This post needs no words ( day 11 post 18)

 

Getting ready to extubate (Day 11 post 17)

 Her left eye is bulging this morning.  They said that can happen with intubation.  Usually it is both eyes...but she keeps her head to the left.

Her renal panel ( creatinine and BUN) that looks at kidney function is still bad.  It is still barely within normal limits.  It is not back to her normal levels.  We really need her kidneys to recover.  Hopefully it will just take more time.

Her CRP ( level of inflammation) has come down.  Yea!  It is below 5 now, so they are going to send some nutrition labs including some extra labs to look at her elevated copper.

Her hemoglobin continues to drop.  She is at 6.4 today and they infuse below 6.  So they anticipate she will need to be infused again tomorrow.  I asked why her hemoglobin continues to drop if the bleeding has stopped.  They said #1) because we keep sending labs...but everything they are drawing is necessary and #2) her body is really sick.  We know that her bone marrow is making red blood cells, but she just can’t keep up with how sick she is.  It should stabilize as she continues to get better.

Her potassium was low again today, they gave more potassium by IV.  This is why I hate lasix.  It makes you pee off your fluids, then your electrolytes drop, then you give IV electrolytes and fluids, then your body hangs onto the fluids and the process starts over.  It is a vicious cycle.  But it is necessary.  

They are gathering emergency supplies to extubate ( pull out the breathing tube).  So this will probably happen in the next few hours.

There is always the chance when you extubate that you will need to immediately intubated ( put the breathing tube back in).  If they have to re-intubated it is bad.  The breathing tube causes damage and inflammation to your airway, so trying to re-intubate can cause more trauma (damage).  

They always have lots of Dr’s, Respiratory Therapists, nurses etc there when they extubate.

They usually let me be present for both intubation or extubation.  I can handle extubation, but not intubation.  I can handle a lot of medical things, but intubation is emotionally too traumatic to me.  I can’t handle it.  My emotions run too high during intubation.  

To clarify something I talked about in a previous post...her lungs being stiff.  There are several reasons for this....lots of free fluid and inflammation, her lungs are very sick, and she normally doesn’t breathe deeply, so they don’t get exercised( stretched).  

SBT-Spontaneous Breathing Trial (Day 11 post 16)

 Yesterday she spent some of the day looking like this

And some of the day looking like this ( smiling).

I clarified some questions I had yesterday.  It is not that being intubated can cause kidney damage, it is being critically ill ( really sick in ICU).  When you are critically ill any of your organs can be damaged and kidneys are one that are most vulnerable.  I asked if the damage will be permanent or temporary and they said they don’t know.  It could go either way.  The said most of the time the kidneys will recover.

I also needed direction on the culture being susceptible to avycaz.  ID had said that nothing grew out of the bronch, but the ICU drs said that the bacteria was susceptible to avycaz.  I needed a more clear answer.  The answer was that the 2nd sputum sample ( coughed up from upper airway) cultured pseudomonas and it was susceptible to avycaz.  The bronch ( fluid from the lungs-lower airway) did in fact grow nothing.

Urine looks lighter in color, which is good.  It was quite concentrated.

Overnight her urine output picked up quite a bit, which is good.  Yesterday they had added a 2nd diuretic ( pee medicine) and switched to a lasix drip ( pee medicine given constantly through IV).  She was 1.5 liters positive (has an extra 1.5 liters in her body) for the last few days, so she really needs to get that fluid off.  Getting rid of the extra fluid will help with her breathing as well.

The ICU drs are still quite concerned about her kidneys.  Please pray for her kidneys to start working again.  

Last night we restarted the vibrating vest to keep her lungs clear.  She does the vest twice a day at home.  We had stopped for a while to get the bleeding in her lungs to stop.

We are getting virtually no blood from the lungs now.

She passed her SBT ( spontaneous breathing trial) easily yesterday afternoon.  She passed another SBT this morning.

They are planning on extubating ( removing breathing tube) in a few hours.  Yea!

Her belly is still massively bloated.  Tues night she measured 85 cm.  Wed night 88 cm.  Thur morn 88 cm.  I am going to suggest we restart all of her bowel regiment.  We had stopped it due to diarrhea from the antibiotics.

She finished her 3 day course of steroids yesterday.

This morning she needed potassium again.

Her face is still red....the meds that are new that might be causing the redness...

IV Potassium, Prevacid, lasix, new type of progesterone.  Or maybe it is just from retaining fluids.  My personal guess is the potassium.

