Friday, August 20, 2010


Dear Friends:

It has been a busy week but thankfully, our niece Sarah was here to help.  The week started off with preschool orientation on Monday and the first day of school on Tuesday.  Both boys have great teachers and enjoy their classes immensely! 

We only had one dr. appointment this week and that was the post op appointment with the surgeon for Emory.  His chest xray looked good.  It still showed a little bit of fluid which they said should go away in time.  The nurses and dr. were both pleased with how well the incisions have healed and said he looked really good.  He had not lost or gained any weight, which was a little disappointing to us that he had not gained weight.  The surgeon told us not to expect much weight gain until a month after surgery.  When Emory came home from the hospital, he was on a regimen of taking 9 medicines.  After our GI follow up appointment, we eliminated one of those medicines.  After the follow up appointment with the surgeon, he eliminated 2 of those medicines.  So, now Emory takes 4 medicines on a regular basis throughout the day in addition to 2 medicines that are to be given on an "as needed" basis. 

Overall, Emory is doing well.  He is still taking all of his feeds through the ng tube.  We turn off the feeding for an hour at a time twice a day.  He also still throws up once or twice a day.  Although it isn't nearly as bad as it was, we are still trying to work towards him eating from the bottle and not throwing up.  The surgeon suggested that in order for him to gain weight for us to increase his feeds from 30 ml an hour to 32 ml an hour.  But, when we did that, he seemed to throw up more.  So, we are back down to 30 ml an hour.  People keep telling me how common all of this is with cardiac and digeorge babies, but it's still challenging and hard to get used to.  But, that is our biggest goal for him for right eat from the bottle and keep it down.

Most babies have their second round of shots at 4 months of age; however, Emory will wait and have his at 5 months of age due to us needing to wait till 6-8 weeks after surgery.  He also will start his rounds of rsv vaccinations in October and they will come to our house and administer those so that we don't sit around all the germs in the pediatricians office.  This is something that the pediatrician set up for us....thanks Dr. Barnwell!  Our next appointment is next week when we follow up with the cardiologist on Friday.

Emmitt and Eli are doing well.  They are soooo full of energy these days.  We keep trying to stop them from running up and down the halls and from being so loud.....they are 200% boy!  Emmitt is a big helper and Eli just repeats everything Emmitt does and says.  Everything is a competition with them.  Our niece Sarah came in last Saturday and her mom, Aunt Dawn, came in Wednesday night to get her.  They both left this morning to go back to FL.  But, the boys LOVED having them both here.  Today was our first day in a very long time when it has been just us here at the house without any visitors or family members.  We have just stayed in and done stuff around the house, played, watched some tv, etc.  It's time for us to get into a more structured routine and hopefully we won't have too much drama with Emory for a little while. 

That's the update for the kids.....everything is about the same for Claude and I.  I kind of stay in a state of being tired, but my mom so kindly informed me years ago that it would be that way for at least the next 18 years.  Claude is coaching football and subbing at Landmark.  Although it's not ideal and doesn't make sense, at least it is bringing in some income.  Please continue to pray for him to find full time permanent employment.  We see that God has us here for a reason and are not sure what exactly that is.  But, we also need that secured employment.

Hope everyone has a good blessed!


Sunday, August 15, 2010

Back to School

Well, it's that time of year again!  Time for the schedules to get tighter, bed times to be earlier, lunches to be packed, clothes to be laid out the night before, etc.  I can't believe that "school" (preschool for my boys) is already back in session!  You see, I was supposed to have Emory after school was out last year and instead had him 3 weeks before school let out.  Can I just tell you what a blur this summer has been?  Can I just tell you what a blur the last three weeks have been?  Oh my word!  I'm running on pure adrenalin and honestly signed on to post a short blog so that everyone could have an update.  I start "hitting my wall" around dinner time which is not good when you have hungry mouths to feed and a kitchen to clean up afterwards.  So, tonight's blog will be short and I'll type more at length tomorrow or another day.

