Still here…

We are still here at 7:55 pm waiting on Lucy’s infusion company to deliver all the “stuff” we need to take our girly home.  I knew that it was going to take them most of the day to get things together as Lucy has one very complicated order, but honestly I am soooooooooooo ready to go home!

Lucy is not having a good day pain wise, requiring more PRN doses of pain meds than she has in the previous two days.  Lucy’s liver labs are trending up,  indicating TPN cholestasis.  We have run a very minimal amount of lipids, eight hours a day, for the past three days hoping that she would tolerate it, she is not.  We are not going to run any lipids next week, for several reasons, but it all comes down to keeping Lucy comfortable.  We are looking into an alternative lipid source for Lucy, Omegaven,  but it is not FDA approved and we need to apply for compassionate wavier.  It’s never easy, but it’s worth it!

We are tired and anxious, emotional and excited…. 

We just want to go home!

The “D” Word…

It’s officially in the works… discharge or the “D” word as it is know around here!  Everyone is working hard around here setting things up for us to go home tomorrow so that we can get on a plane destined for Disney!  Our infusion company is getting all of Lucy’s new IV meds drawn up, and tomorrow her new TPN orders will be faxed over so that they can set to work on making up her new fluid mixture.  All of this needs to be done, and couriered over to the hospital, in order for us to go home tomorrow.  We arranged with our infusion company to drop ship Lucy’s weekly supplies, TPN, and meds to Florida on Monday so that we don’t have to bring it ALL with us on the plane.  We can’t believe that this is really happening, we are so excited, as are all of the people here at the hospital!

Our wish granters from Make-A-Wish came to the hospital tonight to present our final wish package to us.  Megan was sitting next to me as they were sharing all of the details of our trip with us, she was so excited she kept bouncing up and down.  We feel so blessed to be given this opportunity… it is truly going to be a trip of a lifetime!  Make-A-Wish has been absolutely wonderful, taking care of so many of the details, and waiting on Lucy to learn if she would even be well enough for her wish trip.  I was never so happy to call them and say we are going to Disney!

Lucy’s sleep issues are still there, Dr. R and I talked about it today, he believes that she is having a paradoxical reaction to the Dilaudid.  Instead of acting like a sedative for Lucy it is doing the opposite, it is revving her up.  We are going to switch her back to morphine and see if that helps her.  It was also decided that Lucy will have a Foley put back in for our trip because she continues to retain urine and fluids. We are going to have to use Lasix daily which creates a lot of extra urine, not good for a bladder that doesn’t empty well on its own.  When we return home from our trip, we will come back to the hospital where we will have the Foley pulled and be taught how to straight catheterize Lucy.  She is scheduled for a VCUG and urodynamics study in a few weeks, at that time we will hopefully learn more about what is causing Lucy’s bladder issues.

Wheelchair clinic was able to take Lucy’s chair and make some modifications so that it will hopefully be more comfortable for her.  They made it so that it would recline more at a 110 degree angle.  This way it should not put as much pressure on her extra sensitive belly when she is sitting.   Today was the first time in three weeks that we were able to sit her in her chair and go for several walks.

We want to thank all of you for your love and support, thoughts and prayers, especially throughout this difficult admission!  We could never do this alone…nor would we want to!

Withdrawal…

Lucy has been experiencing withdrawal symptoms.  She has been a lot more irritable, jumpy, and sweaty the past 24 hours.  She woke every four hours in pain last night and required some PRN doses of Dilaudid to get through it.  Of course when Dr. R came in to see her this morning she was charming and pleasant, the moment he left, her mood changed…go figure.  We adjusted her PRN dosing today in hopes of giving Lucy the pain relief she needs at the same time attempting to decrease her dependency on the med.  She did have a good nap today which helped some with her mood, but what helped her mood the most was seeing the kids tonight.  Distraction is a good form of medicine!

Lucy had a renal scan today, it looks like we may have to repeat it as they were unable to get all of the information that they needed from it.  Lucy was having a difficult time with pain when they tried to scan her left kidney, she was not very cooperative and therefore they were unable to gather all of the data that they needed to make a report.  Her right kidney, however, appears normal.

