Updates!!!!

Mom is home, she came home on Saturday and is doing great!
Gram is in the hospital, she went in on Saturday and is in the ICU on a ventilator, good thoughts and prayers please.

At Potomac Valley Rehab

Mom was transferred yesterday to Potomac Valley Rehab and Nursing. She is approved for a week at a time through her insurance.

Back in the hospital

I had not posted because things were going really well. Mom was doing great at rehab, walking with a walker, starting to have a liquid diet. They actually were planning her discharge to home for the end of this week. And then on Monday she was really weak and confused. On Tuesday, she had a fever and they gave her IV antibiotics and she pulled out the IV so they sent her to Shady Grove ER. So she is now in a room in Shady Grove Hospital.
These are my notes from today so far:
8/20/09

Dr. Mathers (infectious disease doctor) came in at 12:54pm; Mom has entrococis (bacteria) in urine, some type of staph in blood; port is most likely infected- Dr. Mathers needs to speak to Interventional radiology; he thinks it will be tomorrow before Mom can get the port removed. He is also going to talk to the main doctor about Mom getting PT and clear liquids. She is going to be here for at least 7-10 days.

A nurse just came in to say that a new doctor ordered an 1800 calorie diabetic diet for her! Luckily Dad and I were here, apparently she is not longer under the care of the hospitalist but some other doctor. The nurse is going to get more information and find out if she can get the clear liquids that she had at the rehab facility.

Okay the nurse and patient advocate were both here. Apparently when I said that I wanted her under the care of the hospitalist and NOT under her old doctor's care, they chose to do the exact opposite. And her old doctor is on vacation so this random doctor who does not know her, decided to order her food! I am so pissed off right now, if Dad and I were not here, she would have eaten it and her stomach would have blown up and we would have been back to the beginning. I am honestly horrified that a random doctor would order food for her that could potentially really harm her.

I am hoping that the rehab facility will take her back whenever the infection is cleared up. She just needs to get home.

Nurse- Jessica
Patient Relations Patient Representative- Sylvia Fisher 240-826-6277 pgr 301-224-5930

Mom is at Rehab

Sorry for the long time between updates again, things were up and down this week. I am pretty sure that I posted that Mom had a port put in for her TPN. Nicole and Dad also talked to the doctors and Nicole talked to a nutritionist and they were able to alter the TPN a little bit. It seems to be helping and her memory is staying there. She has continued to talk to us on the phone and actually called us to let us know that she was going to rehab. She is right now at an acute rehab facility (which means that she is going to get more therapy than before). She was transferred to rehab yesterday. And it is near us, so that is really exciting!

Mom is doing better mentally again

She is with it mentally again. She called me this morning (it has been well over a week since I talked to her on the phone) She did not get the TPN since Wednesday or Thursday. She got PPN (partial nutrition) over the weekend. Today is her first day back on the TPN so I expect her mind to go again in a few days. Apparently there is nothing that she can take to replace the TPN, so she is going to have to be out of it until she can get off the TPN. Also the doctors don't think the TPN is causing it since all of the bloodwork is fine. They think it is just a crazy coincidence that EVERY time she is off the TPN her memory comes back. Not really sure what else we can do.
Hopefully she will be able to go to rehab in the next day or two

Mom got the port put in

Mom got the port yesterday. So hopefully this means that she will not be able to pull the TPN line out anymore. And hopefully today she will be transferred to a rehab as well.

Mom is still at Georgetown

She was admitted to Georgetown Wednesday night. They put in an IV and she pulled it out a few hours later. She got evaluated by PT and OT who were both really pleased with her progress. They think she is strong enough to go to an acute rehab facility. But we are not sure if any of the acute facilities will take TPN. She was supposed to get a port put in yesterday that would make it easier for them to put the line back in when she pulls it out. But her blood work was questionable (they thought she might have an infection) so they did not do it. They put in an IV line and were giving her fluids and PPN (we think, Dad is not sure). They also put some gloves on her that are supposed to keep her from scratching and pulling out the line. When Dad got there this morning, she had pulled out the line again, and her gloves were bloody. Dad asked them to give her some benadryl since she is so itchy. We will see if that helps. Now there is more concern about infection. Once again, I am not sure what is going to happen.

Mom is at Georgetown

Since she pulled the PICC line, they discharged her from Layhill Rehab. She is in the Georgetown ER to be evaluated and most likely admitted.

Mom pulled out her picc line

Mom's memory has been going down-hill the past few days. We (the family) think it is due to the TPN (IV nutrients) but we are not sure. So she has been getting fuzzier (mentally) and Nicole just sent a message that she pulled out her picc line.
We are not sure what the next step is.

Mom stood up and took a few steps today

I just got a message from Nicole that says that Mom stood up with the walker and pivoted to the bed and back to the wheelchair a couple times and then wheeled her self a few steps down the hall using the walker. I talked to Mom and she said that she needed help to get out of the bed, but was able to take the steps without assistance! She said it was really really hard but she did it! How amazing is that!

Good Mom update

Mom is doing so much better. She is in the hospital, and she is mentally back to normal. We saw her on Friday after she went to the hospital and she was more with it that she had been. But she did not remember being sick and did not know why she was in the rehab and why she could not walk and why she could not use the bathroom. So that was hard. And then she had more rectal bleeding on Saturday morning. And she called my dad to tell him, the rehab place did not. And when Dad got there, her feet were on the floor, because she was getting ready to try and leave. I was heading to a play-date, so Greg went over there for a few hours and convinced Mom that she had to stay in the hospital and also explained what happened over the last 3 months. And so Mom got so sad, and I talked to her on the phone and she was apologizing for what we went through and so sad. Joey and Jamie went to visit her last night and stayed for 4 hours because Joey did not want to leave since it was the first time that Mom was with it in so long.