Emory is healing well from his surgery.  Tuesday will be two weeks post surgery and Wednesday we will follow up with the surgeon at his clinic.  His incision looks great, he has been fever free, he is only throwing up about once a day, and he is acting more like himself a little bit every day in the fact that he wants all the attention.  He is wearing socks on his hands so that he doesn't pull out his ng tube.  We changed back to his original formula and will see how he tolerates that.  We did go to Sunday school and church today, which was a blessed time.  Emory stayed with us in his stroller and his "formula backpack" hanging off of the handle.  As long as he has the tube in, I've got to get used to going places with him and the tube.  But, until he is 6-8 weeks post-op and possibly even tube free, I won't put him in the nursery, which is so unlike me.  But, as I'm learning and will blog about later, every child and the season of life that he or she comes with, is different!  That is the short version of how Emory is doing.  Please keep him in your prayers specifically for him to tolerate bottle feedings so that we can get rid of the ng tube.  And, please keep us in your prayers specifically for Claude to find employment. 

Hope you all have a wonderful Monday!



Thursday, August 12, 2010

Pure Exhaustion

Dear Family and Friends:

I have not blogged the last two nights simply due to pure exhaustion!  Tuesday marked one week after surgery and they wanted to send us home that day but Emory started refluxing, throwing up, wretching, etc. in the hospital.  When the surgeon did rounds, he said for us to stay one more day and let Emory be observed.  He said that from a cardiac stadpoint, Emory was doing great and healing good.  But, depending on how many times Emory threw up in 24 hours would determine if we needed to change from the NG Tube the the G Tube and to have the "Fundo" surgery.  So, Claude sent me home to get some rest and stayed up there with Emory.  When the surgeon did rounds on Wednesday, he did not think Emory's throwing up episodes were significant enough to warrant another surgery so soon.  He discharged us to go home.

We got home Wednesday afternoon and the only thing Emory still needs 24/7 is his NG tube which feeds him his formula.  We do have several oxygen tanks and a pulsox machine in case we need it.  It took  us a while to get all of the equipment and "stuff" from the hospital settled, but we got it all under control, ate a delicious home cooked meal that Gremmy cooked for us, got the older two boys bathed and in their rooms with a movie, and I was off to Wal Mart for a few things.  Mind you, I have not been to Wal Mart in weeks.  For those of you who know me well, you know that is rare!  While in Wal Mart, Claude called and said that Emory had pulled out his tube.  So, I quickly finished up the shopping, got home, and we started the process of reinserting the tube. 

Claude tried several times and we almost went back to the NICU where Emory stayed just after birth, but Claude finally got it right.  About an hour later though, Emory threw up a great deal.  At this point, it was about 11:30 and I was concerned that maybe we didn't get the tube in the correct spot.  So, off we go to the ER to have it checked......we went to the hospital close to our house rather than the children's hospital downtown.  Once we got there, we were taken to the back immediately because of Emory's condition.  We will always be taken to the back quickly because of his heart condition and his DiGeorge.  But, once we got there, the pediatric ER was closed and that is when they mix in all the children with adults.  They said it was a 4 hour wait and for a patient with DiGeorge to sit in an ER waiting room is not wise.  So, we walked up to the NICU and the nurses there checked it.  Plus, it was great to see some of the nurses that took care of him.  They just went on and on about how big he had gotten.  I guess for me to be with him 24/7 and to see all of his problems, it's hard to see his growth.  Then we got home around 1:00, got Emory settled and closed my eyes at 3:00, and then was up and down till 9:00.  Hopefully, tonight will be better.

