Wednesday, February 29, 2012
The next day: part 3
Gary and I went to the cafe to grab some lunch and when we returned Tucker was off the ventilator however now he is struggling with pain and grasping for air. He has just received a nebulizer treatment and we are waiting to see if he can have some clear liquids around 5 pm. hopefully all will continue to go well and we can leave the CICU and move to 8 east tomorrow. The only issue is when he moves we will lose our onsite housing, but we would also hate to keep it from a family in need. We are now heading off to a parent support group meeting, more to come later.
The next day - part 2
Tucker is again sedated a bit because he keeps trying to pull out his breathing tube. The morphine does not seem to do anything, so they are giving him demerol. Tucker is doing well enough to have his - lines taken out. They have also started giving him steroids to reduce the swelling around the breathing tube and it sounds like the current plan is to pull the breathing tube around this afternoon. He is still on morphine to control his pain so he is not kicking and trailing his arms as much as yesterday, so we believe that he is quite comfortable and able to maintain his pain.
Our apologies for not being able to return any of the text messages and calls that we have been receiving for updates. We are not allowed to use our phones on the floor. And we have also been having issues with being kicked off of the hospitals server. Since they do procedures by the bedside in the CICU there are always folks in the room to do "something".
More to come...
Our apologies for not being able to return any of the text messages and calls that we have been receiving for updates. We are not allowed to use our phones on the floor. And we have also been having issues with being kicked off of the hospitals server. Since they do procedures by the bedside in the CICU there are always folks in the room to do "something".
More to come...
Tuesday, February 28, 2012
The next day: part 1
Gary and I are emotionally and physically drained. We got a wonderful visit from AnnMarie Baldwin, our NP that would call us weekly. We adore her and will miss her so much. I asked for special treatment on 8 east and asked for a great room and all of my favorite RN's. I wouldn't be surprised if we got it too, she loves Tucker. Since we dropped off a bunch of donations, which they couldn't believe the quantity btw, we got a very special visit from child life and received Tucker's favorite mobile.
We got away for dinner and went out to Boloco. Love that place! Treated myself to Starbucks and grabbed our bags from the car. (Michelle finally got to try the Tiramisu cake pop from Starbucks-yum!)
Tucker is still struggling with waking up and pain, he is attempting to breathe on his own but not consistently enough to have the tube removed. we are hoping to be taking it out in the early am.
We got away for dinner and went out to Boloco. Love that place! Treated myself to Starbucks and grabbed our bags from the car. (Michelle finally got to try the Tiramisu cake pop from Starbucks-yum!)
Tucker is still struggling with waking up and pain, he is attempting to breathe on his own but not consistently enough to have the tube removed. we are hoping to be taking it out in the early am.
The big day, part 4
Gary and I got to go see our boy in the CICU. He has tons of tubes in, but he looks really good. Our version of "good" is different than others. We are so very grateful that we got to tour the unit so we knew what to expect before this. I will not be posting photos on here until after we are out of the ICU. They are way graphic to handle.
It looks like they did close his chest, but he has pacing wires attached to the heart and a tube coming out of his chest draining the excess blood from surgery. He is off the heart and lung machine but he is still not currently breathing on his own. They are going to try around 9pm tonight to take him off the ventilator. Fingers crossed. They keep giving him meds to calm down because he keeps waking up and struggling to pull things out. They had to put arm cuffs on his arms and a banded blanket over him to keep him down, he is quite a little fighter! :o)
We finally got approved for our housing. We are staying in the hospital.
More to come...
It looks like they did close his chest, but he has pacing wires attached to the heart and a tube coming out of his chest draining the excess blood from surgery. He is off the heart and lung machine but he is still not currently breathing on his own. They are going to try around 9pm tonight to take him off the ventilator. Fingers crossed. They keep giving him meds to calm down because he keeps waking up and struggling to pull things out. They had to put arm cuffs on his arms and a banded blanket over him to keep him down, he is quite a little fighter! :o)
We finally got approved for our housing. We are staying in the hospital.
More to come...
The big day: part 3
Donnie came and took us to lunch. My aunt bought Gary and I a gift certificate to a place that we saw on the phantom gourmet. The Squealing Pig.
