I HEART SOPHIA

Sophia is for the most part, back to normal.  She still has a little bit of a cough and a runny nose, but otherwise is feeling like herself.  I was able to rearrange the swimming lessons that she was supposed to start last week while she was in the hospital.  We transferred her to another class that starts on Monday next week.  It is at an outdoor pool close to where Michael works.  It is pretty hot here in Kansas City so the water should be warm for us.  I am looking forward to it because I love to get in the pool when it is hot outside.  This is going to be her last week of summer school.  Sophia, Michael and I really liked her summer therapists.  She will continue to go to private speech therapy preschool every other Friday in Independence through out the rest of the summer.

I also wanted to mention that we will have to reschedule Sophia’s Heart Cath.  She has to be illness free for 6 weeks in order to perform the procedure.  Michael, Sophia and I are still planning a family vacation to Colorado the last couple weeks of August.  So we will likely plan the cath for right after we get back.  By the way, thanks for all the well wishes, gifts and visits from our family, friends and loving supporters while our daughter was in the hospital.  It is awesome to know how many people care about our girl.  Hope everyone is well and enjoying lots of fun summer activities with your family and friends.  I will be sure to post more next week about swimming lesssons.

Sophia is doing great.  She has to continue antibiotics and ear drops.  And we need to make sure she drinks plenty of water. But we are free.

Sophia was in diapers the whole time we were in the hospital and had an accident as soon as we were home.  We are hoping this is just a fluke and we don’t have to completely retrain her to use the potty.

Below is video proof of how well she is feeling.

UPDATE: Sophia just used the potty all on her own.  I think we are OK.

Sophia was off of oxygen all night last night and slept until 8:30am.  Her oxygen saturation was consistently in the high 80’s without oxygen.  She has required no suctioning since yesterday morning and other than a bit of cabin fever she is in really good spirits.  I will post more details later.  Here is a video and a photo in the meantime.

Sophia is currently napping comfortably as I write this.  She had an EKG this morning and will have an echo this afternoon.  Her oxygen saturation has been pretty well in her normal range with a bit of supplemental oxygen.  We still haven’t heard from our cardiologist.  We intend to insist that the doctor’s here involve him in Sophia’s care.  I think he must at very least have what the doctor following Sophia called, “courtesy privileges,” which would allow him to access her chart here.

We had to relay her entire history to the cardiology nurse practitioner today.  There was only a tinge of second guessing our treatment choices in her tone.  You can read my previous post if you are interested in what that means.  But I will say, it must be something they are trained to do here.

I will let you know how the echo goes.  Below are some recent pics.

Sophia is napping and seems to be doing OK right now.  But, we (Patty and I) are having a bit of a crisis.

We have spent all day wondering why we haven’t heard from Sophia’s cardiologist.  We have called and got his answering service repeatedly.  He was apparently out-of-town over the weekend.  So we expected he would contact us as soon as he was able, likely this morning.

Our concerns are rooted in Sophia’s exceptionally complicated cardiac history.  Yes, she has a pneumonia.  But she really isn’t responding how they would expect she would based on the treatment she is receiving.  She doesn’t really respond to oxygen the way she should.  Regardless of the amount of oxygen she gets, her oxygen saturation seems to dip and rise mysteriously.   And her x-ray like all chest x-rays is pretty open to interpretation.  The attending doctor here believes the cardiac component of her illness is likely the cause of the fluctuations. There is talk of making adjustments to her Lasix and now they mention checking (and possibly adjusting) her Digoxin levels. Which may ALL be appropriate for her treatment. But, any of you who have heart kids know how important the relationship with the cardiologist is.

There are so many nuances to treating these defects and the cardiologist is the go to guy/gal on all of it.  And we have had the same cardiologist since the day Sophia was born.  He is the only doctor in the world who has any real understanding of her cardiac history.  And he once promised us that he wouldn’t put us in a position where we had to make the really complicated decisions regarding her treatment.  I know this is a luxury, because  many of you have had to make those decisions on your own.  But, we have always had the counsel of Sophia’s cardiologist.  And we have always been able to trust that he would share all the information we needed.  Not like so many of the doctors we see in the hospital setting who look you in the eye and say one thing and then go out into the hall and whisper all the treatment scenarios to the other professionals caring for Sophia.  Without his counsel, we are really in the woods here.

