We are two weeks into home life and we are already seeing Lucy returning to the happy baby she was prior to being admitted to the hospital in June. After a couple days at home, our nurse suggested we put her on Tylenol regularly to alleviate her pain and any discomfort she may be feeling. I have to say once we started that we saw a nice change. We kept her on regular doses for three days and then changed to a dose just before bedtime for three more days. It just amazes me that children can be on Tylenol for pain management, especially after open heart surgery. I mean I was on stronger pain medication for three weeks following the c-section, I kind of feel like a wimp.
On July 22nd we had are post-op follow up appointment. You can tell Lucy has not forgotten what happened as any time the tech or nurse practitioner tried to do anything she went nuts. We couldn't even get a good blood pressure. Then I would get her calm and they would try to listen to her with a stethoscope, as soon as it touched her....crazy. The steri-strips came off and her scar looks great. It's still healing so we have to continue to watch for infection and her sternum is still fragile so we are off tummy time for eight weeks. The only change we made during the appointment was to decrease her lasix (the medication that helps her get rid of fluids). We went from three times a day down to two times a day and just had to watch for puffiness. Sure enough we moved to quickly, by Thursday morning her eyes were puffy. We called the nurse back to let her know and we went back up to three times a day. With a two bouts of throw up, Thursday night and Friday morning our home nurse said we needed to see the doctor. So off we were to the ER.
Upon arrival, the ER doctor came to take a look and asked about what was happening. They ordered some labs and an x-ray. The nurses came in to put an IV in and I must say, I think I'm getting stronger. I used to have to leave the room when I knew a procedure was going to make Lucy get hysterical, but this time I stayed in the room, held her hand and talked to her until the needle was in, the blood was drawn and IV was securely taped. And I didn't even cry, I'm serious, that's a miracle. Ask any of the nurses in the PSHU, I can break down in tears at a mere question sometimes. Lucy cried her eyes out, but once they were done.....back to normal. We spent the entire day there and around 3:30 our cardiologist came in to assess her. Everything looked okay and her oxygen saturation was good so we were discharged. Thank gosh!
This past week has been more spit ups, throwing up, calls to our home nurse and to the doctor. The worst was Wednesday as Lucy threw up three times. However after she seems great, all smiles and cooing. After the third time, we switched her over to Pedialite for a few hours and back then back to breast milk. Who knew how stressful spit ups and throw could be. We are hoping to get to the bottom of this at our cardiology appointment Thursday. And we really hope there is not a need for her to be admitted. The appointment should entail an echo, x-ray, EKG and possibly an oxygen test to get one more tube off her face.
Thursday, July 31, 2014
Friday, July 18, 2014
Home already
Seriously, I don't even know where to start......I cannot believe we are home already but we are so happy. I have read online and heard from a lot of people that the Glenn is the easiest of the surgeries. Average recovery is around six days. Based on our history I laughed at that. Plus when I spoke to Dr. Ilbawi's nurse while signing consent she said recovery for a 'sick' baby was about fourteen days. Lucy was considered 'sick' because she was admitted early due to the decreasing heart function. We were hoping to be out of the hospital by the end of July.
The three days following surgery were pretty much a repeat of the last. First weening heart medication, then removing chest tubes and last pain and sedation. This time however it went much quicker. We were most worried about chylothorax. We did not want to go on formula again. Thursday morning her chest tube was showing a milky drainage and we were so disappointed. But then during rounds the nurse practitioner said it didn't look like chyle but more like lipids. Sure enough when they checked the line in her chest it was almost all the way out so the lipids were leaking into her chest and out through the tube. When they pulled the line the drainage went back to red. NO CHYLOTHORAX!!!! Due to the IV line being pulled they ended up stopping some of her medications. The problem with no line is they have prick her for any draw blood. We didn't want that so the surgeons came in to replace it. Unfortunately because of Lucy's size it is very hard to get a arterial line in place. The surgeon tried a bunch of times with no luck. They finally decided to have the doctor from the cath lab come up and place the line using ultrasound. He was successful but the line was pretty much in her face (I'll post a picture later).
Friday morning they stopped her pain medication. Three days after open heart surgery she is on Tylenol as needed. These heart warriors are amazing! Saturday morning they pulled her chest tubes and after stopped her sedation medication. Officially we were off all IV medications. We were able to hold her again. We don't like holding her with chest tubes so we always wait until they are removed.