We went back to visit yesterday morning, and she is even better! She totally knew what was going on. She knew where she was and what day of the week and the date. She is doing isometric exercises every hour on her own. She knows that she can't drink and was reminding a nurse of it. It is absolutely amazing. Sara was sitting on the bed with her and they were singing head, shoulders, knees, and toes, and hugging and playing. It was just amazing. I called Joey and we were both crying on the phone, just talking about how absolutely amazing it was to have our mom back. She asked my dad to bring back her cell phone because she wants to start talking to people again. My brother brought her some soup cans to use as weights and she is now using those with her arm exercises. And she should be going back to rehab today if all goes well. And she can feel the gas in her stomach and is passing gas sometime (all good and was not happening before). So I am not sure what the hell happened. It is like a miracle or something. I totally can't believe it. So if you are the praying type- please pray that this continues, if you are not- I'll take good thoughts, anything you want to send our way.

I just got off the phone with Mom (Yay!) and she said that the nurse is there and going to help her get ready. Sara and I are planning on going there to visit today. Oh and she does have her phone with her, so if you want to call and say hi, she would love that!

Mom update- back in hospital

So on Friday at about 1am(or so) Mom got sent to Georgetown ER. We are still not entirely sure why. It seems that the doctor at the rehab facility saw the report from Mom for the day (ileus and all) and got scared and did not realize that this was the same thing that she has been dealing with for the past 3.5 months. So they sent her off. Luckily while she was there they were able to put her picc line back in. She got back to the rehab place yesterday during the day. It turns out that the staff at the rehab facility was also giving her ice chips. A few ice chips were fine, but Joey got there and she had a 16 oz. cup filled with ice. No wonder her stomach is a big balloon.
We went yesterday to visit her and she was really with it mentally. For the first time in a long time I felt like I was talking to my mom. Of course she was pissed that she could not walk or use the bathroom. And she did not understand why. She went to PT and was able to stand (with assistance) 3 times for about 30 seconds each time which is great. And the PT said that she might start to take steps next week, which is great.

Dad just sent an update and Mom is at Montgomery General in Olney. Apparently Mom is having rectal bleeding and they sent her to the hospital. And did not call Dad. Mom called Dad to tell him, so he is on his way there now. I will post when I have more information. Hopefully she will still be able to go to rehab, because it really does seem to be helping and making her stronger.

Mom update

Sorry it has been so long. Mom pulled out her pic line on Sunday. They were able to put it back in on Monday, but someone from a radiology place had to come and do it. She pulled it out again yesterday. It seems that she is going to need to go to the hospital to have it put back tomorrow. And apparently if she pulls it out a third time, she will be kicked out of the rehab facility and have to go back to the hospital. So I am not really sure what the next step is. If anyone knows about medicaid and other entitlements, please contact me.

Mom update July 3

So Mom is at rehab. She was transferred late Wednesday afternoon. OT and speech therapy came to evaluate her yesterday and PT should be coming today. Nicole was there yesterday and said that she sat up in bed for 45 minutes, which is great and that she was able to answer a bunch of questions about herself and her family. Sara, Greg and I went for a visit last evening and she started out really with it, and then a doctor came and started asking questions and she had no idea. at all. The doctor asked how many children she had, she said two. Name Michael and Joseph. I asked who I was and she said Stacy, and then asked how I was related and said her daughter. Her mind is just not making connections that it should. For awhile she thought I was Robin (her sister) and then that I was Toni and she also called me Grandma. It was the most out of it that I have seen her in awhile. It was almost like she was saying whatever name came into her mind because she did not know who I was. The only person she seemed to know the entire time was Sara. She always knew her name and that she was her granddaughter. So I am not sure what is going on mentally. Oh and she still thinks she is at Shady Grove Hospital.
So I think she is getting better physically, and most of the time mentally, but the times that she is out of it mentally, she is really out of it.

Mom update- Yay!!!!!!!!

What an up and down day! I just called Dad and he said that Blue Cross decided to approve her for a week of rehab! So she will be going today! I am so excited I can't handle it! I guess the discharge person filed some emergency petition or something to Blue Cross. So she is scheduled to leave the hospital today at 3pm.

I will post when she is actually transported as well.

Mom update- Out of my mind frustrated

So Mom is doing better. She is peeing on her own for the first time in months. She was moved from the cardiac unit to a step down unit. We had a treatment meeting on Friday and all of her team think that she is ready to move to a sub-acute rehab facility. They were hoping she would be there on Monday. There is actually a rehab facility that specializes in difficult cases and has a bed and has accepted her.

Dad still works full-time so he has Blue Cross Insurance. Unfortunately, Blue Cross will not cover sub-acute rehab. She does have Medicare, but it will take weeks before Medicare will decide if they will cover it since it is her secondary insurance.

So essentially, Mom is ready for rehab finally and her insurance won't pay for it. They will however pay to keep her in the hospital where she is not getting better. Dad was talking about paying out of pocket if it comes to it, but I don't think he would be able to afford more than a few days to a week and she needs much much more.

Dad is staying at the hospital today to see if there is anything else that can be done. For the first time since this whole ordeal started I am really feeling hopeless. I mean, there is no way for us to get her the care she needed, without bankrupting my parents. I honestly don't know what to do now. Sorry this is such a downer update, but I am just at my wits end.

Mom update- still in the hospital

Some people have asked and yes, Mom is still in the hospital. Dad is going to be meeting with the doctors tomorrow to figure out what the next step is. She does not have a fever and has not had one for a few days, so that is good. No other news then that.

Mom update Tuesday

Nicole was there today. Mom's stomach is hard again and she has a fever. They are looking at sending her to a rehab facility this week.

