Day 37: "Hold On (for one more day)"

So the movie "Bridesmaids" cracks me up!  I saw it at the theater with my mom and sisters, and a couple of weeks ago, Brian and I rented it and watched it.  I am sure we were quite a sight snuggled up on the cot, sharing earphones and cracking up as Emmy… slept.  At the end of this movie, Wilson Phillips performs their song, “Hold On”:    http://www.youtube.com/watch?v=M5MAYw_77_o

This song has been STUCK IN NY HEAD ALL DAY!!!    "Why?" you may ask.   Because we just have to HOLD ON ONE MORE DAY for extubation!!!

Okay, let's not get too ahead of ourselves.  If you remember the post from last night, we were concerned for two reasons:  1)  Emerson would slow down her breathing so much that the ventilator would beep and tell us that "the patient is not working."  We were afraid that she was apneac.  2)  She was vomiting her feeds.  Both of these things seemed like they would postpone extubation, which was very disappointing.

HOWEVER, during rounds today, Dr. Webster was impressed by how active Emmy was; she kept kicking and moving her arms.  We also noted that every time she has vomited- which was quite a bit on and off this morning- it was during a volume support trial and almost always after/while coughing which caused her to gag.  Another point noted was that Emerson never STOPPED breathing, she just slowed down a lot.  So she was never apneac, but hypopapneac- she never stopped breathing, just slowed her breathing.  While her respiratory rate was low, her CO2 was fine, and usually a higher CO2 is what triggers you to breathe more.  Obviously, Emerson did not feel like she needed to breathe more when she was sleeping if her CO2 was still okay.  So Dr. W. said that she thinks Emerson is telling us she does not want to wait for extubation another day; she wants that tube out sooner!  So that's what we are doing.  We stopped her feeds and gave her a saline drip to hydrate her.  Then, we put the vent on volume support and instead of doing this trial for 8 hours, as planned, we are going to do it for 24 hours.  If Emerson does well on the trial, we will extubate her TOMORROW.

Still, this will be a difficult 24 hours.  So far, Emmy has done well; she has been wide awake, though, since 1 a.m. and is still kicking and awake, so we'll have to see how she does when she DOES decide to sleep.  There is a possibility that her CO2 levels will rise, or Emerson will get too tired.  We will have to assess problems as they happen and go from there, but if she does not do well, we will not be extubating tomorrow and we will have to talk about alternatives.  We’ll just take it as it comes, but most are optimistic that Emerson will do well.  She is much, much stronger, more awake and more alert than last time.  Plus, her chest x-rays look great. 

So this is why I chose the Wilson Phillips theme song today.  I just want to sing to her, “Yeah, I know that there is pain/ But you hold on for one more day and you/ Break free, break from the chains…Don’t you know things can change/ Things’ll go your way,/ If you hold on for one more day…”

Yeah, I know.  Now you have it stuck in your head, too J.  You’re welcome. 

Day 36--"Everything was Beautiful and Nothing Hurt"

Emerson had an okay day.  She seemed to handle feeds well, so they kept increasing the amount she gets through her tube each hour.  This morning, she threw it all up because she had too much air in her stomach, so we stopped feeds for an hour, started up again, checked her residuals (remember?  this is the nice way of saying the stuff we pull out of her stomach, measure, pour into a cup and then push back into her stomach) and she was ready to increase again.  So we are up to 70 mL of formula an hour (our goal!).  So this is all good.

The plan, if you remember, is to train Emerson for extubation.  It is like traning for a marathon... but in a few days. (I am thinking of making a mix cd for this training.  My brother in law will be happy to know that the two songs that immediately come to mind for this mix are from Rocky:  “Getting Stronger” and “Eye of the Tiger”). Two days ago, we did a volume support trial for two hours.  Yesterday it was four.  Today it is six; tomorrow is eight, then 12, then 24, then extubation.  I really like this plan.  It is a good work out regime, and- I think- the best we can do to work those weak muscles.  The plan, though, will have to be adjusted if Emerson cannot/does not respond well.  Yesterday, Emmy was a rock star.  She handled that four hour trial like it was an insult- too easy.  The only problem is that when it was done, she let the vent do all the work for her instead of breathing above it.  I don't think she was pooped; I think she was just being a bum.  Today, 2 1/2 hours into her 6 hour trial, Emerson stopped breathing.  The vent beeps and says "Patient not working" and it waits however many seconds for her to start working again before breathing for her.  It also beeps if Emerson's respiratory rate hits 10 (that is low).  So anyway, she stopped breathing, and when I grabbed her hand and tried to get her to wake up, she wouldn't.  Luckily, the nurse just lifted her higher on the bed which woke her up and caused her to start breathing on her own again.  She has two more hours of this volume support test.  She is currently breathing at a rate between 11 and 17.  I am really, really bummed this test did not go well today, but I guess I should not have expected each test to go perfectly.  We consulted the doctor and we'll see what she says she thinks we should do from here.  I am guessing that if I make that cd and play it for her on repeat for the entire trial, she will rock out and push herself harder.  Maybe I’ll mention it in rounds tomorrow as our solution J. 

About 5 minutes after all that drama, Emerson threw everything up in her stomach.  We don't know why.  So now we have temporarily stopped her feeds, too.  While this is a road bump as well, I don't think it is as worrisome as the respiratory stuff. It is just unpleasant to see her vomiting and all upset afterwards. 

That brings me to the title of this post, I guess.  I was napping this afternoon- because Emerson was napping, which means we will both be up tonight, I bet- and this line from Vonnegut's "Slaughter House Five" was running through my mind.  It is what he and his protagonist said they want for an epitaph, so it is kinda morbid and the plot is totally unrelated to our situation, but the phrase itself is not.  I kept thinking of how Emmy has had a bit of a rough day and how upset she gets now at the tube in her mouth and the work she has to do, and when we bathed her today, I could not help but get sad at all of the bruises and scars she has on her body.  So I think that is why this phrase kept popping up in my mind; everyone says Emerson will not remember a moment of this experience, but I hope that it is even better than that.  I hope that because of the drugs she is on, everything is beautiful and nothing hurts.  I hope that is what it is like for her right now, as I watch her sleep. 

Day 35 post post rounds - things are going well but please keep your fingers crossed.

The floor is really busy again today. Rounds concluded for us around 2 pm.

The tentative plan for extubation attempt two is Wednesday. Emerson is at her admit weight which is not only great to see but much easier for herto breathe. Her xray looks very clear, I think it is okay to even call it normal. The are running volume support trials every four hours today, every eight hours tomorrow and working up to 20 or so before extubation. Volume support trials are where she triggers her own breath, establishes her own rate, and takes in her own volume. If breathes less than the set volume the ventilator will assist. In essence this is the workout plan for lungs.

She is really much more visible fiestier than before. As her sedation has been weened, she has started to paw her hands in the air and shake her head side to side. This new behavior was frightening because she is at an increased risk of seizure activity as she weened from the phenoBlahBlahBlah, Now it is only startling.

She is tolerting the formula really well. They continue to increase her continuous feeds through her NG tube and by ten tomorrow morning she should hit her target amount. This is great progress and shows that her digestive system has significantly recovered. They will consider switching her to bolise feeds rather than continuous if everything goes well. For the medical followers, her residuals have been really good. For a two hour period at 55 cc per hour, the latest residual was 42! Her ostomy output has been productive and we have stopped her lasiks for now.

Oh yeah she snores. Her air way has cleared up enough so that she has a "leak" without steroids. I think this has allowed her snore. It was a bit scary at first because it is a wet sounding noise, we thought she was chocking and required suctioning. Suctioning and CPT are no longer productive as her secretions have drastically diminished and her atalectasis (collapsed area of lung) has gone away.

Another milestone is that she officially does not have any pressers/pumps other than her feeds on a stand. At one point, she had three stands with around 20 pumps and bags hanging. This is huge. Her meds are all pushed through syringes into her PICC line in her arm. They stopped trying to get a peripheral IV in her - thank goodness, it was time (Lindy your rock).

Jessica is doing well, we both are. We are both holding our breath a bit and we are fearful and anxious about this next extubation attempt. The game plan is strong and Emerson is making good progress. The doctors here really have been amazing, we don't say that enough to you readers. In awful event that your child is sick Loyola's PICU is really wonderful place to be. The level of personal sacrifice on the part of the doctors and staff here is really evident, these people care a ton. Many of them feel like family.

Thank you everyone for all of the support and offers of help, it has been overwhelming. Five weeks into this process and you people are tenacious with your help - thank you, it is about all I can say words really fall short here. I'll try to post after rounds tomorrow, likely in the afternoon. Sunday tends to be a slower day at the hospital so I should be able write more as we learn more.

Maybe I'll get Jessica to flex some of her "mad" writing skills for you. :)

Some of you have heard, my brother almost cut his thumb off in a table saw. He had surgery and is doing well but has limited movement for a long while. Katy is now taking care of two boys for a bit, please check in with him if possible.

Day 35 pre-rounds

Emerson turned 17 months yesterday more than a month of her life has been spent in this hospital, almost all of it in an induced coma. Emerson is really starting to come out of sedation. She raised her litte arms at the elbows today and has been shaking her head. We slept most of the day yesterday, Emerson continues to stay up all night. Emerson reached admit weight this morning, one of the goals for extubation.

I will post more after rounds.

