Emma, Emma, Emma

Emma is proving to us that she is just like other kids.  Everything has to go into the mouth!  Last week Emma grabbed one of her hair ties out of her hair, put it in her mouth and swallowed it before you could have said BOO!  They talked to the pediatrician after it happened and it was recommended to watch her and see if she passes the hair tie.  Well, on Monday they called the clinic to give them an update – Emma has not passed the hair tie.  So they took Emma in and they did an x-ray to see where it was.  Thank heavens the hair tie had a piece of metal on it so that it would show up on the x-ray.  It was found in her esophagus.  They scheduled Emma for an endoscopy so that they could go in and retrieve the hair tie.  That was done today (Tuesday) a.m.  Well, they found and removed the hair tie, but then also found a 1″ x 1″ sticker that was also stuck.  So they removed that as well.  That explains why the hair tie didn’t move.  So how long this sticker has been there, nobody knows!  All I can say is that we are thankful that the hair tie had a piece of metal on it that allowed us to make sure it got removed.  Hopefully this will help eliminate any further respiratory problems.  So, Emma just keeps us guessing as to what she is going to do next.  All’s well that ends well!

Grandma Carol

 

Back in the hospital!

Time for an update!  Emma has been doing ok for the most part.  She has had issues with reflux (gagging).  We don’t know why because this isn’t supposed to happen when she has a nissan band on her stomach to keep everything down.  She has had a milk study this week and that didn’t show anything.  Next problem was on both Tuesday and Wednesday evenings when Emma’s central line became infiltrated when her TPN was running.  On Wednesday afternoon they unclogged the line and everything seemed fine.  But again on Wednesday evening the line was infiltrated again.  So this sent Robin and the nurse to the ER to figure out what was going on.  They were in the ER all night.  Early in the morning, they unclogged the line again and got fluids running again.  They admitted her for observation and to do a line study to see what was happening.  So on Thursday morning, they did the line study.  Of course it came back as normal.  (So frustrating when things are not right at home, but then tests come back normal.)  Emma stayed overnight in the hospital so that they could watch the line once her TPN was started.  Of course, no problems overnight in the hospital.  So, Emma will be going home soon.  I guess, things have went well for so long that it is time for Emma to give us something different to deal with.  Oh well, we have done it before – we can do it again!  Emma will be starting preschool next week.  She will be going 4 days a week Monday through Thursday in the mornings.  (Big sister Michelle has started 9th grade at the high school).  My oh my are my granddaughters growing up.  Emma now weighs 32 pounds.  She still goes to OT and PT.  She seems to be progressing slowly. 

Love to all,
Grandma Carol

 

Emma’s home and doing well!

Emma got home from the hospital on Wednesday afternoon at 4:00.  They left for the memorial service by 6:00.  So it was close, but Emma made it and everyone was pleased that she was there.  Emma had a 3 hour nap in the afternoon, so she was able to stay awake for the complete service.  Following the service I took Emma home so that the rest of the family could go out for dinner.  Emma was asleep by the time they came home.  Emma has been doing well.  She has had to have some Tylenol to help with the surgery pain, etc., but is now doing much better.  She is back to her smiley self.  It takes a little more time at diaper changes to make sure the drain is covered by the diapers.  Just another learning process.  Hopefully this will prevent the bladder infections.  We are so thankful that both surgeries were able to be done at one time.  Thank the Lord for watching over Emma and orchestrating all the people to be at the right place at the right time to accomplish this. 

Love to all,
Grandma Carol

 

Emma’s in the hospital!

Emma has been having problems with her central line leaking.  They have made numerous trips to get it repaired.  Well, this time it could not be repaired.  On Monday morning they went to the emergency room to have it repaired.  They had repaired it, but the repair did not stay.  So they admitted Emma so that they would watch the central line until they could get her into surgery to get a port placed.

Over the past few weeks Emma has also had several bladder infections.  They had her on a catheter to see if it was the kidneys or the bladder causing problems.  It is the bladder.  So they had scheduled a procedure to help drain the bladder for in August.

Surgery was originally scheduled for noon on Tuesday.  They told Robin in the morning that surgery had been moved to 10:30.  So at 10:00 they were taken down to the surgery waiting area.  When they were there, Robin said hi to the doctor that was planning on doing the bladder surgery in August.  He asked what they were doing now.  Robin explained what was happening and he said he was going to check to see if he could get in to do the bladder procedure immediately following her port surgery.  He came back and said it was a go.  So Emma had both procedures done today.  She was scheduled to go home following the port replacement, but with doing the bladder procedure, they are keeping her to see how she is going to do.  They are hoping Emma will be able to go home tomorrow.  Hopefully in time to go to her great grandmother’s memorial service.  (John’s grandmother has left us and is now at peace with the Lord.)  I told John and Robin that I would be at the hospital with Emma so that they could get ready for the memorial service.  Depending on what time Emma can go home, will depend on if she can go with to the memorial service.  Emma was settling down for the night so I came home to send the update.

Love to all,
Grandma Carol

 

Another first!