We pulled Lucy’s Foley last night, and good new so far she is going on her own, but does have some residual left in her bladder.  It is unclear yet what we are going to do about it.  We are going to give her another 24 hours before we make any decisions. 

I am experiencing some withdrawal symptoms myself, withdrawal from life.  I am so grateful for the opportunities I get to have with Lucy, but I miss being together as a family under the same roof.  The kids are really doing remarkably well, and have not been asking as much when Lucy and I are coming home because they know that it must be soon if we are leaving for Disney on Sunday.  I’m hoping and praying for that!  Drew and I discussed tonight that it will be a tough weekend if for one reason or another plans change.

To Sleep or not to sleep…

Lucy is choosing not to sleep today, bad decision in my opinion, but she really isn’t interested in my opinion.  She is tired, just can’t seem to fall asleep again.  Dr. R came by this afternoon and ordered her to take a nap, she is refusing to follow doctor’s orders.  Maybe a day of no napping means a night of great sleep…here’s hoping! 

She is officially off the IV Dilaudid and only using PRN doses when needed.  She feels clammy and is quite jumpy, all part of the withdrawal process.  There was a rush to wean her off of the IV Dilaudid today because they wanted to start Lucy back on lipids tonight.  Lipids and Dilaudid are incompatible,  which means that you can’t run them at the same time.  We have four points of access coming off of Lucy’s double lumen Broviac, but even with all of that we don’t have enough access to run all that she needs to have run so something had to go.

She had therapy for the first time in three weeks this morning.  It was difficult to see her struggle through it, she attempted to stand up only to realize that she can’t.  We offered her assistance but her pride is just too big.  When Lucy is ready she will show is what she is capable of doing, for that I have no doubt.

We have several tests scheduled for tomorrow all of which are looking at her renal and bladder function.  It is believed that Lucy’s hypertension is related to her kidneys not functioning.  We know that when we are able to pull fluid off of Lucy’s body that her blood pressures come down some and her heart rates return back to her baseline.  After a few hours her blood pressures start to increase and her heart rates decrease as well as her fluid output.  As for her bladder, the plan is to pull the Foley at 2 am and at 8 am do a post void residual to see how much urine is in Lucy’s bladder.  We will do this several times throughout the day tomorrow.  If it looks how we think things will look, she will have a Foley placed again tomorrow evening and we will keep that in until we return from our MAW trip.

After watching me type all of this Lucy has fallen asleep, and so must I.   Good night, sleep tight….     

Some Things…

Lucy has her days and nights confused…some believe that this is a result of our stay down in the PICU.  Perhaps, but I feel that it goes hand in hand with her dysautonomia.  Anytime you mess with Lucy’s “schedule” you deal with the consequences!

Lucy is waking for the day at around 4:30 am.  She stays awake until around 2:00pm, this is a very long wake period for her.  When she finally falls asleep she sleeps until sometime between 8 and 9 pm.  She would probably sleep longer, but we are waking her to change out her TPN and start three hours of continuous med infusions at that time.  She falls back to sleep between 11 pm and 12 am, and wakes for the day again 4:30 am.  Lucy’s body obviously needs sleep when she can get it, so we are trying our best not to disturb her.  When we get home we’ll have to work on this schedule.

Dr. R came in this morning to discuss some things…  I told him that I needed to get in touch with Make-A-Wish today to let them know if we are a go for Sunday, his answer, “I’m going to say yes, until I say no.”  I think that is as good an answer as I am going to get at the moment.  Lucy is doing well with her “rehab”, we are being more aggressive with the weaning process because we are on sort-of-a time line, and also because she appears to be handling the changes.  She is a little more irritable today and jumpy, all related to the withdrawal process.  The clonidine patch is helping with the weaning process and at the same time contributing to her sleeping issues.  Clonidine is often used to help with sleep, because Lucy is on the Clonidine patch it is affecting her at all hours of the day not just the night.  Weaning Lucy off of her pain meds is just one of the things we have to accomplish before going home/to Disney, we need to address the issue of her hypertension, and her bladder.  Dr. R put in for a consult with nephrology and urology today.  Lasix is helping to draw fluid from Lucy’s body, but the fluid just comes back after several hours which leads Dr. R to think that Lucy’s kidneys are not functioning correctly, that and her labs are indicating this as well.   I have been waiting all day to meet with the nephrologist, at this point it is more likely that we will meet tomorrow.

