Sunday, July 31, 2011

Ruff week...

We had a pretty ruff week. Cole has been miserable and not really sleeping since he's been home. We think the soreness is starting to go away, finally.  Last night he did really well and slept most of the night and all morning.  We were able to take him to the grocery store with barely any screaming, barely.

They took his stitches out at his cardiology appointment on Friday. They were impressed with his weight gain and will be doing monthly ECHOS to see how is pulmonary arteries grow so they can do his next surgery ASAP. Most likely before November she said. She did give us some stronger pain medication to give Cole since the Tylenol they prescribed us wasn't doing anything. We didn't give him much of the Tylenol anyway because of the whole "Tylenol is a liver killer" thing.

We were having a small scheduling issue with our pediatricians office. We had an appointment scheduled for Wednesday but, canceled it because Cole was so miserable and we didn't think getting his 2 month shots was going to help him in anyway. So, they couldn't see him until August 23rd. That was pretty far away but, whatever. That was the closest day they had available. A few days later we got a call from the pediatrician. The actual doctor not the office. He was calling to check up and see how Cole was doing after his surgery and what was up with canceling until the 23rd. Ashley explained everything and he said, "I'll fit you in somewhere." Now Cole's appointment is this Tuesday.

Cole is two months old today! That means bear pictures. He's going to be bigger then the bear very soon the way he grows.

Cole fell asleep literally between shots...

Tuesday, July 26, 2011

We had a ruff day and night. Cole barely slept and would constantly wake himself up. Be it stretching, burping, hiccups, coughing, and for no reason. Completely and utterly upset. Nothing helped. He would fall asleep for 15 minutes max and wake himself up. It wasn't until  4:30 pm that he finally fell asleep for two hours. He seems to be doing good now and hopefully will want to catch up on his sleep tonight. We went ahead and cancelled his pediatrician appointment tomorrow because he was so miserable. There was no possible way we'd be able to handle that.

We aren't allowed to lift his hands above his head or pick him up under his arms for 6 weeks, so his ribcage can heal. Which is just great. Is it child abuse to tie your kids arms down around his waist?  He's also on baby aspirin to prevent blood clots in his shunt. Do they let you keep the shunt when they take it out? That'd be good for the baby book wouldn't it?

I'm going back to work tomorrow. 

Monday, July 25, 2011

Home At Last

Well they were going to try keep us if Cole didn't get his hearing test. Audiology came in first thing in the morning and he wasn't sleeping. We knew they were going to try to keep us for something completely unrelated to his surgery. They did give him an ECHO that he pretty much screamed through the whole thing. This guy was good or completely insensitive. He got everything he needed and didn't let the screaming make him stop and throw a hissy fit like prior ECHOs we've had. Audiology came by again and I was praying "Lord, for the love of all things sane in life, please let this child sleep through this test." And he did. The whole thing. Twice! She couldn't get a good read so she had to do it again and tried a few more gizmos to get it. She said she couldn't pass the right ear. {Which if I could of sworn the right passed last time and the left didn't} She said there is some variables but she would recommend a follow up appointment. Yes! Now there was no reason to keep us. This was around 12. I think around 3:30 or 4 they came in and told us we could get ready to go home. Of course, CHOP is infamous for letting you out at rush hour. Scenic ride home and it hasn't rained the whole time we were in the hospital until we were on our way home and had to carry a bunch of bags into the house.

Cole still has some pain. Mainly when he burps or has the hiccups. He'll scream and scream and scream until his hiccups go away. We have a pediatrician appointment on Wednesday then back down to CHOP on Friday to get his stitches out and a follow up with them.

Let's see how he does back in his own bed.

Sunday, July 24, 2011

Cole is off oxygen and is in the step down unit! The night nurse and the day nurse both tried to take him off oxygen and said he desaturated down into the 60s, so they left it on. He was only on a 1/4 of a liter. Maybe he was screaming bloody murder when they did that? As soon as we got over here the nurse looked at his SATS that were in the 90s and said let's see how he does. That was around 5 it's 10 now and he is hanging out in the mid to upper 80s.

He still seems a little sore. Every time he coughs or sneezes he screams. Not as bad as he was but, enough to wake him up when he's sleeping. We have a sound machine for him to help quell the hospital noises but, it must not be as loud as the other one we have. It doesn't seem to help him much. Maybe we can call audiology and tell them he passed our hearing check? It's still much quieter in our own private room then being practically in the hallway.