During our lunch they called and updated us when they put him on ECMO and when they took him off. (ECMO, which stands for Extracorporeal Membrane Oxygenation, is an advanced technology that functions as a replacement for a critically ill child's heart and lungs. It’s used to support a child who is awaiting surgery, or to give a child's vital organs time to recover from heart surgery or disease.). They asked us to come back because the surgeon will talk to us when he is finished. We hurried back to Children's.
Dr Emani came and got us, he told us that everything went good, and escorted us into a private room. He told us that he cut Tucker's two stints and performed the Glenn and when they were in there they noticed that the flow from the atrial septum was pretty minimal, so they had to stop the heart to go inside and increase the bloodflow. This was an unexpected step but felt that it was necessary to repair it while he was already in there. We are waiting in the cardiac ICU now, they are performing a few tests, EKG, ECHO, and am x-ray then he will come to the floor and we can see him.
During our lunch they called and updated us when they put him on ECMO and when they took him off. (ECMO, which stands for Extracorporeal Membrane Oxygenation, is an advanced technology that functions as a replacement for a critically ill child's heart and lungs. It’s used to support a child who is awaiting surgery, or to give a child's vital organs time to recover from heart surgery or disease.). They asked us to come back because the surgeon will talk to us when he is finished. We hurried back to Children's.
Dr Emani came and got us, he told us that everything went good, and escorted us into a private room. He told us that he cut Tucker's two stints and performed the Glenn and when they were in there they noticed that the flow from the atrial septum was pretty minimal, so they had to stop the heart to go inside and increase the bloodflow. This was an unexpected step but felt that it was necessary to repair it while he was already in there. We are waiting in the cardiac ICU now, they are performing a few tests, EKG, ECHO, and am x-ray then he will come to the floor and we can see him.
The Big Day - Part 2
We are still trying to keep ourselves busy, so we made the trip to the car to grab the blanket and hat donations from our non-profit "Warming Hearts" for delivery to 8 west on the cardiac floor. At about 9:45 we got our first update that Tucker has all of his lines in and was under full sedation and they where about to make the first incision.
Then we made lunch plans to go to "The Squealing Pig" with Donnie to take our mind off of things.
We brought all of our stuff back to the NP office on the floor. Since we were part of the home monitoring program we brought back our scale and daily log book and now Tucker will Graduate to the surgical program NP program. This is so sad because I have really developed a relationship with our home NP Ann Marie Baldwin. Glad to be rid of that scale and daily checks of all sorts...but bittersweet to say goodbye to AnnMarie. :o(
Then we went to meet with Lauren, 8 east's cardiac child life specialist. She was thrilled to see us and our enormous box of donations. It really warmed my heart because there was a little girl sitting in the playroom. Please know how much it means to everyone on the floor that these were donated. They were speechless when they saw some of the numbers. We donated: 201 hats, 38 blankets and 1 bib that is a reminder not to pick the baby up under their arms. Love this idea and I will pursue making these going forward.
More to come.
Then we made lunch plans to go to "The Squealing Pig" with Donnie to take our mind off of things.
We brought all of our stuff back to the NP office on the floor. Since we were part of the home monitoring program we brought back our scale and daily log book and now Tucker will Graduate to the surgical program NP program. This is so sad because I have really developed a relationship with our home NP Ann Marie Baldwin. Glad to be rid of that scale and daily checks of all sorts...but bittersweet to say goodbye to AnnMarie. :o(
Then we went to meet with Lauren, 8 east's cardiac child life specialist. She was thrilled to see us and our enormous box of donations. It really warmed my heart because there was a little girl sitting in the playroom. Please know how much it means to everyone on the floor that these were donated. They were speechless when they saw some of the numbers. We donated: 201 hats, 38 blankets and 1 bib that is a reminder not to pick the baby up under their arms. Love this idea and I will pursue making these going forward.
More to come.
The big day: Part 1
Gary and I woke up around 4:15am to bolus the last of Tucker's clear liquids. We showered finished packing, gave Spencer plenty of extra kisses. (He woke up early to say goodbye to us before we left.). We drove and parked at Children's. We checked in at admitting and of course since he is now starving, he started to scream. We were called in for vitals and walked up by 2 nurses that are conducting study called thermoregulation head wrap on baby's heads to warm them after surgery. The device is made of Mylar like marathon runners use. It is not yet approved yet, but it can't hurt so we sign up. We enter the OR area and there are bunches of beds waiting for little kids it's just so sad. We get placed into the last room next to the OR doors. This is very important, if you are ever in my situation with your child, please ask them to move your room before you get comfortable. We had to witness countless kids crying and being taken away from their parents. It was awful! Then you could hear the parents hysterical through the curtains. Ugh! Just awful!
