To bleed or not to bleed...(Day 9 post 15)

She is still intubated.  The blood from her lungs is very small now.  It has improved by at least 80-90%.  I am very relieved about this.

The Dr’s transfuse blood for hemoglobin below 6.

Sun morn her hemoglobin was 6 something.  They gave her blood on Sunday.  Monday morning it was 9.  This morning ( Tues) it was 5.6.  That is a huge drop.  They rechecked and it was 5.9.  

They gave her blood.

Dropping that fast on her hemoglobin means she could have a major bleed somewhere and we don’t know where.  They did an ultrasound of her belly and organs to try and find the bleeding.

They did not find any blood.  So the alternate theory is that the hemoglobin of 9 was false and she has been low this whole time.  That would be better news than an unknown bleed.  This appears to be true so far since they did not find any bleeding.

On the ultrasound they did however find free fluid in her abdominal cavity.  So this is fluid that has leaked out of the veins into her abdomen ( not into the stomach...but the tissues and area around her organs).  Her body needs to reabsorb this and pee it out.  When you have inflammation your veins get leaky and fluid can come out.  It is not blood thankfully.  The lasix ( med to help her pee) should help her get rid of this fluid we hope.

CRP is still increased, but it is about the same as it has been ( this shows a level of inflammation in the body).

They are quite worried about her kidneys.  Her BUN and Creatinine are elevated.  Her urine output is quite low and she is fluid positive about 1.5 liters (retaining fluid).  They have asked nephrology to consult tomorrow.  For now nephrology just wants to push the lasix ( meds to make her urinate) to get some of the fluid off.  She will now be on a lasix drip ( constant flow of lasix ) through her IV.  They will also be lowering her oral potassium to help with renal ( kidney) function. They also did a renal Doppler to check blood flow to the kidneys ( they amplify the sound of the blood flow).  They mentioned that kidneys can be damaged by being intubated.  I need to find out if this is permanent damage or temporary.

Her glucose has been in the 300’s all day today.  This is high.  They are ok with this because they started steroids yesterday.  They are doing 3 days of steroids.

Her chest X-ray is unchanged.  I said it has been unchanged for 20 days.  They said, well she is still sick.

Immunology was supposed to come today, they did not.  Maybe tomorrow.

She passed her spontaneous Breathing Trial yesterday afternoon ( Mon).  She failed her trial they did at 4 AM.  I had told them that she would fail the one during the night.  She has no respiratory drive at night.  She has sleep apnea and uses bipap normally at night.  So why would you expect her to breathe at a time she is used to not breathing?  I said I wouldn’t fight them on it, but told them I thought it was silly.

They did another breathing trial today, but she was on her right side.  She doesn’t like to breathe on her right side.  So she failed again.

We will continue to try Spontaneous Breathing Trials tomorrow, but I made sure they are not going to do one during the night.

The other reason they do not want to extubate yet is that her PIP is high.  This shows that her lungs are not pliable and compliant, they are stiff.  They are not expanding the way they should.

They gave some albumin today.

Her face and neck are red again...maybe a reaction to the lasix?  Maybe the albumin?  Maybe the blood this morning?  Maybe the presidex?

ID told me yesterday that nothing grew out of the bronch sample...not even pseudomonas.  But today the ICU drs said the susceptibilities came back susceptible to avycaz.  I think the ICU drs were confused.  I need to clarify tomorrow.

We still have a ton of tests we are waiting to hear back.  I think they have sent every blood test known to man.  

We still have no real reason for the bleeding or inflammation.  We really need rheumatology or immunology to come up with something.

  Please pray for the Drs to be inspired.

Still waiting ( Day 8 post 14)

 Using blogger on the iPad is a pain...it makes me not want to blog.  Realistically I should probably switch to Wordpress at some point, but not today.

This is going to be a really long post...lots going on.  So here is the brief synopsis...we are just waiting for lots of test results.  She is having less blood that she is coughing up.  They might try extubating tomorrow if she passes her breathing trials.

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Now on to the details if anyone is interested.

She is having major bloating and diarrhea.  They sent off a cliff test which came back negative.  The stool sample was positive for blood.  She had previously swallowed some blood, so that is more than likely why there is blood in her stool.  Blood can be irritating, so they think this is contributing to the diarrhea and the bloating.  We are doubling her lactobaccillus and adding some gas-x.

An interesting piece of news is that the hospital is not really stocking Coban anymore.  They said they had some problems with nurses doing it too tight.  I think it is ridiculous to get rid of coban instead of just training the nurses better.

Immunology stopped by this AM.  They want to send 1 more test and they will be by tomorrow ( Tues) to talk.

ID said nothing is growing out of the bronchoscopy sample.  So let me remind you what happened....