We're hoping he has a good night and that will be enough to let us go home soon but, you never know around this place. Tomorrow all the shifts change so all new doctors start their week up and who knows what they'll think of Cole.

Saturday, July 23, 2011

Saturday Update

 Cole is still in the ICU only because there are no rooms available in the CCU. His belly was quite distended the past few days but, today it went down allot. He had a bunch of good bowel movements that helped him out. He hasn’t taken allot of pain medication today. I think he got a dose in the morning and that was it. He seemed to still be in some pain later in the night but, he fell asleep before we could give it to him so, we just let him be. His appetite seems to be getting back to what it was pre-surgery. Ashley hasn’t breastfed him yet since she still isn’t staying at the hospital. Once he is in the CCU she’ll probably start. She’ll be able to stay at his bedside then. We’re hoping a bed opens up in the CCU tomorrow, that’ll be one step closer to home for Cole and we are all ready to get home.  It’s rare that they discharge kids on the weekend though so we won’t hold our breath for an opening.

We did hold him a few times too. It’s still a little weird. You don’t want to hurt him and any sound he might make makes you think you did something to put him in pain. You have a list of ways you can’t hold him and things he can’t do for 6 weeks that’ll make your head spin. The one nurse told us not to worry about it too much but, you don’t want to damage your kid’s ribcage for the rest of his life either.

They did take his bandage off and his incision looks like it’ll heal beautifully. Of course they’ll be opening it up again in a few months hopefully it’ll look just as good then, too.

They haven’t completely taken him off oxygen yet. They’re still running room air through his nose. I think they’re going to see how he does without it tonight or tomorrow.   

Glimpse into our life at chop...

Stare at this picture for about 3 hours, switch between standing and sitting every 15 minutes or so. You should get a pretty good sense of what its like.

Friday, July 22, 2011

7/22/11 Update

Overall Cole had a good day.  There was one time when he dropped his heart rate and dropped his oxygen saturation levels and they had to give him a few breaths, poor guy was in pain and just decided he wasn’t going to breathe.  They then gave him pain meds and the rest of his day was great.  He got his arterial line out, his chest tube and one of his ivs out today.  Although, his poor little belly is so distended from having to get so many breaths the last 2 days (he was holding his breath yesterday too when they took him off the ventilator immediately after surgery.)  With that being said he needs to get all that air out of his tummy and they would like for him to be wetting his diapers more.  He took one bottle of pedialyte this morning and then two bottles of breast milk this afternoon/evening.  He had a long awake period he was awake for about 5 hours and just so content.  He is just so sweet. 

I am staying with Ian at the Ronald McDonald house again tonight since Cole is still in intensive care.  They said they would transfer him to the step down unit this morning, but since he held his breath that one time today they figured it was best for him to just stay in the CICU.  

Friday morning update

Cole's art line and chest tube came out. If they have a room open he'll be transferred back to the ccu today. That's how well he is doing.

Thursday, July 21, 2011

Cole's First Shunt Surgery... A success

Right before I started writing this blog post; I remembered last time at the Ronald Mcdonald House we lost a few posts because of the internet connection and had to start writing them in Word. Thankfully, it was before I started and not right after I lost one.

Last night as things were winding down; we got a knock on the door. We were both a little puzzled as to who it was. It was a father and his 13 year old daughter who has HLHS and has had over seven surgeries by Dr. Spray. She wanted to come in and see Cole. Obviously, we welcomed them in. It was good to see someone who has something way more complicated than Coles’ condition doing so well. She had a pacemaker fail after six weeks of being replaced. She came in on Monday for a new one and was leaving today to go home. It was a very nice reassurance from God that he can do amazing things.

Cole went back to the CPRU around 8 am and went back to anesthesia a little bit after 8:30. Everyone in anesthesia remember Owen. What am I saying… EVERYONE at CHOP remembers Owen. He did pretty good. He only was upset for ten or so minutes at best. We walked him to the elevators and handed him off to anesthesia and we went up to meet with Dr. Spray. He explained to us what he was going to do and that he’d have Cole on the bypass machine during the surgery. We then went back down to the floor and got our stuff out of the room and got a locker to put it in. What a great idea, lockers.