The immunology dr came by yesterday and gave me an hour long lesson on the whiteboard of how the entire immune system worked.  Hahaha.  In order to basically say she does not have an autoimmune disease.  She does have several puzzling things with her immune system.  I will attempt to explain...but the dr was highly confusing.

The bone marrow has red blood cells, white blood cells and platelets.  The WBC have neutrafils and lymphocytes.  The neutrafils are innate killers, they don’t have to be taught how to fight infection.  The lymphocytes have to learn how to fight infection.  The lymphocytes are made up of T-cells and B- cells.  The B-cells are what create antibodies ( remembering how to fight infection).  The T cells are made up of CD4 and CD8.  CD4 are helpers and CD8 are toxic killers.  

Ellies T cells were low.  Ellie’s CD4 was 211.  It is quite low.  Below 200 is deficient, so she is barely above that.  They would call this lymphopenia. 

The other immune system problem that is puzzling is that she shows basically no antibodies to vaccines she has gotten.  She is current on all vaccines as well as a few years ago she got pneumovax ( a pneumonia vaccine for elderly and people who get pneumonia).  Out of the vaccine antibodies they tested for she only showed that she had antibodies against tetanus.  She had no other antibodies to any other vaccines.  So this would be called a low vaccine response.  It is possible that it has just been a long time since she had her vaccines and she just needs a booster, but it is possible that her body just doesn’t know how to create antibodies.

We will need to follow up in the bone marrow clinic ( they do not currently have an immunology clinic....so it was actually a bone marrow Dr that was evaluating her).  They will administer vaccine boosters and then a month later do titers ( check to see if her body is creating antibodies). this

Which brings up a current point.  Please please please consider getting the covid vaccine, there are literally people who cannot get it for medical reasons and/or their bodies do not create antibodies.

The bone marrow dr may consider doing IVIG ( IV Immunology Globulin) if we check the titers and she does not show an antibody response.  This is a shot you give that boosts the immune system.  It takes over a thousand blood donations to create an IVIG shot.

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.

**********

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.

*********

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.

Good and bad (Day 3, Post #2)

 Yesterday ( Tuesday)  was a pretty good day.

I asked for a priesthood blessing for Ellie and an employee was able to come do that for her.  It immediately brought the spirit and carried peace to my heart.

We got a goodie bag of things to decorate her room as well as some gifts.  

We had lots of fun decorating her tree and opening her presents.  We painted our nails and got to enjoy her new blanket and new socks.

*****

We had a TON of specialists come in yesterday, I’m not sure I can remember all of them, but I will try.

Speech Therapy- I said we didn’t want services

Occupational Therapy- I said we didn’t want services

Physical Therapy- I said we didn’t want services.

Rainbow Kids- a team of pediatricians, nurses and Social Workers available to help with complex situations like end of life, conflicts with Dr’s, quality vs quantity of life, etc

Child life- brought the goodie bag listed above

Comprehensive Care- Drs and nurses trained to help kids/families that have complex medical needs

The person from finance that gave the beautiful blessing

2 separate visits from hematology/oncology

Pediatric Gynecology

Infectious Disease

********

Hematology——-they do not see anything concerning with her blood when they look under microscope. They do not know why the sputum has blood in it.  They do not have an answer as to why her hemoglobin dropped so quickly from Mon night to Tues.

Gynecology——-this is new.  PCH has not previously had a pediatric gynecologist.  Ellie has had her estrogen, bone density and periods managed so far by endocrinology, which is not really their specialty.  So I am so happy that they now have a pediatric gynecologist.  We came up with a new plan to lower blood loss and increase bone health.  We are switching from an oral ( gtube) estrogen to the patch.  It is better for bone health.  For now we are switching types of progesterone to a different oral one and then outpatient we will follow- up and get a mirena  IUD to give ongoing Progesterone.  This will keep the lining of her uterus thin so she won’t have periods.

Infectious Disease——- they started her on avycaz, and unusual IV antibiotic that is a combo of 2 antibiotics.  As well as vancomycin.  They are hopeful once her cultures grow out that they can stop the Vanc.  We will probably have results Thursday the 24th.

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Last night ( Tues) during the night even on bipap she was have apnea ( taking no breaths) and then  her heart rate would drop for 90’s immediately into the 50’s.  The team doesn’t seem too worried about it.  I am pretty worried, but it has stopped today, so I guess we are ok.

Resistant (Day 2 post 1)

Summary of post if you don’t want to read the whole thing...Ellie was admitted to Primary Children’s ICU  last night for an antibiotic resistant pneumonia.  She is stable.  She has been started on IV antibiotics.  We are hoping to be home by Christmas.  We would love prayers.