Mom update Sunday

Mom went outside today! So exciting! Jamie got in touch with the head of PT and got them to come and put Mom in a wheelchair and bring her outside. I love Jamie! I am so excited! I brought Sara for a visit yesterday and she looked really good. I am hoping to bring Sara again today. Greg said that PT came today and worked with Mom for awhile and had her standing up again. YAY!!!

Gram is home and out of the hospital.

Mom update Saturday

Greg was there this morning. They have moved Mom out of the ICU into the unit next to it. So a step down from ICU, still higher than when she first got to Georgetown, but less care than the ICU, so that is so exciting! Greg said that she looks really good and that she knew where she was when asked, all really exciting!

And Gram is supposed to be coming out the hospital later today.

Mom update

Wednesday- Mom had a decompression colonoscopy as well as some type of scope down her mouth to her stomach. They saw ulcers in her intestines, and did a biopsy of it to see if that is part of the problem.
Friday- It is written on Mom's board that PT came and she stood up 5 times with the help of 2 PT and a walker. Yay! They are going to move her out of the ICU when they have another room. Another Yay!

Update

I will try and update since the last time I posted.
Saturday- still getting liquids and jello. Mom's stomach got really distended.
Sunday- put the NG tube back in and stopped all liquids and food. Lots of air came out. Getting TPN through IV
Monday- stomach still distended.
Tuesday- doctors in ICU have no idea what is going on with her. We are pretty much back at square one- they were asking if she had traveled out of the country or anything lately. Just got a text message from Nicole (who is at the hospital). Mom is having more bleeding. Nicole thinks it was quite a bit, they are cleaning her up and doing more testing. Last time she had a bleed it was because they added the cumadin to her meds (she was already on the heparin for her heart rate). She was not on cumadin this time, but is still getting the heparin to for her heart. I am not sure if they are going to stop it or not now that she is bleeding again.

Gram is in the hospital (Shady Grove) for dehydration, admitted last night.

Mom also has one in her neck

Blood clot that is. Apparently they are doing what they need to do. Whatever that means.
And this is what they are calling what she has: Ogilvie syndrome is the acute pseudoobstruction and dilation of the colon in the absence of any mechanical obstruction in severely ill patients.

Mom has a blood clot in her arm

She is already on the medication for it, and it is not working. There is nothing else they can do because it is not a bad enough clot and they can't give her the medication anyway. They say that since it is not moving it is okay, whatever that means.

Her stomach seems to be doing better. We got more clarification about Mom's feeding stuff. She is getting jello, and liquids to equal the amount of the NG tube feedings. So that makes a lot more sense to me. It does however seem that her stomach is getting bigger but it is still really soft (this is good).

Mom update- frustrating

Yesterday the ICU docs put Mom back on the feedings through the NG tube. Sometime between late last night and this morning they removed the NG tube and are now giving her pureed foods by mouth. Her stomach has already gotten a little larger. The ICU doctors are not following the plan that her other doctors had which is to take things much slower. So I am not sure how this is going to turn out. I honestly feel like we have taken a million steps back since she is in the ICU with a fever and her stomach is getting distended because of what they are feeding her. I am seriously hoping that it ends up working this time, but very very frustrated that we are encountering the same thing as we have before.

Mom has a fever again

Had it for a couple days. Not much else. Nicole says her hands are really swollen.

Mom update

Is still in ICU. Had sigmoidoscopy done- did not show anything, so cause of bleeding is unknown. Had some other type of PIC line put in her arm. We had a meeting with the doctors today that did not really tell us anything new. Hopefully Mom will be able to come out of ICU in a couple days. Whenever she is discharged from the hospital, she will be going to a rehab facility. She will need to be on the TPN (IV nutrients) for a few months most likely.

Mom update

Mom pulled the central line (I think that is the right word) out of her neck last night. So this morning she needs to go down to radiology to get a new one put in. And then this afternoon is the sigmodoscopy (sp?). Dad is with her right now and she just told him that she is nauseated so the rest of the update will have to wait (I was on the phone, getting an update).

Mom is in ICU

Mom was transferred to the ICU today. She got cumadin last night and had some bleeding and since cumadin is a blood thinner the bleeding is harder to control. She is stable right now and will be getting a sigmoidoscopy done tomorrow to try and find out where the bleeding is and see if they can repair it. And they do not allow overnight visitors so Mom is going to be by herself tonight for the first time since this whole craziness started.

Mom update

Mom's fever seems to have finally gone down. I found at that at one point in time it was 103 under her arm, super high! Scary. She still has the UTI, and now has some type of blood infection again. It seems that her central line is infected so tomorrow they will probably be taking that one out and giving her a new one.

Mom update Sunday

Mom has a fever. They are taking blood to see what is going on. Earlier this week they said she could have water. Her stomach got distended. They stopped the water and it is going back down. Still doing exercises with her every hour.

Mom update Tuesday

Yesterday they gave her clear liquids. Today her stomach is bigger again. She is back to just little sips of liquid to wet her mouth. I think the doctors do not know what do to.

Mom update- Monday

So Mom has a low grade fever again. Not too much change other than that. Her MRI came back normal. She has moments where she is totally with it and then other times when she is out of it.

Mom update

So Mom seems to be doing well. We are still doing exercises close to hourly on her. I am at the hospital now and she is able to do all of her hand and arm exercises on herself. We have to verbally prompt her and sometimes show her but she can do them. And when we were doing the leg exercises she was able to bend her knees a bit on her own! I am really excited. Nicole was here yesterday and the doctor stopped by and said that she is doing really well, the illius (lack of intestinal/stomach movement) is getting better. And it because of the exercise, so that is really great. She did have a fever this morning, so they took blood cultures and urine to test. But overall I think she looks much better. Her hands and feet are not swollen and her hands are not red either.
So we need to figure out this fever, but other than that, things seem to be going in the right direction.

