I know there has been talk of removing the drains, but I’m not 100% certain that has been done yet.
There are also some blood clots in her legs than they are treating, but they have to do it very carefully and very slowly with the array of other issues.
She was at an acute care rehab nursing facility until a couple days ago. She hasn’t had any improvement in a very long time. She is now at UCSD. They are talking about inserting a feeding tube directly into her stomach because her digestive system seems to have shut down. They think this is because she was on a liquid diet for so long and in combo with the other issues her body just doesn’t know what to do with solid food.
At one point she had received some blood at the hospital, and then the acute care place gave her more blood and that has made her sick because she ended up having way too much. Now that she is at UCSD, ONE doctor (the head of the blood team, I guess?) is now in charge of all of the decisions. Up until this point there were just too many people making too many decisions and nothing useful was getting done but many counterproductive things have happened instead. She sounds confident that there won’t be any more stupid mistakes made now that she is in the hands of this particular doctor.
They are running a bunch of tests on her blood to see what is going on, and that takes time. She has a cold and sounds absolutely terrible. On top of that she sounds lonely and depressed and she just wants to go home.
Otherwise – here are the 2 most recent updates from my grandpa Les from last night:
7/30/12 – 3:30pmTalked to Michael,
Lori’s nurse, 10 minutes ago. She is napping. Her IV pick line
was clogged and they are working on that to clear. Doctor does not plan to
insert feeding tube into her. She is now in what is called Eleven
East. In room 1105.
Michael is on duty until 7:30pm tonight. I will try to talk to her this
evening around 6-7pm. She has her flowers and they know it is her
7/30/12 – Just talked to Lori. Sounds weak and
lungs full of stuff. Coughing with lots of stuff in lungs. Doctor
thinks she has clot in her lungs that is also causing her breathing
problems. This is a teaching hospital. The liver team is trying to
find her a liver for transplant. Infection team trying to figure
“what’s wring with her lungs”. The doctors see her each morning with their
team. She said it was like “House” the TV program. Said she
heard from Jessie, Sophie, Corey, Bailey, and Jodi today. Has not eaten today
and said they are holding off as they might be doing surgery tomorrow. Won’t
know until tomorrow. Told her to ask for food or find out
They decided against the feeding tube directly into her stomach because there is just too much going on in her liver/kidneys/bowels. I’m personally glad because to me it sounded like one more site to open up for an infection. Instead they put the big blue feeding tube up her nose and down into her stomach again. They said it would be the best/fastest way to bulk her up and get her good nourishment too.
She’s been happy with her care at UCSD and said she’s had all really good doctors so far and the stuff they are explaining to her makes sense.
I got her Dr’s name and did a quick google search of him. It looks like
he is the UCSD Medical Director of Liver Transplantation. I think he
sounds like a good guy to have calling the shots in mom’s case.
We had to get off the phone because someone came in to take her for an x-ray real quick, but I am calling back in a little while when my next patient no-shows on me. She gets tired out/winded pretty easily from talking, so the break in conversation is good probably anyway. Then I can get some more info out of her when I call back 🙂
I did ask her about the drains. She only has one of the two now and that is the original one from the site of her splenectomy that looks like a little hand grenade.
Her sense of humor and sense of hope were detectable today.
They weren’t fine. They weren’t working.
Listening to my mom try to tell them that was kind of hilarious on my end but I imagine it was frustrating and exhausting to my mom so I need to keep my giggling about it to a minimum.
The x-ray was just to see if the feeding tube in her nose was situated properly. Her primary doctor that she really likes and trusts will be informed daily or almost daily now, too – this was an issue in the past that won’t happen again.
For some more clarification, yes, this doctor is the director of liver transplantation, and my mom IS on the list for a transplant, but ALLLLL of this other stuff has to get under control first.
Dr. K (the head cheese of livers) and Dr. N (mom’s primary head cheese) have quite the team under them now. Like a neatly organized tree/hierarchy would be on the show House.
- Dr. K, MD & Dr. N, DO = Head Cheeses
- Dr. D. = Cheese Surgeon
- Intervention Radiologist
- Blood team
- Liver team
- Rehab team
- Infection disease team
That’s a lot of cheese.
Also, I’m enjoying this site. I am feeling good about how informed I will be able to keep you guys and I’m feeling even better that soon my mom will have the laptop at the hospital and will be able to read your notes of support and encouragement and prayers in the guestbook section. It will mean so much.
In the meantime, here are 2 pictures of my mom that my aunt Winona emailed me today. Love them.