Sunday Mike and I split time so someone would be at the hospital all day with her. We just hung out and she was able to have a couple visitors. Then we heard that they were planning to move her to the floor later that night, five days after surgery. A bed on floor two wasn't available until Monday morning, so we walked down there around nine in the morning. During rounds later that day the doctors were talking about sending us home the next day. Yippee, but I wasn't going to believe it until the discharge papers were submitted. Sure enough Tuesday rolled around and they were finalizing medications for home. One week after heart surgery we were headed home. A couple things are different between this trip home and last time. Her medications are more frequent (two are given three times a day and two others twice a day). We are also giving her Tylenol for pain on a regular basis. Her incision is not yet healed so we have to be careful picking her up and bathing her.
Tuesday afternoon and night was a little rough. After being poked she doesn't trust that a diaper change is just that so she goes a little crazy for those. She is still getting used to being at home so she is crying a little more. The loudness of her cry has increased, which is awesome when holding her up on your shoulder. Each day has gotten a little better and we are hoping by next week she will be back to her old smiling self.
We have yet to resume bottle trials but that will come in time. Her newest thing is reaching for things and bringing them to her mouth. We have heard that the Glenn is a game changer and we are hoping this is true for Lucy as well. Only time will tell.
Next week we have a follow up with the surgical team, then we are back to our cardiologist following. She was sent home on oxygen so we will be looking to remove that and get one more thing off her face and make her a little easier to take places!
The three days following surgery were pretty much a repeat of the last. First weening heart medication, then removing chest tubes and last pain and sedation. This time however it went much quicker. We were most worried about chylothorax. We did not want to go on formula again. Thursday morning her chest tube was showing a milky drainage and we were so disappointed. But then during rounds the nurse practitioner said it didn't look like chyle but more like lipids. Sure enough when they checked the line in her chest it was almost all the way out so the lipids were leaking into her chest and out through the tube. When they pulled the line the drainage went back to red. NO CHYLOTHORAX!!!! Due to the IV line being pulled they ended up stopping some of her medications. The problem with no line is they have prick her for any draw blood. We didn't want that so the surgeons came in to replace it. Unfortunately because of Lucy's size it is very hard to get a arterial line in place. The surgeon tried a bunch of times with no luck. They finally decided to have the doctor from the cath lab come up and place the line using ultrasound. He was successful but the line was pretty much in her face (I'll post a picture later).
Friday morning they stopped her pain medication. Three days after open heart surgery she is on Tylenol as needed. These heart warriors are amazing! Saturday morning they pulled her chest tubes and after stopped her sedation medication. Officially we were off all IV medications. We were able to hold her again. We don't like holding her with chest tubes so we always wait until they are removed.
Sunday Mike and I split time so someone would be at the hospital all day with her. We just hung out and she was able to have a couple visitors. Then we heard that they were planning to move her to the floor later that night, five days after surgery. A bed on floor two wasn't available until Monday morning, so we walked down there around nine in the morning. During rounds later that day the doctors were talking about sending us home the next day. Yippee, but I wasn't going to believe it until the discharge papers were submitted. Sure enough Tuesday rolled around and they were finalizing medications for home. One week after heart surgery we were headed home. A couple things are different between this trip home and last time. Her medications are more frequent (two are given three times a day and two others twice a day). We are also giving her Tylenol for pain on a regular basis. Her incision is not yet healed so we have to be careful picking her up and bathing her.
Tuesday afternoon and night was a little rough. After being poked she doesn't trust that a diaper change is just that so she goes a little crazy for those. She is still getting used to being at home so she is crying a little more. The loudness of her cry has increased, which is awesome when holding her up on your shoulder. Each day has gotten a little better and we are hoping by next week she will be back to her old smiling self.
We have yet to resume bottle trials but that will come in time. Her newest thing is reaching for things and bringing them to her mouth. We have heard that the Glenn is a game changer and we are hoping this is true for Lucy as well. Only time will tell.
Next week we have a follow up with the surgical team, then we are back to our cardiologist following. She was sent home on oxygen so we will be looking to remove that and get one more thing off her face and make her a little easier to take places!
Friday, July 11, 2014
Thursday, July 10, 2014
from my perspective
I know I'm late with this update but I'm working on recovering so we can get out of this place. Plus I've been sleeping a lot, so there is little time for me to sneak on the blog. Anyway, like last time we'll follow my day through surgery....here goes
Before we start I would like to thank you all for your prayers and thoughts. It is great to have so many people on my team. I love you!
5:00 am I'm up and smiling ready to play for a little before my big adventure.
Luckily my nurse has some free time.
6:00 am I'm already back asleep, it takes a lot of my energy to be this cute.
6:10 am Mom and Dad arrive and talk to the nurse. She tells them the surgical
team will come anytime after seven. They are over my crib watching
me sleep, creepy! Parents can be so weird.
6:45 am I know they want to cuddle a little before I hit the stage so I wake up.