Anesthesia came and checked in with us, Tucker was given a red colored drug through his tube to make him relax a little bit. They went over the plan and made sure that we were all on the same page. We kissed him on his forehead, told them to take good care of him and he was wisked away screaming too. Which is heartbreaking to hear down those empty OR rooms. We were walked out to the surgical RN liaison and asked our contact information. (Gary and I have chosen to not wait in the surgical wait room, as a gift to the other family's, we will go stir crazy there.) They told us that they will call us when they start, when he is put on the heart and lung machine, when he is taken off, when they finish, and again when he is moved out of the OR.
Then we checked in at family affairs for housing for tonight. They have immediate housing for the cardiac ICU patients. They are 85 percent sure that they will have a room available. If not we will have other options and one parent can sleep by his bedside. So our car is packed, we will deal with our sleeping arraignments later. We have a fantastic breakfast at Au Bon Pan, realize that I left our gift card at home, so mad! Only because I purchased one just for this visit. Ugh!
Then we went to the car and got the warming hearts hat and blanket donations and the scale from the car and headed to the 8th floor.
More to come...
Anesthesia came and checked in with us, Tucker was given a red colored drug through his tube to make him relax a little bit. They went over the plan and made sure that we were all on the same page. We kissed him on his forehead, told them to take good care of him and he was wisked away screaming too. Which is heartbreaking to hear down those empty OR rooms. We were walked out to the surgical RN liaison and asked our contact information. (Gary and I have chosen to not wait in the surgical wait room, as a gift to the other family's, we will go stir crazy there.) They told us that they will call us when they start, when he is put on the heart and lung machine, when he is taken off, when they finish, and again when he is moved out of the OR.
Then we checked in at family affairs for housing for tonight. They have immediate housing for the cardiac ICU patients. They are 85 percent sure that they will have a room available. If not we will have other options and one parent can sleep by his bedside. So our car is packed, we will deal with our sleeping arraignments later. We have a fantastic breakfast at Au Bon Pan, realize that I left our gift card at home, so mad! Only because I purchased one just for this visit. Ugh!
Then we went to the car and got the warming hearts hat and blanket donations and the scale from the car and headed to the 8th floor.
More to come...
Monday, February 27, 2012
Tuckers Glenn Pre-Op
Our day started at 4:20am so we would have time to shower and pack Tucker's day bag. We set out Spencer's clothes and gave him a kiss and got out of the house about 6:00 am.
7:00 am - arrived at Children's and off to patient check-in.
8:00 am - off to radiology for Tucker's X-Ray.
8:30 am - met with the anesthesiologist.
9:30 am- Echocardiogram and vitals "oxygenation and heart-rate" Tucker has been screaming the last 30 minutes.
10:00 am - off for blood-work, Tucker is still really fussy. Can't wait until they try to get a vein. We asked for Mrs. needle again (AKA Nina). She is amazing, got him on her second try.
11:00 am - Quick break for lunch.
12:00 noon - Met Dr.Porras in the hall on our way back. Tucker is sleeping so we are on our way to meet with the nurse practitioner first to go over how to prep his chest for tomorrows surgery.
1:00 pm - We just met with Dr.Porras to discuss Tuckers progress, and make sure everything still looks good to have surgery tomorrow.
2:15 pm - Met with Dr.Amani who will be Tucker's surgeon for his Glenn procedure tomorrow.
7:00 am - arrived at Children's and off to patient check-in.
8:00 am - off to radiology for Tucker's X-Ray.
8:30 am - met with the anesthesiologist.
9:30 am- Echocardiogram and vitals "oxygenation and heart-rate" Tucker has been screaming the last 30 minutes.
10:00 am - off for blood-work, Tucker is still really fussy. Can't wait until they try to get a vein. We asked for Mrs. needle again (AKA Nina). She is amazing, got him on her second try.