Lori is making progress bit by bit. Her nose feeding tube got re-arranged so now isn’t kinked or as painful (uncomfortable as one would expect, but not as bad as it was) so she can get food/calories that way, though she is trying to be consistent on the liquid diet (Ensure and such) to keep working on getting her stomach used to food intake again. Good news from the Blood Doc’s – the tests came back negative on her being susceptable to getting a lot more blood clots. She is coughing up the gue in her lungs and along with the anti-biotics, seems to be moving in the right direction on clearing the lungs up. The Head Cheese didn’t get in to see her yet today as she was so busy with all the other folks taking care of her, but she knows he’ll either be in later or tomorrow to catch her up on the latest liver news. She started some Occupational Therapy – sitting up and getting out of bed, walking a bit, which she said felt good to do – even if it’s only a few steps here and there – progress! She definitely appreciates everyone’s prayers, love, and support – thank you!
Wanted to let everyone know that Lori was moved to the Cardiac Care Unit sometime last night/early morning. Mostiy because of the MRI/Lab results that are very disconcerting to the doctors. I just got off the phone talking to the Charge Nurse (her personal nurse is Marietta). The doctors are in the room with Lori now talking over the options/plans with her. Their also managing her blood sugars and giving her blood. Sherri said I could check back in a few hours for an update on any decisions/directions being made for treatment – it’s quite complicated she said with all the different issues going on. The direct # to the nurses station for updates is 619/543-6592. Lori doesn’t have a phone in her room but she does have her cell. I will post more as I get more information.
Keep up the prayers!
I just got off the phone with Lori’s ICU nurse Marrietta(correction on the CCU mentioned earlier). A very nice lady who definitely wanted me to get all the updated info on Lori and answer any questions I had. Lori did not get the MRI done last night, it was just the lab work – they are trying to get her in later today for the MRI. The critical issue last night was dealing with the vomiting with blood, her vitals being very unstable, blood sugars very high, she was very dehydrated and enemic, and in a lot of pain from the feeding tube down her nose as well as just the normal pain she’s been in. They completed a Endoscopic procedure a little while ago which, thankfully, showed that the bleeding in her stomach had stopped and was probably caused by the fact that her stomach lining is so weak the nose tube iritated the stomach lining enough to cause the bleeding. That has been removed now. She’s on insulin to get her blood sugars stable, she’s getting IV liquid for the dehydration, and the pain med’s the doc’s have allowed seem to be working at the moment. She’s actually stable and comfortable right now according to Marrietta. Her personal doctor from Vista, Dr Novak, called earlier today so he’s up to speed on her status also. Lori is a tad groggy at the moment from the Endo procedure, so Marrietta suggested on waiting a few hrs to call Lori on her cell. Maybe by then she’ll have had the MRI or some other doc visits. Either way I’ll make another call this evening and do another update.
Thanks everyone for the continued prayer support – it has and will continue to mean everything for Lori’s healing-both mentally and physically.
She is being moved out of the CCU back to the Intermediate Care Unit where she was before. That should be happening in the next hour or so. The number to that floor is 619-543-5280. You can call there and be transferred to her room (which we don’t know yet). This unit is a step below the ICU (I as in “intensive”).
They are still going to do the MRI, but they are going to have to knock her out for it. I think they will learn a lot from the MRI, whenever it finally gets done.
She didn’t sleep very well last night but has gotten a lot of rest today. Bailey called Tim last night and he happened to be up there so she got to talk to mom and said she sounded very clear and perky at the time.
Something made her start throwing up again a little, so of course a bunch of crap went into her lungs which essentially drowns her a little, so she has spent a lot of time today coughing all that crap up.
Rightfully so, the liver team of doctors is concerned about her mental state. Being in her situation is downright effing depressing. She’s 50 years old, doesn’t have a lot of family nearby, and has a lot of major things going on with not much answer or end in sight at the moment.
Pray for her please. Sign the guest book. We read the entries in there to her. She needs to know that people are there for her in spirit and heart.
She’s really tired and queasy right now. Her abdomen is a bit distended so they gave her an enema which she will probably someday kill me for saying so I’ll just cross it out and pretend it didn’t happen a little something to help take care of that.
She saw the speech therapist and is on a soft (NOT pureed, thank goodness – blech) diet and drinking ensure. Being able to eat again is number one on the long list of things she needs to be able to do before she can get out of there.
She’s still waiting for the MRI and a visit from the psychologist and physical therapy and people are starting to get mad that those things haven’t happened yet.
Other than that we just talked about Bailey’s trip to Wisconsin (she’s back in CA now), and cute things my kid does.
As always, keep up the prayers and positive thoughts, and please sign the guest book – we read those entries to her when we can.
