Showing posts with label CDH. Show all posts
Showing posts with label CDH. Show all posts

June 7, 2015

Sunday

Healing is often a two steps forward, one step back dance and that's how the first part of today felt. Clara woke in very high spirits and eager to get out of bed and play. We made a couple trips to the rooftop playground and enjoyed a very fun visit from Mama K. She played some Hungry Hungry Hippos, got her fingernails painted, read some books, looked at her newest magazine, watched some movies, tried out some parts of the playground, even tentatively went down the slide.  She was still walking a little gingerly, still a little off-balance, but definitely wanting to be more active.  Unfortunately, around lunchtime we lost her IV which was pretty painful in and of itself, but also put her behind on pain meds and unfortunately led to nearly two hours of trying to get another IV placed. There was lots of sticking and digging and tears and pain. I know it was hard for her and the grownups were struggling to keep tears back too. With providential timing, just as we were finishing the IV, she got a special teddy bear and balloon delivery from the gift shop from a dear friend.  Brightened her right up.  Once we got through that trauma, she took a very long nap and woke with the sweetest little disposition. We had a couple of visitors this afternoon which was a good distraction for her. The afternoon and evening were a series of steps and sometimes bounds in the right direction.  She had lots of fun playing with the bubble gun she got as a gift from Ms. Bri, she was out of bed a lot, walking with more confidence.... tonight we even found ourselves saying, "SLOW DOWN!"  She's eating and drinking more and more and I think we will probably ask to try to get that IV out tomorrow morning and see if she'll drink enough to maintain.  She even pooped tonight.  I do not think that home is too far off. 

Thanks for your continued love and prayers.  
















June 6, 2015

Hospital Legs

Those of you who have been through this surgery before told me that the first 24 hours would be wicked, but that even by the second 24 hours there would be significant and noticeable improvement.  I should have believed you, but if you had told me last night at 10:30PM that Clara would have had the day that she had today, I would never have believed you.

She woke up this morning after a night of really low sats despite 1.5 liters of oxygen and a fitful, painful, upset sleep.  She ripped those nasal cannulas right off and hasn't had to look back at all from a respiratory standpoint. Her pain was still a little rocky this morning, but we stopped her morphine and switched to a scheduled oral lortab to go with her scheduled IV toradol and that has been the magic pain combination to keep her happy.  Looking back, I know we needed that morphine, but I think it also made her feel crummy in a lot of ways.  She also had a pretty distended tummy this morning from gas.  We did a glycerin suppository, but she still hasn't had a bowel movement, so we'll keep working on eating and drinking more to get things moving in that department.   After a good morning nap and a little food to eat, we loaded Clara up for the first time in the wagon (or the "bear chair").  She was very resistant, but once we got going, she seemed to really enjoy herself.  There's a nice rooftop playground and terrace on the 12th floor, so we went there and got a little fresh air and watched a few other kids play.  Then we came back down, gave her a sponge bath and clean gown to go with her clean bedding and got her settled in for an afternoon nap.  She rested very comfortably this afternoon, so I ran home to nurse Eloise and see her a short bit.  She was still sleeping when I got back a little after 3:00 and woke again around 4:00.  We did an x-ray to check and make sure that her tummy pain was just gas as we expected and her colon is very dilated, so hopefully that will continue working itself out and she'll get more and more comfortable.  Her appetite was not quite as good this afternoon and we were a little late getting her the toradol and we could tell.  She had some chill time in her bed, reading and watching movies and letting her Daddy make balloon animals for her.  And once her meds were back in her system, we loaded her up again for wagon ride #2 (this time with Daddy).  Back to the rooftop terrace and a little stroll around the hospital.  We got back to the room about 7PM and she sat upright in a chair for the first time for a few minutes while I attempted to fix her hair.  It's going to take a lot of conditioner to undo that mess in a few days!  After some time dangling her feet in the chair and before she headed back to bed, she stood for the first time.  It was only about 5 seconds and I think it was both a little painful and a little fearful, but she did it.  I headed back home once more to get Eloise settled for the night and thought that Clara's work for the day was done, but when I got back to the hospital a little before 9, she said she was ready for another ride.  This time she took a few steps from her bed to get into the bear chair and after our stroll walked about ten feet with only a little support to get back in her bed.  I am, onc again, stunned.  She has shown improvement nearly every hour of the day.  There is still pain, we still have to get her eating and drinking better, we still would like to see some poop.  But her spirit was back today and there is great hope in seeing how much progress she has made in the past day.  Yesterday I hoped for brighter eyes, less pain, and stronger breathing.  We got all of that and more today.