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History for the last few months

She has been fighting a L ear infection for months.  We do ear drops, it clears up, then it returns.

She has been drooling for the last several months.

Her breathing has been junky for the last several months, but she has maintained her oxygen saturation’s the whole time.

She has had blood tinged sputum ( junk coughed up from lungs) for the last few months.  ( more about this below)

Her hands, feet and belly have been swollen/bloated even worse than normal for the last few months.

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Things we have tried for the bloody sputum...

Ear drops

In March we had switched from Zantac ( due to it being recalled) to famotadine.  These are reflux meds.  She started bleeding a few months after switching, so we thought it might be reflux making her bleed.  So we doubled her dose of famotadine.  It did not help with the bleeding.

I talked to her pulmonologist about her being more junky and the bloody sputum.  She called in a chest X-ray and wants us to collect a sputum sample.  We started on oral ciprofloxacin ( more on this below).

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Results of the chest X-ray/Sputum...

Chest X-ray showed pneumonia in lower right lube ( bottom part of her right lung)

Sputum grew serrations marcescens and rare pseudomonas.  The serrations was susceptible (meaning it would be killed by) to cipro.  The pseudomonas was resistant ( would not be killed by anything) except colistin  out of the antibiotics they tested on it.  

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What we did about the pneumonia

Her pulmonologist felt confident that cipro could take care of the serratia.  Pseudomonas is extremely difficult to eradicate.  Usually you just hope to make it retreat a bit until it comes roaring back.

So we started on oral ( which for Ellie means gtube) ciprofloxacin antibiotics.

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Sunday and Monday

Yesterday ( Monday) was day 11 of cipro and day 7 of ear drops.

She had not improved.

Sunday and Monday she was actually worse. She needed 3 liters of o2 up from 1 liter and she still had bloody sputum.  Her lungs sounded more junky.

Sunday her left eye was dilated.

Sunday and Monday she woke up and her left eye was swollen.

She was super snotty ( upper airway).

She normally gets a vibrating vest and 2 inhaled meds to keep her lungs clear.  On Sunday and Monday I increased her breathing treatments to 4x per day.

I called pulmonology and asked if there was anything else we could do at home.  She said no, we should go to Primary Children’s Emergency Room.

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She was not in a super dangerous place, so Monday we waited until Jason got home from work before I (Mikael) drove her to PCH Emergency Department.

In the ED they ran blood, blood cultures, urine, urine cultures, chest X-ray, abdominal X-ray, covid, snot.

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Test results

No covid.  No virus ( out of the ones they check for).

Chest X-ray looked unchanged from 2 weeks ago...still had pneumonia.

Her hemoglobin was low, but not quite low enough for a transfusion, but almost.

Co2 was high.  So she was not breathing out all of the co2 that she should.

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actions taken after test results

They put her on her bipap to help blow off the co2.  Anytime you are on a different bipap setting or time frame you have to be in the ICU.  So since they put her bipap on before bedtime, she needed to go to ICU.

Her temp also dropped to 89 F while in the ED, so we took a few hours to get her warmed up with the bear hugger and warmed IV fluids.

Admitted to ICU.  Got into a room at 1 AM.

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How the night went

She was stable all night.

She dropped o2 sats into the 70’s a few times.  But after being suctioned her sats came back up.

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The plan

Her previous sputum was resistant to everything but colistin.  We have been in this situation before several years ago,  another time that pseudomonas reared it’s ugly head.  The dr’s several years ago said colistin was too dangerous.  So several years ago we used avycaz .  It is an uncommon combo of 2 IV antibiotics.

The ICU dr’s can only prescribe the common antibiotics, once they get resistant bugs, they have to call in Infectious Disease ( ID).  I jokingly call them the CDA ( from Monsters Inc).

Overnight they were able to get in touch with ID.  ID wanted to do avycaz and vancomycin.  So those are already started this morning.  I am surprised how quickly that happened.

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Tests run today

Hemoglobin was even lower today than last night and hematocrit was low as well.  So she got a unit of blood ( blood transfusion) this morning.

Another sputum sample.

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New symptom

Her palms are red and dry this morning.  Possible reaction to blood or antibiotics????

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Overall

Overall she is doing good.  Fairly stable.  We are hoping to make it home by Christmas, please include Ellie and her Dr’s in your prayers.

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Younger sister must have missed us, she slept in Ellie’s bed with Mom’s blanket.  

( or she wanted a room to herself instead of sharing with 2 sisters...hahahaha)