Day 33

It's official.  Our daughter is nocturnal.  I'll take it though.  I was really worried yesterday when Emerson decided to sleep all day long.  She would wake up only briefly, stare around for a minute and then go back to sleep.  This was worrisome because she is not on the serious medication that should be making her so tired; however, for the past three NIGHTS she has been awake from about 10:30 p.m. until 8:30 a.m.  Even when they give her extra doses of something to calm her down or help her sleep... nope!  She stares wide eyed for the entire 8-10 hours.  I am fine with this.  I know, it sounds like most parents' nightmare, but I am just happy that she has SOLID AWAKE TIME. 

Last night, I tried to stay up and party with her.  I tried to get her to turn to me intentionally, but I don't know that she did.  She does look around more though.  And I did get her to focus on me for a long period of time last night.  I was trying to get her to do her "tricks."  I asked her to stick out her tongue and I would stick my tongue out at her... nothing.  Well, she would start chewing, but she loves to chew on her ET tube, so I don't think it was an attempt to respond to me.  I asked her to kick, and she moved her legs a little bit- they were in her moon boots (splints) at the time- but, again, I don't want to say that she definitely responded.  I am not convinced that it was a response to my "command."  Still, I then started opening and closing my hands and asked Emmy where her hands were.  After about a minute, she started moving her right hand up and down.  I asked if she wanted to sing her "Open Shut them song" and started doing it and as I did it, she would move her right hand up and down.  I did this numerous times and she followed along.  Then I ran to get nurses to be my witnesses, and she didn't really do it.  She opened and closed her hand somewhat spontaneously, which then made me question altogether whether she was responding to me or just moving that hand.  It was 1:00a.m. and I was too tired to figure it out.  I woke up with my head on her bed- and a neck cramp- at 2:00.  She was awake, staring.  I gave up and went to bed.  I woke up, though, at 4:00 and 5:30 and 6:30.  She was still awake and staring.  Sometimes she would be wiggling- not squirming- just wiggling her legs back and forth.  I am happy that she was awake last night but not in too much pain, I don't think, because she did not have the bad tremors that she gets when she is exhibiting withdrawal pain. 

As for other, more medical, stuff, this is the first time that Emerson has gone over 24 hours with an age appropriate heart rate.  She has not been tachycardic!  Also, she is down to 13.1 kg.  Her dry weight was 11.3 kg.  We have less than 2 kg to go until she will be at the weight one of the doctors wants in order to extubate.  Getting her weight down is one requirement.  Another is getting her off of her Phenobarb.  Neuro said we will continue to wean her and at the rate they are weaning her, so she should be off of it Monday.  IF she meets all other requirements for extubation before that, because we know she will be weaned Monday, they would consider extubating if she is close to being off the Phenobarb but not quite there.  Still, we are NOT planning on extubating in the next 36 hours or anything.  Another extubation prerequisite will be clear lungs.  We have changed her vent settings and continue with the CPT- but not as often because her lungs are clearing up- and each day her x-ray looks better.  Still, her breathing is slightly diminished at the bases, so we want to keep improving.  Lastly, we want to rev up Emmy's stomach so it is ready for bigger feeds- and feeds by mouth instead of a tube.  We are going to try to get her up to 45ccs of formula before extubation, or as close to that as we can get.  Emmy is slightly malnourished, which is common for her condition.  We are bumping up her feeds from 4ccs of formula every four hours to 9ccs every four hours later today (This will be day two? of the formula).  If she handles that well, we will check with surgery and continue increasing feeds this weekend.  We pull out what is in her stomach which is referred to as "residual" and that helps to determine how much is moving and how fast.  We don't want it to build up too much.  Her intestines and stomach are still, understandably, slow.  But let me tell you, when she passes something in that ostemy bag, it could practically wake up the kid next door. I laugh every time because it startles me it is so loud.  (I can't wait for Emerson to read this part when she is older and get totally embarrassed that I even mentioned this).  I laugh because when Emmy would do that at home, she used to look at us and giggle, so I'd like to think she that if she were feeling better, she would laugh at that sound.  Gas is always funny- even in the PICU at day 33 :).

Day 32

Neurology interpreted the EEG results as very positive. They disagreed with the techs findings that there may be a problem at risk for seizure; instead, they think that small area is common for patients who have been in ICU this long. They will continue to follow her but they said they were very pleased with the findings. They hope to have her off of the phenobarbital by Monday which will help decrease her sleepiness. They will increase her Keppra to compensate.

Emerson's atelectasis has significantly decreased as her xray looks remarkably clearer. This is attributed to the increase in her ventilator minimum support. Her tidal volume was increased and her peek pressure was also increased from very low to low. Her chest Physical therapy (CPT) is only done when awake or at the request of her attending nurse. Last night, while awake, CPT got a bunch of junk out of her lungs.

In an effort to further reduce her edema, they are giving her albumin and lasiks. She is less edematous in her face, arms, hands, legs and feet. She looks more and more like herself. Because she responds so well they watch her potassium and sodium levels to adjust her TPN.

We are probably three to five days away for another extubation attempt, although that could change as things progress. She needs to have reduced swelling in her belly (don't we all), improved lung preformance and be more alert.

Day 31

One month ago today, on September 25, we arrived at Loyola with a VERY sick little girl.  In those 31 days she fought for her life and we are past, I think (and the doctors think), that part of her illness.  She fought off the illness and won.  Her kidneys recovered; her liver recovered; she lost over 20 pounds of excess fluid; her stomach and bowels recovered (after a surgery), and now we wait for her lungs and brain to recover not only from the impact of the illness, but they have to recover from everything we did to help her recover:  they have to recover from the drugs, the ventilator and the rest that have weakened her.  It is a slow recovery process, but there are baby steps of progress. 

Emerson was awake, alert and comfortable all day yesterday.  Last night, she was wide awake as well, but she was uncomfortable.  She has quite a bit of gas right now- which is good for her recovering intestines- and she also has withdrawal symptoms.  We kept trying to get her comfortable last night and supplementing with Morphine and Versed to make her comfortable, but on top of all that, she also had chest physical therapy every two hours.  So even after she got comfortable, she would then get awoken and uncomfortable again.  So... finally, at about 7:00 this morning, the drugs worked.  We stopped C.P.T. for the morning to let her rest.  I was hopoing she would get a good nap and wake up this afternoon ready to hang out like yesterday, but her pupils look REALLY small.  I am guessing she is going to be sleeping most, if not all, of this afternoon.  I am kinda bummed about that because I think it is so important to have her awake and alert and interacting with us, but we are going to have to play around with these meds.  We want her awake... but we want her comfortable.  During rounds we adjusted her pain and sedation medication schedule- we are not weaning today, we just adjusted the schedule- so we'll see how that goes. 

We are trying to prepare her for another extubation, but we are being extremely cautious.  We want her awake atelectasisand alert, like yesterday... or better if possible, but we want her lungs in  better shape, too.  Emmy's x-rays still show atelectasis which is keeping her from taking larger breaths.  We are playing with her vent settings and continuing with the CPT and clearning junk we hear in her lungs afterwards to prepare for another extubation.  We are hoping, I think, that she will look better at the end of the week and we can discuss another extubation more seriously at that time. 

So for today... it might be nap time.  I am really hoping we can figure out a schedule with the pain and sedation medication so that Emerson can be comfortable AND awake, but for right now, she is comfortable and sleeping after having been awake for about 36 hours. 

MRI results

So let me begin with what is important to know:  the MRI was NOT bad news.  It is not 100% good news, but NOT bad.

The Neuro-radiologists took a  good deal of time to analyze Emmy's MRI.  They could see immediately that there were no glaring issues.  However, upon closer inspection and comparison with the CT she had just after her seizures, there is a mild to moderate increase in Emerson's ventricles.  This COULD BE consistent with diffuse cerebral atrophy, but it is unclear.  In other words, Emerson could be perfectly fine.  She could come out of this the exact same smart, funny, happy little girl we had.  There are other cases that have had THE EXACT SAME results in their MRI image who are perfectly fine.  On the other hand, it is unclear because there have been other cases that have had THE EXACT SAME results in their MRI image who have various impairments ranging from mild to severe. 

In other words... we have to wait and see.  We are looking for Emerson in there.  We are looking for her to react to us- to show recognition of her family.  It is a bit too soon for this because she still has drugs in her system.  We are still weaning her.  We are looking for her to do some of the things we ask her to do.  This is also hard right now because sometimes, well, sometimes she doesn't do it so we don't know if she can't or what.  Other times, it seems like she DOES do it but we don't know if it is a coincidence or if she is really responding to us.  I have made a chart.  It has various commands/activities I try with her so I can keep track of whether she did it, she may have done it or she did not do it and when.   This way, while still pretty subjective, I can tell the doctor with more certainty what I have or have not seen her do. 

The biggest difference, today, is that she is awake.  She has been up since after her MRI.  I mean wide awake.  No drugged out slits for eyes that I never ever want to see her with again, full big blues staring back at us.  Also, whereas before she could only stare straight ahead, she can move her eyes slightly right now.  She can also make bigger movements with her arms and legs.   In fact- according to my chart :)- at 1:30 when I asked her to kick for me really hard, kick, kick, kick,  she did!  She didn't do the other stuff I asked her to do, but I also had really bad coffee breath, so maybe she was mad at me and insulted by that.

So in all, we are still hopeful, and we are SO EXCITED that she is awake.  It is great to try to interact with her again. 

Some more good news.