Mom update

So Mom seems to be about the same. PT got her up and standing 3 times today for about 20 seconds each time. They did an MRI at 1:30am. Have not heard results yet. We are still doing exercises as much as we can and hopefully it is helping. I will try to post pictures from today since it was Greg's birthday and we have some cute ones.

Mom Update

So I called Mom's hospital room today and she answered the phone! It was kinda crazy but she sounded good. While I was there, PT came in and they put her on a tilt board and so she was standing on that for 20 minutes which is just great.

Mom update

So Mom seems to be a bit more with it. We are doing exercises every hour. Joey is taking time off this week to be with her so we can exercise her arms and legs more. Greg is also going to help out. Dad is still sleeping there every night. So hopefully this will help.

Mom update Saturday edition

So her memory is getting better again. Yesterday she knew who Nicole was. I brought Gram and Aunt Robin here and she knew who they were. She knew that I was a relative but I felt like it was more of an issue of not being able to say the words daughter and Stacy rather than not knowing who I am. Today she knows that I am her daughter and after some hesitancy, said my name was Stacy. So that is exciting.
She had a colonoscopy yesterday and her stomach has gone down some more. Right now the focus is on getting her to move more. So we have a packet of exercises to do with her and will be doing them every hour that we have someone here. I will be back to posting a schedule.
Joey/Jamie brought her a CD player so she is listening to music right now and really likes that.

Mom update

So the confusion is back. She has never been really sure where she is, but today her confusion is really bad again. Worse than it has ever been. I brought my computer and asked her if she wanted to see Sara pictures. She said yes. I showed her pics from Sara's birthday. She asked where she was a few times. I started to show her a video of Sara. And then she asked who Sara was and if she was supposed to know her. She does not know who I am, not even that I am her daughter. Last time she forgot my name but knew that I was her daughter at least. And she always knew who Sara was, at least recognized the pictures. She did not recognize the picture or video of her at all. I have been here for 1/2 hour and she has asked every 2 minutes where she is and why is she here. If I ask her anything else, she has no idea.
She is also refusing treatments so that is difficult as well.
Her heartrate, BP are still good and she is breathing on her own.

Monday Mom update

Mom is breathing on her own, all room air.
Mom's heart rate and blood pressure are still under control.
Still has UTI, pneumonia, yeast infection (I think it is in her blood), stomach still has air in it.
Doctors seem to be pleased with progress.

Mom Update

Sorry, just been busy. Today was Sara's birthday and we took her to visit Mom. Of course Mom and Sara were both so excited to see each other. I will post some pictures of Sara and her day later.
Mom seems to be doing a bit better. Her stomach is a bit smaller, and her blood pressure and heart rate are under control. They are still not sure what is the problem though.

Colonoscopy done

And it went great! She did not need to be put on the ventilator either.

Mom is having a depression colonoscopy done

At least that is what I think it is called. It is to try to get the air out of her stomach. Her colon is dilated and they are worried that it might tear. So they are doing the colonoscopy right now. They put her on the vent for the surgery because of the sedative.

Mom is being transferred

Mom is being transferred to Georgetown Hospital. Hopefully they will be able to figure out what is going on with her.

Mom update

Mom refused the medication so she is still in the same room (not ICU). Her stomach is still distended. One of the meds made her heart race and they gave her something else to made it slow down.

Mom has pneumonia again

Greg is at the hospital and just called to say that Mom has pneumonia again. And a UTI again. A different GI doc came yesterday to give a second opinion and he wants to give Mom a medication that will move her bowels but will also drop her heart rate so she will need to go back in the ICU. We are not sure yet if this is going to happen today or not.

Mom update

Sorry I have not updated all week. There really has not been too much change. Her stomach is still distended. Her bladder is not working. All CT scans are coming back normal. They think if she was moving more she would be fine. But she is not strong enough to move and the nurses are not helping her get up. She had a nose bleed couple nights ago.
She is supposed to be eating solids but doesn't want to. She is drinking more liquids.
Her memory is not so good right now. Yesterday she forgot all of our names, did not know how many kids she had. Scary stuff. When I got there last night, she knew what our (Joey, Stacy, Nicole) names were, but did not remember Greg or Jamie. The doctors think it is a hospital induced dementia just from being there so long.

April 19 Mom update

Mom's stomach is still distended. They are doing a CT scan of her head, abdomen and pelvis to try and figure out what is going on. She is also having some confusion.

April 18 Mom update

Mom's stomach is totally distended. They had put in an NG tube and she pulled it out last night. She is back to nothing by mouth while they try to figure what is going on.

Friday April 17 Mom update

I went to see her earlier. Her WBC is still at 13. Her stomach is distended again though, so I don't know what is going on.

April 16 Mom update

Mom seems to be doing well. Her WBC is down to 13 so that is awesome. Her temp went up a little to 99.9, but it is still better than it was. She ate about 1/2 of her lunch (baked ziti and veggies) so that is good. She still needs someone to help her eat or drink her water. She is not strong enough to be able to hold stuff herself. Hopefully PT/OT will start tomorrow.

Mom is out of the ICU!

She is on a telemetry unit (which is a step down unit but she is still hooked up to monitors)! I am so excited and she is looking so much better. No fever! She still has not gotten out of bed, but she is talking more and telling me about gifts that she bought for Sara Rose (that she had hidden), so I know she is feeling better. And she is getting solid foods! So things seem to be slowly but surely in the right direction. She also has a phone in this room and can talk a little on it, so if you want the number, send me an email.

April 15 Mom update

She seems to be doing better. They are looking for a bed in a step-down unit so hopefully she will be out of the ICU today. Her WBC is up at 19 and she still has a low-grade fever. But they think she is not critical anymore, so that is great.

