A Quiet Day…

We had a very quiet day…just what we needed.  We did a lot of reading, took a nap, and watched Cars and Nemo, and Cars and Nemo, and Car and Nemo… Nothing new to report today…hooray!  Labs remain stable with the exception of  her lipase which has been trending up all week, not surprised since her pancreas is enlarged.  Lucy remains comfortable on the dialaudid IV, hoping...

Exhausted…

We are exhausted!  We have been here for two weeks with no real end in sight. As you know, we have a very important trip coming up, in approximately ten days.  It was decided that we will wait until Monday to make any decisions about going or postponing our trip.  We will go, it’s just matter of when!  Make-A-Wish will bend over backwards to make this happen for us…amazing! ...

Dear God…

Thank you for this day!  Lucy is s-l-o-w-l-y starting to feel better.  She slept most of the night and woke feeling more like herself.  Better yet, she is stable enough to be moved back to our regular floor.  I will update when we get a room. ...

Shhh…

Lucy is finally sleeping after being awake for nearly 40 hours, unbelievable!  Surprisingly, for being awake for as long as she was, she was pleasant and interactive when you would engage her.  She is experiencing episodes of break through pain that suddenly wake her screaming and send her heart rates soaring…poor baby.  We are going to have to go up on her dosing to keep her comfortable...

Side Effects…

When you have as much going on in your body as Lucy does you have to pick and choose what you are going to try and fix and what can wait.  Pain control was of the upmost importance so we set out achieve that with the hope that once we achieved it some things would improve for her.  It took several days and did NOT come easily, but I feel that we have achieved a level of pain control...

Those baby blues…

Lucy’s eyes have been open and focused on us a lot today!  I think that we have achieved a level of pain control that is keeping her comfortable, a continuous infusion of IV Dilaudid and PRN doses every two hours!  One of the side effects of narcotics, in particular morphine base narcotics, is intense itching especially of your nose, lips, and eyes.  We are using IV Benadryl every...

A Good Morning…

We are waking to a baby who has her eyes open, laying in her crib, looking very comfortable and at peace.  She is SO MUCH more aware this morning than I have seen her in over a week!!  Sometime during the night her nasal cannula came untapped from her cheek, we watched as her O2 sats stayed in the mid nineties and decided to leave it off.  She has been breathing on her own ever since....

Happy Easter…

(This picture is from Easter 2010…just remembering.) I wanted to post earlier but have been busy soothing an cranky, irritable, and agitated baby most of the day.  We have been battling pain control.  Part of the battle is Lucy’s super high tolerance for narcotics, we are almost maxed out on her dosing.  Part of it is not knowing what is causing her pain and trying to find fixes...

Lucy Baby…

After a horrific night it was decided that Lucy needs more long term pain control, the pain management team was called in to consult on Lucy’s situation.  Ketamine was used initially because we thought we may only need it on a short term basis, it is not for long term use.  Lucy was requiring so much of the med that it created a whole slew of issues from high blood pressures to nightmares/hallucinations. ...

Let me try and explain…

There is a lot going on with Lucy and I am going to do my best to try to summarize things. Lucy’s body is complicated due to the fact that she has mitochondrial disease, a disease that can affect everything in the body down to the cellular level, as a result she has a lot going on with her systemically.  A person with mitochondrial disease is at “highest risk  for neurological and organ...

Rough Night…

We are trying to keep Lucy comfortable, she is needing more meds to achieve this.  Increasing her ketamine dosing has caused her blood pressures to soar, currently 184/114, and her heart rates to plummet into the 90’s from the 160’s.  Agitated and irritable would be how I would describe Lucy.  She has developed petechia, a very splotchy red rash, all over her body where ever anything...

Hoping for more…

Memory making opportunities…like these!   ...

Sleeping Beauty…

  Lucy is on a continuous IV infusion of Ketamine, Ketamine boluses as needed every hour, and morphine when necessary.  The goal is to keep her comfortable.  She continues to be on the Vapotherm which is helping her to breath and stay comfortable. Her blood counts took a huge hit, and as a result we are currently transfusing her with packed red blood cells.  I can’t wait to...

In the PICU…

Lucy’s pain increased tremendously overnight, her heart rates were over 200, and her need for increased oxygen kept growing.  I noticed around midnight that Lucy’s body was very swollen especially her abdominal area.  At this point she was so uncomfortable that she wanted to crawl out of her own skin.  Her pain was uncontrollable.  An stat abdominal x-ray was ordered at around...

Prayers Please…

Lucy is in respiratory distress and is being moved to the PICU ASAP! Will update as soon as I can...

Tough times…

I want so badly to write that things are going better… sadly they are not.  Supportive medicine, that is the term that Dr. R is using to describe what we are doing for Lucy.  We are trying our best to manage her pain, and let me just say that has NOT been easy.  I believe that we have adjusted Lucy’s morphine dosing six times since starting her on it.  Most recently we have decreased...