The girl who awoke from her nap is a much more alert little lady - Kelly and Joel you would be amazed. She turned her head a little and looked at me and then moved her eyes to Dr. Bonawit! She is still looking off but occasionally she gives you more purposed look, a couple times she raised an eye brow!

Also, her foley catheter is out! The wound nurse is elated with her progress as her wound is all but healed.

Still waiting on the MRI results.

Day 30

Emerson did well during the loud MRI. We'll likely get the results this afternoon. I have some positive neurological milestones to share. All agree that Emerson's stare is more purposeful this morning. She was up all night and she just fell asleep. She has her nights and days confused. She is also yawning, gagging and coughing, all good signs. She is pushing back a bit to, this is more subjective but it seems as though she is interacting - albeit weakly. She has some response with her eyes when stimulated with light and by touch. I have heard nurses' say she has shark eyes, common with this much sedation.

Yesterday, they changed her adivan and methodone to every 8 hours instead of 6.

She started pedialite again through her NG tube.

The next couple of days she will continue to be weened from sedation and the ventiaktor. Neurology is making plans to furhter change the levels of her seizure medication. They will increse her Kepra. Phennobarbital is an anti seizure that strongly sedates her, previously, her level was a 57 it is now around 37. Combined with her other drugs, she is likely too out of it and presents as someone with troubling brain activity. The MRI will tell us more. If everything checks out, we will try to extubate her in the next two to three days depending on her sedation.

After 32 hours and 35 minutes of extubation they have decided go intubate her again.

Emerson is retaining to much CO2 and working too hard. The attending physician is concerned about her neurological condition and has ordered an MRI for tomorrow.

Extubated!

She has been breathing mostly on her own for an hour and forty minutes now. She is doing well but understandably agitated. She is now enjoying some Versed. They removed her NG tube that was helping drain hr stomach because her ostomy output has been good. No more tape mustache! She does have a little air assist via a little tube with a hole for each nostril to help fill and humidify her lungs. She has been able to strongly cough, last night I woke up to a pretty big cough.

Her Edema increased over night but her belly is soft so there isnt too much concern there.

We have to watch her for the next six to eight hours to assess if she can remain extubated.

and...waiting

So... Emerson is ready to go.  CT scan looks good.  She appears to be ready/strong enough to be extubated, BUT it is 5:00 now.  It took a long time until CT was ready for her and then a while to get everyone the results, SO we will extubate tomorrow.  Sorry to get everyone's hopes up.  We appreciate so much all of the encouraging and exciting emails Emmy received today.  She had a pretty good, pretty restful day- which may mean that she will be up a lot tonight (she has her days and nights confused, we think)- and all of that rest should be good for her BIG DAY TOMORROW... we hope :).

still waiting

We just wanted to check in.  We appreciate so much how many people are almost as anxious as we are to find out if Emerson will be extubated today.  We have taken the necessary steps over night to prepare her, and we believe the doctor is pretty determined to do it today; however, there are a series of "checks" or "tests" that we have to get through before having that final discussion to determine whether today is the day or not.  First, there is the air leak test.  Emmy did not do so well with it yesterday because her trechea was so inflamed.  Today, however, she did extremely well- the steroids over the past 24 hours seem to have worked.  We also have a CPAP test- on the vent- followed by a blood gas.  Emerson did very well on both of these yesterday, but we have not done them yet today.  I am guessing they will be done shortly.  Lastly, we have to look at her chest x-ray from this morning.  Yesterday, her right lung was partially collapsed at the top, so she received some extra therapy every 2-3 hours throughout the day and evening.  We'll see how that worked. 

So, to sum up:

Passed the air leak test.
Waiting on CPAP test
Waiting on blood gas
Waiting on x-ray

THEN, we discuss her overall status and decide if she is ready.  If they want to wait another 24 hours, we will be okay with that, too.  We are just happy she seems strong and that we are almost there.

Thank you again for all of your support and concern. 

Day 26

To be cautious, a plan has been set in place for extubation early tomorrow morning.  Her air leak test revealed that she has significant inflamation in her throat so they will give her steriods for 24 hours.  The swelling in her trechea is expected.  Additionally, the xray this morning showed signs of a collapse in a small part of her upper right lung.  She will receive an aggressive treatment of percussion therapy on her chest today, every two hours.  Her blood gases have improved even while I have been typing this, they are back in a normal range. 

The surgeons said that her belly has recuperated enough to take out the NG tube after extubation.  The PICU team will pursue this if cleared by a speech specialist, who will determine if she can swallow and receive bottle feedings.  The idea of this is very exciting.  For the first time in what will be ~27 days, we will see her entire face, thus far she has had a giant tape mustache and a tube in her mouth and nose.

She is still tacicardic and feverial, the jury is still out on the cause: infection? withdrawal? drug induced?  It seems that they will stop the Zosym today as it has been 8 complete days so they may try a different approach or see how she responds without anything.  They will still treat her fevers with IV Tylenol though, to which she is very responsive.

Her platletts have bounced back to 97 from 33 on their own!

Her output from her ostomy bag has increased - which is good and challenging.  For now, draining and changing this thing is easy as Emerson is pretty sedated, however, when this soon to be 17 month old is in high gear - oh boy!  A two person job for sure.

Emmy has had her eyes open often today durning her waking periods.  It is still difficult for her to do so as she contintually raises them during the few minutes they are open.  I do feel that her eyes have a knowing looking about them and that she saw us.  It is difficult with all the sedation but I believe her to be in there.   

Bone Marrow Results

Cancer and leukemia have been ruled out. The Oncologist/hematologist said that her abnormal blood cell levels are still the result of her body recuperating from the initial infection and nothing more. Big sigh of relief.

Emerson is still intubated but they took her off rate support, meaning that she is triggering all of her own breathes - she appears to be breathing comfortably with this adjustment. She is still receiving oxygen from the ventilator and low pressure support. Good steps towards extubation.

In and out

In and out.  Emmy is breathing well above the vent.  After much discussion about her drips- the sedatives- it was decided that rather than wait for the wean to end at 12 p.m. for the Versed and 9p.m. for the morphine, we would just turn them off now and see how Emerson does.  So, as of 10:30, Emerson is off of those and on the Adavan and Methadone only.  I bring this up because Emerson's vent settings are low; she is breathing above the vent; she is coughing and gagging-- these are all good signs that she could be ready to be extubated soon-- but we need her more awake, so we are weaning faster and faster.  In fact, the doctor saithrust we are looking to extubate her in the next couple of days.

More in and out... well, out then in.  Emmy pooped!!!  The entire surgical team cheered to see such the dark oozy stuff in her ostemy bag (ew).  And because she is putting stuff out, we can put stuff in, now.  They are starting her on Pedialyte today, and if she handles that well, we will add formula tomorrow.  Then, the more she is able to put out well, the more we can put in.

So, what's in?  More food!  Last two days or so of the Zosyn (anti-biotic).  Methadone and Adavan to help with the withdrawal.  Peripheral line (added yesterday to her hand) and her Picc line. 

And what's out?  Her IJ (the line in her neck) was taken out last night at 10:00.  The Versed and Morphine are out.  Lasiks are out- no Lasiks today.  Poop- enough said.  And, we hope, that ET tube (Endotracheal   tube- the one that intubates her) that Emerson chews up and hates so much will be out in a couple of days!!

1012 emails

Thank you!!

Day 24: post rounds

Emerson had a nice calm evening. While she did have a fever last night, they have definitely curved down, less often and less intense. Hopefully she will stop having fevers altogether. She continues to breathe over her ventilator (it could be greater and more often though) and her tidal volume has increased. To get off the ventilator she needs to be more awake and fever free. We will continue to ween her from pain and sedation medication. As long as her withdrawal scores continue to be less than three we can continue to ween her at a faster rate. This evening we may consider doubling the rate. It could be two days before she is off the Versed. Jessica and I are fingers crossed for extubation by the end of the week. The IJ (internal jugular) central line, will be removed in a couple days or today depending upon if they can get a peripheral IV line or she is weened off of the the Versed. Versed and TPN (nutrition) are not compatible and have to go in separate lines. The IJ is a double lumen but her new PICC is only a single. Once the IJ is gone she can come off the heparin so one less pump and drug there. This is hopefully a week of subtraction.

Day 23: The beginning of that slow road to recovery (again)...we hope

So here we are again.  We are very slowly starting to wean Emerson from her sedatives.  She will start receiving Methadone now every six hours as we try to slowly wean her from her Morphine and Versed.  Emmy will remain on her Zosyn- an antibiotic- because of the fevers... which brings us to our newest worry.

Remember yesterday when we said we weren't worried about the fevers because surgery thought they were still an effect of the recovery?  Well, now that it has been 72 hours since the procedure, we are a little worried.  The PICU team and Infectious Disease are working together to figure out why she has these fevers.  It could be something abdominal or fungal, and we continue to culture her to see if it is infectious.  Good news is that so far the cultures keep coming back negative.  The other piece of good news is that Emerson's white blood cell count has remained steady.  We REALLY want these fevers to stop though.  They are a sign that something is not right and on top of that, it complicates things as she gets weaned from these drugs because fever is a withdrawal symptoms, but because she is having fevers before we even begin to wean her, we will not know if the fever is a sign of withdrawal or something else going on.  It makes Brian and me nervous that something else could come of this, but we just have to wait and see.  The doctor was talking about ordering a CMP- a Comprehensive Metabolic Panal-to give a more comprehensive look at what is going on with her organs etc., instead of just the cultures to look for infection and blood work to look at her hemoglobin.  We may do the CMP tomorrow.