Sorry for the lack of updates this last couple days. I’ve called up to the hospital twice and once she was asleep and once there was no answer directly at her room. I will try again tomorrow and post again!
I’m sorry I didn’t get in yesterday to give a bit more on Lori than Jessie – I was able to get thru to the doc’s and talk to Lori on Saturday. But, that being said there wasn’t a whole lot new to give. Lori was at least a lot more understandable and I was able to have a real conversation with her. Both the nurse and Lori said that though she did have an MRI done, they weren’t able to do as complete of one as they wanted to, because of how stressed she gets in those things. But, they also weren’t sure whether they’d try anymore or not. And although, she is pretty stable at the moment, she still hasn’t been able to get over the vomitting afte the eating routine, so getting nourishment thru the IV is still the only way she’s keeping weight on. Her infections seem to be under control, thankfully. All the different doctor teams are still working on coming up with a long term plan. So right now we need to keep praying for wisdom for those doctors, continued strength for Lori to perservere until they can figure out how to help her, and hope and trust for her and the family in knowing that God is in total control and will see them thru this journey. “God is our Refuge and Strength, a very present help in trouble.” Ps 46:1 “And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear.” Isaiah 65:24
I called to talk to her last night and her nurse answered the phone. They were about to take her for a CT scan on her pancreas & chest but I asked for a quick update anyway and that’s what she told me. That the doctors are close to giving her the “seal of approval” to go home. And that there was supposed to be a family meeting with the doctors (today) to talk about that.
But she’d be going home TPN – getting her nutrition from an IV.
Whaaaat? I know they make portable walk-around with it versions but…well…she’s not real portable or walking around.
I KNOW she is down and I KNOW she wants to go home really bad or be anywhere but the hospital but IN WHAT WORLD is THAT a good idea? The house is not in order whatsoever, it has 2 floors, and she’d be home alone.
No no no no no. Just no.
I hope to have a better and clearer update later, but this is where mind mind is right now.
She threw up 4 times in the CT scan last night (fun!) but doesn’t have any results yet.
She sounded more alert and with it and stronger than she has in a long time. The meeting is at 2pm pacific time with my mom, Tim, Alexis, Bailey, and all the doctors. And I think a person that will arrange/coordinate all of mom’s home health care. So…yep…the plan is she is going home.
She says she’s moving around a lot better and will have to use a walker for awhile though. The first 3 weeks or so are going to be super critical. I worry about her being home alone much or at all. She’s going to need several neighbors on speed dial. Tim says he is taking some time off of work, but I’m not sure how much or how that is going to be possible. Alexis and Bailey both have a couple weeks before they start school and they are going to need to spend more time at home than they have been so feel free to remind them if you see them 🙂
She is excited at the prospect of going home and it has clearly lifted her spirits, but of course there are more concerns. I’m going to look into hiring someone for a deep cleaning and talk to Tim about replacing filters and stuff in the house because I’m afraid of her inhaling something that will give her a lung infection or aggravate allergies that will turn into a lung infection. She’s already down 1 lobe of lung…let’s not burn up the other 4.
She would be taking IV nutrition each night and trying to eat during the day. She is excited for her own food of her choice at her fingertips with flavor and not nasty flavorless broth that was surely concocted in the depths of hell by satan himself. She feels that this will help her stop getting sick and re-learn how to eat and keep food down and get some weight on.
So…I’m skeptical about this hospital discharge but 1) It is out of my hands, and 2) it’s not up to me, and 3) the decision isn’t mine to make, and 4) at some point I have to trust these doctors, and 5) I need to trust my mom and her judgment on this because [see 1-3, that all say the same thing].
And my sisters need her.
The road ahead is still long, people.
Very very long.
We/They/NO ONE knows what the problem is yet. Make that number 6 on my list of skepticism. My mom thinks that they know too much now and are freaking out or missing obvious stuff. From watching her own scans, she thinks it looks like there is a hole in her pancreas and that fluid is leaking out. Hopefully the CT scan from last night will show SOMETHING.
So…that’s the latest. Keep praying, keep signing the guest book.
At the end of a rather long hard day yesterday, once again my Lord comes through when I need a word of encouragement. The chaplain at the hospital, who I had originally called back when Lori was in intensive care, called to give me an update. It was the 1st such call, which he apologised for, but he or one of the other chaplains had made several visits with Lori over the last couple weeks. He wanted to let me (and everyone) know what a “sweetheart” Lori is, what a trooper, what a committment she has to her kids, and how she definitely understands how Jesus is working in and through all these events – because she has seen 1st hand the answers to all the prayers being lifted up for her. He said her biggest concern is the time lost with the girls at home still – but that he than shared with her how the Lord can and will redeem those days. He reminded me of trusting in God’s plan and direction in the days ahead.