We talked with Dr. Spray after the surgery. He said Coles PA’s are 1/3 of the size they should be and only time will tell if the shunt will help them grow. Cole was only on bypass for eleven minutes. All the nurses always say how fast Dr. Spray is. We didn’t get back to see Cole till after one. As soon as they got him settled in his neighbor came out of surgery. They don’t let parents in the rooms when a child is brought out of surgery. He’s doing great though. He is on morphine for pain and dex-something or other for sedation. His c02 was a little bit high earlier in the day but, when we came back from dinner they had just checked it and it went down some. He seemed to be breathing stronger which probably had something to do with that.

Ashley decided to come back to RMH with me since, Cole won’t be eating tomorrow and is pretty much going to be sleeping all night. This way she can get a good nights’ sleep while she can. Hopefully tomorrow morning Cole will be more awake and we can get him feeding.

Our favorite Doctor is on this weekend. It’s always good to see a face you trust. While we were catching up with her; our GI doctor stopped in. Right after she left we heard Dr. Natarajan’s name over the loudspeaker. She was calling in to check up on Cole…

We asked our GI doctor, “So, does Cole have ALGS? Or is he just a carrier of the gene?” By the original definition he is just a carrier because you have to have cholestasis, facial features, and a heart condition. She said some doctor is working on trying to rewrite the definition and really figure everything out. Interesting little tidbit.
Thanks for the prayers and keep them coming.

Recovering. ..


Everything went perfectly. We are waiting for them to take his breathing tube out before we go back to see him.

Well fill in more details later

10:45 surgery update

Cole is off bypass and everything went well.  The shunt is in and his oxygen saturation levels are already up.  They will be closing his chest and making sure he tolerates that and then Ian and I will meet with Dr.Spray then we get to see our babe!!!! 

10am surgery update

Coles nurse just came and gave us an update.  Cole went to sleep well and he is currently on the heart lung machine (bypass.)  Everything is going according to plan. 

Thanks for your continued prayers!

Trying to soothe Cole in the cpru before he went back for surgery

Wednesday, July 20, 2011

Tomorrows the day

Tomorrow is Coles big day.  His open heart surgery is scheduled for 8:30am.  He is the first case (YAY!)  They will be placing a central shunt in his pulmonary artery & going in through his chest.  Cole will be on bypass for about 20-30 minutes and they do not need to stop his heart for this surgery. 

Thanks for your prayers!  We will keep you updated as we get updates! 


Tuesday, July 19, 2011

Tuesday Night:

Cole's IV failed today. They kept telling us it "flushed beautifully" and Ashley kept saying, "No, no, it's just leaking all out." Well IV team came up and sure enough it was just leaking out. They didn't put a new one in. They decided to give him a break from it until tomorrow. It's a good idea because that gives it less chance to fail before his surgery. {He'll need it for surgery}

 Audiology stopped by again...When he was awake... Again. This girl actually gave us her pager number so we could page her when he fell asleep. Unfortunately, IV team was supposed to come at the same time so we never paged her. IV didn't come until later. We aren't worried about the hearing thing. They have plenty of days to come back and try. He probably won't sleep long enough for them to do their thing.

 We heard from our fill in cardiologist today that she to got a call from Dr. Natarajan. Asking what is she doing to her Cole. That makes three cardiologist that have talked to her so far. So much for resting up?

Cole's buddy Zac came to visit him tonight, in the day time Cole was practicing his scary face for Zac...
The practice paid off. They were able to nail it in unison for the camera.
All in good fun of course...

Cole in the am

Monday, July 18, 2011


There isn't much to report today.  Audiology came by to repeat Coles newborn hearting test since he failed the first one, but of course he wasn't sleeping so they couldn't do it.  Hopefully, the next time they stop by he will be sound asleep so they can do it. 

Cole got weighed again today and weighed in at 10lb 1oz and he also had his length checked and he is just about 22 inches long.  I can't believe how big he is getting so quick.  Owen didn't weigh 10lbs until he was 6 months.  I am not used to having a big baby.  I am so thankful Cole keeps growing and growing and his liver looks great. 

