Halloween

It has been a very eventful day for us. I took Ethan to take a present to a friend of ours we met in ICU. I have mentioned him before and asked for your prayers in his behalf. I now continue to ask for your prayers for his parents Cody and Eron. Gavin lost his battle with congenital heart disease this morning following complications from surgery. He was a brave little man and an inspiration to me. His parents continue to teach me how to stay strong and fight for your children. Please pray that they will be comforted during this time and that they will find peace.

Ethan was able to trick or treat a few houses this evening in my sister's neighborhood. This is not how I would have chosen to spend his first Halloween but I'll take it. I am so grateful, especially with Gavin's passing, that Heavenly Father has seen fit to let Ethan stay with us for now. I feel blessed to have had him for this long and am trying to not take any of my time with any of my children for granted. Gavin and Ethan have taught me that...thanks little guys.

10/30/2008

We are settled in at my sister's house for the week. Today I am concentrating on getting a good handle on what medication Ethan should take when. It's a whole lot easier to keep it straight when the pharmacy department at the hospital is sending up the meds he needs for the day in single use syringes labeled with the time the med is given. So far so good. I'm actually glad to have the opportunity to get used to keeping Ethan out of the hospital before I need to get used to my other kiddos too. It's been a very quiet day and a good one. I'm hoping that I will hear back from Dr. Altman's office soon about moving his follow up visit from next Friday to earlier in the week so I can go home. It feels so weird to be able to go anywhere I'm brave enough to take Ethan without clearing it with a surgery team, floor cardio/pediatric team, and a police force quality nursing staff.

Leaving the Hospital

We are going to be discharged at some point this afternoon to stay in Houston until Ethan's follow up visit next week. Richard and Mom are coming down this afternoon to bring me my car and Ethan's carseat. I can't wait to go all the way home but I know that he needs to stay in town incase of an emergency for the next few days.

They are decreasing his Lasix to twice a day and upping his analapril to twice a day. He will still take his antibiotic for his aspleenia twice a day a she has been since birth, and he will take motrin or tylenol as needed for pain.

I can't believe that this part is almost over...

Back to Normal...Almost

Ethan is acting like himself again. He is smiling at the nurses to make them smile (instead of the other way around) and eating and (finally) pooping. He is playing with his toys and cooing at everyone. The only thing that is different is how awake he is! He is more awake and awake for longer when it isn't nap time. Also, he now has a medication schedule. Aspirin for blood thinner once a day, amoxicillin twice a day, lasix 3 times a day, and motrin 4 times a day. I have to write it down to keep it straight and to make sure that he gets them on time. Hopefully, we will be down to amoxicillin, aspirin, and lasix before we go home. Motrin is mostly to keep his massive headache from his Glenn at bay. It seems to be getting better because he isn't as cranky. He didn't sleep as well last night because once again he is trying to flip his schedule into a night owl's. We are going to work on that today and not let him sleep as much at a time when the sun is out. He's been up since 5:45 this morning and he is still going strong at 7. I'm just so grateful that he is happy and doing well that I'm not even caring that I didn't get more than an hour of sleep between wake ups last night...Just want to get that schedule worked around before we go home and I have to get back to the reality of raising 4 kids. I can't wait...

Home Sweet 15th floor!!!

The past few days have been great! I took Elise to see High School Musical yesterday and she had fun and loved it...We all went to the zoo today and had a good time at the zoo boo. Everyone has gone home now and I finally have a few minutes to update this little blog. Okay...Saturday Ethan's drain tubes were removed as well as his IV (it had failed) and arterial line in his arm. Today the arterial line in his neck was removed and he was able to be held against my chest. He is on Tylenol for pain on a schedule and can have other pain medication as needed. He is now on the 15th floor again and is doing great. He is no longer on oxygen and is holding around 80 on his oxygen sats. He is only on a pulse ox monitor like he was before surgery. Pictures soon. Updates sooner!