11:00 am - Quick break for lunch.
12:00 noon - Met Dr.Porras in the hall on our way back. Tucker is sleeping so we are on our way to meet with the nurse practitioner first to go over how to prep his chest for tomorrows surgery.
1:00 pm - We just met with Dr.Porras to discuss Tuckers progress, and make sure everything still looks good to have surgery tomorrow.
2:15 pm - Met with Dr.Amani who will be Tucker's surgeon for his Glenn procedure tomorrow.
Saturday, February 25, 2012
Homeowners.
Gary and I are now officially homeowners. I imagine a future with my boys chasing each other around the house and up and down the stairs. The home more than doubles our current living space, but is an older house in need of some TLC. So we had only this weekend to get some stuff around the house done before Tuckers pre-op on Monday and his Glenn procedure on Tuesday. He will be in the cardiac ICU for about 3 days the we go back to the cardiac floor where it seem like we have a second family.
All of our friends and family really came through for us this weekend. All rooms needed to be cleaned and a few rooms painted. I would never have known the the upstairs toilet, sink and tub are white not beige. My fabulous coworker Marianne spent more than eight hours scrubbing our new bathroom and you can now see your reflection in it. My father, Rick and Gary built about 600 square feet of shelves for storage in the basement. The shelves look amazing! We painted the whole room for my soap business, put up all of the stainless steel shelving for curing the soap and storing my supplies, painted the mud room, painted all of the closets, my mom's bedroom, placed contact paper in the kitchen and bathrooms, hung 2 closet systems and installed carpet in all of the closets.
We want to send a special thank you to all of our friends and family who made the time to help us out.
Dad & Nancy
Rick Sullivan
Gary's mom Lorraine
Gary's sister Michelle
Marianne Birtwell
Theresa Kusumah-Atmadja
Tracey and Brandon Hicks
Tammy Barriere
Laura Baldwin
Kevin Yost
Jen and mom Demos
My mom, especially after she Took Tucker to the ER to get his new NG tube...TWICE!
...and not to be forgotten Katie Pavento, and Chris and Amanda Pelkey for watching the kids.
All of our friends and family really came through for us this weekend. All rooms needed to be cleaned and a few rooms painted. I would never have known the the upstairs toilet, sink and tub are white not beige. My fabulous coworker Marianne spent more than eight hours scrubbing our new bathroom and you can now see your reflection in it. My father, Rick and Gary built about 600 square feet of shelves for storage in the basement. The shelves look amazing! We painted the whole room for my soap business, put up all of the stainless steel shelving for curing the soap and storing my supplies, painted the mud room, painted all of the closets, my mom's bedroom, placed contact paper in the kitchen and bathrooms, hung 2 closet systems and installed carpet in all of the closets.
We want to send a special thank you to all of our friends and family who made the time to help us out.
Dad & Nancy
Rick Sullivan
Gary's mom Lorraine
Gary's sister Michelle
Marianne Birtwell
Theresa Kusumah-Atmadja
Tracey and Brandon Hicks
Tammy Barriere
Laura Baldwin
Kevin Yost
Jen and mom Demos
My mom, especially after she Took Tucker to the ER to get his new NG tube...TWICE!
...and not to be forgotten Katie Pavento, and Chris and Amanda Pelkey for watching the kids.
Thursday, February 23, 2012
Bloodwork and Needles.
So many of you know by now that my biggest fear in life is a blood transfusion. I know that the blood supply is safe and it saves lives everyday however, I just can't get past the thought of someone elses blood running through my veins. I have even gone to the limit and told the OB that delivered Tucker that she was only allowed to give me blood if I would die without it. This proves important in the overall story because that is the same thing that kept me from seeing him after birth in recovery for 40 hours receiving multiple iron injections for my extreme blood loss.
On Wednesday I went to Childrens to donate blood for Tucker's upcoming surgery next week, I had just finished a course of antibiotics earlier that day so I was turned away until the following day. I repeated my visit on Thursday to Childrens and I was denied due to low iron. They had just checked my iron the day before and it was within all normal limits. I cannot even convey the extreme frustration about this. I was devastated. I can not even put into words how upsetting it is that I have saved countless others by donating yet, I could not save my own child. Luckily I posted on my FACEBOOK page looking for donors who were comparable. A and O negative and positive can donate to him. I got two friends to go and donate. Sometimes people are just amazing! So very grateful.