Tuesday April 14 Mom update

WBC is down to 16 again. The bleeding from her nose stopped. She is back on a liquid diet. Her BP is high, but I am not sure what it is. I will be there tonight and hopefully have a better update.

Monday April 13 Mom update evening

The nurse earlier was wrong. Mom's WBC is up to 22. She still has a fever. Doctor just called to let me know that she is having bleeding in her nose that is going to her lungs. They are stopping the blood thinner and giving her plasma. Which increases her risk of stroke. But they need to stop the bleeding or they may have to reintubate her. And they found a gram positive infection in her blood. She is off the liquid diet again. But her pancreatitis does seem to be getting better at least.

Monday April 13 Mom update

Joey spent the night there and Nicole is there now. Nicole says that her pancreas is doing better so they are starting her on a liquid diet today. She still has a fever. Her WBC is down, but I am not sure what it is. She is starting to have some pain again and needed pain meds last night which made it harder for her to breath.

Hospital Notes 4/12

Nurse called me at 2pm to come over because Mom was refusing breathing treatment. I talked to her and she said that she would have the treatment when they came back.

2:45pm- Stacy
BP 144/68. Dr. Chanalis (ICU doc) ordered to have lasix started again for swelling. He looked at the chest x-ray and said no pneumonia or infection. Ordered bloodwork to check about pancreatitis. Said she could have a sip of water to wet her throat and mouth.

April 12 Mom update

Mom still has a fever going from 99-101. Her WBC is down to 16 so that is good. I am here now and the doctor said that she can have a sip of water, and so now she is able to talk a little better. The current theory is that the pancreatis is making her fever stay up. She also has the sinus infection. And this doctor said that she does not have pneumonia. So who knows if she has it or not. I will bring my computer back later to post some more hospital notes.

Hospital Notes 4/11

8am- Greg
Temp 101. BP 150/74

11am- Stacy
BP 150/65. Dr. Jaeger's partner came by. He is taking her off the Reglan in the hopes that it will help make her less anxious and confused.

12pm- Stacy
BP 156/71. HR 103-123. Blood sugar 211. Mom seems to be retaining fluid in her hands. I asked the nurse to check and see if she is still getting a diuretic. Waiting for answer.

1:30pm- Jamie
Infectious disease doctor came and said that they weren't sure if she has ventilator pneumonia or not. He is switching one of the 4 antibiotics to see if he can target it better. He did say that she got the bug here. Fever is down but blood pressure is high. Respitory therapist gave her the nebulizer. Still having bowel movements. Being given tylenol for being warm. No pain though.

3pm- Jamie
Intensivist ordered a catheter to be put in. While doing so they changed her bedding. When being moved, she complained of body aches and her heart rate went up to 143. Clearly this is not thing she wanted.

6pm- Jamie
Dr. Schoenberger's partner saw her and said she had a bit of mucus in her lungs, but just encouraged her to cough. They had to give her insulin for her glucose of 176.

10pm- Jamie
Couldn't sleep so they gave her anti-anxiety meds. Her BP was high and they hoped it would bring it down, which it did, slightly.

12am- Jamie
Tylenol for fever 101, insulin for glucose 194.

Saturday April 11 Mom update

Mom looks good today. She still has a fever on and off. Her WBC is down to 18.2, so it is still going down. They are also going to take her off the Reglan.

Mom has been extubated!

4/10 2:40pm
The tube is out and she was getting oxygen and moisture through a face mask. They are able to lower the oxygen because she is doing well. The hospital bug is acinetobacter. She is now getting oxygen through a nasal cannula.

Mom's eyes are open!

She is still on the vent, but they took her off the sedation and her eyes are open! They are going to try to take her off the vent in an hour, I am so excited! However, she is awake and seems to be really confused (of course) but I am just so excited to see her eyes open.

She also has sinusitis, which is the infection, and why she had the fever. And she has some hospital bug, we have to wear gloves and gowns in the hospital. I can't remember the name of it, but it showed up in one of the cultures. And her white blood count is down to 19! Yay! Oh and she has a mild case of pancreatitis. But things are looking great.

Update from the hospital- Thursday Night

So I am here at the hospital and Joey and Nicole took a bunch of notes today, so I am going to post them here. We have been taking notes and I am going to go back and enter them in the blog to make sure we do not loose them.
8:30am- Nicole
I talked to Dr. Ganti this morning because her white blood count was up again. He is going to talk to the infectious disease doctor to see if she could have a drug fever and also if some of the meds could be causing higher white blood counts. She reacted very well when the nurse shined the light in her eyes, so that is good. There is a stool sample that is sitting on the counter which is weird because it is from the other night. They also bathed her.
11:04am- Nicole
Nurse said she has been having two bowel movements a day (which is great!) Respiratory therapist said as soon as they get her fever down they are going to test taking her off the respirator and giving her the C-PAP which will basically be letting her breath on her own. They lowered the level of oxygen that she is getting. It is now at 40.
11:49am- Nicole
Nurse said she doe have an infection in her lung.
12:15pm- Nicole
Mom has a fever of 103. The nurse gave her tylenol and put ice packs around her body.
1:23pm- Nicole
Mom has a fever of 102.7. The lung doctor said they presume that there is an infection in her lung, but it is not proven, so the information from before was incorrect.
4:00pm- Joey
Her fever is 101.6. She has ice packs. Dr. Corvella came and examined her. He said that she is still very much a mystery. All cultures keep coming back negative and her heart rate/blood pressure/ oxygen and respiratory levels don't seem like she has a massive infection. Her belly does not feel like there is infection or abscess. They are looking into why she still has such a fever. There could be blood clots in her legs or an abscess in her stomach. They are going to do a CT scan of her chest and abdomen again. I asked if there was a chance that the abscess was missed on a previous CT scan and he said that it is possible, maybe it was too small at the time and now it is bigger. I asked if her lungs are still a problem for taking her off the vent and he said that her lungs are good (well not good but okay) enough for her to come off the vent or to start weaning her off but with the fever they have to hold off. Fever could be caused by one of the medications. If next tests come back negative, or shed no light they will start taking her off medications one by one to see if one of them is causing the fever or white blood count increase
5:45pm- Joey
Dr. Mathers (infectious disease) came by and gave the same story
6:30pm- Joey
Dr. Feltcher (surgeon's partner) came and gave the same information. He added that her blood test shows a small level of pancreatitis. That maybe the CT scan will show it swollen and we might know a bit more about what is going on. I asked if she was being tested for MRSA and VRE and he said that since no cultures show any bacteria that these issues can not be there. He did also mention that since she has been on such strong antibiotics that some blood cultures will be prone to showing no bacteria because they kill everything.
7:50pm- Stacy
Mom's fever was 100.6. Her blood pressure is 95/51. The nurse (Enrico- I think) just told me that Mom will be going for a scan of her head, chest, lungs, pelvis and abdomen tonight. Dr. Feltcher thinks that she may have pancreatitis.

