IR Update 2

Emma is resting peacefully in the CVICU. They successfully placed the abdominal drain and PICC line.  She was also extubated when we walked in the room :).  Prayers for a restful evening and a productive plan that gets Emma in a better place.  

IR update 1

Emma just went back for her procedure.  They will keep her intubated after the procedure and let her wake up in the ICU.  They will be placing another abdominal drain and a PICC line.  Please keep her in your prayers...that this procedure will go smoothly and that this will lead to better control of the ascites.

Welcome back.... to the hospital

Our poor sweet daughter and her abdomen issues.  As you may remember, we were discharged not too long ago.  Around a week ago to be more exact.  We knew there was a chance that we would be readmitted, but we hoped that we would be at home for a long time before that time came.  However, a week post discharge, we find ourselves back in the hospital.  The problem that brings us back in, is what I eluded to at the beginning, her abdomen.  From the time we first got home, until now, her abdomen has gotten bigger.  We were hoping this would be gas, or maybe the fact that she needed to stool more.  But, I think in the back of our minds, we knew this was fluid.  So where does that bring us to with regards to the next step.  Well, we are kind of back to where we were at the first time we brought her in.  So the thought is pretty much the same, we need to get the fluid out of her abdomen and also we need to get her nutrition right.  Right now, the plan is to do a few things to help address those issues.  One, tap the fluid out of her abdomen, and two, put in a PICC line for TPN and lipids (a form of nutrition that goes through the PICC line and helps reduce the possibility of more fluid accumulation in her abdomen).  These procedures are slated to happen tomorrow.  Of course, we are praying hard that all of this goes well, and that she gets all the help she needs. 

Here are some specific prayer requests:
1) Pray that her procedures go well and without any complications.
2) Pray for her abdomen, that they can figure out ways to help resolve this recurrent fluid accumulation issue.
3) Pray for her nutrition, that she can not only get good nutrition but also that the nutrition we give her does not contribute to this fluid accumulation that she is having issues with in her gut.
4) Pray for all the medical team taking care of her.  That God will guide their hands as they help our sweet girl.
5) Pray for strength for Sarah and me through this time.

As always, we so much appreciate all the thoughts and prayers for our family.

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

-Scott

Home Sweet Home

We are home! After spending 11 days in the hospital, the doctors released Emma today. 

After switching Emma to a fat free diet, and draining 30 ML's of peritoneal fluid every hour, the doctors chose to clamp the drain on Saturday in attempts to see if her girth would remain stable.  During this time, they drew peritoneal fluid from her drain every day and tested it for triglyceride levels. Each day her triglyceride levels trended down which was encouraging to the team. 

Emma's remained fairly stable for the last several days, so they removed her drain yesterday and released her from the hospital today. In all honesty, she could continue to drain and drain and drain. However, the type of drain they had to use creates a high risk for infection which of course would be very detrimental for Emma.

So what does this mean for Emma. First of all, chylous effusions are very rare. The cardiac team along with the G.I. and surgical teams have worked together to try to create the best plan for Emma, but there are no guarantees that she will not re-accumulate some of the fluid. 

So, we went home with a game plan that we will be monitored closely by the cardiac team and stay on a fat free formula for at least six weeks. If it any point Emma's abdominal circumference surpasses a certain number then we will call and be admitted in attempts to drain or diurese some of the fluid off. 

So we sit and wait and try to regain some sort of normalcy. Normalcy is really what we need! We all need a break from the hospital and need to be able to return to our daily routines, sleep in our beds, and  enjoy the comforts of home. 

All in all Emma feels much better than she did a week ago. She seems to be regaining her energy in wanting to participate in activities.

Please continue to remember Emma in your prayers as these next few weeks will be a telltale sign of how stable her ascites is at this point in time. We could all really use some time at home away from the hospital.  Again, we are positively humbled by the outpouring of support, encouragement, and prayers for our family. 

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

Tracking her abdominal girth....

Headed Home

Fluid from Where???

Went for abdominal procedure Monday. Initially we thought that they were going to do a paracentesis with conscious sedation to draw the fluid off of her abdomen and send Samples for testing. However, when we arrived in interventional radiology, we learned that due to the amount of fluid Emma had in her abdomen, they were going to intubate her and place a drain so they could slowly drain off the fluid.  

The procedure was very short and Emma went back to the CV ICU for monitoring. The doctors decided to drain the fluid at a slow rate to the tune of 30 ML's an hour. Despite the constant draining, Emma's abdomen kept getting larger.  Every test that had been sent off came back normal, so the G.I., cardiac, CVICU , and surgical teams were at a loss for what could be causing this massive ascites. 

