Tuesday, December 16, 2014

Evening Update

Emma is doing pretty good tonight except being what appears to be uncomfortable and unable to really sleep or rest.  All in all today, she has made really good strides forward.  She had a chest tube removed, was able to come off of CPAP way faster than anticipated and be put on a nasal canula, ate a little food, has had decreased drainage from chest tubes.  Tonight, she is uncomfortable though and running a low grade temperature.  So, we are going to start looking into possibilities for what might be causing this temperature, while trying to also get her to rest.  Right now, Sarah is laying in bed with her and they are both watching The Voice.  This is a short update, I know, but we will update more tomorrow. 

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

Prayer Requests:
1) Pray we figure out what is causing this temperature.
2) Pray Emma becomes more comfortable.  That pain is eased.  That we can help her in any way possible with this.
3) Pray for the medical staff taking such great care of her.
4) Pray that she continues to progress towards not needing these chest tubes.
5) Pray her lungs continue to clear up and that she is able to stay on just the nasal canula.
6) Pray for her nutrition that she is able to keep eating and digesting well.

Thank you all for the continued thoughts and prayers!

Scott

Morning Update

Emma had a better night last night. We are trailing her off of the CPAP to see how she is going to do.  Her X-ray was improved but still has some work to do before it is back to baseline.  She has seen Occupational therapy and will see physical therapy soon.  Small steps in the right direction.  Please continue praying for her as we move forward in her post op care. 


Monday, December 15, 2014

Brief update

Emma is resting well tonight.  Her bleeding has almost stopped, and we are praying her X-ray is clear of fluid in the morning.  Thank you again for the prayers.  We are praying tomorrow is a much better day for our precious girl.

Hard day

Well, things have gone from bad to worse today.  Our sweet girl can't seem to catch a break.  After I posted a status this morning, Emma started draining a lot of blood from one of her chest tubes.  She then turned extremely pale and started having difficulty breathing. The OR tram and CVICU team rushed in to assess her....here is what we think happened:

1. Emma's heparin was upped last night because her dose was not therapeutic; however, we think the lab was not drawn correctly.

2. One of the collaterals in Emma's chest was aggravated it just popped open and since she was on too much blood thinner, she had a major bleed.

3. The chest tube in that area has clogged shut and will not drain with leftover blood in her chest.  The blood has collapsed her left lung and made it harder for her to breathe.

4. The loss of blood dropped her oxygen levels, raised her heart rate, and made her extremely lethargic.

5. So, Emma is now on CPAP to help keep her lung somewhat inflated until another chest tube is placed this afternoon by the OR team.

Please pray that Emma does not need to be intubated during the procedure (they are going to try not to).  That they can get the tube in without hitting other collaterals that would cause more bleeding.  That Emma's course can turn around for the better.  She is exhausted and needs to catch a break. 

Special Prayer Request

Please say a little prayer for our Emma this morning please: She had another rough night.  We think she was just not ready for all of the changes...especially with her feeds.  Emma's stomach got huge and was compromising her breathing.  It looks to be air related and that perhaps she wasn't ready for her formula as fast as she was getting it.  We have stopped her feeds and put a pump on her stomach to pump out air.  Please be praying for our girl....she is exhausted and miserable. 

Sunday, December 14, 2014

Post Op Day 4

Today has been a hard day for Miss Priss.  We knew this day was coming, but it is never easy to watch your child be in so much pain.  

Today is the first day that Emma is fully aware of her surroundings and off her pain/sedation meds.  She has been uncomfortable all day, but in true Emma form, she is not crying uncontrollably, but simply looks at you with this sad look in her eyes and a few tears rolling down her cheeks. We NEED her to rest, but also get up and move the fluid out of her lungs.  However, sitting up is causing her extreme discomfort (probably since she still had in three chest tubes).  Her poor little tummy is so distended from sucking in air...that can't be helping the discomfort.  

In other news, we tried to remove her oxygen today, but she is just not ready yet...close, but not quite.  The team is also trying to manage her blood pressure.

All in all she is doing well, but she has some hard days ahead of her as we attempt to get her up and moving, eating, chest tubes out..all while trying to not cause her excessive discomfort and pain. 

Gramma and Grampa left today to go back to Oklahoma, Emma will miss them and so will we...they have made sure we were eating and sleeping....Scott and I might actually have to do that ourselves now lol ��.  

Please continue to pray for our brave girl as we move into this good but hard time of recovery. 

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

She wants us near her all of the time, so I laid next to her most of the night last night. 

Saturday, December 13, 2014

Post Op Day 3 Continued

So like we posted earlier, Emma is extubated (breathing tube removed)!!! :)

If you remember from our history post surgeries, she has not always done well with this.  We filled Boston in on everything that has happened in the past, and they had everything ready to make this a success.  So, after hours of cutting her meds off that were sedating her, we were able to extubate her at around 3-4am.  She did so well right afterwards and all she needed was a nasal canula giving her some oxygen! God is good!!!

So today, some additional exciting things occurred.  The doctors felt that she was stable enough to remove a few lines.  So, they removed a common atrial iv line, a subclavian iv line, and an art line.  They also removed her foley catheter and have changed the method of draining of her chest tubes in anticipation for removal of one or more tomorrow of in the following days. So great great strides in the right direction.  Huge blessings there.

Right now, she is resting in her bed next to mommy.  They were both watching Christmas Vacation before she dozed off.  She has given several smiles today despite probably not feeling her best. 

We will update more tomorrow as we find out what the plan will be for the day and near future.

As always, a special thank you to everyone for the thoughts and prayers!

God is good, all the time.  And all the time, God is good!

Prayer Requests:
1) Pray that Emma's lung's continue to clear up now that she is extubated.
2) Pray for all the staff here at Boston who is taking amazing care of Emma.
3) Pray for her to quit draining out of her chest tubes so they can be removed and she can be more comfortable. 
4) Pray that she continues to improve overall each day.