We spoke to the attending cardiologist today and he said that Cole will be having a partial repair instead of a full repair.  They will be placing a shunt in his pulmonary arteries to help them grow a bit and then in a few months after his pulmonary arteries have grown they will do another open heart surgery and do his full repair.  Dr.Goldberg also said that they might go through his back (a thoracotomy incision) instead of going through his chest (a midsternum incision.)  Dr.Goldberg also said to plan on being here through the weekend.  As I said before we are praying everything goes very smoothly and little guy will be home soon after his surgery.

Dr. Ravishankar (another attending cardiologist) came in today to let us know Coles primary cardiologist Dr. Natarajan who had major surgery last week is doing well.  I'm sure if you have been following our blog you read that she will be out for 3 weeks.  Dr. Ravishankar also said that she spoke with Dr. Loomes (Coles liver doctor) and she is absolutely thrilled with the fact that Coles liver labs came back normal!!  Yay!!!  I love every time a doctor comes in here and is all excited because Cole's liver is unaffected by the ALGS!  I am so thankful to God for a healthy liver for Cole!

Today we got a few visitors which was nice!!  It breaks the day up a bit.  We spend all of our time loving on our little guy.  He's such a sweet heart.  Every new nurse that comes in says how cute he is.  Most of them also say he looks just like me (Ashley). 

I have been so tired, Cole has been nursing every 2 hours instead of his normal every 3 hour schedule.  He must be going through a growth spurt.  Porking up for his surgery.  At home he usually goes atleast one 4-5 hour stretch at night, the past two nights he has been up after 3 hours sometime sooner to eat.  So, I have been averaging about 4-5 hours of sleep a night.  Morning comes too soon here you pretty much have to be up at 6am.  That's when the doctors start coming in to check Cole and wake him up.  haha!   Thankful it has been fairly quiet around here during the day so I am able to squeeze in a short nap.  Ian has been staying at the Ronald McDonald House.  We both sleep great with the sleep we get.  Ian usually leaves here around 10-11pm and comes back in the morning around 9.  He walks back and forth it is about a 10-15 minute walk.

Our family has been great about stopping by our house daily and getting our mail and bringing us anything we need. 

On a super sad note, another family lost their precious son to ALGS last night.  He was 16 years old.  My heart sunk when I read the news this morning.  Please, keep the Caldwell family in your prayers.

Sunday, July 17, 2011

Surgey Date

We finally have an actual surgery date.  It is set for Thursday, July 21st.  Yes, it is sort of annoying that we have to wait 4 more days we were hoping to get the surgery over with.  As I said before I am just thankful that we have our own room with our own bathroom.  It is crazy how dead it is around here on the weekend and how during the weekdays this place is buzzing! 

Cole got weighed today and is now up to 10lbs!!!!  Little Fattie!!!  He smiled at me purposely today for the first time!  Soooo cute!!  He is so alert when he is awake and very vocal.  We are so in love with our little guy!  He is such an easy going baby. 

Thanks for the continued prayers.  Please, pray that surgery and recovery go very smoothly.  They told us babies go home between 4 days and 2 months after open heart surgery.  Pray that it will be the 4 days!!! 

Hanging out

Saturday, July 16, 2011

Surgery Set... Kind Of...

The charge nurse told Ashley earlier this morning that they thought Cole would be going home today and be able to go to the ALGS picnic...Well the nurse was wrong. They just did rounds on Cole and since his SATS have been going down a little bit at a time that they want to do surgery this admission. Which has been our feeling all along. They might even put him back on oxygen to boost up his SATS. The surgeon's thoughts would be to put a shunt into help grow his pulmonary arteries. This will most likely happen on Tuesday or Wednesday. I'm glad we have a more clearly defined plan now.

Friday, July 15, 2011

Today was another very quiet day for us.  There were only a couple doctors in here this am and Cole had his blood work really early this morning, but other then that nothing else happened.  Ian's mom came early this afternoon into the evening and stayed with Cole so Ian and I could go out for a late lunch.  We went to the Baby Blues BBQ and the food was excellent!!  It sure was nice to get out and enjoy the beautiful weather.  It sure was hard coming back into the freezing hospital.

Labs Back

Cole's liver labs came back from this morning and everything looks perfect. They want to monitor him for another 48 hours to see if his SATS stay consistent. Which we didn't have a specific time line before... always just got a "couple of days" type answer.  I think they think he's still hanging out up in the 80s from the blood transfusion and oxygen he was on. We remember Owen's would always stay higher for a while after that stuff. I would guess on Monday they would talk with everyone and see what they want to do.

