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.  

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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.

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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.

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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

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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.

*****

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.

*****

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)

Home (Day 8 Post 10)

 (Update for Monday)

Another long day.

She was still having high temps and high heartrate as well as several episodes of biting her bottom lip (possible seizure?!?!?!?).

We got a new Dr. Mon morn.  They had a totally different take on the plan of action.  I just wanted to go home and wasn't willing to fight them on it.  I said I wanted to go home.  We agreed on being discharged.

ENT said they were coming by, so we waited half the day for them to come.

Then she started rolling her eyes up into her head, we didn't know if it was a seizure.  They wanted to do an EEG.  I said we have never gotten any information from EEG because her brain activity is always abnormal.  So if you compare a new abnormal EEG to an old abnormal EEG you get no info.  They said they would definitely be able to get information from it.  I said they were blowing smoke, but sure, go ahead and run it.

When the EEG was done they said "we don't see any new seizure activity", which I think was their way of saying it is an abnormal EEG and we can't get any information from it...hahahahaha.

Then I wanted to clean out the EEG gunk from her hair at the hospital where I had help and didn't care if it made a mess pouring water on her head.

By the time we finally left the hospital it was around 5ish (I can't even remember...it is a blur).

Ellie smiled a few times on the way home.

My back was out for 2 weeks before going in the hospital (I had been going to the chiro and getting massages etc) and then a week sleeping on a hospital bed didn't help.  It was really really nice to sleep in my own bed last night.

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Update for Tues (Today.... at home)

HR got a little high during the night as well as another biting her bottom lip once during the night.

Overall she is doing well.