So here is what is going on.  Our cardiologist doesn’t work in this hospital.  They have their own team of cardiologists.  He uses there facilities to do catheterizations and other outpatient procedures but doesn’t have privlidges for inpatient admissions.   This is basically because the head of the Cardiology department here put through a policy stating that patients in the hospital admitted for inpatient services will be treated by the cardiologist on staff.  I am sure this isn’t unusual.  But in the past, our cardiologist has always stopped in to see us, read Sophia’s chart, and has always been able to make notes/recommendations for her treatment.  But because of this apparently not-so-new policy, he isn’t able to do this for us anymore.

It is unclear to me why this policy exists.  It obviously isn’t the best situation for the patient’s well being.  So I can only assume that is is either a purely political or else a business decision.

It is a curious situation here in our fair city.  There seems to be a lack of competition when it comes to pediatric cardiologists.  There is basically our doctor and the children’s hospital’s cardiology clinic.

We love Sophia’s cardiologist very much and feel he is the most qualified cardiologist in our area.  But this is not the only reason we see him.  He has a private office where he is able to truly care for the patient the way he feels is best.  This is VERY important to us.  We have to take Sophia to other clinics here .  And, there is always a great deal of politic and hoop and hurdle work to being treated in the hospital clinics.  There is a superabundance of conjecture and accusatory finger pointing that always accompanies our clinic appointments. And frankly, I have no taste for it.  We are strong advocates for Sophia, and don’t need someone who has glanced at the hundreds, if not thousands, of pages of her chart to second guess treatments and care we have spent countless hours agonizing over. But, this has been what we come to expect from our clinic experience, a kind of judgmental smugness that is a foundation of every entrenched bureaucracy.

We haven’t yet talked to our cardiologist.  He has had some newborn patients to deal with today.  But, his office assures us he will call.  He still has a good relationship with the hospital and his office has assured us that he will be consulted if any changes are made to her treatment.  But, there is obviously a very delicate and sagacious dance to keep that relationship in good standing.  It has become clear to me how much a large Children’s hospital is not just a benefit to the community but behind the scenes operates as a “Godfather” to a sort of pediatrics syndicate.

Sophia was off of oxygen for about three hours.  She got to go to the playroom for about 15 minutes.  Unfortunately, her sats dropped into the low 70’s while we were in the playroom.  We aren’t parrticularily wed to the pulse oximeter or its constantly fluxuating numbers.  But her lip color was off and her nail beds were confirming the low numbers.  We returned to the room and put her oxygen back on at a liter.  She responded immediately.

Here is my assessment of the situation.  Sophia likes to be on the dry side of normal when it comes to her hydration.  She has taken lasix everyday for some time (2 years?).  And cardiac wise everything seems to function better that way.  She had a really wet cough this morning and her chest was pretty crackly.  She got an extra dose of lasix and her respiratory status improved dramatically.  Her chest sounded better. Her cough improved.  And her oxygen saturation improved to the point we were able to get rid of her supplementary oxygen.

Pneumonia causes the vessels to dilate creating need for extra fluids.  If she gets too dry the infection will sit in her chest and get worse.  If they keep her a little bit wet, the junk in her chest stays looser allowing her to move it out via her cough.  So there is a built in conflict in treatment strategies.  If she is kept too well hydrated she will have wet cough and low oxygen saturations, requiring supplementary oxygen.  If she gets too dry, her pneumonia could worsen causing other problems.

We have discussed our concerns with the doctor.  They agree with the assessment.  Together we have decided to focus on the pneumonia first, and deal with the consequences of over hydration second.  With the idea that her cardiologist can make the final call as to how to balance the fluid in/out situation.

So tonight she will continue getting her IV fluids and whatever oxygen she needs.

She is feeling much better and her energy level is up.  Hopefully she continues to improve and we are home in the next couple of days.  She is not at all happy about being confined to her bed.

