Post Op Update 2

Emma is recovering in the cvicu. We all had a long night. She got back up to the unit around between eleven to midnight. Sarah and I each averaged around 2 to 3 hours of sleep. 

Little rough course when she first got up here but settled out as the night went on. Now we are  just weaning down on multiple inotropic medications and trying to move her more towards extubation. All of her numbers and labs are looking pretty good which are answered prayers. So right now we are just staying the course and making adjustments as needed. Emma is "eating" through pain and sedation meds.  We hate seeing her in so much pain.

We appreciate all the thoughts and prayers as we continue on this journey. God is good, all the time... And all the time,  God is good!

Daddy Scott

Post op 1

Prayer Requests:

1.  Emma is running a fever and had to be placed on a cooling blanket and packed in cold clothes.

2.  Her blood pressure is low and she is requiring quite a bit of volume and inotropic support in the interim.

3. She is not paralyzed so she is trying to remove her breathing tube even though she is not ready and is in pain when her meds wear off.

It will be a busy night keeping her calm and dealing with post op issues. 

Thank you for the continued prayers.

Surgery Update 5

We just spoke to Dr. Baird and everything went well.  He did the bidirectional Glenn, repaired her tricuspid valve, and took the stent out of the LPA.  Her function was already slightly improved and all her numbers look good.  She did have some excess bleeding post op, but Dr. Baird stayed in the OR until it had stopped.  Overall, he was pleased with the procedure.  Now we wait and see how the right ventricle recoups with less volume overload.  

We hope to see her in about an hour or so.  They will keep her sedated and incubated tonight to let her body heal.

Please continue to pray for our sweet girl as the next few days will be hard for her.  Post Glenn tends to bring severe headaches.  

Pray that her heart function will return to normal and her body will accept this new repair.

Pray for the doctors, nurses, and respiratory therapists caring for Emma.

Pray for a smooth evening without much bleeding, pain, rhythm or blood pressure issues.

God is good!  All the time! God is good! 

Surgery Update 4

We were moved out of the surgical waiting room since it closes at 7pm.  We are now waiting in the CVICU waiting room for updates.  The CVICU nurse just informed us that they were finishing up and beginning to close her chest.  It will be awhile before we get to see her, but apparently she is doing well.  Thank you again for the continued prayers.

Surgery Update 3

Emma is in bypass and is doing well.  Now the reconstruction and repair begins.  Please be praying for Dr. Baird and his team as they skillfully and carefully work on my precious girl's heart.

Surgery Update 2

Emma is doing good.  They have all of her lines in and are beginning to make the incision.  We will have another update around 4:00.  Please continue to pray for our sweet girl.

Surgery update 1

Emma just went back for surgery!  The plan is to do the bidirectional Glenn and repair her tricuspid valve.  Prayers for a successful surgery and smooth recovery please.  God is good!  All the time!  God is good! 

In a valley: opening my heart

It is easy to thank God for blessings. It is easy to praise him during our mountain top times.  But what about during the storms of life, the valleys, the hard times? Is it easy then? 

We have been trudging through the valleys for awhile now...I see the mountain top, but the climb is hard and filled with so many obstacles. I'm going to be perfectly honest, I am exhausted. I feel mentally, emotionally, and physically drained.  .We have been in the depths of hospital life since December 8. I have watched my bubbly, sassy, busy little girl become extremely exhausted, angry, and anxious.  Does she have her moments of happiness, yes; however, she has many more moments of unhappiness.  This absolutely tears my heart into a million pieces. I know we are doing what's best for her overall health; however, the process of getting there is extremely difficult.  

I yearn for normal...our crazy not even close to normal but our normal none the less (I way overused normal in that sentence huh?). 

I long to get Emma up early for all her therapies...giving her breakfast, getting her dressed, administering all her meds, and awaiting her busy day full of therapies, school, development strengthening activities.   I ache to hear her "singing" and "talking" to her kitty cat as she is going to bed, watching her scoot across the floor to get what she wants, share her food with Max, wheel herself to her best friend's house, and share smiles and laughs more than screams and tears.

I'm guess I'm pouring my heart out not for pity or sympathy, but to show all aspects of this journey to our loyal blog followers.  I want you to see that we have our moments...our low moments when it is hard to feel positive.  However, through it all, I serve a mighty God who is faithful...even when times are hard.  I serve a God who doesn't promise that times won't be hard, but does renew my strength when I feel the lowest.  

So, I encourage all Em's loyal blog followers to embrace your normal and don't take the little things for granted.  Take your kiddos out and enjoy the beautiful weather, read them one more story, love their inquisitive nature, spend quality time with your spouse, and don't forget to thank God for the blessings...even during the storms.   

Emma update:

We are still in a holding pattern for Emma's next surgery, but until then they are giving her a "big gun" antibiotic to try to knock out the infection.  We are consulting with a lot of specialists to try to determine the cause of the ascites and infection.  Please pray for the infection to cease, Emma's pain to subside, and a safe plan to get her to surgery.  

Thank you for the continued prayers as we climb this mountain.  God is Good!  All the time! God is good!

Pre-op Update

Surgery is now off.  Fluid from abdomen came back with potential infection :(.  Don't want to risk anything until we know more.   We will update everyone as we know more.  Information is just now coming our way so we are trying to process everything.  Please pray that they can figure this infection out soon.  