Emerson is still edematous, and her stomach is distended but soft.  All of this is most likely because she is still retaining fluid that the wound vac used to help her get rid of.  For that reason, she will be on the Lasiks again today with the goal of a negative fluid balance tomorrow.  In the past 24 hours she has had 1.5L in and 1.2L out.  That leaves a positive fluid balance.  We want the liters out to be greater than the liters in to show Emerson is getting rid of her excess fluid. 

Emerson's picc line was a success, but they couldn't put in a double lumen- the lumen is the tube that comes out of the arm that we put her meds and stuff into- because Emerson is so small that she requires a 4 French ( the size of the tube threaded into Emerson's arm).  Not all of Emerson's meds are compatable with one another though, so they can't all go through a single lumen.  This means that the IJ (internal jugular) central line has to remain until we get Emmy off some of the meds that are not compatible with one another. 

So, goals for today:  wake up Emerson and stop the fevers.  Emmy is moving again and responding to our voices.  We will take turns reading her books, reading her emails, singing, doing her OT exercises and probably doin some long division or something.  And we will probably start yelling at her and threatening to take away those puppies and cars we have been promising her if she starts to get febrile again. 

Goals for the week:  Get her weaned from the sedatives and pain meds so that 1) we can get rid of the IJ central line and 2) we can start talking about EXTUBATION again!! 

Day 22- Go, Fight, Win, Emmy!

We stopped the Vecuronium- the paralytic- yesterday, and Emerson started moving her fingers and toes yesterday afternoon.  This morning, while in her moon boots- the OT splints- we propped her legs up on her stuffed animals and she kept kicking her legs off of them.  She was being a stinker!  We bathed her this morning and I kept asking for a pat-pat and she would pat my hand with her right hand.  When we prop up her arms with stuffed animals, she likes to rub them.  While she is still sedated, she tries to wake up when she hears our voices.  One of the residents gets frustrated because she will ask Emerson to open her eyes or try to get her to move, and Emmy won't do it.  But then Brian or I will ask her to do something and she will.  When she hears our voices, she squints and raises her eyebrows.  One of of the nurses says that kids fight the sedation when they hear their parents because they want their parents so badly.  It is so cute and sad.  So we will spend some time talking with her, like during the bath, but then we want her to rest, so we get her all comfortable and turn out the lights and try to whisper or read or update the blog. 

Surgery and PICU say her stomach feels soft.  This is a really good thing.  It also looks like air is beginning to move through her intestines, which is a good sign as well.  Her lungs look a little wet, which is common after abdominal surgery because the stomach cannot yet absorb everything, so they gave her Lasiks to help her pee it out.  She is a peeing champ.  She broke her record yesterday, which was 102 cc in two hours, by peeing 134 cc in two hours. 

There are increasted ET tube (edotracheal tube) secreations but they are clear and/or white.  This, too, is not a bad thing because she is coughing again- a good thing!- and that causes some more secreations.  Emmy, though, gets aggravated because she has to have the tube cleared and this causes her to gag and tear and get angry.  She hates to have her tube cleared.  I like to see her get fiesty though.

Emmy had a fever of 101.3 last night. Again, this isn't necessarily bad because the fevers are trending downward- they are lower in temperature and less often- and she responds to the Tylenol, so we are less worreid about those.  We- I always say "we" like Brian and I actually do anything but by "we" I mean mostly the amazing nurses here- are keeping track of how many boluses (bolusses?  boli?) she receives of morphine today in addition to her drip.  We are not going to start weaning her today, but we want to start weaning her from her drip tomorrow, and we need to know how much morphine she seems to require right now in addition to the drip so that it is a slow wean. 

Surgery gave us the all clear to work with her on the exercises OT and PT gave us.  Emmy is resting very comfortably right now, but our plan is to wake her up this afternoon a bit and do her exercises.  Her left arm is much more edematous than it was before the surgery and it seems stiffer, too.  Both OT and PT said we want to keep her loose, so we are going to work with her and then read to her and let her rest again. 

Oh yeah!  Some of you might be worried still about that left leg.  The heat pack on the opposite leg worked and her left leg and foot slowly warmed up again.  We are thinking that it was probably due to a shift in fluid in the body that caused all that, but we are going to keep an eye on it today just in case. 

Brian and I feel really good about her recovery from this surgery.  She seems to be doing well in all respects.  We are feeling pretty optimistic right now. 

Day 21: Post rounds

Surgical team came by.  They checked her stomach and said it is fine.  They also took the bandages off so that we could see the stitches around the area where her wound vac was.  I don't think we have a bikini model in our future.  It is not that bad, but there will be a nice scar for sure.  We have to start thinking up good stories for her that she can tell people to make the scar more interesting.  Right now I am thinking something along the lines of wrestling with a lion- it will allow her to show off her roar.

We are still concerned that she is refluxing so much bile.  Surgical team said this is not uncommon and they are not worried.  I have a harder time not being worried because that is how this surgery debacle started.  She probably has an illius from the surgery that prevents things from moving along and therefore comes back up.  It is pretty common after these surgeries.  Her fevers seem to be trending down, so that is a good sign.  Her tachycardia is also trending down with her heart rate in the 140s and 150s, versus the 170s and 180s it was at Thursday night.  The sedation and pain meds should be helping that along, I think. 

One other development that has me slightly worried is that her left leg is suddenly cooler under the knee than her right leg.  We have a heating pack on the right lower abdomin/upper thigh to see if this helps- I know, counterintuitive, but that's what they do.  I really, really hope this helps, but I am not holding my breath.  If it does not help and/or if the coolness spreads to/above the knee, we have to ultrasound that leg to look for a clot.  If they find something in the ultrasound, she will have to get shots in that let- FOR THREE MONTHS!  Seriously?  I mean, seriously.  Can we please just get better?  Can we stop with the new things to worry about every day?  I may need to buy her a drama queen tshirt or something obnoxious and inappropriate like that because I am literally getting dizzy trying to grasp all these new developments.

Emerson is currently on Tylenol for her fevers, Heparin to keep her lines open, Keppra for her seizures, Versed for sedation, Morphine for pain, Phenobarbital for her seizures, Zosyn (an antibiotic) for her central line infection, Vancomycin (an antibiotic) to prevent infection from the surgery and Vecuronium as a paralytic. There are also ointments she gets throughout the day on eyes and stuff.  The Zosyn, Vancomycin and Vecuronium should disappear in the next 24 hours or so.  After this acute period following her surgery, maybe in a day or so, we will then start weaning her from the Versed- again- and the morphine.  Eventually, we will get her off of the Phenobarb- this will take a while, I think- and control potential seizures with Keppra only.  I asked today when we should prepare for weaning again and I was told this week.  We will have to see her in some discomfort; we will have to see her go through withdrawal again.  I am trying to prepare myself for it as best I can because it is absolutely necessary to do this so that she can wake up so that we can get her extubated.  She will have no memory of this... but we will.  I kinda want to steal some of herVersed so that I don't remember this either.   Because I can't do that without being locked up or put in the mental ward here, I just have to remember that it is a necessary evil if we want to see our sweet girl again.  We haven't heard her voice in three weeks.  I just have to remember that if I want to hear it again, we have to allow her to go through this.

Still a very long road ahead.  For right now, it is nice to see her resting comfortably. 

3-2-1

There isn’t too much to report right now.  We had to work on Emerson’s pain management yesterday morning, and once that was worked out, she was able to rest peacefully.  She has been resting and recovering since.  I am anxiously awaiting surgical rounds to see what they say after checking her.  Of course, the one day I make sure I am totally awake before they get here- which is usually 6:30- they are late.  As I struggled to stay awake, I thought of how this all started three weeks ago.  I ran that day over in my mind- again!- and then started thinking of the change it brought and how a season literally changed while we were here and how the month of October has ALWAYS brought change for us.  THAT led me to THIS:

We have been here now for 3 weeks.  For 21 days.  This, then, made me think about these numbers, 3,2,and 1 and I realized how much change they have brought:

Three years ago (in October), we put our condo up for sale, hoping for the slightest possibility that it would sell, so we could buy a home and start a family.  One month later, it sold; two months later, we moved out.

Two years ago (in October), I was on temporary bed rest.  I laid on the couch, looking out our big window at the changing leaves and rubbed my belly telling Emerson, “Just be good.”  It is something Brian used to say all the time, and it captured so simply all I wanted for her.

One year ago (in October), I returned to work after my maternity leave feeling conflicted.  I was excited to feel a sense of myself again and sad to leave my 5 month old baby who had just begun to roll around and babble all the time.  She was on the brink of sitting up by herself, and I felt guilty about leaving her and guilty about not being entirely upset to be leaving her.

Three weeks ago, we brought Emerson to Loyola, shocked that a little cold could turn so deadly.  We were not sure if she would live and numerous times that week, we almost lost her.

Two weeks ago, Emerson’s organs began to recover.  For the first time, I thought she might pull through this.

One week ago, Emerson started vomiting bile and developing fevers.  We did not know why.

Three days ago, we were told Emerson’s intestines were edematous and that she would need surgery to figure out what is wrong.  We were deflated (I know, odd adjective, but the most accurate one I could think of). 

Two days ago, she had surgery and surgeons discovered and fixed, we think, the source of that problem she developed almost one week before. 