CVICU - 3

Today has gone fairly well. Ethan is having a hard time with swelling and fluid retention so he is on Lasix (Spelling probably wrong) and they just gave him a second, but one time diuretic a little while ago. These are helping, but he is now on fluid restriction...basically 45 cc's of breastmilk every 3 hours. His is still on adavan and morphine for pain, as well as tylenol for headaches. He is uncomfortable but stable. Last night his central lines prevented us from holding him to help comfort him, but the nurse had me snuggle him in bed whild kneeling on a chair to help calm him. This worked until about 2 this morning and then he was able to have more of his pain meds and rest fairly well. I was able to catch a couple hours nap downstairs this afternoon to sort of make up for loss of sleep last night. I'm looking forward to seeing my older kiddos tomorrow. I miss them terribly. I am hoping to surprise Elise with a movie run to see High school Musical. And we are going to try to take everyone to the zoo at some point this weekend. This has gotten long and we are trying to take time to help the kids deal with everything being up in the air. With surgery over there is a light at the end of the tunnel, but it is still way down the tracks. I'm just ready to be home with everyone. I haven't been home for a month now and I miss my bed, cooking, my own washing machine, driving...the list could go on for a while. I am so thankful to have been here though...Ethan would be much worse off without this surgery. It's just hard to see him in pain. One day at a time right??? I think the days are getting longer. Time does not fly in the CVICU... Hoping for Ethan to have a better day tomorrow... I tought the stress level was sky high before surgery...now it is 10 times worse...

On the bright side, he is down to only one arterial line that is placed in his neck, so they let us carefully hold him for most of the day. It was much easier to comfort him but we were constantly watching that line to make sure it was not pulling. His IV failed in his arm so they will have to stick him again to catch another vein before they can remove his arterial line. After that is out he is going to be much easier to hold and love on.

CVICU - 2

The pictures from today are much better than last night. He is more swollen but doing so so so well! Today has been fairly eventful. Ethan is off all of his "drip" meds that have kept him sedated. He is also off of the blood pressure medication as he is holding his own with his pressures. He is wiggling a little bit and moving his arms and legs. He is working his mouth for a pacifier but is not allowed one yet. This morning he was waking up too fast so we were not allowed to touch him or talk above a whisper to lessen the stimulation in the room. The low stimulation worked because he was extubated this afternoon. They have taken him off the respirator and stomach tube. They have taken out the arterial line in his groin and his atrial line that was in his heart. He's looking a little swollen from the bypass still but the swelling goes down everytime I see him. I have been amazed at his progress...if I had done what he has been through I would still be knocked flat! He's an amazing little boy. He is on room air at this point even though the nasal cannula is still in his nose. His oxygen saturations are hanging out in the low 80's and that is exactly where they want him to be. We are one step closer to home! They told me a few minutes ago that if he continues to do this well overnight they will move us back down on floor tomorrow and he will not have a need for a step down room. I should be able to hold him for a few minutes either later tonight or tomorrow morning. This has been quite a wild ride!

Special note to Elise: Ethan is fine and doing better than the doctors expected him to. He is looking forward to seeing his favorite big sister on Saturday. He may not even be in the ICU when you see him. You might be able to hold him then but we will have to ask the doctors to make sure it's okay. Momma has a big surprise for you when she sees you this weekend. Keep your chin up because this is almost over. I love you and will see you day after tomorrow. Have fun at the football game!

Momma

CVICU

He looks great. The adrenaline is wearing off and I am exhausted. Nolan, Mom, and Dad have gone to Katie's house for the evening. Richard and his dad have gone to get Chili's take out, and Richard's mom and I are holding down the recliners in the waiting room where Richard and I will be spending the night. Ethan has two central lines, and atrial line, breathing tube/machine, three arterial pulse oximetry monitors, one veinous pulse oximetry monitor, catheter, tube to suction his tummy to keep off acid, and lots of tape. It looks much worse than it is. We got a surprise when we went to see him. A nurse walked in with a huge stuffed bear and balloons...from Dr. Fidone. Brought tears to realize that everyone is rooting for him...even those that we don't know or realize. I'm putting this day to bed guys...more updates tomorrow...hot doggie we made it through D-day...