During one of those up and down times, Emory pulled his NG Tube out AGAIN!  This little guy is fiesty!  Claude got the tube put back in and we started our process to leave for a follow up with the GI doctor.  Emmitt and Eli had fun at Mrs. Misty's house, the three of us went the dr., and Gremmy left to pick up Papa in TN only to continue on to VA for Papa to preach at a meeting.  Our visit with the GI doctor was successful for now.  He changed one of Emory's medicines and gave us some instructions on feedings and said to follow up in 3 weeks.  Basically, right now Emory is being fed through the NG Tube 24/7.  If he continues to pull his tube out or if his reflux and throwing up gets excessive, then we will further consider the insertion of the G Tube and the "Fundo" surgery.  Until then, we are just settling in here at home where it is cool.  We can certainly go out with his bag of formula, but it hasn't yet become "second nature".  Tonight when I finised bathing him and putting his pajamas on him, I put socks on his hands so that maybe he wouldn't pull the tube out. 

In essence, I've gone from following a strict feeding schedule to a strict medicine schedule.  Emory gets 8 medicines a day, round the clock.  Thankfully though, he doesn't have to have any doses given between the hours of midnight till 6:00 a.m.

While we were at the doctors office today, we saw a few children who were much worse off than Emory.  And, although our stress level is high and we are exhausted, I was so thankful then that Emory had the issues that he has.  After seeing those other children, it made our life look like a breeze!

Well, the house is quiet....all the boys are sleeping.....and this momma is gonna call it a day!  The older boys start preschool next week and I don't think I've looked more forward to something in a long time.  I'm ready to get into somewhat of a routine and that only seems to happen when school is in session.  Have a great night everyone!  Until next time.......

Take Care,


Tuesday, August 10, 2010

Feeding Issues

Dear Friends:

Emory will not be going home today due to some feeding issues.  I will give more of an update later.

Have a good day,


Monday, August 9, 2010

The Latest on Emory

Dear Friends:

Since my last blog, there has been a lot of little things go on.  On Saturday, one of the nurses was a little concerned about Emory's temperature.  She waited a little while to give him his tylenol in order to see if he temperature would rise and sure enough it did.  It has always been and still is a low grade fever, in fact one that they aren't worried about.  However, to be on the safe side, they sent blood work off for cultures and started antibiotics.  They usually come around 4:00 a.m. to do bloodwork and that was taken Sunday morning.  So far, the cultures have not grown anything, so they have stopped the antibiotics because of it giving him some nasty diapers.

He still has some fluid on his lungs that they are watching.  They are also trying to wean him off of the oxygen because they want him to go home tomorrow.  As one nurse put it, from a surgical standpoint, he is doing fine.  Soft Touch Home Health will be bringing us a portable oxygen tank, a large free standing oxygen tank, and a pulsox machine.  Hopefully we won't need to use it, but it will be good to have on hand.  Our biggest concern is the fluid on his lungs and that we may end up back in the hospital sooner than we want to.  He is receiving two different medications through an inhaler as well as respiratory pyhsical therapy several times a day.  Those medicines combined with the pyhsical therapy will help loosen up the fluid in his lungs.

They also took his pacing wires out today.  They were leaving those in so that if they needed to revive him for any reason, they could send an electrical shock to his least, that's my elementary understanding of it. 

He also had a consult today by the speech pathologist.  At this point, I had not gotten here yet.  The speech pathologist fed him with a bottle as part of her consult.  Keep in mind that since surgery, Emory has been fed through the NG tube and has not had one reflux or vomitting episode.  However, she fed him around 12:45 and by 3:30, he was refluxing and wretching.  We called the nurse practitioner and nurse in here and they wanted to say that it couldn't be because of the bottle since there was such a gap in time in between.  This is the point where this mama was not a happy camper.  I proceeded to let them know that although they had the medical knowledge, I had the mommy knowledge.  Of course, I didn't use those exact words, but when  you take care of your own child 24/7 and know how he does things and a dr. tries to tell you that "it's not because of the bottle".....I don't think so!  So, after 2 reflux episodes and a lot of wretching, Emory finally calmed down and has been fine ever since.  We will follow up with his GI dr. on Thursday and put together a game plan.  Emory sucks and swallows just fine.....but something happens between the sucking part of the feeding and where it goes in his stomach.  That is what we need to figure out.  Until then, we are on the feeding tube.  My prayer is that we can get all of the feeding issues settled so we can try and catch up to his age. 