I am exhausted by these numbers.  By the change they bring.  They capture all of the ups and downs and leave me wondering what is next.   What I know is what we hope: that in one week, Emerson can be extubated.  That in two weeks, we will see her, awake, in her lion costume relearning her roar.  That in three weeks, we will be leaving Loyola, the three of us, together.  That in two months, we will be home, spoiling Emerson with presents at Christmas before the surgery she will need to reverse the ostomy in three months. 

I know this blog is for Emerson updates.  Thanks, again, for indulging me with another somewhat random essay while I wait. 

Surgery went well!

The surgeons cut out a bit of necrotic intestine that connected her large and small intestine. This was likely the source of her vomiting bile. This necrotic intestine is the result of Emerson's original shock response when her edema was at it's worst. She more than doubled her size before.

When they ran her bowel they also emptied much of it. This helped reduce the size of her intestine, although still edematous, they were able to close up the large incision from before.

To be on the safe side, they gave Em an ostomy bag which she will have for 2-3 months or until she is completely healthy. So yes they added a hole. Once healthy, she will have a minor procedure where they will require her to be in the hospital for 5-7 days for the reconnection of her intestine. The reason for the ostomy was to prevent a further set back in the near future. Since her intestine is edematous, the fluctuation in the swelling around the connection might have resulted in a leak or tear.

They couldn't put a picc line in so the central line will remain.

Emers is well sedated and ready for a 48 hour snooze, she deserves it.

post rounds

Usually, rounds are very exciting because we learn so much- about Emerson and the medical world- and we get to ask questions.  Today, it was slightly subdued- on our part- because so many of the questions and curiousities weighing us down can only be answered by the surgical team and can only be answered AFTER her 4:00 surgery.  Nonetheless, here is what we discussed at rounds this morning:

Emmy's highest fever last night was 101.8.  She had a fever at 10:00 this morning of 101.3.  It is being managed with Tylenol.  We are also managing her pain with Adavan and Morphine.  I am grateful that in rounds, they said to just speak up and we can give her as much as it seems she needs to keep her from wincing and waking up etc.  I never want to be a pain/bother to the people here who are trying to do their jobs, who know way more than I do about what is best for Emerson, but I was feeling this stress about wanting her to be more sedated but not wanting to interfere with what the doctors and nurses think is best.  All this to say, I was greatly relieved when they said to just speak up and they will give her more today.  I am relieved by the idea that the next 24 hours will be about making sure she is resting and allowing us to rest as much as we can, too. 

Some good news hemotologically during rounds :).  Until now, Emerson's white blood cell count was high- probably because of the infection- and her platelets were low.  She was experiencing,we think, a slight case of  DIC- disseminated intravascular coagulopathy.  Essentially, Emmy's coag levels were good, but we couldn't understand why she was not producing more red blood cells.  DIC, as I understand it, means that the red blood cells that were being produced by the bone marrow were being consumed.  This has not been a huge problem for her, but when she has a procedure, it has meant that she needs to get platelets.  So... yesterday, during rounds, we discussed how she will need to receive platelets over night because the surgeons want her platelet count at 100 for the surgery.  We were thinking a count of 100 would be unlikely- even with the platelets,  because Emerson's platelet count, while up from 19 on Tuesday, were still only 26 yesterday.  We were hoping to get them in the 50s or something before surgery today.  Well, guess what?!!  Emmy seems to be recovering because her platelet count after receiving platelets last night is at 134.   AND her white cell count is lower, which could mean that the worst of this infection is past.  Overall, she totally surpassed our expectations.

This is the trend I want to end on.  Yes, there are times when we receive unhappy surprises while here, but there are also many, many times that Emerson totally surpasses our expectations and we get very happy surprises- breathing so well above the vent, moving more than expected, waking up, urinating more than a drunken fraternity brother.  I am hoping that after surgery, our very happy surprise is that Emerson continues to surpass expectations:  that we will be able to close her or almost close her without complications during or after the procedure; that Emerson's recovery will be minimally hindered by the surgery; that Emmy's progress with weaning from drugs and withdrawal and progress on the ventilator will be minimally hindered by the recovery.  Emerson has surprised us many times with her fortitude- she could do it again.

Another scary recovery ahead

It was a long night around here.  Emerson is on pain medication, but every time she would begin to wake up, she would grind her teeth, bite down on the tube in her mouth, get all red and cry.  She would move her hands and legs a bit  and a few times open her eyes while doing this.  It drove me insane to see her in pain, and the surgeons said there was potential for a good deal of pain she could be in, so we would give her some more pain meds, but at this point, we don't know how long they last, so I set my alarm for every 45 minutes to get up and check her, hoping that within those 45 minutes of intermittent sleep she didn't wake up.  Not once when I woke up last night was she awake or in pain, but I was upset that during one period, I set my alarm wrong so I got almost 2 hours of sleep between 1:30 and 3:30ish.  Eva, Emmy's nurse last night, said that she had to give her some morphine at that time.  I am so glad she go it.  The nurses around here are wonderful- have I mentioned that before?

I woke up again very sleepy but determined to be awake when I heard Dr. Glynn, Emerson's surgeon, in the room. She thinks the bowel that is exposed looks okay.  (I have to admit that I keep looking at it as well to make sure it is not becoming browninsh or purple again.  It is not as gross as you would think ). Dr. Glynn will be doing Emerson's surgery at 4:00 today.  They are going to explore and clean her bowels and stomach very carefully.  If there is a bad section of bowel that needs to be cut away, she will tell us before she does it.  However, whereas yesterday we were told that Emerson's bowels are much too edematous to close her and that they would need to keep her bowels outside of her body for up to a week, Dr. Glynn thinks that is riskier than closing her at this point and is going to attempt to put the bowels back in her body and close her up.  If she cannot close her all the way, she will close what she can and keep open a small part that will heal on its own and become a hernia that will need to be removed months from now, after Emmy is recovered.  This was, at first, a great relief.  THIS would be progress.  However, I am scared of the risks of closing her up as well.  We just don't know for sure that her bowels will handle it well, that it won't cause a perpheration later if they become increasingly edematous, that fluid won't build up again and put pressure on her lungs again.  I am very, very nervous about it all.  I really, really hate how much "wait and see" comes with this recovery.

Emmy had fevers last night around 101.5.  It went down slightly after some Tylenol but then came back.  More than likely, she is still just fighting this infection, but they take cultures during the fever just to double check that something new has not developed.  Until now, each culture has been negative, but we will have to wait until midnight tonight for the cultures that were sent last night.  The kid has a lot going on so I guess we should not be totally surprised that she is fighting a fever. 

Dr. Glynn is going to recommend that Emerson be heavily sedated for 24 hours to avoid movement and pain.  I don't know if that is what her other doctors will want because they are afraid of withdrawal and Emerson doesn't move SO much that she is at risk of doing something that will damage the exposed bowels, but I really hope at this point that is what we do.  I just want her to rest peacefully right now.  I have a hard time knowing if I want it more for her or me right now, actually. It is just too hard to see her wince and cry.

I kinda feel like I really want to be sedated, too.  And I kinda want it to last the next week or so because I am so afraid of what could happen after this surgery.  I don't know how I am going to remain calm and sane.  It's a good thing Brian is better at it than I am. 

Potential Set Back

The surgeons found a section of troubling intestine today when changing the dressing for her wound vac. All of her intestines are swollen as well. This is likely the cause of her vomiting bile. Much of Emerson's intestines are sitting outside of her in a "silo" dressing. Before this was to relieve the pressure on her lungs and organs; now it is so they can montitor this bad section to make sure that it doesn't perforate and contaminate her. This little loop of troubling bowel was purlple when they first saw it, but within twenty minutes it began to pink up. They are pretty sure it won't be a problem but time will tell. Tomorrow they will bring her to the OR and run and wash her bowel, until then they are checking it about every four hours. It will likely remain in the silo dressing for up to a week until which time the swelling should go down. There is a chance that they may have to remove some more of her bowel.

They did remove the left chest tube today.

Post Rounds

While the wound vac dressing will be changed today, her left chest tube will be removed and her central line dressing will be changed. An OR has been booked for tomorrow afternoon to explore and possibly close her belly if her output continues to trend down. The exciting part is that if she is closed tomorrow, we will be able to explore the possibility of extabation in the next couple of days. She is currently to sedated to be off the ventilator but her lung function is near perfect.

Wonderful news. It might get a bit more stressful as she is less sedated and more aware of her situation but hopefully she won't have wait too long. While we still likely have a long road to hoe, things are definitely moving forward.

Last Night

Emerson was well behaved, she met half of her goals. She let the NG tube suction her bile and didn't vomit. She did have a temperature on and off last night. The infectious disease doctor was pleased with her progress in fighting off this recent line infection. Through cultures, she knows the exact bacteria and she is treating it accordingly.

Fingers crossed people. I really want to hear from surgery today that we can ditch the stomach vac and they can stitch up her belly. This would be a big step closer to her being taken off the ventilator, which would be wonderful! I would also enjoy the removal of her left chest tube. Emerson has been breathing really strong over her ventilator so I hope she would handle being off of the ventilator, otherwise they might have to give her a tracheotomy - no thank you. She may be too sedated to protect her own airway though so I'm likely getting ahead of myself. It may be another day of waiting for her infection to clear.