Surgery 6

Ethan update!!! They just called and they are through with the surgery part! He is off bypass and doing well. What a relief! They still have to place monitoring lines and a chest tube before they close and there is some small amounts of bleeding that have to be better controlled before he leaves the OR, but he is doing well! The light is at the end of the tunnel and we are catching a glimpse. Hopefully he will be out of the OR within the next 1 - 1 1/2 hours. Then we will have a dtailed conference with Dr. Fraser about what exactly he did and why and all that. Heart surgery carries a great amount of uncertainty of what you find when you actually get in there...

When I was typing above got called to post op meeting with Dr. Fraser...

Ethan was very hard to get started in surgery. It was almost noon before surgery was actually underway. The did an echocardiogram before surgery and Ethan was very stable throughout the whole procedure. He has two right atria that is common in Heterotaxy Syndrome. He has two superior vena cava...the one on the right is tiny and irrelevant at this stage and probably will remain so. The one on the left has been moved to connect with his pulmonary artery. So, we have a successful bidirectional Glenn Shunt. We have good heart function and good valve function. Ethan has two ventricles but they do not plan on correcting his AV canal because it is keeping him alive and he has to be looked at as a single ventricle heart...which is good because a ventricle repair in Dr. Fraser's words would be dangerous with the size he is. The other thing that was going to be fixed today was the pulmonary veins. His veins and pulmonary artery were twisting and pulling on each other which was what was causing his desaturations. Instead of cutting those veins and reworking them, he moved the pulmonary artery to release the pressure. So, we had two surgeries in one today which was only possible because of his size. Ethan came off bypass well and is on a ventalator. His saturations are in the high 80's and we are hoping they stay that way. His next surgery will hopefully be when he is 4 - 5.

Next update after we see him in about an hour. We are now CVICU parents...an exclusive club I hope none of you have to join. Thanks everyone for your support and prayers today...whatever you do...please don't stop! ;0)

Surgery 5

Still no new news on Ethan. Nolan is doing sooooo well. He ate some lunch and is playing with his blocks on the waiting room floor in the Family Section of the Ronald McDonald house located in the Cardiovascular waiting area. Had to take a picture. He is jabbering to himself a little more (still no known language ;0)...maybe Ewok) and is a little louder than normal. I think it's because he can hear a lot better...

Just got a call from Ethan's team...he is on bypass and Dr. Fraser is now finishing isolating the vessels that are to be repaired. We should have another update in another two hours or so. Wow...he's on bypass...

Pictures are Ethan with the anaesthesiology team right before the hand over and Nolan playing just two hours after surgery...

surgery 4

Nolan is out of recovery and doing well. He was really upset when he first woke up. The nurse gave him another shot of morphine and knocked him out. He has woken up again and he is a little loopy, but is watching cartoons and drinking apple juice in the Cardiovascular Surgery Waiting room. Haven't had another update on Ethan yet. Hope to hear soon...

Surgery3

Nurse just came to update us about Ethan. He is doing well...they are still running lines...so they have not started the actual surgery yet. He has been a "hard stick" when they start IV's so this was expected. They will give us in person updates every two hours and then updates by phone after 3. They are expecting the surgery to last that long since his veins are a little uncooperative. Looking forward to seeing him in the CVICU...we're just waiting and praying at this point trying to distract ourselves from the moment.

surgery 2

No word on Ethan yet...should be soon...Nolan is out of surgery and in recovery...Richard and Mom should be able to go in and see him soon. He will be in recovery for a couple of hours and on antibiotics and a soft diet for a couple of weeks. One down...

Surgery 1

Nolan and Ethan both in surgery. Should hear something on Ethan within the hour. Nolan is in surgery and his should be over within the half hour. Nervous but okay this morning. The hardest part was letting go of Ethan and watching them carry him behind doors. I know he's in the best of hands. Updates soon...