I think that is about it concerning the medical updates on Emory.  The rest of the family is doing fine.  After staying in the hospital the first two nights, Claude stayed last night and I'm back up here tonight.  I was able to get some rest as well as do some things around the house.  My mom has been keeping the older boys during the day and has been a HUGE help.  We could not have gotten through this without her help.  I know the boys are wearing her out so I'm glad she has a place to retreat to (somewhat) at night and get some rest.  She'll probably need to sleep for a week after she leaves here!

Tomorrow two ladies from church are going to be cleaning my house.  Thank you Nicole and Kim.....I appreciate your servant's heart more than you will ever know!  And, for everyone else who has helped us in ANY way, to say thank you doesn't seem like it's enough.  But, please know that we do appreciate every blessing and gift whether it be through meals, gifts, babysitting, monetary gifts, cards in the mail, etc.  Well, I must go for now....the nurse is going to show me how to give Emory a bath "after surgery".  Until next time.....

Take Care,


Saturday, August 7, 2010

Out of CICU

Dear Friends:

I meant to blog last night but was just really tired and couldn't think straight.  However, I was so tired that I couldn't get to sleep.  Don't you just hate nights like those?  I usually don't get around to blogging until very late at night, so if you read something that doesn't make sense, just chalk it up to being tired!

Yesterday afternoon when my mom and I arrived at the hospital, Emory had moved out of CICU into a room in the Cardiac Stepdown Unit.  He has most of his tubes removed.  He still is being fed through the ng tube, which we will go home with and will probably be on for quite some time.  Praise God that he has not refluxed any since surgery.  Before surgery, he was refluxing even with the use of the ng tube.  They tell us that his feeding and digestion will improve now that his heart is fixed, but for a DiGeorge patient, that challenge may take a little longer to overcome.  Also, there may be some other issues going on that we are not aware of yet.  So our plan for now is to go home on the ng tube and slowly start bottle feeds throughout the day and see how Emory tolerates that.

Emory is also receiving some oxygen.  He has fluid on his lungs and they are taking xrays daily to see what that fluid does.  When referring to his heart and the surgery, he is doing great.  But in order to go home, we have to also look at the oxygen levels, fluid in the lungs, eating issues, etc.  Thankfully so far we have not had any fever, infection, or bleeding.  Nothing is set in stone, but they are working torwards us going home Monday or Tuesday.  We'll attend a discharge class on Monday just because that is when it's offered.  However, I don't care when it is, I'll be nervous about taking him home anyway.

Before all this began, Emory was a tummy sleeper.  Now that he has to stay on his back for awhile, we are trying different things like laying him on his side, getting him a mobile, etc.  They brought a mobile to his room that plays music, has shapes that go round and round, and that shines lights up on the ceiling.  He really likes the lights!  So, now I need to find some type of configuration to get some lights on the ceiling.

We had some dear friends come by to see us today.  Our friends Scott and Melanie and their three boys drove in from TN to see Emory and to take us to eat.  It was great to see them and a real treat to have dinner and adult conversation.  It was a nice change of scenery.  So, a big thank you to them!  My mom is coming down to the hospital to sit with Emory tomorrow morning so that I can go to church.  Bless her heart, I know she is very tired after taking care of Emmitt and Eli so much.  But, we couldn't have gone through this journey without the help of her, my dad, and so many others in so many ways.  You know who you are.....if I started to mention them all, we'd be here all night.  We still have several challenges ahead of us and different things we'll have to face, but we know that God will give us the strength we need at the exact time we need it.  And, we are thankful for all of the family and friends He has blessed us with that have helped carry us through.