He was miserable last night. He cried for atleast  an hour and we couldn't figure out what was wrong.  Ashley figured out after I left that he was probably too hot and had a heat rash.

CHOP has been a madhouse the last two days. The lobby has been packed full of people and media types. They launched an in house radio station for the kids to use. It's because of the Ryan Seacrest Foundation
They repainted the whole downstairs because of it. Ryan Seacrest, Selena Gomez, and David Akers were here to launch the station. Kids will be able to call in and request songs, actually go into the studio and be the DJ and talk about hospital life. It's a good way to help the patients be able to interact with other patients more.

I'm just glad I'm able to watch the tour defrance. woowhoo

After they took him off the oxygen

Cole with his oxygen a couple of days ago

Thursday, July 14, 2011

The waiting game

There isn't much going on here.  Today was a quite day for Cole, not so much Ian and I.  I felt like there were people in and out all day.  GI did stop by and looked at Cole and felt his tummy and they said he looks and feels great.  We will get liver labs in the morning.  This will be the first time they are checking his liver since he was discharged from the hospital at birth.  We still have no idea what they are thinking as far as surgery.  At this point it sounds like they just want to monitor his oxygen levels over night and if they stay high enough send him home until his surgery date and if not possibly do surgery tomorrow. 

Kleinfelter's Syndrome

Cole's newborn genetic screen came back and it showed that he has something called Kleinfelter's Syndrome.  This really dosen't mean much at all nor does it change the course of action with his heart.  Kleinfelter's doesn't really affect any of your major organs she said males with Kleinfelter's often are tall.  This may be to his benefit because usually with Alagille's Syndrome kids are smaller.  Although, the reason why some kids are smaller with ALGS is because their liver is affected.  At this point Cole's liver is not and we pray that this continues!!! 

And We Wait

There isn't much to report.  Cole will not be having surgery today and they still are unsure as to what approach they want to take.  There has been talk about possibly sending him to the cath lab and putting stents in his pulmonary arteries or open heart surgery and putting a shunt in.  A few of the cardiologists and surgons need to talk and then we should have an idea of what they want to do and when they want to do it.  They are just going to continue to monitor him and see what his oxygen levels do in order to determine when exactly the surgery needs to take place.  So, it sounds like we will just be hanging out at our home away from home.  I am so thankful that we have our own spacious room with big windows that let in alot of sunlight! 
Cole handled the blood transfusion well. His heart rate dropped for a second during the critical time period after the transfusion; giving Ashley a good scare but, it was just because he was in a deep sleep. They changed his pulse/oxygen sensor right after the transfusion and his levels were up in the high 80s. Now was that because of the sensor or because of the transfusion? They took him off of his oxygen to see how he would do and he seems to be holding up well.

He is not allowed to eat right now. They want to make sure he would be ready for his surgery if it's going to happen today. The doctor said we should know by 11 am if he will be going back or not.
The fact that we can wait is a good thing. They aren't as worried about his stability as they were when we first got here and can think things through a little bit longer.

Wednesday, July 13, 2011


They did some blood work to check for any sort of infection or a low hemoglobin level thinking one of these may be causing the drop in his oxygen level, but everything came back normal.  As of now we don't really know much.  The only things we have heard is that they want to get Cole in for his surgery ASAP.  Although, we want a specific surgeon and his schedule is full so Cole will be an add on.  They are most likely one going to do a partial repair and then in a few months do the full repair.  Cole's pulmonary arteries haven't grown at all since he is born and he has gained 3 lbs since birth.  He is doing really well with gaining weight everyone is thrilled about that.  The doctors have no concern about Cole's liver at this point!  Praise God!!  So, as I was writing this they came in and said they are going to give him a blood transfusion to see if that will bring his oxygen levels up a bit in hopes that they MAY be able to hold off on surgery a bit.

Thanks for praying!


Cole is being admitted today. His pulse was low and they think he's looking a little blue around his lips. Probably have surgery in the next few days most likely. More info later...

Sunday, July 3, 2011

So they changed the abbreviation for Alagilles Syndrome from AGS to ALGS. Apparently we stole some other genetic mutations abbreviation.