Let me start off by apologizing to those that check the blog for updates as I failed to update yesterday as I intended to. We have had very full days these past couple of days with all the consults we have received for the GI issues that Emma is having. But let me lay the framework for what is currently going on. First, the heart. Emma's heart is doing well. Her cardiologist has come in several times over these past days and remarked on how well he feels she is doing from a cardiovascular perspective. This is a HUGE blessing! If you were to ask Sarah or me if we felt that would be where we would be at, we would have said no... just because of Emma's past. But this just goes to show what God can do! Now, let me go into the next area of concern for Emma, her GI status. Emma has several concerning areas when it comes to her GI status and nutrition. Starting with the nutrition, the team here feels we need to bulk her up before her next heart surgery(s). We agree with this thought as well. In order to do this, we are needing to increase her calories substantially from what she was taking in before. This would not be too difficult, if Emma would eat. But she is not. Emma, as many are aware, was taking all of her calories by mouth prior to admit. Now, however, she does not want to eat. At first, we thought it was behavioral. Then, we started to fear it was more. This fear prompted us to address our concerns with the team which in turn had concerns as well. This lead to several GI consults and ultimately many changes as well as a belly ultrasound this morning. The belly ultrasound, which was a Godsend, was prompted strangely by an x-ray that was taken for NG-tube placement where they thought they saw gallstones. *Que the GI status topic* :) So, the ultrasound showed us something that we already knew Emma had and that is gallbladder stones. Emma has had these for a long time, but there was something different with Emma's gallbladder this time. On top of the stones, she had a thickening in the wall of her gallbladder. What this means is that her gallbladder is more than likely infected. Now what this meant is that now we would need to place Emma on IV antibiotics for the treatment of this, but this also meant holding all her food and the possibility of removal of the gallbladder. So today, we stopped her foods and started IV fluids and IV antibiotics. We also spoke with the surgeon that could possibly be removing her gallbladder as well. We spoke with the rest of her team on some other things that might be occurring next week. One of these events for next week, that we had previously discussed prior to finding out about the gallbladder, is placement of a G-tube. As some of you may remember, we were scheduled to get one of these placed after Emma's first Glenn procedure when we were down in Texas. This was also the time that Emma crashed and thus we were unable to do that. Which brings us to today where we have a big girl that still has an NG tube. The purpose of the G-tube for Emma will not only be for more ease on Emma's and our part, but also to try to get her nutritional status better. So, knowing that her G-tube would be sometime next week, we wondered how this new-found gallbladder issue would effect that. Thankfully, the surgeon today said that if they decide to take the gallbladder out, he could do both the g-tube placement and removal of gallbladder during the same procedure. This would effectively cut down on multiple procedures and subsequent anesthesia that she would have to go through, which would be nice. So, a lot of potential changes with relation to nutrition and GI have been going on over these past couple of days. We are praying that her gallbladder is the culprit behind why she is not wanting to eat/not tolerating feeds and that we can resolve that soon.
So there you have it, that is what has been going on here recently. We couldn't be more thankful that we have such an amazing team here in Boston that work with us to try and find out everything that we need to do for Emma. We also could not be more thankful that we serve an amazing God that is constantly watching over our sweet little girl and us.
1) Please pray for our team here at Boston and the decisions that will be made over the rest of this week and weekend.
2) Pray for Emma's gallbladder and the decisions made with regards to that.
3) Pray for the upcoming G-tube placement.
4) Pray that Emma's nutritional status will continue to improve.
5) Continue to pray for her heart, that it stays stable.
6) Continue to pray for her fluid status, that it will remain stable and she will not get any fluid in her lungs.
7) Pray for the upcoming procedures next week.
8) Pray for Sarah and me, for the strength that we will need for the road ahead.
As always, we thank each and every one of you for the constant prayers, thoughts, and love that you pour out for Emma and our family. God could not have blessed us more!
God is good, all the time. And all the time, God is good!