Lastly, when you pray for Emory and for us, please pray for healing for my foot and my knee.  It's a crazy story, but I started walking towards the light switch today and slipped on the wet floor.  I have sprained my right foot and left knee.  More than anything, it's an inconvenience.  The nurses made me go get an xray and they tried to send me out on crutches, but could you imagine what Emmitt and Eli would do with mommy's crutches?  I don't think so!  Anyway, please pray for the pain to go away and for healing.  I honestly don't have time to deal with something like this when I need to focus on my "4 boys".

Well, it's late once again and I must go get some rest before they start the regiment of coming in all through the night for vitals, xrays, etc.  Until next time......


Thursday, August 5, 2010

Busy Day

Good Evening Friends: 

It's late in the day and I'm worn out.  Do you ever have those days when you think back over the day and feel like you haven't really accomplished a lot but yet you are exhausted?  I've been feeling that way a lot lately.  We left a little late today for the hospital.  We needed to do some things here at home this morning and set out to do a lot, yet felt like we didn't do very much.

When we arrived at the hospital, Emory had his two chest tubes removed, the tube in his neck removed, and the catheter (spelling?) removed.  They had increased his formula feedings through the tube.  His biggest hurdle right now is that he still has a lot of fluid on his lungs.  They told us that it was time for him to go to the step down unit into a room, which is good in the fact that we can stay with him at night but it also makes me very nervous because that means we are closer to going home.  I asked them why they were so quick to send him to the step down unit and they said that he wasn't a very critical case anymore.

Emory is certainly doing better on another level....when we got there the nurse informed us that he did not like for them to leave his bedside.  I just laughed because he is one baby who likes to be held all the time and who loves one on one attention!  Emmitt and Eli loved their swing, bouncy seat, jumperoo, etc. and that kept them occupied for fairly large amounts of time for me to get various things done.  But not my Emory.....he wants Mommy, Daddy, Gremmy, Aunt Dawn, or anyone else who is willing to hold him all day long!  Emory is becoming very agitated because he sees us but we can't pick him up to comfort him.  He still has too many tubes and such that are attached to him and we would run the risk of something coming loose if we were to hold him.  He looks up to us with such pitiful eyes!

It was harder to leave him today probably due to the fact that in the 4 hours I was there, I didn't really get to spend much time with him.  When a patient comes to the CICU from surgery, all the parents and anyone who is not medical personnel have to leave.  There were several times we had to do that today.  So, all in all it wasn't a  normal day.  Emory has some obstacles to overcome, but the nurses assure me that it is very common for post op patients to experience these things.

Thank you so much for your prayers.  Please keep praying for all of us.....we see God at work in so many ways and we've had many opportunities to minister to others there in the hospital.  However, at the end of the day, we are exhausted.  Therefore, the prayers are appreciated more than you will ever know.  Will post updates tomorrow......

Until Then,


Wednesday, August 4, 2010

A Day in the Life....

Dear Friends: 

We are at the CICU today at Emory's bedside.  He is improving but it is a slow process.  He is off the ventilator and is breathing on his own but is also having some respiratory issues as well as a lot of fluide that he needs to urinate out.  His breaths per minute are ranging from 30-50 whereas before they were between 60-80.  This is a big difference and improvement in and of itself.  They are weaning him off of various medicines as they see fit but each tube and each medicine do something different so they have to be very cautious.  Please continue to pray for his respiratory status as well as the fluid he had on his lungs.

The rest of the family is doing well.  Emmitt and Eli had a play date this morning (thanks to Ginger) and then Gremmy was going to pick them up and take them back to the house for "Quiet Time".  She needed to go to the grocery store and didn't want to take them with her......can't imagine why?! =)  I figured that if she were going to the store for us, the least I could do was get the boys occupied for a couple of hours!

One thing that they do here in the CICU is make a necklace for the patients.  The necklaces are used to journal the track of treatment that Emory receives.  So far, he has 23 beads.  I'll get a pic of it and post it soon.  You can learn more about it at  Also, I realize not all of you are on facebook, but for now, all of our pictures are on there.  If you decide you want to add us as a friend my fb name is Twila Herrod Williams and Claude's is Claude L. Williams (it has a picture of rhinos from his trip to Kenya). 