Wednesday

The picture on the bottom is of Ethan doing something that I did religiously that none of my other kiddos have done...suck his thumb...was so cute and he was sound asleep in his bouncy chair!
The picture on the top is of Ethan playing with the toy that Tammy brought him this afternoon. He actually took hold of it and put it in his mouth and chewed! We are progressing by leaps and bounds. He is in a size 2 diaper now and can use a regular flow nippie on his bottle. He is gaining better muscle control in his hands and actually rolled over last Friday night! I'm amazed!!!

Well...Nolan is going to have his ear surgery on Wednesday to get tubes put in and get his adenoids taken out. Ethan is going to have his heart surgery Wednesday to have his pulmonary veins reconfigured and a bidirectional Glenn procedure. Any and all donations of chocolate are welcome as are any cans of caffeine free coca cola classic....just kidding. I'm actually very relaxed today. Ethan has had his pre-op blood drawn, RSV nose wash done, EKG done, and chest x-ray done. They are going to wait to start the IV tomorrow as his veins are not cooperating today. The longer I am here the luckier I realize that I am. Ethan is the only Heterotaxy baby that I've seen here that is not on oxygen as well as every heart med and breathing med I've seen. I feel so blessed and humbled that Ethan is doing so well.

Please include friend of mine's baby in your prayers. Gavin was born last week with Heterotaxy Syndrome and is not doing well. He was supposed to have surgery this morning but was not doing well enough to have it. His body is not ridding itself of fluids as it is supposed to. He is now in the CVICU and his situation is looking fairly dire...Please pray for his family. His parents are Cody and Eron, and his grandma is Tammy. They are devastated that their baby might not make the week. I know the power of prayer and know that it is the only thing that can save him if it is Heavenly Father's will.

Well...that's all for now...I'm sure I will be updating this blog soon with more info...I can't believe that I'm going to have two babies in surgery on the same day!

Halloween Preview

It is an almost definite thing that Ethan will not be home for Halloween. So, we took some really good pictures of him in his costume today so that he will have pictures in his costume even if he gets his surgery and is in CVICU for Halloween. Aren't they precious...what a ferocious dragon...but please...try not to be too scared.

We had a really good day today. Mom and Dad got me out of the hospital for a while and Richard stayed with Ethan. I needed to get out so bad. 17 days in the hospital is way too much. Recharged and ready for another week or so...

AAAHHHHHHHRRRRRGGGGG!!!!!!

We got bumped at 3 am!!! An emergency came through that was ina worse situation than Ethan so that baby got our spot. While I am frustrated, I know that if I was the other momma I would want the baby that got bumped momma to stay positive. So, Richard is going to stay with Ethan for a few minutes this morning and catch a nap and I am going to leave the hospital for the first time (except for a 30 minute run to the grocery store a week ago) in 17 days. Thank you to everyone. We're back on standby...

Tomorrow is D-Day

Well...tomorrow is the day for Ethan's first open heart surgery. I met with Dr. Fraser this evening to go over the goals for the surgery. He will make a new connection between the pulmonary vein confluence that is bigger and will alleviate a lot of the worry of the common vein squirreling all over the place. They will also look and see (after they are in the heart) if they can perform a bidirectional glenn shunt. They will have to measure a lot of Ethan's anatomy after surgery in underway so they will have to stop circulation while he is on bypass a few times which ups the risk of complications during surgery, but it has to be done. We are praying that everything goes smoothly and that the doctor's hands remain calm. We pray that the knowledge of our surgical team be at the forfront of their minds that they can perform surgery to the best of their ability and experience. I pray that my baby doesn't suffer brain damage from the bypass and circulation stops. I just want this to be over. Thank you to all of you that have prayed for my baby and that continue to pray for him. He needs them now just as much as he needed them before birth..if not more. I'll try to keep up the blog during the day tomorrow. It will help with my sanity. For right now, I'm taking it one breath at a time.

Still waiting

We are still waiting for an opening in the surgery schedule. A transplant became available on Friday so that bumped everyone back a bit. We will be able to be in surgery at the earliest next Tuesday, but the doctors constantly tell us to not be surprised if we are bumped back later in the week or even the beginning of the next week. It's getting long but we are used to the idea of not going anywhere. We also decided that if he still has the IV in his head for Halloween that we are going to paint the IV cover grey and get a copy of the Jaws theme music to carry around when I get to take him for a walk in the halls during the day.