On a side note, she seems to be itchy in her diaper area.  We hope she isn’t getting a yeast infection from the IV antibiotics.

Sophia’s IV line came undone at a coupling, soaking her bed with the fluids they were giving her.  Once the line was reattached the IV was no longer working.  After several attempts to salvage it, it was determined to be clotted.  And after it was pulled there was a clot in the tip of it.

She is still getting Rocephin (antibiotic 1x/day) and fluids, as Sophia refuses to drink or eat an adequate amount.  We tried suggesting they abandon IV access and let us see if we can get her to drink more.  Though she would still need to get the antibiotic (by shot without IV access).  And of course no hospital is going to give up IV access that easily.  It is always the last thing to go.  There have been times I thought they might wait to have the guard at the exit remove it on our way home.

So we remembered to have them take her out of her room to place a new IV.  We recently learned about “ouch-free zones” when a child psychologist spoke to our support group and we insisted they take her to a treatment room to place the IV.  This way we can tell Sophia that no one will hurt her in her room and she can feel secure.  Otherwise, she would be scared anytime anyone new entered the room.

Sophia was hooked to an oxygen tank and I carried her to the treatment room.  The nurses on the floor were unable to get access.  They attempted once on a vein they seemed pretty unsure about and didn’t really have any other prospects.  Sophia was red faced and crying after the attempt and repeating that she was all done over and over again.  The nurses started discussing the options for help getting an IV.  The Vascular Access team is likely not available because it is Sunday.  The transport team is hard to get unless it’s an emergency.  Luckily, Patty remembered the ER nurse that put Sophia’s IV in yesterday in one try.  She said, “a nurse named Emily got her first try yesterday in the ER.”  “She was really great.”  So, they called down to the ER and she was here.

Emily came up to the treatment room and remember a vein she had passed on yesterday.  She got the supplies ready, took just a minute to reassess the situation, and got it first try.  Sophia was REALLY gald to be done.  I carried her back to the room and Patty has been rocking her.

Continuing with the not-so-good news, Sophia’s right ear is full of thick yellow pus.  She is already on plenty of antibiotics. So we are getting some drops to thin it out and help it drain.

As for the good news,  Sophia is off of oxygen.  Her oxygen saturation is hanging in the mid-80’s. And if they do not remove her nasal canula soon, I will be removing it myself.

Sophia just got some tylenol and we are hoping she will nap soon.

Sophia didn’t sleep very well last night.  She did sleep some though.  I stayed at the hospital with her and Patty went home.

Sophia was still awake at 11:30pm and it wasn’t until I just left her alone that she finally went to sleep.  She has developed a pretty nasty cough and it woke her frequently through the night.

This morning she was still coughing pretty bad and was breathing pretty hard and fast.  Dr. O’Laughlin (our cardiologist) is out of town and the cardiologist here approved an extra dose of lasix for her yesterday.  I think she may get an extra dose today as well.  Her oxygen was at 3 liters last night and it is down to 2 this morning.  Without oxygen, her oxygen saturation drops pretty dramatically.  If all the wetness in her chest is any indication, we are going to be here a while.

Here is a video of Sophia eating pancakes and watching Pooh.  She only ate about a third of two pancakes.  But she is eating and drinking, just not very much.

The doctor thinks Sophia has an early stage of viral pneumonia.  She doesn’t want it to become bacterial so she is treating Sophia with rocephin (an IV antibiotic).  She is also getting fluids and about 3 liters of O² via nasal canula.

She isn’t too interested in eating, but she did eat a half dozen crackers and about ten bites of mac-n-cheese.  She is drinking water but not as much as usual.

She has a wet cough that seems to cause her some discomfort.  But it isn’t particularly persistent.  Her fever is down and her oxygen saturation is in the upper 80’s (w/oxygen).

The doctor ordered a copy of her chest x-ray from May, and will be comparing it to today’s.  I will report more once we hear from the doctor.  But being that Sophia is doing well so far, and it is the weekend,  I am guessing we wil mostly be on our own.  Other than her nurses monitoring vitals and getting us her meds.

Sophia is pretty restless right now.  I am hoping she will settle down and sleep tonight.  I will update when I can. Good night.