Boston Blizzard of 2015

I know many of you have been waiting on an update.  I apologize for not getting one to you sooner. 

Emma was released from the hospital last Thursday evening. Emma and I came back to the hotel in anticipation of flying out of Boston on Saturday morning. However, a snowstorm moved in which created undesirable flying conditions and then turn left us in Boston. We then planned on flying out on Tuesday. When we made this plan there was little to no chance of snow on Tuesday; however, less than 24 hours later the weather man changed his predictions and said that this would be a massive storm that would move in and would probably bring 2+ feet of snow, blizzard like conditions, power outages, and would in turn shut down the city.  Well, they were right. Emma and I are now sitting in our hotel room unable to leave Boston today. While the snow is absolutely beautiful, we are very ready to come home. We are hoping that the storm will move through and we will be cleared to fly out on Saturday.

 So, that is a brief update on the Boston weather and why we are still stuck in Boston.

 Emma is doing well. She is tolerating the feeding regimen that we are currently on and seems to be regaining energy, stamina, and of course her sassy attitude a little every day. She is however sick and tired of being in the hotel. This mama is running out of activities to do to keep her entertained. We have made many stroller races up and down the halls, takenthe elevator for rides, purchased a special snacks in the little store, and strolled around the lobby more than anybody wants to. And the crazy thing is, I have to keep her entertained for several more days. On the bright side, we are getting a lot of one-on-one mother/daughter bonding time. And while there are times that she is not my biggest fan, we get through it and end most of our days with laughs and smiles. 

I am so appreciative of a few people who helped me out yesterday by bringing food and supplies to get me through this winter storm. I was literally down to my last couple of baby wipes and diapers. Also, it was so great to get some fresh fruit to break up the monotony of soups sandwiches and salads.  Yay to fellow Okies who were visiting Boston or who now live in Boston to help this mama out.  Also, thank you to our friends, family, and church family who have sent text messages, called to check on us, or Skyped with us to help pass the time and send encouragement our way.

We will have several follow-up appointments when we get back to Dallas to monitor him his heart, G.I. status, weight, and labs.  

We appreciate your prayers for Emma's health during this viral season. We also ask for prayers for her heart that it can stay strong and that the surgery  that they did in Boston will continue to be successful.  We also ask for prayers that Emma can gain appropriate weight and muscle over the next several months in preparation for her next surgery.

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

Little Miss Skinny Minnie

Sorry for the lack of update.  Emma and I are doing our best in Boston.  Since Scott left, Emma has had some good steps forward and some steps backwards as well. 


As most of you know, we have been dealing primarily with GI issues for the last few weeks.  Since her GJ tube surgery/gallbladder removal, we have been working (slowly) to get Emma back to her goal caloric intake.  We achieved this goal on Monday by running formula continuously in her J-tube (intestines) 24 hours a day and bolus feeding her puree foods in her G-tube (stomach) three times a day.  She did well with this on Monday into Tuesday afternoon; however, Tuesday afternoon the GI brought in a different "formula" for Emma to trial.  This formula is made of actual organic food and looks like a thin baby food puree running through her tube.  In theory, this would be more age/nutritionally appropriate.  Emma did not appreciate the change and started retching/gagging during the night into the morning.  We both got very little sleep, so she has been exhausted today.  After talking to the team this morning, we have decided to go back to her old formula for awhile and slowly integrate this new formula after we see a steady few weeks of weight gain. 


Speaking of weight gain, my skinny Minnie is not gaining weight.  She is so skeletal it is sad.  Her poor little arms, legs, and face are basically skin and bones.  Since surgery (GI) she has had a major weight/fluid shift from being fluid overloaded to now very dry.  We will have a lot of work to do when we get home to pack on the pounds before her next surgery.


As far as her heart is related, she is doing well.  The atrial septum area that they removed the membrane from is still wide open and the pulmonary veins that they can see look good as well.  There is one pesky pulmonary vein that they are having trouble viewing, but because everything else looks good, the cardiologist is not really worried. 




Once again, to all of our wonderful family, friends. and loyal blog followers, THANK YOU so very much for all of the support, encouragement, cards, gifts, messages, etc.  We are so blessed to have such an outpouring of support.
 

Prayer Requests:

1. Emma can start gaining steady weight and muscle.

2. Emma's heart function, pulmonary veins, atrial septum, etc continue to function properly.

3. That Emma can regain her strength and activity level.

4. That Emmad fluid balance will normalize. 

God is Good!  All the Time!  God is Good!