Urology stopped by this afternoon and we discussed Lucy’s bladder issues.  At some point in the near future we are going to have to put Lucy through a urodynamics study to assess the function of her bladder.  In the meantime we talked about straight cathing Lucy every three hours to help her empty her bladder completely…ugh.  For now I am a fan of the Foley, it can stay in for thirty days, but comes with a risk of infection.  Lucy is immobile at the moment so having another tube with a bag attached to the end of it is really not inhibiting her and it prevents having to be cathed every three hours.  Just some things…       

Slow and Steady…

Just look at who is sitting up tonight…Miss Lucy!  She sat for a few seconds tonight, just long enough to have her picture taken.

Things are s-l-o-w-l-y starting to improve.  Lucy’s labs are all trending in the right direction and her blood counts are holding steady.  We are being more aggressive with the Lasix which seems to be working to pull off A LOT of extra fluid.  Her feet and hands are dry and scaly from all of the swelling they have endured these last few weeks.  We are noticing a decreasing trend in Lucy’s blood pressures with each dose of Lasix.  Her heart rates are creeping back up to their normal 150’s.  We have noticed big changes in her heart rates and blood pressures when we try to move Lucy from a laying to sitting position, this is due to the fact that Lucy has postural orthostatic tachycardia syndrome (POTS).

Lucy officially began the weaning process off of the Dilaudid this afternoon, we turned down her drip by twenty percent.  She is doing well, the only thing that I have noticed is that her face is more flush.  The hope is by the end of the week to have Lucy off of the Dilaudid drip and only needing PRN doses of medication if necessary.  We are taking things one day at a time…

I had a great day with our other three children!   I surprised them by picking them up after church today…I just love a good surprise!  Drew joked with me when I left asking me if I remembered how to drive.  He stayed with Lucy for part of the morning and afternoon so that the kids and I could go out for lunch and do a little shopping for our up coming trip.  The kids and I talked about some of the things Lucy needs to to before we can come home and get on an airplane destined for Disney.  They seemed ok with knowing that we may have to wait until Lucy feels better to go on our trip, but the moment she does we are going.  Everyone here has their heart set on us leaving for Disney on Sunday, as do we. 

Date Night…

Drew, Lucy, and I are spening our Saturday night together.  We did laundry, washed Lucy’s hair, and watched a movie together.  So normal, yet not.  Drew had yet to spend a night at the hospital during this admission for many reasons.  I miss him, it is nice to have him with us tonight sleeping next to me in the reclining chair that I have spent many a night next to Lucy’s crib resting in.

  Drew was able to pick Lucy up for the first time in weeks, when we were changing her sheets.  It is not easy picking her up, she has eight lines coming off of her body and she is uncomfortable when you bend her.

It has been a relatively uneventful day.  Dr. R came in this morning and said that we have A LOT to accomplish in a week, he has his heart set on Disney for us too.  Blood pressure is an issue,  it is still high and we need to try and figure out what is going on with that.  Lucy has gained about a kilogram of fluid weight this admission and we are using Lasix to try and pull it off of her…it is a slow and steady process as we do not want to upset the delicate electrolyte balance in her body.  The hope is if we can pull off the extra fluid perhaps her blood pressures with go back to her normal, which FYI were low.  We have yet to start the weaning down process, but there is talk of using methadone as a step down drug for her because it can be administered IV and you can go home on it.  The bladder issue is just that an issue that needs to be addressed, for now we are keeping in the Foley. Oh yeah, we have to work on getting Lucy to be able to bend much less sit in her wheelchair.  I know it’s a lot, but it’s Lucy.  

As for tonight, three of our kiddos are having a sleepover with the Puff’s.  Oh do I miss those three…I miss tucking them in at night and smelling their clean hair.  I am so blessed to be able to at least spend my nights with one of my kiddos and tonight my husband.  I am looking forward to being all together as a family of six… soon, I hope.

Thanks as always for you thoughts and prayers, love and support.