Despite the massive abdomen, Emma was stable, so they moved her back to the eighth floor on Tuesday morning. Emma was very lethargic, inconsolable, and overall did not look well. It was decided that since nothing was coming abnormal with her G.I. issues, a last ditch effort to determine where the fluid was coming from would be to send her to the Cath Lab. Scott and I were upset about that decision but understood that we needed to do what was best for Emma. 

However, earlier in the day G.I. had decided to send another sample of the fluid off of her abdomen for evaluation. When these levels came back her triglycerides were high, so they got another sample of the fluid and tested it again and it came back even higher. Believe it or not we were relieved about this news because what it seems to show the team is  that at some point during Emma's  abdominal surgery her lymph system was knicked, so she is draining fluid into her abdomen. Unfortunately, the process to heal this is slow and requires a very special diet. 

Emma has been on that special diet for around 24 hours and while she is still draining out of her abdomen.  Her abdominal girth went from 37 cm to 32 cm and has stayed at 32 cm for almost 24 hours. It will take a few days to know if this is truly what's causing this and if we found the solution to slow down the abdominal leak. 

If this does not work we will be back at square one have to make some other decisions.  We are praying that this is what we're dealing with. While it is not optimal, it is something that can be managed without having to do invasive interventions. 

Emma has felt better today and is been more interactive and alert which is also an encouraging sign. We have no idea how long we will be in the hospital. It really depends on if this is truly effusions that we're dealing with and how long it takes Emma's body to settle out from having so much fluid in her abdomen.

 We appreciate the prayers, text, messages, calls, and encouragement during this unexpected setback. We really are praying that Emma is back to herself soon so that we can get home and truly be home for a while. 

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

Emma Update: Abdomen Issues and Current Hospitalization

So since being back in Dallas, we have had several follow-up appointments that we have had to go to for Emma.  Let me start off by saying that everything heart related is looking good.  However, we have been noticing her abdomen growing in size ever since she was discharged from Boston.  As you might recall, we had abdomen swelling in Boston post her GJ tube placement and gallbladder removal.  However, after we had gotten the fluid off of her post those procedures, she had been pretty stable and not had a huge abdomen.  So, being concerned that it was fluid again, we asked the doctors to take a look into this which prompted an ultrasound of her abdomen on Friday night at 8pm.  As we feared, it showed a lot of fluid in her abdomen.  When her doctors received word of these findings, we were told we would be admitted this weekend to see what they could do for this.  The first step would be to use diuretics and try to get the fluid off.  However, in typical Emma fashion, her body could not tolerate this type of treatment.  Instead, she will need to have what is known as a paracentesis, which is a needle insertion into her abdomen to drain the fluid.  It is looking like this will happen on Monday at some point in time, but we have no confirmations of this yet.  Obviously, this is not what we want to be putting her through, but it is what she needs to have done.  She will have to be sedated for it as well.  As many might wonder, what is causing this fluid accumulation and what is this fluid that is in her abdomen?  To those questions the answers are, "Currently we do not know."  When they do the procedure they will take a sample of the fluid to test exactly what the make up of it is.  As to where or what is causing this, that is still in debate.  The make up of the fluid may shed light on that, so we will have to wait and see.  Emma, however, is stable and currently snoozing as I type this blog update.  She is in some pain as her abdomen is very large, but is still giving us smiles and happy times.

Prayer Requests:
1) Please pray for this upcoming procedure.  Pray that there are no complications and that it is successful in eliminating this excess fluid.
2) Please pray for all the medical staff that is involved in Emma's care.
3) Please pray that Emma is as comfortable as possible leading up to the procedure as well as following the procedure.
4) Please pray for strength for Sarah and me as we go through this journey with Emma.

As always, we continue to thank each and every one of you for the prayers and the support that you give our family.  It makes our hearts so happy to see the love that you show Emma and us. 

February 7th-14th is Congenital Heart Defect Awareness Month.  Please join us in supporting Emma and her heart buddies by wearing red sometime this week. 

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

-Scott

Wear Red for CHD

 CHD Awareness Week is right around the corner.  Many people will kick off the awareness by wearing red tomorrow.  I ask that at some point between tomorrow and Feb 14th, please wear red to show support to Emma and her heart buddies. 

I know I have a lot of catching up to do with my faithful blog followers....it is coming soon!