Sarah

Miss Priss was exhausted, cranky, and VERY dried out today....here is a cranky picture to prove my little Miss Sassy pants can have an attitude...lol

Update 1/17/14

Just a quick update on how Emma is doing.  She is adjusting to having her GJ tube and is doing well with it.  After the surgery, she seemed to be uncomfortable in her belly region, but that has seemed to improve each day which is really good.  She did pack on some weight post surgery, and not nutritional weight, more than likely fluid.  To the tune of around 0.8-0.9kg which translates to 1.8 to 2 lbs.  So we have been keeping a close eye on everything to make sure that doesn't cause any issues.  So far, she is doing well.  We were able to give her an IV dose of Lasix today which helped potentially get some of that fluid off.  The other area we are working on is making sure we have a solid plan nutritionally.  We have successfully worked up to full maintenance feeds through her J portion of her GJ tube.  This will give her some good calories throughout the day.  We also today gave her some food through the G portion of the tube.  So tomorrow the plan is to continue to increase the feeds to get her where she needs to be and see how she does.  She is still not wanting to eat by mouth for us (we think probably behavioral... one of the only things she can control) but we feel confident that when we get her back home into her environment, she will do well with that.  In other news, her xray two days ago appeared to show pneumonia...........  The team here had a low threshold and went ahead and started her on antibiotics.  Her xray today though looked much improved.  So we are not sure if it is pneumonia or not.  But either way, she is getting the care that she needs to take care of the issue.  We are praying she gets over whatever it is soon as it was effecting her oxygen saturations especially at night.  She is still not back to her sassy self after all that she had done, but her mood and energy level seems to be improving each day.

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

Prayer Requests:
1) That she gets over "pneumonia" or whatever this is quickly.
2) Pray for her fluid status since she gained so much weight and they think it is fluid related.  Pray that she tolerates it well and that we can get the excess fluid off of her.
3) Pray for her nutritional status.  That we develop a plan that works for her and that she tolerates well and can thrive on.
4) Continue to pray for her heart, lungs, and development.
5) Continue to pray for Sarah and me.  That we have the strength for the decisions and journey ahead.

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

-Scott

GI Update 3

Emma had a big day.  As many of you are aware, she had a couple of surgeries scheduled for today.  The two surgeries scheduled were to place a GJ tube and removal of her gallbladder.  Now on top of that, GI wanted to do some biopsies of her esophagus and small intestine for tests to see if they could shed any light on why she is having some intolerance to eating/food.  All of this was to be accomplished during this one GJ tube placement procedure to limit her exposure to anesthesia.  It was a big day for her, the procedure from prep to finish took many hours and here is the blessing, she did very very well through the whole gauntlet of procedures.  There was debate and question on if they would be able to extubate (remove the breathing tube) after the procedure or if they would send her to the floor with that.  They were able to remove it and she breathed well on her own.  So, our little girl no longer has a tube running into her nostril nare, she has a tubeless face and is dawning a fancy GJ tube (that even has glow in the dark components! NG tube eat your heart out! hehe). 

When she got back to the room, she was pretty sore.  Still was when we put her to bed tonight but she is such a trooper!  We are alternating some Tylenol and Motrin and she seems to be doing ok with that.  She went right to sleep as soon as we turned the lights off.  Poor little girl, she is tuckered out.  Right now her heart, breathing, and everything else is looking good!

There will be some definite struggles ahead with diet as this new GJ tube opens up some new abilities to feed.  And we are hoping that it, plus the removal of her gallbladder (if indeed it was playing a role GI-wise), will help us to get her back on track with where she needs to be with regards to her nutrition. 

All in all, a very good day filled with a lot of changes and a lot of blessings.

Prayer Requests:
1) Pray she has a smooth couple of days recovery.
2) Pray that her pain is easily managed.
3) Pray that she rests well at nights.
4) Pray we are able to figure out her diet and nutrition.
5) Pray her heart and lungs continue to stay strong.
6) Pray for all the staff here taking such good care of her.
7) Pray for Sarah and me, that we continue to have the strength that we need to be there for her on this journey we are on.

As always, that you all for the thoughts and prayers!  Prayer is powerful!

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

-Scott

GI Update 2

Here's what we know:

 We know the gallbladder has been removed, scopes done, and g/j tube in place.  They have started waking her up...and we were heading to ICU for overnight monitoring.  More info after we get settled in our room.  Thank you for continuing to pray for our sweet girl during this surgery/recovery.

GI Surgery Update 1

Emma is in the PACU waiting for her surgery.  We are being told it will begin around 2pm.  Prayers are appreciated as we take this next step to help Emma's body heal and grow.

Gallbladder and Gtube

There has been a lot of discussion over the past few days on what to do with Emma's gallbladder.  Here is what we know....Emma has gallstones as well as an inflamed gallbladder.  After consulting multiple experts in pediatric gallbladders/livers, the consensus is that this is a chronic issue that will only cause Emma problems down the road.  The last thing Emma needs is for a stone to block a duct and cause even greater issues.  

So.......

Emma will have surgery on Wednesday to place a gtube and remove the gallbladder (as long as she is stable during gtube placement).  See the link below for info about the tube: http://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube/

We are praying that this leads to further healing, weight gain, feeding tolerance, and the ability to go home.

We appreciate your prayers as we take these next steps.  God is good!  All the time!  God is good! 