I get to spend time in both their arms (secretly I love it there, but
don't tell them I'm trying to be a big girl)
7:30 am The anesthesiologist comes to the room. We've met him before because
he did my Norwood. Since I barely have any bells and whistles
(three to be exact) to hook up to the mobile monitor hair and make-up
goes quick. And only two people are needed to walk
me to the OR.
7:45 am We get to the stage, Mom and Dad give me a bunch of kisses and
we say 'see ya later' I am ready for this, I grew big and strong
while I was at home.
8:00 am Psych! We are in a holding pattern due to an emergency.
I start crying cause I hate waiting.
8:30 am They give me some sleepy medication through my oxygen cannula
so I will stay still and not cry for awhile. Once I'm out they put
in my breathing tube, a new IV, my arterial line and scrub my chest.
9:15 am We have officially started. Dr. Ilbawi makes the incision in my chest.
First thing he does is clear out old scar tissue. We need to make
sure my zipper is as pretty as can be!
10:00 am I'm on bypass now and they have begun. Like my mom told you
in the last post, they will take the vein that carries the blood from
my upper body to my heart and re-route directly to my lungs.
Usually they take down the Norwood, but since my pulmonary
arteries are on the small side they left the sano shunt in to help. They
put a band around it to restrict blood flow. This will come out when
I have my last surgery.
12:00 pm Surgery is complete. They are closing my chest. This time they don't
need to leave my sternum open so I won't have to get it closed in
a couple of days. Once they close me up, they will extubate. If I
breathe on my own okay they will leave that stupid tube out.
Other than my raspy voice I'll never know it was in.
1:30 pm I am back in my room with Mom and Dad. I came out with way
more bells and whistle...I kinda forgot how much this stinks!
I'm crying a little and Dad says this cry is worse than my crazy
red-in-the-face cry. Mom is emotional, every time I cry she gets
tears. Should come in handy when I'm older!
2:30 pm While the nurses get me situated with everything the p's
grab some much needed lunch. They get to see Germany
score 5 goals in 20 about minutes, that has to be some kind of
World Cup record.
4:00 pm I'm still making noises and moving around quite a bit, so
we up my pain medicine a little. Within a half hour I am out.
Mom and Dad leave to get some much needed rest. I'll
most likely sleep through the night. I need it if I'm going to recover
quickly. Shouldn't be hard to beat my last recovery of two months!
As of Wednesday, I am still really puffy (really hoping there are no pictures) and have had very little urine output. They are starting me on a lasix drip (medication to make me pee). They say sometimes when you are on this medication for a while it takes a little more to work. I know a secret....my catheter is clogged. Once they take that out, I'll pee like a champ! They started feeds too. Thank gosh because I'm starving. We are really hoping I don't have chylothorax again so I can keep eating breast milk. I've become accustomed to a certain level of food and that formula is the pits! Stayed tuned for my progress. My mom will update you in a couple of days
Before we start I would like to thank you all for your prayers and thoughts. It is great to have so many people on my team. I love you!
5:00 am I'm up and smiling ready to play for a little before my big adventure.
Luckily my nurse has some free time.
6:00 am I'm already back asleep, it takes a lot of my energy to be this cute.
6:10 am Mom and Dad arrive and talk to the nurse. She tells them the surgical
team will come anytime after seven. They are over my crib watching
me sleep, creepy! Parents can be so weird.
6:45 am I know they want to cuddle a little before I hit the stage so I wake up.
I get to spend time in both their arms (secretly I love it there, but
don't tell them I'm trying to be a big girl)
7:30 am The anesthesiologist comes to the room. We've met him before because
he did my Norwood. Since I barely have any bells and whistles
(three to be exact) to hook up to the mobile monitor hair and make-up
goes quick. And only two people are needed to walk
me to the OR.
7:45 am We get to the stage, Mom and Dad give me a bunch of kisses and
we say 'see ya later' I am ready for this, I grew big and strong
while I was at home.
8:00 am Psych! We are in a holding pattern due to an emergency.
I start crying cause I hate waiting.
8:30 am They give me some sleepy medication through my oxygen cannula
so I will stay still and not cry for awhile. Once I'm out they put
in my breathing tube, a new IV, my arterial line and scrub my chest.
9:15 am We have officially started. Dr. Ilbawi makes the incision in my chest.
First thing he does is clear out old scar tissue. We need to make
sure my zipper is as pretty as can be!
10:00 am I'm on bypass now and they have begun. Like my mom told you
in the last post, they will take the vein that carries the blood from
my upper body to my heart and re-route directly to my lungs.