Dec 5- sputum ( coughed up secretions) collected at home. ( sputum is more upper airway)

Sputum grew serratia marsascens which was susceptible to cipro and pseudomonas which was resistant to everything except colistin ( a dangerous antibiotic).  They did not test for susceptibility to avycaz.

Pulmonology started oral cipro at home.

About 13 days later- sputum sent from PCH ( sputum is more upper airway)

Did not grow serratia ( meaning the cipro probably killed it).  Still grew pseudomonas.

Dec 25- bronchoscopy sample sent ( this was from inside her lungs ( lower airway))

We got the results back today that the bronch sample did not grow anything, not even pseudomonas, except yeast.  ID is not worried about the yeast.  So they are stopping the avycaz.  She has also been on the avycaz for 7 days, and that should be enough.

ID does not think the bleeding was from the pseudomonas.  I agree.  I think there is something else going on.

The blood that she is coughing up is really really minimal now.  I am very happy about this.  They will do a spontaneous breathing trial at 4 pm and 4 am and then possibly maybe extubate ( take out breathing tube) tomorrow.

Her potassium was low this morning, so they gave her some.  They added in some ongoing oral potassium.

Her left eye is more dilated today.  This has happened before many times when she is sick.  They have previously done lots of tests to check it out.  Their only explanation they can come up with is that she is getting ipatropium bromide aerosol in her eye ( 1 of the inhaled meds she takes twice a day).  I have never bought that theory.  This proves me correct...it cannot be nebulized particles getting in her eye...she is intubated which is a closed system...there is nothing getting into her eye.

Urine is dark.  They collected all of her urine for 24 hours yesterday to run a test.  They gave her some more lasix ( med to help you get rid of excess fluid) last night and today, so far there is not a big change.  She is several liters of fluid positive over the last few days.  

Temp is up a bit.  I feel like maybe her temp is a little higher after antibiotics.  I do not know if that means she is feeling better, or what?!?!

They are going to start steroids it will be by IV once a day for 3 days.  This should help with swelling and inflammation.

For a few days they were doing inhaled TXA to help stop the bleeding in the lungs.  There is not great evidence that this helps, but they had wanted to try it anyway.  So now that her bleeding is improving significantly, they will stop it.

Another thing we need to watch for to determine if we can extubate is if her blood levels ( hemoglobin, etc) remain stable.  If they trend down, then they would assume she is still bleeding in her lungs and they would not extubate.

I can’t even count how many blood products she has used this hospital stay.  At least 3-4 blood transfusions, at least 1-2 platelets, and at least 1-2 albumin.

They mentioned maybe in the future doing a lung biopsy, but this is a big deal...you come out with a chest tube etc.  

She has needed Ativan and morphine to tolerate being intubated.  They are switching to presidex.  It is faster acting and has a shorter life.  This will help her not be sleepy with extubation.

In the air (Day 7 post 13)

 I did not update yesterday.  It wasn’t a good day or a bad day...it was just blah...and I just didn’t feel like making a post.  So yeah.  Whoops, sorry.

The ICU dr’s have kind of been ignoring the swelling and focusing on the blood.  I think the 2 are related.  I understand that the bleeding is more urgent, but I still had some questions.  I said that last time she had resistant pseudomonas her breathing was bad and there was no bleeding.  If it is only the pseudomonas we are treating, why is breathing OK, but she is bleeding.  They said bugs do not react the same even in the same person, it is based on a lot of environmental things ( different levels and conditions within the body) how your body will react.

Yesterday and today the swelling in her hands looks sooooooo much better.  Maybe it’s the antibiotics, maybe it’s the lasix, maybe it’s the blood products, who knows.

They mentioned that Ritalin could cause low platelets.  It is just a far-fetched theory, but it is much more likely that she is just bleeding so her platelets are low.

She is starting an inhaled med that will help encourage clotting.

She is having major diarrhea ( probably from the antibiotics).  We are starting probiotics and holding all pooping meds.  Her stomach is also majorly bloated, but is still soft.  They are going to send off a c-diff sample.  ( c-diff is when the good bacteria dies and the bad bacteria takes over in your gut.  It happens with antibiotics.)

Copper is still high, tomorrow ( Monday) nutrition will consult and run some additional nutrition labs.  B12 is also high.

Lots and lots of labs are still up in the air.  We are waiting on labs for rheumatology, labs for ID, labs for pulm.  

We still don’t even know if this pseudomonas is susceptible to the avycaz she is on.  Her crp ( level of inflammation) is holding steady...it should be decreasing.

Tomorrow immunology and genetics should be consulting.

They are not giving any ibuprofen, since that can increase bleeding.  She is still intubated.  She is only intubated because they are trying to put pressure in her lungs to stop the bleeding ( like putting pressure on a cut).  Her breathing is actually really stable and really good.  She is needing morphing and Tylenol to tolerate being intubated.  They may also need to add Ativan today to calm her down to tolerate being intubated.  I think fighting the tube is a good thing, it means she is feeling pretty good.