Today

I was talking to a friend today, a bit, about how difficult it is to explain to someone how you get by day by day here. I think there are too many movies and television shows that dramatize it so that people envision either the strong, stoic parent(s) advocating and fighting for their child or the parents dramatically throwing themselves around or collapsing or screaming because they can' t wait for "the cure" anymore. I have to admit that there are times that I want to reenact that scene at the end of "Steel Magnolia's" when Sally Field, asked for the millionth time if she is okay or something, breaks down and yells about how she is fine, but her daughter is not. Sometimes, I do feel like that, but most of the time we are numb. Our brains have this amazing ability to sedate us in such a way so that we can function on a day to day basis only. So as I sat here wondering what to title this post and wondering what day it is anyway, I thought of all this and thought I would attempt to explain why we don't know what day it is because while it is a little like one long day sometimes, more often I think it feels like just some day, another day to get through, just like yesterday was and tomorrow will be. A day we have to function while Emmy fights.

So what did today bring? Nothing too exciting or upsetting. Dr. Webster gave Emerson the goal of not throwing up and not getting a fever today. Emmy did pretty well. She has not thrown up green bile since this morning, but she does have an NG tube removing much of the bile for her. As for the fever, she did well until about 4:15ish, when her fever was 101.9. We turned down the temp in the room, wiped her with a cool washcloth and gave her Tylenol through an I.v., and her temperature is down to 99 now. I am hopeful to go sleep at my brother in law's house tonight and get some better sleep if she can to keep her temperature under control.

The good news is that Emerson's breathing is great. She is still breathing above the ventilator. This infection and the illius have not interrupted that progress; however, while her wound vac is putting out less,which would mean that maybe we could close her stomach in a couple of days and possibly extubate her shortly after that, this illius and infection may have delayed that possibility. It is very much a wait and see situation.

Emerson has been resting most if the day. She has been sedated on and off with adavan and morphine, but she is also tired from last night and we are still figuring out the proper dosage for her phenobarbital, so it is likely she is pretty sleepy from all of that. While her ability to wake up and show responses is important to me, I am happy to see her resting right now. I just feel like her little body is working through a lot and it needs rest at the moment more than a day of progress.

I think that pretty much sums up today. It has been pretty quiet, and Brian and I have used today to rest and regain composure- well, that last part is mostly me because Brian has been way more calm and composed than I have over the past 20 hours.

The wee hours of the morning

Emerson's temp is 100. She is still vomiting bile. They believe that her intestines are not ready for food, that they are also angry that they are not completely inside her body and that she is fighting an infection. Her central line in her leg has been removed now that the xray confirmed the operation of her neck central line is good.

Central Line

Dr. Webster finished the central line and Emerson is doing well. She has a fever of 101.8. Xray is on the way to confirm placement. Once confirmed, they will remove the central line from he hip.

Busy Night

To help get rid of the infection, Emerson is getting a new central line in her neck so that they can remove the old one. Her fever has been hovering around 103 this evening and they want to take further action to help Emerson fight the infection.

This is our sixteenth night in this hospital. The staff here are great, we don't get the opportunity to tell them enough so - "you guys are great" in case you get the opportunity to read this.

Simple Math

Fever 102.8 + heart rate 175-185 + suctioning bile + junky sounding lungs + threat of very busy peds ICU = one scary long night for tired frazzled parents.

Catch 22

Get used to the obvious lit references when the English teacher writes.  Only, I don't have any energy to reference anything original, most of them are practically cliches that I would consider telling my own students not to use.

The title of this post is in reference to what Brian and I are experiencing right now.  We are in the middle of- what many have referred to as- the hardest stage for parents.  Emerson has been awake/aware/aggitated much more today.  Here is why it is good:  we want her awake- it is a good neurological sign.  In addition, we need her to be more awake in order to one day get extubated.  She is also able to show that she knows we are here and move, which, again, are good neurological signs.  Apparently, we WANT her to react.  Here is what is so horrible:  most of her reactions.  Emmy gets really, really upset about the tube in her mouth.  She will chew it and chew it and get frustrated.  She'll open her eyes and chew it and get all bubbly at the mouth and soon she becomes blotchy in the face and starts crying.  It is absolutely heart breaking.  I HATE that she is crying. She cries about the tube and she tears up when they have to clear her ventilator and she gags.  She sometimes gags herself and coughs because of the tube and then cries.  We do not hear the crying because of the ventilator, but we see it.  We are told again and again that these are normal responses and good responses but I hate to see it.  I rub her hair and sing to her and rub her hand and tell her over and over, "I know, I know.  I know what you are asking.  I know you don't like this.  I am so sorry."  I just want to cry with her.  I wish I could just curl up with her and hug her and make her feel better. 

But I can't.

Emerson also started vomiting dark green bile this morning.  Not like a little bit, either.   She is filling containers with it.  We have had to change her bedding and bathe her and change her tape that holds tubes in her face 3 times.  And then she cries and gets upset and that causes her to vomit more.  At first, they thought it could be because she is waking up and reacting to the meds.  They stopped her feeds.  Now, she still does it even when nothing is in her stomach, so they are thinking it could be from her intestines.  One person thinks it is an illius, which is an intestinal blockage that inhibits the bowel from moving.  This is caused by any number of things Emmy has been through, including the heavy use of narcodics she is currently being weaned from.  The infectious disease doctor has ordered a bunch more tests and cultures because they want to rule out other infections, including one that could be causing stomach pain.  Surgery has talked about it possibly being another infection.  In short, we don't actually know why she is doing this but no one seems to think it is serious... except me.  Everyone is treating this as a little bump, something that is not serious... until it is serious. 

Let me say I love this place and I trust the people here.  I don't want to be anywhere else, but I am totally fatigued from having to keep my emotions in check today as I try to sit with my daughter as she goes through this.  I am soooo sad and tearing as I write this, and I am just so tired.  I am so tired of my daughter having to suffer anymore.  I just want it to be over.  I WANT IT TO BE OVER AND HAVE MY LITTLE GIRL BACK!!! 

I am so grateful she is waking up, that she is more aware, that she reacts to outside stimuli.  I just wish that she didn't have to go through all this while she wakes up.

Quick, pre- round post

We are waiting on rounds still. The girl down the hall has had a tough morning, so everyone has been down there. Thank you so much for adding her to your thought and prayers.

So Emmy's fever is not withdrawal- although she is going through that as well- it is an infection from her central line. Infectious disease will decide what to do; it will probably be an anti- biotic, and then they'll have to take out the central line and do something else. This will be discussed and decided at rounds, I think. People are not freaking out about it, and most have said they are surprised it didn't happen sooner because they have had to use that line so much and for so long.

Emerson has awoken for brief periods a few times this morning. I asked her a few times to give me a pat- pat, something she used to do for mommy when I was feeling down, and she patted my hand a few times this morning when I asked for that. I know it could be a coincidence, but I want to believe it was intentional. She had some occupational therapy this morning, and she did well. She was fitted for splints for her legs. The OT was happy with her movements and responses though.

Okay, so as I was in the middle of what was supposed to be this very brief post, guess who strolled in?! Neuro! And guess what?! They are thrilled with her responses! I was just, literally, in the middle of my sentence to them explaining how she has opened her eyes on her own, but often she needs a reminder/ help blah,blah, blah and at that moment, Emerson opened her eyes and was blinking at them. She wanted to show that she is way stronger than i was giving her credit for. They were so impressed. And she was kicking and moving her hands! They said that for all of the drugs they still have her on, they are surprised to see her doing all that she is. They said they are very pleased. I told them I loved this visit and they can come back again soon :).

Peek a boo

So here I am in my pj pants, shoes just barely slpped on, practically yelling, " You are so strong! Keep fighting!" Next to me was Brianne, Emerson's nurse tonight, red in the face, tears in her eyes. I ran out of the room to two other nurses who always check in on and fight be assigned to Emerson. Kelly, who was with Emmy the very first night, ran behind me as I shuffled back in trying not to fall in the shoes that were still not fastened. Then Kelly took her hand and was crying and cheering as Emerson fought to keep her eyes open for about 5 minutes. It was so hard for her and with the drugs still in her system, she couldn't get them more than half way, but she did it! She FOUGHT to blink and reopen them, to react to us. We got to see her bright blue eyes for about 5 minutes.

It was so exciting!

A little note

Emerson's temperature is now normal. To clarify, her weight is in kilograms not pounds. The girl down the hall is more stable, they were able to put her on a ventalator and control her blood pressure with meds through a central line.

One fewer hole!

I need to begin by saying I am really sad, at this moment, not for Emmy because she is doing fine today, but because there is a little four year old a few doors down who has been fighting Leukemia and who is now, it seems, fighting something even more difficult.  It appears to be a very serious situation and my chest just aches right now thinking about what this little girl and her family have been through.  When we first arrived 14 days ago, her family happened to be here briefly and was so worried about Emerson but did not know her name, so they just prayed for the sick little girl a few doors down.   Now it is our turn to do the same.  Your thoughts and prayers have done so much for our family the past two weeks; if you have time to add this little girl and her family to your thoughts and prayers,we hope it can help them like it has helped us. 

Emerson has been okay today.  She is now going through withdrawal from all of these necessary drugs, and it is difficult for Brian and me to see it happen. They are managing it with Morphine and Adavan right now, but it will be a long process and many long days as she goes through withdrawal while trying to get better.  We see her get teary, blotchy, irritated (squinting, flaring nostrils, higher heart rate), and today she developed a fever.  It is 101.3, so they gave her baby Tylenol.  It has not come down yet.  They also cultured EVERYTHING to make sure it is not an infection, but they are thinking it is withdrawal. Her withdrawal score is between a 2 and 5.  It is not an exact science for person in Emerson's condition.  A score of 8 or above is high and means that we would stop weaning her off Versed and actually go up on the dosage, but she is not there yet, luckily.