Can't seem to get rid of fever

Mom's fever has been high all day. At one point it was 103! Still no idea what is going on with it.

Thursday April 9 Mom Update

Sorry for the late update. Mom is still on the vent. She still has a fever and her WBC is up to 22. They are still not sure what is wrong. Her kidneys are looking better every day and she is not swollen anymore. Her stomach is not distended either.

Hospital Notes 4/8

11:30am- Nicole
Dr. Hertiz (ICU doc) said that they were going to start tube feedings very slowly. If the feeding doesn’t go anywhere then they will stop so no more stuff will get stuck in her stomach. She has good bowel sounds. The intensivist is happy with the last 24 hours. The surgeon said her stomach looks good, it is much softer. They have to get more fluid out before they can wean her off the ventilator.
3:00pm- Joey
HR 89-100, BP 106/63, PO2 93
10pm- Joey
HR 93-103, BP 128/75, PO2 94. She has been coughing which the nurse said is good because it will help to loosen the phlegm out of her lungs.

Wednesday April 8 Mom update

Nicole is at the hospital right now. Mom's fever is finally down this morning, so that is good. The GI doc was there this morning and said that he still can not hear anything moving in her bowels so that is really disappointing. Nicole is on the phone and all of the cultures are coming back negative so far. While it is good that she does not seem to have an infection, it also means that they don't know what the hell is wrong with her. Will post another update later.

Hospital Notes 4/7

7:40am- Joey
HR 72-87 irregular, BP 112/59, PO2 96. Fever 100.6. Belly looks much better. General swelling is down. Dr. Schoenberger was here and noted that her belly was getting soft.
11:00am- Joey
HR 66-87 irregular, BP 94/56. PO2 96
12pm-Joey or Nicole, I can’t tell
HR 72-82, BP 99/54, PO296. They came and took her blood sugar and it was 214.
3:00pm- Joey or Nicole, I can’t tell
HR 89-106, BP 117/70, PO2 94. Nurse told me that WBC was 20 and chest x-ray looked the same
8:20pm- Stacy
HR 98-102, BP 130/69, PO2 95, temp 101.5. Respiratory therapist came to suction mom, bright red blood came out. They will keep an eye on it. When I got here, she did not have a blood pressure cuff on. When I mentioned it, her current nurse was already getting one, but did not know why she did not have one before or where hers went.

Another Mom update

Just got back from the hospital. Mom still has a fever. Around 101. When I got there she did not have a blood pressure cuff. The nurse did not know why but was getting one to put on her as I asked. Her blood pressure looked much better. I saw her kidney doctor and he said that her kidneys are still improving, even with the Lasix, which is great! The respiratory therapist came while I was there to suction her lungs and give her medication. She pulled some bright red blood out, so I am not sure what is going on with that, I will have to ask the doctor tomorrow. She said it was not on any note, so it seems that it is the first time that it happened. She is also now getting the Vitamin D that she needs (Dad mentioned it to the doctors yesterday). I think that is all for now. Oh and Mom's bowels have started moving again so that is super exciting!

Mom update

Mom had a fever most of yesterday (around 102 degrees). It is down to 100 today so that is good. Her WBC went up again today. It is now 20. There seems to be some confusion with the doctors. While I was there yesterday the intensivist came in and said that she thought Mom was on Lasix to help with her edema. She was not on it, but they did start it yesterday. Then Joey talked to a doctor who said they were not starting it but they really did so it is confusing. Joey is there today and says that she does not look as swollen, so that is good at least.

Hospital Notes 4/6

3pm- Joey
White blood cell count has been up all day. Fever all day too. It is currently 102.2. Her heartrate is 100-120, PO2 is 94 and blood pressure is 180/88.
3:45pm- Joey
Heartrate is 95-125, BP is 160/76 and PO2 is 94. Dr. Feltcher was in. He said that the BP wasn't great but it is better high than low right now. I asked what tests are being run and he explained that they test for heart/lungs/kidneys and several common infections. Everything is looking better except for high WBC and fever. I asked him about the pancreas and even though he wasn't concerned he said that he would order an extra blood test for that function. He told me that extubation is a good way away because first they would have to stabilize her prior to giving her a diuretic to get rid of the fluids. Then once the fluids are down, we can take her off the vent.
4:55pm- Joey
Dr. Mathers stopped in with the same story. They did an EKG and everything looked the same as it has been showing the irregularity. Her heartrate was 96-120, BP 155/76, PO2 94
6:15pm- Joey
Nurse came in and explained to me that she was giving her the diuretic. So apparently one of the doctors this afternoon said that they should start the diuretic so they did. Even though Dr. Feltcher said that they couldn't start them.