She got no blood products yesterday.  Today she needed platelets.  Her liver ultrasound showed she has fatty liver, they are not concerned about it.

Because she is at high risk to get bed sores, they ordered her a special dolphin mattress ( air filled mattress that has different sacs that inflate and deflate.

Her blood levels are still low, but holding fairly steady, so they believe she is bleeding less, this is great news.

I asked pulm if any remaining blood would be reabsorbed into the body if she couldn’t cough it up and she said yes.  She said there are macrophages in our lungs that will chewthem up.

Rheumatology (Day 5 Post 12)

 Rheumatology came by.  They think the bleeding is just because she has pseudomonas.

Personally I think this would be strange, because she has not had bleeding with pseudomonas before and her oxygen sats this hospital stay have been great which is also unlike previous pseudomonas she has had. Also she has the hand and feet swelling.  I think she has pseudomonas as well as something else going on.

Rheumatology is sending off a bunch of labs.  They said that the rheumatology labs that picu sent were not the best type of labs to send.

Rheumatology also wants genetics and immunology to consult.

Rheumatology also said that her copper was high and b12 is high.  She thought these were unusual.

She has remained intubated today and will stay intubated overnight.  They hope that this will be like holding pressure on a wound, and might help the alveoli to clot.  This is the only reason she is still intubated, she is actually awake and breathing well.

She coughed up a bunch of blood this evening, without us even stimulating a cough.  Normally coughing up junk from the lungs is good.  But with the blood, she could be breaking off clots and restarting bleeding.  We just don’t know.

Her hemoglobin is down again, but not quite low enough to transfuse.  But they are switching to checking hemoglobin every 4 hours instead of twice a day.  They will transfuse if it drops below 7.

Mom’s holiday meal ( day 5 post 11)

They gave parents a free Christmas meal.  It was delicious (I’m serious...I love hospital food...I don’t have to cook or clean!)

Update ( day 5 post 10)

 This was supposed to be added to the previous post, but I am having problems editing it.  So it gets a new post.

So far lung bleeding is not worse from the bronchoscopy.  

Pulmonologist did not see any clots.  I asked if this was good or bad.  The Pulm said neither, she was just surprised.  She thinks it is probably due to her platelets being low.

Back from OR (Day 5 post 9)

Before the OR

J

After OR.  She is on her normal bipap settings, which is fantastic.

The liver ultrasound shows she has fatty liver.  I am not sure if we need to do anything about this.

They have not done the Heart Echo yet.

Platelets were low this morning, so she got a unit of platelets before going into the OR.

Her CRP (level of inflammation) was down a bit yesterday (down is good), but it was up a bit today.  When it is going down they assume that they are on the right antibiotics.  They are not stressed yet that it was up today and they expect that it will be up tomorrow due to the bronchoscopy irritating her lungs.  They said we just need to give a little more time to see where it trends.

They are continuing to run and draw lots and lots and lots of tests each day to try and figure out what is going on and see if there are any solutions.

She is back from the OR where they did a bronchoscopy and endoscopy.

The bronchoscopy ( looking inside the lungs) they can only go into the big airways, not the small airways. But both lungs have blood in the bottom parts of the lungs.  She could not see any active bleeding because there was too much blood and the bleeding is probably coming from the smallest airways.  She did 3 large suction amounts which they will send for cultures to see if there are any unusual bugs or things growing. She thinks she may not have enough for the large amounts of tests that infectious disease wanted to run, but ID prioritized what they thought was most important. This will take several days to get back the results.  Sometimes high dose steroids can help stop bleeding in the alveoli, but they don’t want to blindly do steroids, because steroids can make infection worse.  They will wait until the cultures come back if possible.

The GI saw some gastritis in her stomach.  This just means irritated stomach.  This is probably just from being chronically ill.  They are switching her acid reflux med from famotadine to Prilosec.  They took biopsy just to be sure.

She came back to ICU still intubated  ( breathing tube in mouth).  This will allow her to rest a bit and the ICU can extubate ( remove breathing tube) on their timetable instead of feeling rushed.  Pulmonologist had mentioned that if she needed more samples she can do that bedside through the intubation tube, so the team will check with her ( pulmonologist) before extubating.  

Operating Room ( day 4 post 8)

 

She was nice and pink...probably from the vancomycin ( which they decided she no longer needs).  They call it “ red man”.  It is a known side effect of vanc.  It does not mean an allergic reaction or anything.

Because her bleeding was worse, pulmonology did a CT with contrast.  It showed  Difuse Alviolar Hemmorage.  Basically the smallest airways in her lungs are bleeding.