Update 1/8/15

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.

Prayer requests:
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!

-Scott

Stomach Virus---2 Scott and Sarah---0

I know many of you have been waiting on an update.  For those of you not on Facebook, Scott and I both came down with a stomach virus on Thursday.  Scott left the hospital around 3pm on Thursday after vomiting and I followed around 9:30pm.  That was one of the hardest things I have ever had to do.  Looking at Emma's little face, seeing her scared eyes, I left her room in tears and headed back to the hotel. 

 The next eight hours were brutal.  Scott and I were both physically and mentally exhausted.  An hour into the virus, I called my mom, who could tell I was absolutely devastated about leaving Emma.  She immediately booked a flight and headed to Boston.  Friday was spent in bed, unable to barely move and definitely not in a position to eat or even drink much.   

My mom arrived around 2:00 on Friday.  Emma's Thursday night nurse and Friday day nurse did a great job keeping us in the loop in the interim.  

Emma did not have the best night last night.  As we have stated previously, we do not think the team has a handle on her diuretics.  The diuretics they have her on are not really pulling off much fluid, so every couple of days, we are having to give Emma a dose of diuretics in the middle of the night due to a drop in SATs and increased work of breathing.  That happened again last night.  So once again, Emma started coughing, dropped her sats, had to get an xray, and got a dose of diuretics...all of this caused her to get very little sleep.  Scott and I understand that they are nervous about giving her a loop diuretic every day since the last time they did Emma's electrolytes dropped to critical levels; however, we can't keep playing this game or we are going to be here FOREVER!!!  

We are waiting to hear back on how her Xray looks this evening and what the plan may be from here on out.  

We are also consulting GI to try to determine why Emma has so much gas build up in her intestines.  

Scott and I are feeling better today...still weak, but able to eat which is a good start.  We are hoping to be back at the hospital tomorrow.  

Thank you for your continued prayers.  

Please continue to pray that:

Scott and I can stay well.

The team can get Emma's diuretics balanced.

The GI team can help remedy Emma's gas issues.

That Emma and Gramma can get some rest.

Emma can stay infection and virus free.

God is good!  All the Time!  God is Good! 

Our New Year Kiss (pre-virus) 

New Year

The last week has been hard.  Due to the holidays, there has not been a lot of consistency in staff taking care of Emma.  We make changes, Emma's body does not like the changes therefore we take steps backwards.  

A few days ago she also started having coughing episodes.  During these, you could tell she has some phlegm that needed to be cleared but she just couldn't seem to officially clear it.  Some of these coughing episodes lasted close to an hour 😞.   Last night, she had one of these episodes and ended up vomiting.  We got her settled back in to sleep, but her heart rate continued to rise and her O2 levels drop...despite her being asleep.  We checked her temp...101.5 so the on call Dr. (After a little persuading) asked for a chest X-ray and labs. Her chest X-ray looked a little more wet so they gave her a one time extra diuretic dose.  Her other labs looked stable, so we settled her back in for the evening (2:30am) by this point.

Emma slowly settled out and was able to come back off of oxygen last night.  So far today she has not had anymore coughing episodes, but there is unfortunately no clear reasoning behind the fever.  

Another issue we are dealing with is GI related.  Emma's stomach is HUGE.  Now, in all fairness, it is always pretty big, but it literally looks like it could pop.  Once again, no one is sure why this is the case.  We are supposed to be meeting with a GI specialist tomorrow to see if he/she have any ideas.  

As you can see, we have been dealing with some frustrating issues that are keeping us here.  Just when we start packing up our stuff and discussing the possibility of coming home, something else creeps up.

Scott and I are doing our best to keep it together...to not lose our cool with the medical staff...to find the silver lining....to remain positive for Emma....but it is hard.

On my walk to Starbucks this morning, I paused for a moment to take in my surroundings.  Boston, a normally bustling city filled with people hurrying to and from work, constant sirens from all of the nearby hospitals, and nonstop cars/buses speeding by was unusually peaceful and quiet.  The air was crisp and cool...the sky that was visible through the tall buildings was a brilliant blue.  This verse filled my mind:

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him." (Lamentations 3:21-24 ESV)

I paused and prayed.  I prayed that God would help me see his new mercies and unfailing love...even during these frustrating times.  

It is a New Year....it is a new day.  Today I will focus on my blessings and work on my feelings of frustration and disappointment.  Emma has come so far and has surpassed expectations of so many.   We have so much to be thankful for, so we press on.  We give Emma time and we accept that whenever she's ready to go home...that will be the perfect time...and not a day sooner.

We appreciate your prayers as we wait...adjust...wait...and try to find what works best for Emma.  We pray that 2015 is wonderful year for you and your families.  Don't ever forget to give God the glory...praise Him..even during the storms of your life..for He is faithful.

God is Good!  All the time! God is Good! 

Before Emma got sick during the night

Yesterday during PT

Check out that belly 😳😁 poor girl is so tired today.