I have also felt today like I've gotten my "hospital legs" back a little more.  It's hard to believe that it's been four years since this was our home and our routines revolved around shift changes and med schedules.  There's a strange almost muscle memory to being back in this place again and while it felt kind of stiff and dream-like at first, today I felt like I was back in the rhythm again.  It's like my car can autopilot through the parking deck, grabbing the ticket and zooming into my standard spot.  My feet carry me mindlessly to the elevator and through the hallways.  My eyes are naturally glancing at her numbers on the monitor and processing what they mean.  My mind is thinking about her med schedule and setting mini-goals for parts of the day, balancing her pain needs, nutritional needs, and other concerns.  All these habits were like second nature for so long... I'm so very thankful that I won't need these hospital legs for more than a few days this time, but it's a strange experience to feel myself settling into that role as parent, advocate, and caregiver all over again.  We've had great staff taking care of us and it's been really wonderful to connect with some of our old hospital friends who have come and checked on us, too.  No one ever wants their child to be in a hospital, and not a minute longer than necessary, but this place is special to us and we are grateful for it.

Tomorrow we hope to really get her eating and drinking a lot more.  We can't pull that IV until she's consuming a lot more orally.  We'll also try to help her spend some more time on her feet and building her physical strength and endurance.  There's a great playroom on this floor that she's excited to try.  She's passed gas today, so things are beginning to move, but a poop would be bonus for tomorrow.  Folks have asked when we'll go home and there's really no way to know quite yet because we have to let her set the pace.  But my guess right now would be maybe Monday.

Here are some pictures of Clara wow-ing us all today with her progress:

Morning Lion King Viewing (1 of 284 today):

Our first wagon ride!:




 Outside!

Playing the giant music box with her toe:

Watching the lights on the 7th floor through the windows...


What I came back to after my afternoon Eloise break:


More movie.

Balloon animals by Daddy.  This bee was his masterpiece.


Resting in her bed (see her little poster behind her?... pictures and description of "healthy" Clara for all the staff who might wonder what she's like when she's not quite so pitiful.


 Bear Chair #2:



Sitting upright, checking out her incisions...


 First time standing.  A few tears, but she did great.


 Mermaid prize for her hard work today:


Clara found her legs and I found mine.  I can kind of start to believe you all now when you say, "She'll just keep getting better and better."  She sure is.

Thanks be to God.

June 5, 2015

Recovery

I so often find that my reaction to events is a result of my expectations, realized or not.  I was fully prepared for a difficult recovery from this surgery, a full week in the hospital, and Clara experiencing significant levels of pain.  Then yesterday, when we found that such a huge portion of the procedure was done laparoscopically, I think I unknowingly altered my expectations into thinking that recovery would be a breeze, that our hospitalization would be brief, and that her pain would be significantly diminished.  I do think that she's doing better than she would have if she had been fully opened, but last night and today were not easy.

Her pain has hovered at an 8+ for much of the day.  She has received IV morphine as frequently as every hour and a half and has still been hurting.  She's also getting toradol every six hours.  Because it hurts her to cry, when she is in  pain, her face just twists in silent agony and she holds her breath.  That then makes her oxygen levels drop further and alarms sound.  Her breathing has been shallow and she has required nasal cannulas with additional oxygen support for most of the day.  We had hoped that she would get out of bed today, and maybe even take a few steps, but she was barely able to sit up in bed, assisted, for the five seconds that it took to move cords and replace bedding.  Even though the surgery was laparoscopic there are four pretty significant incisions PLUS her entire scar revision which is a lot of cutting on a tiny person. (See photos below).  Recovery is just hard.  She is hurting and she is confused and sad about it.

I do believe that she is making some progress.  The nausea and vomitting that were so disruptive last night have stopped and while she has not consumed much quantity of food, she has been able to eat some today.  She is peeing which is good and important.  The labs they did from last night's bloodwork looked good.  There are some steps in the right direction, for sure.  But it feels like we have a long way still to go.

She's still receiving lots of IV fluids and all of her meds are IV too.  In order to get her IV out she must be eating and drinking enough to stay hydrated and to be able to take her meds orally.

She is requiring oxygen support right now which doesn't seem to be bothering the physicians, but is something we definitely want to start moving away from.  Her diaphragm is likely very sore and contibuting to her shallow breathing.  It seems likely that she has formed some atelectosis since she has not really been able to get up and about and is avoiding coughing due to pain.  That is probably contibuting to her lower sats.  She's also had tons of morphine and that can lower sats too.  As I write this, she's sleeping with a liter and a half of O2 and is satting in the low 90s.  Just a little concerning for me.  I would love to see her require less oxygen tomorrow.  

And of course, she needs to simply heal from the surgery and be able to get up and move and not need the level of pain management that we've had the  past 24 hours.    Her heart rate has been high all day and she's clearly just not feeling well.

So, we've made some baby steps, but still have a ways to go.  We know that the first 24 hours after surgery are the hardest, so I expect that we'll see her start to make progress on all fronts tomorrow and rally a little.  I really hope that we'll be able to get her eating more and get her out of bed some.  I'd love to see a few more smiles too.

Eloise had a fever for most of the day today.  She has been in excellent care with Mama K, but it broke my mama heart to know that my other baby was not feeling well either and I couldn't be with both at once.  Mama K and Robert took her to the pediatrician today who thinks that the fever is a reaction to the MMR vaccine she received about two weeks ago.  Some Motrin helped her feel better, and we are hoping that she'll be back to her smiley self again soon too.