We are in the process of getting the blog updated with pics, links, decoration, etc.  Someone whom we have never met before but has learned about us through another blog is going to help us with this one.  Thank you in advance to Jennifer Parris.  We are finding out just how much it is a "small world" because of friends who know other friends, who follow other blogs, etc.  I'll save that story for another day, but it's very encouraging to know that people whom we've never met and who live in other states are praying for us.

I must go for now but will update at the end of the day.  We're having some "issues" today with the fluid retention but that is something that the nurses and the PA say is all copletely normal.  Thanks for the continued prayers.



Tuesday, August 3, 2010

Last Update for Day of Surgery

Good Evening Everyone,

We left the hospital tonight around 6:15 before they did shift change.  We contemplated staying in one of the sleep rooms, but there is honestly not a thing we can do for Emory between the hours of 8:00 p.m. and 10:30 a.m.  Plus, we are beyond the point of exhaustion.  While Emory was in surgery, we had to get all of our belongings out of the hospital room, take them to the car, and whatever else we needed throughout the day, we carried with us.  For now, while he is in CICU, we will come home at night.  Their shift changes (when no one is allowed back there) are from 6:30 to 8:00 p.m. and 7:00 to 10:30 a.m.  So, we will just go up in the mornings and leave around 6:30.  Now, when he gets to the cardiac step down unit, he will be in a room like he was before and will stay there for a couple of nights.  I'll plan on staying with him in the room then.  Should any of you plan on visiting and you call our cell phones and don't get an answer, just text us.  We have to keep our phones on silent or vibrate and can't talk on them while we are in CICU.  There can be up to 2 people at his bedside in the CICU, meaning that one parent and one visitor can go back to see him.

When we left Emory, the nurses said that he was doing just exactly what he should be doing for this point of post op.  They are already weaning him off of the ventilator, they have stopped giving him the blood pressure medicine, and they are trying to wean him off of some other meds as well.  After staying in the NICU for his first four weeks of life, we know that during that time, there are many ups and downs.  But, this is the first (and most important) of many things to take care of.  The doctors seem to think that now that his heart is repaired that Emory will eat better, his reflux will get better, he won't get so tired so soon, etc.  If for some reason his vomitting episodes do not improve, then we will look at either a G tube (being fed through the abdomen), or two other gastrointestinal possibilities.  So, the first goal is to recover beautifully from surgery, to conquer eating, to decrease reflux to a minimum, and to gain weight.  After that, we will take each milestone one day at a time.

Thank you doesn't even begin to describe how grateful we are for people that we don't even know in several different states who are praying for us.  Please keep praying for there to be no bleeding and for no infection.

Good Night,


Out of Surgery

Hey Everyone,

Emory's surgery finished up around 11:30 and we were able to see him about an hour later.  While we were waiting to see him, we met with the surgeon and he informed us of what all he did during the procedure.  He repaired the two holes in Emory's heart and did not see anything that needed to be done to the pulmonary valve and the right aortic arch.  He did say that the hole in the VSD was "huge" and that he repaired both holes.  After Emory came off the heart lung bypass machine, they tested his heart to see if everything was working right and to see if there was any leakage.  There was no leakage and everything looked good, so they sewed him back up.

We had heard many stories about what he would look like in the CICU.  And, we had a tour of the CICU the other day.  With those two things combined, walking in to see him was not as hard as I thought it would be.  He is a little swollen and has about 30 tubes in, out, and around him, but he looks like himself and looks good.  Right now the key is to not have any bleeding and to not get any infections.