While I was out running this morning, in the wonderful heat and humidity that is SE Georgia at this time of year (even at 0500), listening to some really good Christian artists singing God’s Word, I was also reminded to “lay my burden down, cause I (the Lord Jesus) will carry you”. My good working buddy, Liz, shared the following with me also after I got to work which I want to share with everyone –
How to Hold On
Read | Psalm 37:5-7Job was a man who certainly knew trouble and temptation, and yet he boldly claimed, “Though He slay me, yet will I trust Him” (Job 13:15). That is commitment. Job had lost his children, his fortune, and his health, but he refused to abandon faith in God. The stricken man was determined to hold on because he trusted the Lord to do right.
Unwavering commitment to trust the Lord in all situations is a cornerstone of unshakable faith. From the vantage point of that foundation, we can focus our eyes upon God alone. It is easy to be distracted by circumstances and allow them to dictate our emotions. But if that’s the case, then when life is good, we’re happy; when times are tough, we’re frustrated; and when hardship pours in, we’re downright miserable and looking for escape.
Unlike Job, we are fortunate to have Scripture, which reveals God’s nature and promises. And it is a wise believer who claims those promises when enduring hardship. For His Word tells us that our Father is always good, always just, always faithful, and always trustworthy. When we take our eyes off the whirl of day-to-day activity and concentrate on honoring Him and following in His way, we find a consistent peace that carries us through both plenty and poverty.
In order to hold on to God through any trial or temptation, commit to trust and follow Him all of your days. Lay claim to His promises: The unchanging Lord and Savior (Heb. 13:8) is committed to caring for you in all circumstances (1 Peter 5:7) and will never leave or forsake you (Heb. 13:5).
Amen to that – I hope everyone continues to pray for Lori and the family as they still have a lot of circumstances to deal with, but that through it all they can see God’s guiding hand directing them.
Sorry about that.
Last night Sophie was in a chatty mood so we called mom up and Sophie sang her lots of songs. I know a singing toddler can lift just about anyone’s spirits, but she sounded really good as soon as she answered the phone. Her voice was strong and clear and even upbeat. It was a relief.
The day before yesterday they did a test where she had to eat one of two things that were injected with dye within 10 minutes, and then lay down while a camera followed the dye for a couple hours to see where things went. No results from that yet. Her 2 choices for food? Oatmeal or egg salad. SERIOUSLY?!?! Egg salad? From the hospital? For a digestive issue? Does that sound like a terrible idea to everyone else too or just me? Obviously my mom’s decision there was a no-brainer.
Egg salad. :::shudder:::
What kind of option is that?
She is getting better at eating, but still getting IV nutrition. They are waiting on giving her an MRI still. She has to go under anesthesia to do the MRI so they had to order some special part for her to do that. The part hasn’t come in so if it might be a bit, they are talking of letting her go home and then coming back for the MRI as an outpatient. The doctors and pharmacists are working out a medication/IV plan for her to still get everything she needs in the right combination but as little intravenously as possible in order to send her home.
SO. She could be going home any day. The prospect of that has lifted her heart and spirit so much that any reservations I have have taken a backseat to how happy it makes me to hear my mom sound so strong and optimistic again.
Yes, the house needs a cleaning. Perhaps the deepest cleaning ever. And probably some filters changed throughout the ventilation in order to keep any allergens and other potential icky out of her lungs, and none of that is or will be a small task, but she’ll be happy to be there.
Alexis leaves for college soon and they could really use some quality time together before she leaves too.
So there you have it folks…keep up the prayers and guestbook – they’re working.
Yesterday she had some tests done in radiology where she drank some barium drink and they did x-rays to see what it did. They figured out that she’s basically got acid reflux in it’s worst possible form and it is tearing up her insides because her body can’t handle it well and that’s why she can’t eat and why she’s throwing up so much.
She still sounded really good. A little tired and annoyed (rightfully so) but good.
I was wrong before when I said they were waiting for some part for the MRI…that “part” they are waiting for is an anesthesiologist. Apparently one hasn’t been available in 10 days to come knock her out and give her the MRI. What kind of bullshit is that? TEN days? Someone go drag one off the surfboard or golf course. You know that’s where they are.
So as of last night, if they hadn’t gotten one scheduled for her in the next day, they were going to let her go home and come back when they finally DO drag one off the golf course and do it as an outpatient procedure.
So maybe she’s going home today…and maybe not. I will update as soon as I know!