They are going into the OR tomorrow ( Christmas Day) to look at her trachea and esophagus.

If GI sees something in the esophagus they can probably fix it.  But that is unlikely since on CT they could see the bleeding in the Alveolas in the lungs.

The airways in the lungs cannot be cauterized or stitched or immediately fixed.  

Pulmonology will get fluid sample to culture and GI will take a tissue samples to biopsy.

Pulmonology wants to see if there are any other strange things growing in there that could be causing the bleeding.

There are increased risks with the bronchoscopy ( the pulmonology portion).  She is already bleeding, so going in can make it inflamed and make the bleeding worse.  I am worried about this, but we have limited options, so Jason and I feel like the risk is justified.  But I am quite worried nonetheless.

They will be running the following tests bedside...

Looking at her heart with an Echo to see if she has pulmonary hypertension, which can also cause bleeding and hand and feet swelling.

And an auto-immune specialist has ordered blood tests since this lung bleeding as well as the hand and feet swelling can be caused by several auto-immune diseases.  They will come talk to us after the tests are back.

The sputum sample they sent several days ago confirmed the pseudomonas that was also seen on the sample from Dec 5.  The serratia marcescens is gone, which means the cipro she took at home killed that.

They are still waiting on susceptibilities on the pseudomonas (this tells which antibiotic will drive it down).

They are doing an ultrasound on her liver.  Liver problems can also cause hand and feet swelling.

I am asking for prayers that everything will work out.

Blood in stomach ( day 4 post 7)

 She is struggling a little more to breathe.  We are switching back to bipap.

Now there is blood in her stomach.  They can see it when they pull back stomach contents from her gtube.   It looks slightly more brown, so we think she probably swallowed it rather than there being bleeding in the stomach.  Things are escalating.  They want to go look at her trachea and esophagus.  But they are unsure if they will be able to make it happen with the holiday.  But they are going to push for it because this is growing into a bigger problem.

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Jokes about blood...

I tried to donate blood today, never again!  There were too many questions.  Whose blood is it?  Where did you get it from?  Why is it in a bucket?

My Dad puts his blood sweat and tears into every endeavor.  That probably explains why his restaurant failed.

2 blood cells met and fell in love.  Alas,, it was all in vein.

Bleeding is worse ( day 4 post 6)

 The blood she is coughing up is worse.  There is more and it seems to be clots now.

Vampire ( day 4 post 5)

 Last night she was able to go onto the nasal cannula on 2 liters of o2 for a few hours ( amazing).

Ellie is becoming a vampire unfortunately.  She has an unquenchable thirst for blood.  JK

Her hemoglobin was low again, so she needed another unit of blood today.

When she coughs it is still bloody.

They think the 2 are related.

I am not sure what the plan will be.  I need to wait until the ICU team rounds as well as ID to see what the susceptibilities are on her bugs.

I kind of get the feeling we won’t be home for Christmas, but I am still hanging onto a thread of hope.

She had a good night overall...no Brady’s (drops in heart rate), only o2 desalts were during suctioning.  HR was in the 90’s all night ( good).

PICC Success ( Day 3 Post 4)

 We got the PICC at bedside with conscious sedation.  This was a big step towards going home.  We were told if they were not able to place it bedside, then we would not make it home before Christmas because IR ( Interventional Radiology) is booked.  

Still a few more things that need to fall into place before she can go home.  We are still hopeful.

Sitting up and PICC ( Day 3 Post 3)

 She woke up this morning with a fever as well as her heart rate was up.

I noticed that her humidity had been set on the hotter temperature, so I am hopeful that that is the reason.

We gave her an ice bath as well as Tylenol and ibuprofen.  We got the heart rate and temp down, now we just need to see if it stays down.

We gave a tiny dose of lasix to help her pee out some of the extra fluids she is holding onto.

She got to sit up for a while.

The team is frantically trying to get us home for Christmas, they really are.  We are trying to address the immediate concerns and then handle everything else outpatient.  

*****

Things that need to happen to go home...

No more fevers or heart rate spikes

Susceptibilities come back showing that avycaz will kill the bugs. ( this will probably happen Thur)

Her breathing improves so that she does not need cpap during the day.

Get a PICC line so she can get IV antibiotics at home.

*****

Things to follow up on outpatient...

Cardiology, nephrology, immunology to look at hand and feet swelling

Upper GI scope as well as bronchoscopy to look at esophagus and trachea to find source of bleeding and gather samples. Place IUD at the same time.

Follow blood to make sure hemoglobin, hematocrit etc are stable.

*****

They are coming to try to place the PICC at bedside with conscious sedation at 2 pm.  If they are unsuccessful, then we will probably not make it home for Christmas because interventional radiology ( IR) is booked.