Thanks to those who came to the hospital to see us today.  It helped pass the time.  We are doing well but are very exhausted right now.  With us being in the CICU, it's different in the aspect that we aren't in a room and don't have a place for a nap.  I guess we are running on fumes.  They are doing some remodeling on the main waiting room that is nearest the CICU, so we are just moving around the hospital when we're not in the CICU.  If you come to visit, call one of our cell pohnes so that we can com  let you know exactly where we are.

One thing that is different in being in the CICU and the NICU is that as long as it's only two people at Emory's bedside, we are fine.  That can include family members, siblings, friends, etc.  Although the heart surgery is done, we still have a long road ahead of us and would appreciate your prayers.

Take Care,


Another Surgery Update

Dear Friends:

We just heard from the nurse and she said that things are going along as planned.  Emory came off the heart lung bypass machine completely and successfully.  They are in the process of sewing him up right now and then the dr. will come down to talk with us in person.  We will get to see him after he gets settled in the CICU which should be around 12:30 or 1:00.  Will keep you posted.....


Surgery Update

Dear Friends:

The nurses came this morning to our room around 7:00 and walked us back to the operating area.  Claude and I were able to carry him back to that area and be with him until we go to the door that entered the operating room.  Since we've been in the waiting room, we received 2 phone calls updating us on the progress of how he is doing.  He is starting to come off the heart/lung bypass machine right now.  They have repaired the holes and are beginning to look at the valve and the arch.  Once he comes off the machine, they test the heart, and they make sure that there are no leaks, they will sew him up and take him to the CICU.  We are currently in the surgical waiting room on the 3rd floor but will be in various places throughout the hospital for the duration of the day.  Claude and I have to stay in the waiting room until the dr. comes back to talk to us after the surgery is complete.  If you would like to visit and can't find us, just call one of our cell phones.  Will keep you posted......


Monday, August 2, 2010

Surgery is Tomorrow

Hey Everyone,

From my last blog until now has been a very busy time for us.  On Sunday, we went to church, had lunch, the boys had a birthday party to go to, and then we packed our bags and headed to the hospital for Claude and I to stay the night.  The team of doctors always does rounds in the mornings around 9:00 and we wanted to make sure that we got to talk to them as well as possibly the surgeon.  Upon our arrival, I just happened to ask the charge nurse for linens and towels (not knowing she was the charge nurse) and we got to talking and her and Emory's night nurse helped us out beyond measure.  They were fabulous!  Vicki (the charge nurse) made it very clear to the team of doctors at shift change that we "needed a plan".

So, one of them was here bright and early to let us know that they would all be back around 9:30.  Sure enough, they arrived around 10:00 and it was Dr. Kanan (spelling is off), his "fellow", and the resident.  We began talking with him about how Emory was doing and he informed us again of the meeting that the surgeons have every Monday afternoon at 4:00 to discuss all of the cases, schedule them for surgery, etc.  Towards the end of all our questions, he got beeped and called out into the hall.  Dr. Kanan is the one who diagnosed Emory within 24 hours of him being born and is the one who came to my room at Fayette Piedmont to tell us the news of Emory's heart condition.  We have great respect for him because of how he handled things on that day as well as his professionalism.

Five minutes after being beeped, Dr. Kanan came in and told us that there was a cancellation for tomorrow and they were planning on putting Emory in that slot unless an emergency situation came in through the night.  He also said it was tentative so we waited until the surgeon's assistant came in to let us know that the surgery was scheduled for tomorrow morning at 7:30.  After that, we had a flood of doctors, anesthesiologists, social worker, volunteer, etc. come to the room in addition to Emory having some x rays done and blood drawn.  Once it calmed down a bit, we started calling, texting, and facebooking to update everyone.

Tomorrow morning, we will go back with Emory around 7:00 to a private area just outside the operating room and pray with him.  Then, the surgeons will take him into the operating room and we'll go to the waiting room.  The entire process is about 5 hours.  The first hour is spent sedating him, putting the iv and other necessary tubes in, etc.  The next three hours are spent doing the actual procedure and the final hour is spent taking him off the heart/lung bypass machine and getting him settled into CICU.  While in surgery, they will repair the holes in his heart and they will assess what, if anything, needs to be done to the pulmonary valve and right aortic arch.  He will then be sedated for a couple of days and will stay in the CICU for 3-4 days depending on how well he does to start breathing on his own.  After that, we will come back to the area where we currently are which is called the cardiac step down unit.