Her weight is down to 14.7, and her feeds are up to 10ccs an hour.  This is a big deal because they would not increase the formula unless she was handling it well.  We are really trying to get a poop out of her. 

So what's with the title of this post?  Well, Emmy not only had her wound vac changed today, but the surgeons also removed her right chest tube.  Yea!  I just can't wait until we can close up more holes in our baby.  We still have not managed to hold her :(.  We are hoping maybe tomorrow we can now that one side of the bed is easier to access because the chest tube is gone. 

One last, recent development.  Dr. Ubogi came into the waiting area during Emerson's procedure very excited.  He showed me a slip of paper that said Emerson Roessler 51.8.  He said this was great news.  Her Phenobarb level is really high; we want it more like a 30.  I just stared at him.  I wanted to be excited, but why are we so happy that Emerson has too much of her anti-seizure medicine in her system?  He said he is relieved because ANYONE with a level this high could not wake up.  The reason Emmy is not awake is, possiblity, because of her Phenobarb level.  So we are not giving her anymore today, and we are checking her levels tomorrow, and we hope to see her able to wake up much more after this.  I was relieved, but it seemed to me that everyone was so happy with her progress- I mean, she opened her eyes half way today and they acted like she just got up and ran a lap around the room.  So I guess, while this is great, I was surprised to find out that we were even concerned.  If she is able to wake up more and do well coming off of this Phenobarb, we should be able to better assess whether there is brain damage and if she does well, we will be even closer to extubating her because she needs to be awake for that to happen.

I want to be selfish right now because I am getting that desperate, discouraged feeling again.  It starts as a pit in my stomach and creeps into my chest leaving an aching pain that rises as burning tears in my throat because I want sooo badly to see she is okay, to see greater progress. I want to totally focus on Emerson only, but for now SHE IS OKAY and the girl down the hall is not.  I am distracted by what the family a few doors down is going through and, tonight, I need all of the positive energy we can muster to go towards them for a while. 

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Update Friday

A pediatric physical therapist came to visit today. She will be back tomorrow as well. She was pleased with Emerson's adema and considered her flexibility to be good. She suspects that the occupational therapist will put Emerson's ankles and feet in plastic splints to keep her feet at 90 degrees. I am okay with this addition.

Emerson's world of subtraction is more interesting at the moment. It seems her kidney function is back to tip top shape, she peed 100 cc in a two hour period - wow. She has regularly peed about 50 to 60 cc in a two hour period today.

The stomach vac hasn't been changed in over 12 hours! This is pretty remarkable as it was being changed every 3 to 4 hours before. Her right and left chest tube have produced far less as well. I'm hoping that she will lose her right one tomorrow but we will have to wait for morning surgical rounds to determine that one. Dr. Webster's goal for Emerson this weekend was to lose the stomach vac, a lofty goal but Em seems to have heard her.

It seems like Em has had some episodes of pain today, tough to witness. As Emerson's sedation is lessened, her pain, has raised our level of stress and emotional strain. She has moved a lot more today but she still hasn't opened her eyes. Her legs are not as taught as they have been. Her adema has improved throughout the day, however, she is still at least ten pounds heavier than she should be if not more. Some of it is guessing due to all the cords, tubes, sponges, etc.

What's in a Name?

With her hair washed and curls exposed, Emerson looks like herself.  She is acting more like herself , too.  As we speak, Pat, one of her many amazing nurses, is repositioning her and she is trying to talk away.  It appears she is often trying to eat the tube in her mouth or tell people off.  Either one is a good sign, to me, because our Emmy loves to talk and eat.

She is a strong little girl.  She did well throughout the night and continues to breath ABOVE her ventilator!  These behaviors- moving when the doctors say it might be hard for her to move, trying to open her eyes, breathing above the ventalator, producing over 50% more urine output than doctors have asked- make me so proud of her; I feel like she is living up to her name. 

Parents spend months and months deciding on the perfect name for their unborn child.  We place so much emphasis on it, believing that maybe it has some influence on the person s/he will become.  Most people focus on and ask about Emerson's first name.  Yes, in an indirect way, she was named after Ralph Waldo Emerson; however, we did not intend to name her after an ugly dead guy- have you SEEN his picture?!  Ralph Waldo Emerson wrote one of my favorite essays, "Self-Reliance," and because I have always found this an important quality to have, and because we thought it weird to name her Self Reliance, we did the next best thing and named her after the author, hoping that she would one day embody and embrace many of its most important ideas:  "To be great is to be misunderstood;" "What I must do is all that concerns me, not what people think;" "Trust thyself; every heart vibrates to that iron string;" "Insist on yourself; never imitate;" "To believe your own thought, to believe that what is true for you in your private heart is true for all men,--that is genius."  What I have seen most in Emmy's life so far also comes from this essay: "Infancy conforms to nobody; all conform to it." 

No one really asks much about or discusses Emmy's middle name sake though- I know, that is probably not even a real term, but I have been living on espresso in a hospital for two weeks, I am surprised I can even type.  She was named Kathleen after my sister, who not only hypostatizes most of the qualities celebrated in "Self-Reliance," but who also personifies wit and selflessness and intelligence. Here is a great coincidence, though, and another reason that we gave her the middle name Kathleen:  we have never met a Kathleen we have not been impressed with or inspired by.  First, there is the person my sister was named after, my Aunt Kathleen.  Like my sister, she is one of the funniest, most generous people on the planet.  She has been there to support, to cheer up, and to take care of every member of my mom's huge family when they need it.  Perhaps my sister gets some of her same great qualities from her namesake.  Then there's our friend Kathleen Huron. The moment we met her, we were impressed by her, and she has many of the qualities I hope our Emerson will have:  a love of the outdoors, strength and humor, warmth and friendliness.  And finally, we were excited to discover that one of our favorite doctors who has treated Emerson, Dr. Webster, is a Kathleen.  One week ago, Emerson turned a corner, and ever since then she has shown improvement every single day.  This all started when Dr. Webster was her doctor.  Don't get me wrong, there are other great doctors, one to whom we will be forever indebted for saving her life, but Dr. Webster changed the course of this illness in our eyes.  She is calm and personable and to say she is intelligent is an understatement.  She challenges Emerson and gives her goals that Emerson has yet failed to live up to.  She comes to visit Emmy and gives her daily goals, even when she is not assigned to her, and generally shows us that she cares.  I think it is an amazing coincidence that Emerson was blessed with this doctor.  She has been tremendously lucky to have two amazing Kathleens in the room with her almost daily. 

My sister had to leave yesterday.  It was a very hard day for everyone, but we would not be where we are today, we would not feel as optimistic, and we would not feel as strong were it not for her presence.  She is a happy reminder of Emerson's middle name and all that we hope for her someday. 

Thank you for tolerating my random essay.  It is just something I have been thinking about.  Caffeine is wearing off and rounds are starting...

Salon Time

Jess, Pat and I are washing Emerson's head. In attempt to losen the glue, we are letting her hair marinade in lotion. We will then wash it out and later we can, maybe, hold her! She has been pretty awake while we wash and comb her hair. She has been moving her hand and mouth and eyebrows and eyelids. For your video pleasure I've posted a video of Emmy so you can see the curls we are so excited to have back! It also demonstrates many of the conversations we are having at her bedside right now and the answers we look forward to hearing HER give again. It's an older video, but you'll get why we miss her so much: YouTube

Getting Rid of Stuff

A neurology resident came up to examine Emerson. She has ordered the EEG to be removed, even though she isn't completely off of the versed. Very positive. This means Pat (one of our favorite nurses, although all of them are fantastic) will be able to wash Emmy's head and restore her beautiful curls. Without the EEG in, we might be able to hold her! Although it will be tricky with the cords.

Last night she had the IV in her neck removed - one less hole!

Surgery stopped by and stripped a clot out of Emerson's left chest tube which really did the trick, she is back to shedding that fluid around her left lung. Chris, a Cheif resident of surgery, is really at his best when in his thin soled Adidas gym shoes.

The Hemotoligist/Oncologist is looking into Emerson's red blood cell count, he ordered a minor lab but feels there isn't a reason to be considered as he believes the results have been deluted by her fluid reduction.

Post Rounds- The second Friday

Emerson is blowing bubbles and moving her tongue as we speak.  They are succtioning her, and she makes sure they know that she does not like it.  I see her kicking her left foot, too.  That's my stubborn little girl!  I like to see her protest. 

Rounds just finished- they were running a bit late today.  I get so anxious for them these days.  Every day there is something to be concerned about and something to be excited about. 

