us, can't tell us what is wrong. She can't make the sound come out of her mouth, but you can tell she is yelling and pleading with us. And she's crying.

Ruth's story: Mom couldn't open her high blood pressure medicine bottle, so she asked my sister to help her. She said that mom put the pill in her mouth and when she went to take a drink, the water just fell down her face and she saw the right side of her mouth droop down. Everything was immediate.

12:45pm: The ambulance was there so quickly, Ruth was still on the phone with 911 trying to collect mom's current medications. They asked the questions you ask for a stroke "Can you smile?" "Can you lift your arms?" She couldn't do either.

1:30pm: When we got to the ER they gave her something that made her drowsy and was supposed to be affective if she was having seizures. I thought it was Ativan, but can't remember. At this point they had not diagnosed her and were looking at two possibilities. A CT scan had revealed a mass in her brain and another in her lungs.

1. Seizure: Possibility that the mass in her lungs had metastasized to her brain causing seizures.
2. Stroke: Possibility that mass in her brain is a blood clot causing a stroke. Mass in her lungs needs to be diagnosed.

Testing showed the second - it was a stroke. Later they label it "acute stroke" or "medium". A "medium" stroke has a posibility of recovery back to 90%. A massive stroke, no where near that.

~2:45pm: The standard and recommended treatment for a stroke occuring within 3 hours, is a blood thinner to help release the clot. It will not be given to a patient if there's a chance the stroke is over 3 hours. Having spent the last several hours with mom, we were confident that the symptoms of her stroke started no sooner than 12:30pm. She was given Tissue Plasminogen Activator (t-PA).

Bleeding is a major side effect of t-PA. The neurologist, Dr. Pratt told us that the first hour would be the most critical, and that normally bleeding in the brain would occur within the first four hours. She would, however, be closely monitored for signs of this complication especially within the first 24 hours.

She did great the first 3 hours. Every 15 minutes a verbal and motor skills test was given to her. She kept increasing point by point. Just into the 4th hour, we're told that mom is not responding as well to the exam. She's taken for a CT. Bleeding is found in her brain, small, but concerning. 1.3cm. It takes about an hour to check her bloodtype and have a drug given to her to reverse the t-PA affect which is thinning her blood. Doctor advises, that if the t-PA is going to work, the reverse drug will not affect it. The results from that will take longer to see though - up to three months. We don't have to wait that long to see if the reversal drug works. Another CT is given to mom at 10:30pm. We wait and wait for results. They tell us "No news is good news. The radiologist needs to distribute reports in order of urgency." We don't want our results to be urgent. But we do want results. The waiting sucks.

Sunday, January 2nd

4:45am: Results are in. There is no change in the size of the bleed. The doctor said he'd be happy with this. As long as the bleeding did not grow, he feels it'll be okay. The area of the bleeding is someplace that side effects would not be apparent.

On the plus side, mom had a positive reflex test and lifted her right arm.

12:30pm Mom has an MRI to determine the origination of the stroke and to see if she has had any previous smaller strokes, which they think is probable. The MRI should also show if there is anymore bleeding in her brain. She also had a CT scan dedicated to check on the mass in her lungs. We're told they won't be able to biopsy for a while since she had the dose of blood thinner. Risk of bleeding is too great.

She's also meeting with a speech therapist. The risk of pneumonia is also a big concern. The speech therapist will evaluate her capability to swallow and to protect her lungs from ingesting liquids.