Usually they take down the Norwood, but since my pulmonary
arteries are on the small side they left the sano shunt in to help. They
put a band around it to restrict blood flow. This will come out when
I have my last surgery.
12:00 pm Surgery is complete. They are closing my chest. This time they don't
need to leave my sternum open so I won't have to get it closed in
a couple of days. Once they close me up, they will extubate. If I
breathe on my own okay they will leave that stupid tube out.
Other than my raspy voice I'll never know it was in.
1:30 pm I am back in my room with Mom and Dad. I came out with way
more bells and whistle...I kinda forgot how much this stinks!
I'm crying a little and Dad says this cry is worse than my crazy
red-in-the-face cry. Mom is emotional, every time I cry she gets
tears. Should come in handy when I'm older!
2:30 pm While the nurses get me situated with everything the p's
grab some much needed lunch. They get to see Germany
score 5 goals in 20 about minutes, that has to be some kind of
World Cup record.
4:00 pm I'm still making noises and moving around quite a bit, so
we up my pain medicine a little. Within a half hour I am out.
Mom and Dad leave to get some much needed rest. I'll
most likely sleep through the night. I need it if I'm going to recover
quickly. Shouldn't be hard to beat my last recovery of two months!
As of Wednesday, I am still really puffy (really hoping there are no pictures) and have had very little urine output. They are starting me on a lasix drip (medication to make me pee). They say sometimes when you are on this medication for a while it takes a little more to work. I know a secret....my catheter is clogged. Once they take that out, I'll pee like a champ! They started feeds too. Thank gosh because I'm starving. We are really hoping I don't have chylothorax again so I can keep eating breast milk. I've become accustomed to a certain level of food and that formula is the pits! Stayed tuned for my progress. My mom will update you in a couple of days
Monday, July 7, 2014
Stage II: Bi-directional Glenn
Well we have a date for our next surgery. It's Wednesday! At the cath conference last week the entire team decided it was best to keep Lucy in the hospital and schedule her next surgery. We are certainly glad that they decided to do the surgery as we have heard HLHS kids do so much better after the Glenn operation. However, we are not looking forward to the recovery process. We know it is small steps but it sometimes feels like we just got finished recovering. The recovery process for the second surgery is supposed to be much quicker. The two reasons for that are the doctors do not have to stop her heart for surgery and she is on the bypass machine for a much shorter amount of time. Average recovery time is about six days. We know Lucy is anything but average, so we are expecting a slightly longer recovery time.
So here is a recap of the first surgery and what we are in store for on Wednesday.
Norwood Procedure: This procedure is performed shortly after birth. It converts the right ventricle into the main ventricle pumping blood to both the lungs and the body. This surgery usually is done within the first 2 weeks of a baby’s life. Surgeons create a “new” aorta and connect it to the right ventricle. They also place a tube (Sano Shunt) from the right ventricle to the vessels supplying the lungs (pulmonary arteries). Thus, the right ventricle can pump blood to both the lungs and the rest of the body. After this procedure, an infant’s skin still might look bluish because oxygen-rich and oxygen-poor blood still mix in the heart.
Bi-directional Glenn Operation: This operation usually is performed about three to six months after the Norwood to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.
The surgical team also likes to extubate before leaving the operating room so they can see how the pressure to the lungs is. This is very exciting for us because we hate seeing her with that breathing tube, especially now that she has started 'talking' to us. Lastly we were told that Lucy can look a little blue from the chest up after surgery due to venous blood taking longer to drain.
Lucy has been a happy baby since we have been back, we are hoping it's not because she likes the hospital better than home! We are chalking it up to the medications that help her heart. As of Sunday morning her IV fell out and they decided not to stick her again. They are just going to monitor her vitals off the medication, hoping she will remain stable until Wednesday.
I may be biased but she is so stinking cute!
Prayers for God's hands on all aspects of the surgery Wednesday would be greatly appreciated.
So here is a recap of the first surgery and what we are in store for on Wednesday.
Norwood Procedure: This procedure is performed shortly after birth. It converts the right ventricle into the main ventricle pumping blood to both the lungs and the body. This surgery usually is done within the first 2 weeks of a baby’s life. Surgeons create a “new” aorta and connect it to the right ventricle. They also place a tube (Sano Shunt) from the right ventricle to the vessels supplying the lungs (pulmonary arteries). Thus, the right ventricle can pump blood to both the lungs and the rest of the body. After this procedure, an infant’s skin still might look bluish because oxygen-rich and oxygen-poor blood still mix in the heart.
Bi-directional Glenn Operation: This operation usually is performed about three to six months after the Norwood to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.