This morning, we were most concerned about her white blood cell count.  It is high.  Basically, at its highest it was 50K.  Then, it went down below the normal point and then started climbing back up, only it did not stop at the normal point; it kept climbing.  It appears, we hope, to be at a plateau:  it was 25 K yesterday and 24,800 today.  Here is the real concern though:  Emmy's bone marrow is, obviously, producing white blood cells, but it is suddenly not producing red.  She needed to get blood products this morning because her hemoglobin was under 7.  Her platelets are so low that she has bruising and we cannot continue with her percussion therapy on her chest because of all of the purple dots.  We need to figure out why her platelets and hemoglobin are so low but her white cells so high.  So today we are going to involve hemotology for their opinion.  Not only am I a little scared about the idea of her needing bone marrow or whatever down the road, but I am also frustrated that it is Friday.  I know, who gets upset about FRIDAY?!  Those on the "outside" as I refer to anyone who does not live in the hospital right now :), love Fridays because it means it's the weekend.  In the hospital, though, Fridays are not fun.  Anytime you need lab work, it means you have to wait until Monday, or maybe even Tuesday, for the results unless it is a real emergency.  For blood work, I am wondering if they will even be able to take the labs; they may have to wait until Monday to do ANYTHING.  While her wite blood cell count is up, they have cultured her and so far nothing has grown to indicate infection.  So that is good news. 

The other piece of worrisome news is that her left chest tube is not working.  The really good news would be if this meant it was unnecessary, but her chest xray indicates thatt there is fluid there.  So as we speak- I was just booted from her room- Xray is back to turn her on her side so we can see better why that chest tube isn't producing anything.  No matter what, it will have to be removed, but the chest Xray will determine whether or not we put in a new one or just close that up. 

So how about some good news?  Emmy started Pedialyte yesterday, remember?  The purpose of this is to get her digestive system working again. It has not been functioning for about 11 days now- can you imagine?!!  I can't go 11 minutes without eating around here!  So  the first round left some residual fluid in her stomach- the equivilent to 2 1/2 teaspoons- so they removed it and tried again.  The next two rounds worked without residual matter, so surgery supported puting her- slowly- on formula through the feeding tube.  I really, really want this to work because if she can start getting her nutrition from a feeding tube and eventually on her own, she will no longer need the central line in her leg.  It has been in for 11 days, and with adults they never keep them in that long, but is different in pediatrics.  Her line looks fine right now, they check it every day, I think, but eventually, they will need to remove it.  The only reason they cannot remove it right now is becasue that is what her TPN- her nutrition- goes into, so until she can receive her nutrition another way, it is necessary.  There is a possibility that she will not be able to eat on her own even when she goes home, in which case they would put a pic (??) line in and she would get her nutrition that way.  It would be something surgery would have to do that goes into her chest and everything.  I think I started tuning out this information/explanation as soon as the nurse started explaining it, hoping we will never have to deal with that.  So far, she is handling the feeding tube well.  If she continues on this trend, we should be able to just close up the central line and move on. 

Also great news, that I need to remind myself to be excited about and grateful for every day, no seizures!!  I cannot imagine if those were still going on.  As of midnight tonight it will have been a week since her last seizure.  I never want to see her seize again.  They are continuing to wean her off of the Versed- the sedative and anti-seizure drug- and keeping her on the eeg until it is completely weaned.  It will be a while, though, because they have changed the weaning rate from .04 to .02 a day because of the pain she was in yesterday.  She is currently at .12 and will be weaned to .10 today.   They add morphine when her heart and respitory rate go up in case she is in pain.  She will also remain on the other three anti-seizure drugs that do not sedate her.

Emmy's urine output is still good- 18cc an hour!  Her sodium is at 145, so we are taking the extra sodium out of all of her nutritional stuff because it is not necessary anymore.  Her lactic acid is down to 1.6, which is a normal and her amonia is normal, so they are no longer even going to check for those things.  Emerson is still edemitus but slims down every day for us a bit more.  Everyone who comes in today gets excited to see a face that looks more like her!  Her eyes are no longer puffy at all.  She weighed 11.2 kilos coming in and is at 15 1/2 kilos today.  That is about 34lbs.  She is losing a little more of that weight every day. 

I think that is all we learned from rounds today.  Emmy has not shown any new movements, but is moving more often.  It seems like she is in an awake-like state more often than before.  Her eye lids move and she scrunches up her eye lids and nose, and her eye brows move up and down.  She responds to us talking to her by (appearing) to try to open her eyes as she also moves her fingers a bit and moves her mouth a lot.  She is very aware of that tube in there and chews it and moves her tongue around.  I like to imagine that she is trying to make her animal sounds at us.  I ask her what a dog says and wait and she'll move her mouth and I will say, "That's right!  Woof woof!"  I'll go through all the animals like that with her.  I'd like to think she will be able to rattle off all the animal sounds again when she wakes up because we are still going through them with her every day. 

Staying strong

The surgeons said that Emmy moved her left and right hand during the stomach vac change! Her intestine looked healthy. Her blood pressure and heart rate were stable during the procedure - overall, her heart rate is still too high. She also had her NG tube replaced with a much smaller feeding tube. They will start her on pedialyte and then move to a special formula if she does well with it. Occupational therapy is coming to determine if she needs splints for her hands and feet.

Morphine

Emerson's morphine has been changed from every three to two hours. She has been pressing he foot up against my hand when receiving a bolus of meds into her IV line. It is hard to tell if she is tearing or oozing. The oozing often occurs as the result of excess lubrication. The lubrication is applied to prevent corneal abrasions. Jess and I take turns lubricating her lips with Vaseline so they don't crack. Back to her pain or perceived pain, Emerson's nurse is trying, and I think succeeding, to stay ahead of Emerson's pain. The balancing acts Emmy is undergoing are to stressful for her parents at times but we are handling things better. Kathleen has been a huge help for us. Last night, she slept with Emerson so Jessica and I could stay together. Thanks Aunt Neen(Emerson calls her Neen)!

Tender little Emers.

Emmy has been moving her eyes beneath her closed lids. She also rotated her right hand and wrist twice. She stroked Nigil's (her British monkey) furry leg with her thumb. These are good signs but also a bit troubling. Managing Emerson's likely pain is a difficult process. Watching for withdrawal symptoms is difficult because of her sedated state. The difficulty is compounded by the fact that she likely built up a heck of a tolerance to many of these pain drug. As she is weened from one drug another is introduced to manage her pain and heart rate which has climbed. Managing her heart rate is a bit difficult because her secretions are so thick that they have to frequently suction her. The respiratory technicians also do some percussion therapy on her chest to try and help brake up the fluid in her lungs. Emerson is a tender little lady right now, she has three periferial IV lines, a central line, two chest tubes, a stomach sponge vac (a 3.5 inch by 1.5 inch hole), a ventilator, urinary catheter, an NG tube to empty her stomach intermittently and a ton of crusty EEG leads on her head. The "woods", that she is frequently referred to being in, are thick and not lovely.

She is scheduled to have the dressings of her sponge vac changed at 2:30 today.

For now, I'm back to reading her more pooh bear.

Our first small set backs but nothing too bad

We are sorry we did not post more yesterday. We are going to try to be better today. We have had some small developments. It is to be expected that as Emerson gets better and better, we will be weaning and pushing and, overall, trying things that may work or may indicate that we have to slow down. There is a bit of trial and error, but nothing drastic. Brian and I are very happy with all of the doctors and the way each one pushes Emmy to get better. So here is what we have seen in the last 24 hours:

Yesterday morning, the surgical team water sealed her left chest tube because she does not put out much from there anymore. This was exciting, but short-lived. The chest xray showed fluid build up there, so surgical residents rushed back in to turn the suction on and canceled the procedure to remove that chest tube today. The pediatric nurses have said that the left tube is not draining at all on that side since then, though, and the fluid is not really around the ribs as much as in the lungs. Her left lung is partially collapsed now as the right recovers, but she is still able to breath partly on her own. She is receiving her percussion therapy as we speak to break up all of the mucus in there.

Emmy has not needed blood products for 72 hours now. As of yesterday,she was completely off the sedative phenanlyl as well. This is/was all good. However, last night, her temperature was trending up slightly and she had a period where her heart rate increased and her pupils got bigger. Her breaths per minute also increased. This is a sign that she is waking up and/ or that she is in pain. Everyone here is very sensitive about kids being in pain, so they gave her a dose of phentanyl early this morning because they want to make sure she is not in pain. As a parent, this is really odd. On the one hand, it is good that she is waking up a bit more- she is supposed to be doing that so we can extubate her- and if she was in pain, it is also a good neurological sign that she responds to it. But then I catch myself happy about my baby being in pain??! I don't want that. So it is tricky. We will talk to the attending at rounds and figure out what we are going to do today.

They have to take her off the ventilator and manually give her breaths and then pause and suction with a bigger tube than what is currently in her after her percussion therapy because the mucus is so big and thick. This is good. It is expected that this would happen and they need to get all this out of her before we can extubate. It sounds like a thunderstorm when they succtioning her. It is a little scary- for the parents only, the nurses are all over it- when she struggles to breath when a mucus ball gets the best of her. Good news is that they still have her on the lowest possible setting for the ventilator and Emmy is handling is like a champ! Oh yeah, and when they suction her, Emmy gets mad. Sometimes her right hand moves a bit and most of the time, her mouth moves as if she is trying to protest. It is so cute. When she was well and she didn't want something, she would shake her head no and swing her right arm to clear the way or clear her area to show she was done with us or with her food or whatever. It was really funny to see her so assertive. I imagine that is what she is trying to do now.

The head of the neuro team was back again yesterday. I like to give him a hard time because he cannot dole out good news like others do and I want it from him more than anyone else at this point, but I have certainly come to understand why he, of all people, cannot make promises. Still, he surprised me yesterday when he said, before his "wait and see" comment, that there are small improvements. I smiled at that guy.

More later...