Transfusion…

The rash that we are seeing is thought to be broken capillaries caused by all of the edema.  The resident called Dr. R  to consult with him about Lucy, thank God, and he feels that she is in need of blood product tonight.  Lucy’s platelet count is low.  How low, we just don’t know because we are having a heck of a time getting any values from her blood because her blood is so...

Critical…

Things are not going well for Lucy…prayers are very much needed! Yesterday’s lab work was unable to be processed because there was too much lipid detected in her blood for the machines to get any values.  Today we redrew the labs twice, once from her line and another from her arm, only to have similar problems.  It turns out that Lucy’s liver is not functioning, she is no longer metabolizing...

Ugh..

Ugh…fevers, pain, discomfort that pretty much sums it up.  Lucy’s fevers are fierce and persistent, sadly there isn’t anything we have given her that helps to reduce her fevers. IV Toradol reeked havoc on her system, causing her to bleed out of too many places.  Tylenol has done nothing to bring her fevers down, and because of this and the fact that we have to administer her Tylenol via...

The view from here…

Things continue to remain the same…...

Contact & Droplet Precautions…

This afternoon Lucy had nasal swabs done to check for any viruses because she continues to run persistent high fevers of 104 plus degrees with no improvement in her symptoms.  Less than thirty minutes after the lab received her samples the green sign was added to our door which reads droplet precautions, aka wear a mask if you do not want to be exposed to any airborne pathogens.  Lucy...

Something Exciting Is About to Happen…

In the midst of all of the chaos we have something we are very much looking forward to doing.  In January while in the midst of crisis, it was mentioned to us that Lucy was eligible for a make a wish referral.  I’ll be honest, at first I was so sad to hear the mention of a Make-A-Wish for our girl because in my mind it meant that things were not going well.  Let me be even more...

Still…

Lucy is still running high fevers and cultures are still negative for any growth.   Nobody is all that surprised because the feeling is that it is fungus and fungus can take a while to grow on a culture.  We did send off to the lab separate fugal cultures to see if we can’t get some information back sooner than her blood cultures.  We are continuing to treat her as if she has...

Another Long Night…

Lucy had sustained fevers of 105 most of the day and night.  Temperatures that high make for one very hot and irritable baby and one worried mama.  Rectal Tylenol did nothing to bring down the fevers.   IV Toradol seems to be helping a little, but is causing irritation in her stomach lining which is causing some gastric bleeding.  We are going to increase her IV Protonix,...

The last two standing…

That’s right, only two out of the six of us did not get sick this week.  If you want to look on the positive side, that’s 1/3 of our family that stayed healthy.  When Drew arrived home last night Jack woke up with a fever, how convenient of Jack as Drew was already going to be taking Megan to the ped’s office in the morning.  Jack and Megan tested oh ever so faintly positive for strep...

A Quick Morning Update…

Pain, pain go away…please don’t come another day!!!  It has been one long day/night/morning….Lucy’s heart rate when she is sleeping is in the 180’s-190’s, when she is awake I won’t even tell you because it is too scary to write.  We are using several pain meds to try and keep her comfortable.  Both Lucy’s g-tube and j-tube are attached to drainage.  She is pouring out pea green...

3:29 am

We moved up to the floor at or around midnight.  Everyone has been on alert as Lucy is showing signs of sepsis.  The ER held her until everyone on the floor was ready for her to come up, once we arrived she has been very uncomfortable, retching, shaking, and screaming in pain.  The first round of antibiotics were administered in the ER, and now we believe that whatever bacteria Lucy...

Oh how life can change in an instant…

Lucy went from playing outside on the driveway to complaining of belly pain and laying on the couch with a fever of 103.2 all in the course of an hour.  She went from good to bad just like that.  A quick change of plans were made, bags were packed, calls were made, and we were on our way to the DuPont ER.  We are here, labs and cultures have already been drawn, and we are waiting for...

"Mommy sick”

We are still here…just not here if you know what I mean.  I have been hit with some upper respiratory yuck that has knocked me down, only I can’t stay down because I have four kiddos and a busy life to attend to.  It takes A LOT to knock me down…so A LOT is what I’ve got.  The yuck that has invaded my body has caused a sinus infection, bronchitis, and oh yeah borderline pneumonia.  ...

Results…

Sometimes results are not always what you want to hear, sometimes you expect them, sometimes you are surprised by your reaction upon hearing what they are, sometimes you wish you never heard them, sometimes your glad you did, sometimes… On Friday evening we met with Dr. B, Lucy’s GI motility specialist, to go over the results of her antroduodenal manometry study.  I won’t drag this post out,...