Cath Update 3

Emma is out of the cath procedure.  It went very well.  She behaved herself during the procedures that went on while she was in the cath lab.  She had the old abdominal ascites drain pulled and a new one placed.  They were going to attempt to do a dual lumen picc placement but opted to not do that after talking with all the teams.  After placing the abdominal drain in, they proceeded to the cath.  Her cath results were good.  Everything, number wise, looked pretty good.  The only thing they did was coil collaterals. This is a HUGE blessing!  Currently she is in recovery where they are just making sure they don't need to do anything to her prior to going back up to the floor for the night.  Her O2 sats are a little low and heart rate a little higher which is to be expected due to her coiling of collaterals and low hemoglobin.  So, as of right now, we are still on for the Glenn procedure tomorrow morning.  We appreciate all the thoughts and prayers!  Prayers for no fevers, low pain, and an uneventful night full of rest.  We will give a more I depth update this evening. God is good, all the time.  And all the time, God is good!

Cath Update 2

Emma is doing well.  They were able to successfully place the abdominal drain.  She is now undergoing the cath.  The cath team was able to get access on the right side and Emma is tolerating the anesthesia well.  Prayers for successful cath, good heart pressures, and smooth recovery.

Cath Update 1

This silly girl just went back for her cath and new abdominal drain.  Please pray for her as these cath numbers will help us make the next surgical procedures.  

Boston Update 2

It doesn't seem that long ago when we were looking out the same windows on the 8th floor looking at snow falling.  Today is a snowy day, and a perfect day to sit down and type an update for the blog!  Emma is doing pretty good all things considered.  She is dealing well with everything that she has to go through being that she has been in the hospital for months now.  As far as her care goes, Boston is doing a very good job trying to arrange and figure out everything for the near future.  We are scheduled currently for a heart catherization procedure on Monday.  We initially were scheduled to have this procedure on Friday...but they had a cath lab (location where they do procedures) down and out, and then their electronic medical records software went down as well.  As a result, our cath was canceled as we were one of the last cases for that day.  Barring that all goes well in the cath lab and we find out that she is good to go for the next surgery, she will more than likely undergo heart surgery on Tuesday.  This weekend will be pretty uneventful while we prepare for everything on Monday and potentially Tuesday.   They are also trying to arrange a new PD drain placement (Emma's is not working), as well as a PICC line change (to give more access) on Monday as well.  We will update more on Monday before, during, and after the procedure. 

As always, God is good!  All the time!  And all the time, God is good!

Specific Prayer Requests:
1. Emma can stay infection free.
2. The team(s) can work together to develop best plan for Emma.
3. Emma's pressures will look good in the cath lab so we can move forward with surgery.
4. Pray for the doctor's, nurse's, and all her team here at Boston that are taking care of her.
5. Pray for her upcoming surgery if the pressures look good.  Pray that it is successful and she has a good recovery.

-Scott

Boston Update 1

So to give everyone an update: Emma'a was flown via children's health jet yesterday morning to Boston. We arrived in Boston yesterday afternoon and began a vast array of testing. Since we have been Boston, Emma has had two heart echoes, multiple lab draws, x-ray, medical consults, and several other things to come.

 We will be talking with the Cath team to determine the best date to take Emma into the Cath Lab to look at her heart. As soon as I have more details on that I will update the blog.

 As of right now, Emma and I are doing our best to get rest,talk to lots of doctors and other medical personnel, and stay entertained LOL. 

We appreciate the prayers as we move forward to try to get Emma everything she needs. 

Below is our Address while we are here:

 Boston Children's hospital 

ATTN: Emma Stewart

8 South

300 Longwood Avenue

Boston, MA 02115

God is good!  All the time!  God is good! 

Made it to Boston

We made it to Boston

Back to Boston

There is so much going on and don't even know where to begin.....

First of all, Emma's heart function and tricuspid valve regurgitation(TR) have taken a hit.  Why??  That is the million dollar question.  Last Wednesday, the 8th floor staff got an echo that showed worsening function and TR.  Emma was also quickly accumulating fluid in her abdomen, so it was decided to move her to the Cardiac ICU, put in a abdomen drain and start her on a medication to aid in her heart function.  At this time, Boston was also contacted and arrangements were starting to take place to transfer Emma back to Boston.

Fast forward to today.....

Emma's heart echo yesterday showed mildly improved heart function and worsening TR.  Basically, Emma needs to get to Boston to get a heart cath and potentially heart surgery.  She continues to have persistent accumulation ascites as well.

We just heard  from insurance on official approval for Medical transport and now need word from Boston that they have an ICU bed available. 

There are a lot of unknowns in our near future, so we appreciate your prayers as we move forward to determine a plan to help her precious/fragile heart and body.  

Prayers also for:

1. a safe transport

2. Wisdom for Boston medical/surgical teams

3. Strength and calming for Emma

4. Peace and understanding for Scott and 

5. Successful testing and procedures 

Prayer Request

Emma got to take a stroll around the unit today.  

We learned some new details today about her health that we are still trying to process, but in the meantime, please pray for our sweet girl....some hurdles to conquer in the near future.