The surgical team also likes to extubate before leaving the operating room so they can see how the pressure to the lungs is. This is very exciting for us because we hate seeing her with that breathing tube, especially now that she has started 'talking' to us. Lastly we were told that Lucy can look a little blue from the chest up after surgery due to venous blood taking longer to drain.
Lucy has been a happy baby since we have been back, we are hoping it's not because she likes the hospital better than home! We are chalking it up to the medications that help her heart. As of Sunday morning her IV fell out and they decided not to stick her again. They are just going to monitor her vitals off the medication, hoping she will remain stable until Wednesday.
Prayers for God's hands on all aspects of the surgery Wednesday would be greatly appreciated.
Wednesday, July 2, 2014
Not really an update
I have no idea how we did it for three months. We have been back at the hospital for four days and we are itching to get Lucy back home. Over the course of four days we have had a lot of nurses in to visit Lucy. So many of them could not wait to cuddle with her. What a blessing to have such an amazing group of nurses that can be with Lucy when we are not able. Everyone keeps saying how big and different she looks. This is great to hear because leaving the hospital back in May we were told that Norwood patients have a hard time gaining weight.
Last day in the PSHU - 5/7/14
First day back to the PSHU 6/27/14
The weekend was pretty uneventful. Just monitoring her stats and resting. Monday morning she had a bit of a fussy episode and they put her on clonidine. This is just to keep her relaxed while she waited for her heart cath. Tuesday they took her for the heart cath around 11 o'clock. The procedure took a little longer than normal because they were trying to place the catheter in her groin. Unfortunately she didn't have a good vessel and they ended up going through her neck. After they were done, Dr. Javois came out to talk to us. What they are looking at is narrowing or blockages in blood vessels, measuring pressure and oxygen levels and pumping function. There was a little narrowing in her aorta and the shunt, her pressures were a little high and the pumping function or squeeze of the heart (the reason Lucy was admitted) was mildly decreased. He said the pumping function looked better than what they had seen on the echo. It is possible that the Milrinone has helped with that. The narrowing and pressures were not too concerning. They were also able to extubate before she went back up to the PSHU. Dr. Van Burgen stopped by after we were back in the room to give us his thoughts and answer any questions. He talked about her pressure being slightly elevated but it didn't really give us an explanation about the decreasing function. Many kids get sent home on Digoxin after the Norwood, which helps the squeezing function. This medicine also lowers heart rate, and since Lucy's was low they did not send her home on it. We asked about the next surgery being scheduled and Dr. Vanburgen felt that it would not fix this issue and would prefer to wait. They would like to continue to monitor her for a couple of days and will discuss her case tonight during Cath Conference. We will hopefully have more answers by Thursday and will pass along the news.
Lucy thinks this stay in the hospital is much too long!
We ask specifically for prayers about Lucy's heart function. We have read that the heart can continue to decline through this process and could eventually lead to the need for a heart transplant. We are hoping that this journey does not lead us to path.
Last day in the PSHU - 5/7/14
The weekend was pretty uneventful. Just monitoring her stats and resting. Monday morning she had a bit of a fussy episode and they put her on clonidine. This is just to keep her relaxed while she waited for her heart cath. Tuesday they took her for the heart cath around 11 o'clock. The procedure took a little longer than normal because they were trying to place the catheter in her groin. Unfortunately she didn't have a good vessel and they ended up going through her neck. After they were done, Dr. Javois came out to talk to us. What they are looking at is narrowing or blockages in blood vessels, measuring pressure and oxygen levels and pumping function. There was a little narrowing in her aorta and the shunt, her pressures were a little high and the pumping function or squeeze of the heart (the reason Lucy was admitted) was mildly decreased. He said the pumping function looked better than what they had seen on the echo. It is possible that the Milrinone has helped with that. The narrowing and pressures were not too concerning. They were also able to extubate before she went back up to the PSHU. Dr. Van Burgen stopped by after we were back in the room to give us his thoughts and answer any questions. He talked about her pressure being slightly elevated but it didn't really give us an explanation about the decreasing function. Many kids get sent home on Digoxin after the Norwood, which helps the squeezing function. This medicine also lowers heart rate, and since Lucy's was low they did not send her home on it. We asked about the next surgery being scheduled and Dr. Vanburgen felt that it would not fix this issue and would prefer to wait. They would like to continue to monitor her for a couple of days and will discuss her case tonight during Cath Conference. We will hopefully have more answers by Thursday and will pass along the news.
Lucy thinks this stay in the hospital is much too long!
We ask specifically for prayers about Lucy's heart function. We have read that the heart can continue to decline through this process and could eventually lead to the need for a heart transplant. We are hoping that this journey does not lead us to path.
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