I got a mobile from the playroom today for his crib. Kind of made me sad. Around here, you aren't considered a "resident" until there is a hospital owned mobile hanging over your bed. He loves it though and it gives momma a break from holding him when he is fussy...he just looks and the mobile and starts smiling and cooing. You can't help but love the little turkey...just wish he didn't hav eto go through this. A mom I talked to today told me something that didn't make sense to me until I thought about it for a while. She said, "Heart kids carry the scar, but the moms feel all of the pain". While that is not true of the physical pain of open heart surgery, it is completely true of the inner pain that you feel when your child is going through this. I do feel blessed that he will have no memory of going through any of this. When he is a "big kid", he will have his scar, but the pain will be in my memory not his. I wouldn't have it any other way.

Cath...

Cath was cancelled at 11:30. Dr. Fraser thought it unneccesary and feels comfortable taking him into surgery asap without the cath. We don't have a surgery date yet. You will know as soon as we do!!!

Cath tomorrow

After the IV was put in and he had calmed down. He loves the swing, but he still looks a little worried

before the IV was put in...notice how happy he is...

Well...we are going to have the cath procedure tomorrow. There was a cancellation so Ethan is the second case of the day. He will be in the procedure between 10 and noon. He was placed on fortified milk this morning to "fatten him up" for surgery so he is allowed to eat that until 2 am, regular breastmilk until 4am, pedialyte until 6 am and then they will start IV fluids. His IV closed last night (of course) so they had to start another IV today. They tried both feet with no success so he has an IV in his head (his hands and arms did not present a good enough vein even to try to catch today). So we're starting Halloween early by dressing up like Frankenstein (notice my humor to keep that positive outlook going). They estimate that his cath will last 3-4 hours and that he will be in recovery for at least that long. So, long day tomorrow...

The cath will measure the pressures in his heart and give the surgeons a better idea of what types of surgery Ethan will be eligible for. We are still hopeful for a bi-ventricular repair, but we will have to wait and see. We have faith that whatever surgery we have it will be what is best for Ethan.

Nolan and Ethan updates

Nolan had his appointments with Ears, Nose, Throat (ENT) and audiology this morning. ENT recommends tubes in his ears and removal of his adnoids (spelling) so we will be doing that in two weeks on the 22nd. He is on antibiotics because his left ear is still infected. His audiology visit determined that he has hearing loss in his left ear most likely from the ear infection. They will do another hearing screen after his tubes have been in place for a few weeks...on Nov 10th.

In the meantime, this evening the got a urine sample from Ethan so they can check for infection pre-op. His IV is still flushing so I am happy...they don't have to stick him again as long as that is open. They will do a cath on him as I mentioned previously either Fri or early next week. We will have surgery most likely mid to late next week. I'm not ready for this. I don't think you can be ready for this. The urine sample caught me by surprise. I knew that they needed one but I didn't know it was coming down to this close.

I am tired of everything being up in the air. I hate this waiting game. I know that we are working around pre-op procedures and also surgery schedules, but I'm almost ready for this to just be over. I am relishing every minute I'm getting to spend with Ethan because I can't help but think that I won't get to snuggle with him like he likes for a while...He likes to be held chest to chest snuggled up on your shoulder. With a sternotomy, he will not like that for a while and might not again...it might irritate him too much. I just want a magic pill...

No one should have to go through this...especially a baby who has done nothing to cause such great amounts of heart disease...

The next step

The questions about surgery are as follows:

Where: Texas Children's
Who: Dr. Fraser
When: will be decided soon
What: most likely a Glenn procedure and a correction of the pulmonary veins
How: that's up to Heavenly Father and the surgeon!

All kidding aside, during rounds this morning they will be setting up a time to come in a do Ethan's blood work for surgery as well as scheduling his cath to determine his anatomy anomalies and his pressures within his heart. Surgery date to come soon!