We are staying at the hospital tonight so that we wouldn't have to leave our house so early in the morning.  My parents want to be here early as well, so the boys are staying overnight with some friends of ours.  Thanks to the Keaheys for being willing to take care of my two boys just after steam cleaning your carpet =).  So, that is where we are right now.  Feel free to stop by or call.  But, most importantly, keep us and everyone involved with the surgery in your prayers.  I will update the blog periodically throughout the day tomorrow.



Sunday, August 1, 2010

Saturday in the Hospital

Dear Family and Friends:

We went home very late last night from the hospital and were ALL up here today.  Thanks to the Riesberg's for keeping Emmitt and Eli last night and thanks to Gremmy and Papa for coming back into town today to help us with the boys.  After picking the boys up today, Claude took them for haircuts, we had some lunch, packed a bag of movies, books, etc. and headed up to the hospital.  While we were there, we visited the library, read books, and watched several movies.  Although they got a little restless, I'm glad that they were able to see Emory and that at least Emmitt could gain a little more understanding about what is going on. 

Upon our arrival today at the hospital, we talked with the nurse and the "fellow" about Emory's condition.  They think he is doing better, but mommy and daddy aren't so sure.  He does tend to throw up when they stop the feeding tube to feed him with the bottle, so thankfully the nurse is not going to give him the bottle today since that seems to keep more food in him and to keep him calm.  That is what my "mommy gut" tells me to do anyway, so I'm thankful for a nurse who sees that as well.  He is breathing at about 65 to 75 or more breaths per minute.  In addition to increasing his lasix, they have also added another diuretic called aldactone that will help with his potassium levels.  We have yet to see how these two drugs will affect his calcium level, which is so important in regards to the DiGeorge Syndrome.  In a nutshell, Emory is not necessarily doing worse but he also has not had a ton of improvement.  His weight is pretty much the same as when they admitted him into the hospital on Thursday.  But, we also don't know if his previous weight gain was from the formula or from extra fluid on his lungs.  We really don't have any way of knowing that.  Really, there are several issues going on, but the consensus seems to be that if we can get the heart fixed, that everything else will be somewhat easier.

They gave us the option to go home before we have the surgery.  They did say that at best case scenario, they would do the surgery the middle of next week, but it could be more like the end of the week.  This is due to the volume here at the hospital and the surgeons schedules.  They have 3 surgeons and then only so many CICU beds and so many "step down beds".  Let me clarify what I was saying yesterday.....Emory's case is critical and necessary; however, when it comes to heart issues and heart surgeries, his is a little on the milder end.  After talking with the charge nurse last night, we understood things a little better.  When we left the cardiologist office on Thursday, he saw the urgency for surgery very soon.  And, when we arrived here at the hospital, they agreed.  But, the cardiologist doesn't know the surgeons schedules and obviously don't know how busy things are here, so that is why we have this type of situation.

Claude and I both feel that it is necessary to leave Emory in the hospital until he has his surgery.  We feel that by doing so, he will be monitored 24/7, will have documentation of his throw up episodes, will have constant feeds so he can gain more weight, etc.  We've seen the actual attending physician (cardiologist) a couple of times, but not much.  We have yet to see the surgeon.  So, we are home tonight and have church and a birthday party for one of Emmitt's friends tomorrow afternoon.  After that, we will both stay at the hospital tomorrow night in order to try and talk to one of the surgeons on Monday morning. 

That's about all I can type right now.  My eyelids are heavy!  I will keep this blog updated daily and will post as soon as we know something about his surgery date.  Thank you for all of the thoughts and prayers as well.