Mom has a fever and WBC is up again

So I just talked to Nicole and Mom is now running a fever. They gave her some tylenol, so that should help. Joey was there last night and it seems that her heart rate was higher than it had been and her blood pressure was high too. Dad is going to try to talk to the doctor and find out if they have any idea when they can extubate her.
Her WBC is also up to 18.5

More positive updates

Mom is off the blood pressure medication! Also her WBC (white blood count) is down to 13.5, all good news. She is still on the vent and I am not sure when she is coming off (hopefully soon). I am hoping to get to talk to her doctor today. Thanks for all the thoughts and prayers.

Moving very slowly forward

I am posting from the hospital again. Mom's white blood cell count is still going down, so while they don't know what the infection is, the antibiotics that they are blasting her with seem to be helping. Greg was here this morning and talked to her kidney doctor who said that her kidney function was getting better. And he also talked to Dr. Ganti (primary doctor) who also says that she is making progress. She is still on the ventilator and I think that they are giving her some time of liquid nutrients right now. There is a new bag up that was not there before and it says- Central Formula: Amino Acid, Dextrose, Sodium Chloride, Sodium Acetate, Potassium Chloride, Potassium Acetate, Calcium Gluconate, Magnesium Sulfate, Multivitamins, and Trace Elements. I am not exactly sure why they are starting this now, I guess because she has been on the vent since Wednesday, and will probably be on it through the weekend (at least).
Oh Greg said they also took another x-ray of her lungs, so hopefully I will get those results soon. And her blood pressure is getting better, they were able to lower the blood pressure medication a little. Will post another update later.

Mom update

I am here at the hospital now. Her white blood count (while still elevated) is starting to go down. Her kidney function is getting better. She does not have a fever right now. She is still on the vent with the OG tube. They have drained a bunch of stuff from her stomach. Right now we are trying to make sure someone she knows is at the hospital at all times because she is sometimes waking up out of the sedation and gets freaked out (Obviously- she is on a vent, and they had to restrain her). So we are able to calm her down if someone she knows is here. They still have no idea what the infection is, all of her tests are coming back negative. They have her on really strong antibiotics that seem to be helping. I just spoke with her pulmonologist who said that he thinks she will be on the vent through the weekend at least. It is too hard for her lungs to do it's jobs with the pressure from her stomach pushing against them. Thanks for all positive thoughts and prayers, they are very much appreciated.

Mom's kidneys seem to be working

Just talked to Dad and Aunt Robin, Mom peed in the wee hours of the night so her kidneys are working again! Yay! Still bowels not moving and other stuff not good, but it is something positive.
She also woke up briefly and was trying to tell Dad something but everything she was writing was scribbles. She is now back asleep. The OG tube has sucked a bunch of crap out of her stomach and Dad says it is not as distended as it was, so that is another good thing. It looks like the next 48 hours or so will really tell us what is going on, but I am feeling much better about it.

When we talked to the surgeon last night he was saying that he thought her kidneys were not working because she was not getting enough fluids. They slowed down on the fluids because she was having a hard time breathing. So now that they are pushing fluids again her kidneys seem to be working again. Her heartrate is still irregular and her blood pressure is still low. And they are still not sure where the infection is.

Thoughts on mom.

I am honestly having a hard time figuring out the seriousness of what is going on. One doctor told me to have the family who lives around here come by to see her tonight, just in case. The other said that we need to give it 48 hours and then reassess. So I really have no idea. So we had family come by to see her, just in case, but I am really hoping that it will still get better.
Both doctors say that she is in really critical condition though. But she is strong and if anyone can pull through this, it is her.

Mom seems to be stable

I am home and putting Sara to bed. Mom seems to have enough things doing the work for her (vent, cath, etc) that she is stablish, if that makes sense. I am going to try to get a little sleep and go back later or if anything changes. Dad, Joey, Nicole, and Jamie were visiting today, and Aunt Robin, Aunt Lois and Dena Hirsh all stopped by to see her too. And Greg too. He brought Sara to play in the waiting room so I think that was nice for Dad and everyone but Sara was not able to see mom.
my brother, sister, my 2 aunts, my dad and greg were all there tonight just on case so everyone got to see her.

They had to put her back on the vent

Mom is back on the ventilator. When she came back from the CT scan she was not able to breath on her own. She is not doing well. The CT scan showed that her bowel is not moving but there is no obstruction. She is still not urinating. Her blood pressure dropped and heart rate is irregular. Dr said she is in critical condition right now.

NG tube did not work

They were not able to get it in. She drank contrast and is now going for a CT scan. Her white blood count doubled today (up to 29)
The NG tube didn't work she drank contrast and will be going for CT scan later. Her white blood count doubled today and they are not sure where the infection is. She is not urinating so it looks like her kidneys are not working right. Her blood pressure is really low and she is having an irregular heartbeat.

They are trying to put in an NG tube

On my way to go see mom. Mom's stomach is really distended. They are going to try to put a NG tube in to help drain her stomach. She is having a really hard time with breathing and they think she may have a blood infection. She called me this morning at 2:45 and said that she was having a hard time breathing and wanted me to come over. So I stayed at the hospital from 3am- 4am when Dad got there.

Monday's mom update

She seems to be doing better! Yesterday was absolutely horrible. She was in so much pain that she really thought she was going to die. I was a mess last night. But they have her pain under control and she was able to get out of bed today and sit in a chair for an hour or so! And her kidneys and lungs are doing well. She has a UTI and an irregular heartbeat that they are looking into, but things are looking up.