Basically, his pulmonary veins form a sort of pouch then one common vein stems off and goes around his pulmonary artery that leads to his right lung, then it goes back down and into his heart. They are worried about restrictions within these vessels and it would be better if they just hooked up to the heart like normal, so that's what they are going to try to do. His anatomy is too complex to be able to do a full repair unless they see something different with the cath...so we will be looking at a Glenn. Basically, they take his superior vena cava and detach it from the heart and connect it to the pulmonary vein so that he gets straight blue blood to his lungs instead of a blue/red mix. I don't know if they have decided to disconnect his pulmonary vein from his heart or leave it as it has got a lot of blockages and stuff that could get nasty. I have a picture that Dr. Altman drew to explain his anatomy to me and as soon as I can get it scanned in I will.

More updates soon...we're coming down to it now...

Preliminary Results

The cardiology team met with me briefly today and although all of the results of the MRI are not back yet...meaning that they haven't gone over them yet...the preliminary findings are that the pulmonary vein conflusion enters the heart in the center of the heart after being somewhat restricted by the bronchus. They were also able to see the positioning of the pulmonary artery better and it looks like the artery is overylying the VSD and partly coming out of the left ventricle. Which means that we don't have DORV, we have complete transposition. This may or may not make his heart easier to repair. We will have to wait for the surgical conference on Monday. Dr. Altman is the floor cardiologist this weekend of which I am grateful. I feel so comfortable with her...we've worked with her since February and I can read her doctor speak better than anyone else's. I don't know what is going to happen next week. I am trying to prepare myself for anything.

We made it!

MRI is over and Ethan is back in his room with us resting comfortably. He was agitated when he came out of anesthesia but quickly went back to sleep...we are looking forward to a happier baby when he wakes up...although he will definitely be hungry! They got between 800 and 1000 pictures and are processing them now...initially it looks as if his pulmonary vein running between his bronchus (spelling...sorry) and another harder structure that I can't begin to remember the name of and in some positions the vein is being compressed and causing desaturations. We will know more tomorrow after the cardiology team looks at the images. We don't know if they will wan to do a surgery before he goes home or not...hopefully that question will be answered tomorrow...anyways...we are back in waiting game mode and are just grateful that Ethan's first experience of "being under" went well. Until tomorrow...

MRI

Just sitting here waiting for Ethan's MRI to be finished. I am updating the blog instead of sitting here twitching! It's not working really well, but at least I feel productive. I was able to carry Ethan downstairs and then be with him holding his little hand until the happy gas took over. He is wrapped in heated blankets so I'm left with a laptop computer and his blankie in the waiting room. I never in a million years dreamed that I would be where I am right now. I feel helpless because I am not in control of what is going on. This is the biggest trial of faith that I have ever been through because I not only have to rely on my faith in Heavenly Father but I also have to have faith that the doctors are doing their very best and that everything is working out for the good of everyone involved. Elise wa sso sweet last night. She has never once complained because I have been out of town. She and Craig have gone to school and Nolan has gone to stay with my mom or Jennifer during the day and not once have any of them complained. They know that I have to be with Ethan...and they know that they will see me on the weekends. But last night Elise asked if I would be home by Saturday and I honestly answered that I didn't know. Then she asked if I would be home by December because they are having a mommy/daughter activity with her group and she wanted me to be there. She was so innocent and sincere. She really wants me to be there and was asking so she could prepare herself if I couldn't. I am so looking forward to spending time with her and her brothers. I am in my own world here at the hospital and have to keep reminding myself that they are still doing their normal things...

baby pincushion

Ethan is a little baby pincushion this morning after yesterday. They have tried to start an IV 10 times since yesterday afternoon. They even had the NICU team come up and try. His veins are not cooperating. So, he's on clear liquids until noon and then he will be ready to go downstairs to prep for his MRI. They are going to give him "knock out gas" to get him under so that they can start the IV and then switch him to IV anasthesia. I'll continue the updates throughout the day. I'm really nervous but ready to have this over so that we will know what the next step in Ethan's journey is.