I think we'll be here for several more days, but we are happy to be in such great care and to have support in other ways at home and with Eloise.  I have eaten well the past two nights, thanks to the generosity of church members and have received so many lovely notes and messages that have been a great source of encouragement.  Thank you.  Still no visitors please, until Clara gets a little stronger.

I'll try to update www.facebook.com/TheHardyLife throughout the day some tomorrow.  Thanks for your prayers.  We love you!




June 4, 2015

Post-Op Report

Hello Sweet Friends,

What. A. Day.  We arrived at 7:30 for check in and were supposed to begin surgery at 8:30.  Unfortunatley, there was another emergency which required the OR, so we got a bit of a late start.  Started pre-op about 9:30.  They gave Clara some oral versed and she got super loopy and sleepy.  The sweetest nurse, Kim, took her from my arms and carried her down to the OR.  It was heartwarming to watch her being lovingly snuggled away from me instead of wheeled away on a cot.  They called about 10:45 to tell us that they had finally started.  We got updates every hour: 11:45, 12:45, 1:45.  Each time the nurse said, "Dr. Petty is still working laparascopically.... I don't know when we'll be finished."  I kept waiting for the phone call that said they had opened her up.  Finally about 3PM she said that she thought it would be finishing up in the next thirty to forty five minutes and that he had been able to complete the entire procedure laparascopically.  We had not anticipated that being a likely possibility and were shocked and delighted.  We got to talk to Dr. Petty after he finished the surgery around 4:30 (and see some really cool images of the surgery), but it was another hour before she came out of recovery and we were allowed to see her.  That last hour just about did me in.  10:00-5:30 was an extremely long and hard day of waiting.  But we are so very pleased that the surgery was such a success.

She has four small incisions where they worked laparascopically.  He closed the hole in her diaphragm which was about 3cm and also spent a good bit of time cutting and repairing adhesions in her bowel (scar tissue that we would expect to be there, but could potentially cause problems). Several of you have asked whether we replaced the gore-tex patch; we did not.  He simply sewed her muscle to the old patch that was already there.  In addition to those, Dr. Petty spent some time revising her old scar.  We'll still be in the hospital for several days, but most likely less than the week that we had planned on.  It was long, and I can imagine very tedious, but completing the surgery without opening her up will make Clara's recovery much easier.

It was a lot of hours of anesthesia for a little person and Clara had a rough time in recovery.  She's been vomiting some and pain has been an issue.  We will have to get a balance of pain management worked out for her.  We want for her to be comfortable and we have not yet hit that balance.  Tonight has been difficult and  I expect that the next couple of days may be continue to be challenging.  She needs to start peeing again, and eating again, and have her pain managed.   We all need some rest.

Having not slept much last night and enduring the emotionally exhausting day today, I am quite weary.  I'll try to write more tomorrow with clarity I don't have right now.  In the meantime, here are some pictures from today.

Many thanks to you for covering us in prayer, sustaining us with your love and concern and providing strength and courage for us today.  We are so thankful.  The scariest part is over, but the hard work of recovery is still ahead.  Please continue praying.






Thanks Be To God.

June 3, 2015

'Twas The Night Before Surgery

Hey folks.  I'm pretty wiped and I still have packing and charging and gathering to do, so I'm going to make this pretty brief and hope to get into bed before too long.  Many thanks to all of you for your continued love and prayers and expressions of support and encouragement.  Just like four years ago, we are humbled and touched more than we can say by community.

I told Clara about the surgery this afternoon and she took it really well.  She's brave and courageous and she is not afraid.  Her first question for me was, "Before I go to sleep and they start the surgery, can I see the tools that they will use to cut me?"  Bless her.

The time has been pushed back a little, which I'm actually quite thankful for.  We will check in at 7:30AM and are scheduled to begin at 8:30.  We're planning on the surgery lasting about four hours.  Then she'll be in recovery for several hours before we get to a room.  Several folks have asked about visiting.  We may get there in a few days, but until we see how she's done and get a sense of pain management for her, no visitors please.  I will update as much as I am able throughout the day on the Facebook page (https://www.facebook.com/TheHardyLife), so feel free to check there for the latest news.

Today, I tried really hard to say yes as much as possible to whatever Clara wanted to do.  We had a great day.  We had a dance party, she gave herself a makeover, we played school in her treehouse, ate pizza lunch and frozen yogurt with our best friends, went to Target, took a nap, had a tea party with one of my old tea sets, read books, and went out to dinner at her favorite Mexican restaurant.  She even got a bonus snack right before bed.  She's picked out a stack of books and some of her favorite pajamas for us to pack for the hospital and she is ready to go.










Keep those prayers coming.  We're deeply thankful.  We know that she has the very best surgeon and an even greater God.  She's in good hands.

Thanks be to God.

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