Yesterday afternoon I got a call from Emma’s nurse.  At first I thought something was wrong, but she quickly said she was calling because she was excited and had to pass on the good news!  Emma walked across the living room floor!  Yes, of course, it was with assistance on helping to move her feet and hanging on, but this is the first time she actually cooperated to make several steps.  A couple of hours later, Emma repeated this so that Mommy could watch her walk.  Granted, this is a long way from walking on her own, but she is at least starting to learn the process of walking.  I am very happy to be able to pass along some good news.

Love to all,
Grandma Carol

 

“Emma has left the building!”

That is the message I got from Robin.  They are on their way home.  Yesterday they found out that Emma has an UTI (urinary tract infection).  So she is now on antibiotics for that.  Her blood tests are better.  So everyone is happy to be on the way home.  I just want to also thank Emma’s home care nurses for the great job they are doing for Emma.  Some of them had went to the hospital to see Emma there.  Even the office people from the home care company were out to see Emma and even brought her a balloon!  We are so blessed to have so many caring people to take care of Emma.  Thanks to each of you for all  your help.  Also, thanks for all the messages, thoughts and prayers for Emma.  They help to get us through each day.

Love to all,
Grandma Carol

 

Back in the hospital!

On Monday, the doctor did not like the results of the blood work.  So he reordered it.  Of course, it turned out the same.  Main concern was low sodium, high potassium plus a few others.  At 10:30 p.m. they told Robin to take Emma to the ER.  Well, they decided that they needed to admit Emma until the blood tests were closer to normal.  They told us that with low sodium, Emma could have convulsions, etc. and it would be easier to watch her and to treat her faster in the hospital.  So at 1:30 a.m. on Tuesday Emma was admitted.  Well, that now meant that Emma’s home care nurse had to have a ride back to the house.  So I went to the hospital and helped get all the admitting information done and then took the nurse back to the house.  Then home and to bed about 4 a.m.  So no one got much sleep.  Before 8 a.m., they came and said that Emma’s labs were better and if they continued to get better, she could possibly go home.  Well, not good enough.  Emma is also having constipation and stomach pains.  So they are giving her things to help that.  So, we got a little sleep last night.  So now we play the waiting game and see how the labs come out today.  I’ll keep you posted on how she is doing and when she can go home.

Love to all,
Grandma Carol

 

Emma’s Home!

On Saturday Emma started to be her self and even the nurses and doctors were seeing the difference.  So they said if she had a good night and nothing showed on the remaining lab tests, that she could go home on Sunday.  On Sunday morning Emma woke up smiling and playing with the nurses and doctors.  So they said she could go home.  So I packed Emma up and had to wait for pharmacy to open.  Got Emma home for lunch.  She was so excited to be home, she didnt’ stop moving!  I had to go back to the hospital to pick up her med, but Emma was able to be home with her nurse and even settled down for a nap.  So I am home now too.  All they can say is that the think Emma had some sort of stomach virus that caused all of her problems.  So we just watch her until something else shows up.

Love to all,
Grandma Carol

 

Emma’s back in the hospital!

Yesterday morning, Emma had an upper GI test done to see if everything was ok.  When they were trying to wake her for the test, she really didn’t want to wake up.  They got her awake and had the test.  After they got back home, Emma went right back to sleep.  Her nurse was checking on Emma and didn’t like all the vitals, so she contacted the doctors and it was decided that she should go to the ER to see what is going on.  Well, of course, the nurses and Robin know Emma’s signs before they actually show up on tests.  Emma’s heart rate was still up even when she was resting, so they decided to admit her and run more tests.  So she has had numerous blood work, x-rays, urine tests, etc.  So now we wait for the results.  Last night was a bad night for Emma.  She started showing signs that she was in pain.  So they gave her motrin to help with that.  This morning Robin was able to get just a hint of a smile from Emma, so we know she is not feeling good yet.  So, back to the guessing game as to what is wrong.  When I know more, I will let you know too. 

Emma had been doing so well.  She was going to school 3 days a week and seemed to enjoy it.  Next year they may try for 4 days a week.  More on that to come in the fall.

Love to all,
Grandma Carol

 

Alls well!

Just thought it was time to give an update.  Emma turned 4 on April 7th.  Emma is doing fine.  She has had several doctor appointments and all are giving her a thumbs up!  She loves going to school.  Emma likes the bus ride to school.  It makes her laugh when they have to stop at the RR tracks and the door opens and closes without anyone getting on.  I guess it is the small things that make them happy.  Emma is now going to school 3 days a week – Monday, Wednesday and Thursday.  Emma is like a typical 4 year old – sometimes she’ll take a nap and sometimes she won’t.  She is always smiling and excited when people come, including when it is shift time for the nurses.  Emma is starting to tolerate more formula at each feeding.  So as they gradually add more formula with the feedings, her TPN volume goes down.    I am adding a couple of pictures.  The first one is of Emma in her new chair that she got for her birthday.  The second one is one of the two girls.

Thanks for all your support and prayers.  We could not have made it this far without you.

Love to all,
Grandma Carol