Update on my mom

She is still in ICU. Her breathing is not great today. Greg has been there since around 7:30 so my dad could go home and do laundry and shower and stuff. I think Greg is on his way home now and I plan on going. I am really worried about her. It seems like she did the best on Friday and not as well yesterday and now she is doing worse. I am not sure what is going on. I am so worried. I was awake last night and normally call my mom when I can't sleep (she has insomnia) and I was so sad that I could not call her.

Mom is still in ICU

Mom is still in ICU. She was a little out of it today, so I am not sure if they increased her pain meds or not. She still has some type of infection and they are not sure what it is.

Mom is awake

To clarify, they did not have to resect any bowel. Which is just amazing. She is awake now. She started to wake up and pulled out the ventilator and is breathing okay. They are still not sure what is wrong with her kidneys and she may have a respiratory infection, but she is awake and looks pretty good. She is still in ICU and will be there through the weekend at least. And then probably a regular hospital room. So things are great right now.

Surgery went well

Okay, I am back. She had the surgery. They were able to do it laproscopically, which is good. There was no obstruction, but her bowels were caught in her hernia and it was being cut off (at least that is the theory right now). They repaired the 2 hernias. She is currently in ICU in a medically induced sleep since they had to put her on a ventilator. So hopefully they will be able to take her off of it tomorrow.

Mom going in for emergency surgery

She is going in for emergency surgery because they think she has an obstructed bowel. Will update later.

Boobie

Today Sara asked for "Boobie". She then sniffed my breast and licked it. Said mmmmmm and then started nursing. She makes me laugh everyday.

At the playground- Video

2/1/09
If you listen closely, you can hear me saying "whoa" as I go back and forth

I am so proud!

I put my hat on all by myself! Doesn't it look good!


Look at this cool toy that I got! I love it!

Cuteness

So today Sara and I went to visit my mom. I left the diaper bag in the entry way and then we went to the kitchen to hang out. After about an hour, she dragged the diaper bag (it is heavy) over to us and put the strap in my hand. When I asked her if she needed a new diaper, she shook her head yes. It was super cute.

First time painting!

Look at what a good painter I am!

Climbing Sofas

So Greg and Sara still sleep downstairs in the basement. And I sleep upstairs in our bedroom. We have been talking about starting to transition them upstairs and eventually Sara into her own room. I think we are going to have to do it sooner than we thought.
Tonight Greg and Sara went downstairs to sleep. I stayed on the main level to cook and make tutus. I was sitting and working on a tutu when all of the sudden Sara walks up the stairs. Just like it was no big thing. I call down to Greg to see what happened. He was asleep. I woke him up and found out the gate was still up. She climbed over the back of the sofa and jumped down and then came up the stairs. This has happened once before a few weeks ago, but not since then.
He brings her back down and about 1/2 an hour later I am upstairs in the craft room and I hear this little voice saying, Mommy where is you? I go downstairs to see Greg and Sara heading back down the stairs again.
And again about 1/2 hour later, Sara is walking up the stairs. Gets to where I am and starts laughing and jumping. What a little stinker! This time Greg and her went upstairs to our bedroom. I am about to head up there and I am hoping that she is asleep.
Ahhhhh! She has been sleeping so well, I hope that this does not make life crazy!

Cute

Oh I still love so much of it! I love that when I pick her up at my mom's after work, she gets so excited and yells- mommy mommy mommy num nummies sit. Sometimes Sara hugs her dolls to her cheek and says cute. Sometimes she puts her cheek on my breast and says cute. It is so sweet.

At the playground

Mommy and Daddy took me to the playground. Look how much fun we had!

Loves to nurse

We were at Chuck E Cheese today and she can back from playing to nurse for a sec!

Chuck E Cheese

I love Chuck E Cheese. It is so much fun. I always make friends when I go

Just hanging out with Daddy

We went to a flea market and got a cool Dora couch. I love it when Daddy sits on it with me.

Playing in the snow!

Auntie took me to play in the snow! I had so much fun.

What can Sara do?

Jumping Yes, very well actually.

Walking up stairs by himself Yep, she goes up and down the stair by herself.

Taking his clothes off Sara can take of her shirt, socks and diaper. Pants are too hard for her to get off

Trying to dress himself no idea, she has never tried.

Drawing cirles Nope, Sara still eats the crayons

Drawing lines Little squiggly lines, but she still eats the crayons, so we don't color much.

Climbing ladders at the playground Yep

Throwing/catching a ball Throws great, have not tried to see if she can catch it, but I doubt it.

Feeding self w/spoon and fork Better with a spoon than a fork, but is fine with an adult fork

Drinking out of open cup She can, but we don't let her often

Happy

I had to work for a few hours this morning When I got home Sara and Greg were watching TV in the living room (right near the front door). Greg said- Sara, mommy is home. Sara ran over and saw me and said- "happy" Then when I picked her up she said "Mommy cute" How sweet is that! It was so freaking cute, I about melted!

Silent cry

So we still use the changing table in her room. Greg took her up there to change her into a bedtime diaper since she had pooped. I was on the main level on my computer. I hear a HUGE crash. I run up and Greg was picking up Sara who was doing the silent cry. Oh it was so sad. Apparently she stood up, stepped off the table, hit the diaper pail and then the dresser and then the wall. Poor baby. She seems to be okay, but it scared the hell out of Greg and I. Poor Greg, he was soooo upset. Holy shit though when I heard that crash I about had a heart attack.

Regular cups

Yep, Sara can drink out of a regular cup but we try not to let her. She actually prefers to dump it on herself and then run around soaking wet

Playing with my friend

Mommy and I met up with some friends from our online forum. It was so fun! We want to play again real soon!
I loved to climb on the playset!







I love to slide!