I tried calling last night and there was no answer but Bailey called me back right away and told me that the nurse was there doing some stuff so she couldn’t talk right then. It was getting pretty late for me by then so I told her I’d give them all a call tomorrow.
I know she’s happy to be home and so far things are going ok. Hopefully I’ll know more later today.
They did finally (FINALLY) get her that MRI…but they said they didn’t get very clear pictures? REALLY? How is that possible? She was knocked out for it and so laying totally still…but no clear pictures? Give me a break.
I don’t get it.
But she’s home. And maybe she’s reading this. Hi mom!
Keep up the prayers and guestbook!
On the 9th Tim called to tell me that mom had him call the paramedics to take her to the hospital because she was in a lot of pain and throwing up again.
On the 10th my grandpa Les updated us with this:
Talked to Lori a few minutes
ago. She was admitted for an obstructed small bowel. She sounded tired and weak. Her nurse is on lunch break so she is
to call me when she returns so I can get more info about her
condition. Lori’s bed phone is xxx-xxxx. she is in room
229. She said that is was ok to call her but not more than once a day as
she needs here rest and sleeps a lot. Also she said that around 7AM that’s
in the AM is the best time to call her. That time is PDT not your local
time. As we each learn more don’t forget to share the
information with the rest of us so we don’t have to duplicate things. love
to all. dad/gp
September 13th, grandpa Les sent this:
Just talked to Lori @
10:40PDT. She is scheduled to go home either today or tomorrow and be an
out patient. Yesterday her kidneys shut down but they were able to fix
that with antibiotics and today they are working. They think
her problem is where the spleen was taken out but having checked there can’t
find a problem. She is down to 86 pounds. Dr. N is meeting with
other hospital doctors today to discuss her problem to try to figure out
what is wrong and what needs to be done to fix all of her problems. (We’ll
see). Her phone number I gave you was wrong. She gave this one to me
this morning saying that phone numbers in the area were having problems the last
couple of days. ______ Try that one. She is on
medication and somewhat droggy but will talk to you if you call.
Jodi talked to her last night and here is the update from that:
I did get to talk to Lori early evening my time last night, and she sounded pretty good. Not groggy anymore. A whole lot better than the last time I talked with her a week ago. She had just done some walking around and was still waiting to see if they were going to discharge her last night or this morning – my guess would be today. I told her I’d check in this morning sometime and see if she was there – she said if not, we can reach her at home on the home number – no cell phones are currently working. She’s hoping to make phone calls to the bank on the house payments, both the state and work long term disability coverage (both of which are having issues – because we all know that she so doesn’t qualify, right?) Love working with insurance – private, state, federal – all do their best to frustrate and slow the process down for people who really need the help. Anyway, will let everyone know if I find out where she is today. Love to all –
So that is the latest. Sorry to throw it all at you at once. As usual things have been crazy busy and info was hard to get this time around. She should be going home today but I have no idea what was done to solve the bowel obstruction or what to expect from it in the future – same for the kidneys.
Still no answers. Never an answer.
Can we bring her to Minnesota to the Mayo Clinic?
Minnesota Mayo is an excellent idea! I have had so much help from the one here in Jacksonville, FL since we moved to this area, and having used the facility in Arizona when we lived there – I can only speak very highly of the place and all that they offer!
I did speak to Lori a bit more about getting away from SanDiego and it seems she is slowly coming around to the idea – we just need her “go” word and we can start the plans. She was still in the hospital about 2hrs ago, but she said they were working on the plans/paperwork for her to be discharged, so maybe later today.
We’ll keep praying not only for her physical healing, but also for her to be able to think clearly on making wise decisions for herself and Bailey.
She is 5’7.
Oct 18, 2012 10:22 AM
Since I’m unable to update thru the Journal right now, I wanted to get word out to all our family and friends, that Lori went home to be with the Lord this morning, Oct 18, 2012 at approx 0820. Jessie and I were with her during her last few breaths – though Lisa had been up with us all through the nite also, while Lori battled staying ahead of the filling up of her lungs. It was a definite answer to prayer that the last few minutes of her life were peaceful without the gurgling/drowning struggle she had been experienceing for the last couple days. She slowly started breathing clearly and within a couple minutes drifted of into the arms of the angels waiting to take her home to heaven. She is so much more at peace now, she isn’t suffering any longer. We are all so grateful for the many prayers that have upheld us all during this journey – we could not have done it without your loving support and consistent prayers. Continue those prayers – especially for Tim, Jessie, Alexis, and Bailey as they now have to live on without their wife and mom. We don’t want them to forget how much they are loved and cared for. We love you and we pray God’s richest Blessings on you all!