On Wednesday I went to Childrens to donate blood for Tucker's upcoming surgery next week, I had just finished a course of antibiotics earlier that day so I was turned away until the following day. I repeated my visit on Thursday to Childrens and I was denied due to low iron. They had just checked my iron the day before and it was within all normal limits. I cannot even convey the extreme frustration about this. I was devastated. I can not even put into words how upsetting it is that I have saved countless others by donating yet, I could not save my own child. Luckily I posted on my FACEBOOK page looking for donors who were comparable. A and O negative and positive can donate to him. I got two friends to go and donate. Sometimes people are just amazing! So very grateful.
Tuesday, February 7, 2012
Change is good?
Tucker went to his four month check up yesterday. He had been fighting a cold for about a week now, he was at the pediatrician early in the week with conjuctivitis, but his cough is getting worse everyday. Needless to say we didn't get our vaccinations and he was retracting so back to Childrens we go. Tucker was inpatient at Childrens Friday through Sunday of the Presidents day weekend. Gary and I took turns sleeping over with him. Hospitals beds stink! One of aunts bought us an air mattress, its amazing!
I HATE changes! Its been a difficult transition for me into my 30's and as I get closer to my 40's I find myself not recognizing who is looking back at me in the mirror. I always thought that I would never get grey hair or wrinkles, call it being in denial, but the continued stress of the looming surgery and buying a house is almost to much to take. Gary and I signed the purchase and sale. There are a lot of changes for the good coming up in our lives, as difficult it is to see right now I know that we will get past them as a family.
I HATE changes! Its been a difficult transition for me into my 30's and as I get closer to my 40's I find myself not recognizing who is looking back at me in the mirror. I always thought that I would never get grey hair or wrinkles, call it being in denial, but the continued stress of the looming surgery and buying a house is almost to much to take. Gary and I signed the purchase and sale. There are a lot of changes for the good coming up in our lives, as difficult it is to see right now I know that we will get past them as a family.
Friday, February 3, 2012
What a night!
Tucker was up screaming for the entire night, it was extremely exhausting. The main problem was that after the cath they could not obtain a pulse in his left foot, they would get it around his groin, then very faintly behind his knee. Then at around 2am, his leg turned more blue and it was getting colder to the touch. They sent us for an emergency ultrasound to check the blood flow to the arteries and an X-ray to check for any blood clots. After many RN's and MD's they finally got a faint pulse in his foot around 8am. We met with Dr. Porras around 9am and he also felt the pulse in his foot, Yay! Sounds like they are planning on discharging us today.
Thursday, February 2, 2012
Cardiac Catheterization Surgery
Today we started our day out at 4:30am. We had to make sure Tucker got his medications before 5:00 am and turn off his overnight Pedialyte. We arrived at Children's hospital at 7:00 am, because we were told to arrive two hours early for the catheterization. Tucker is just getting over the stomach bug and has had diarrhea, so he needed to be changed. It was everywhere. While changing his outfit Michelle accidentally pulled out his NG tube while she was changing his outfit. So now we have one more thing to add to the list of things the surgeons have to do today. Updates to follow as we get them throughout the day.
10:00 am - They just brought Tucker in to prep him for his surgery.
12:00 noon - Tucker is prepped and they will begin shortly.
2:00 pm - NG tube is back in and the surgery is completed. They are finishing up and applying pressure until the entry wound clots. This takes a few minutes because he is on Plavix an Aspirin for medications.
4:00 pm - Tucker came out of surgery with a temperature of 101' . We are told that this is a normal body response to an invasion of the blood vessels and also maybe because he had to receive a blood transfusion. He has screamed for the last hour and a half and he finally got some Tylenol for his temperature "will also help with the pain". They had some problems getting access to his arteries, so he is a bloody mess on both sides of his groin and the right side of his neck. Besides that everything inside looks good, and the systemic pressure is right where it should be to proceed with then Glenn at the end of the month. They are still having some problems finding his pulse in the left foot, but they assure us as long as it stays warm and pink it is fine.
6:00 pm - Tucker started choking and dry heaving. We found out that they forced him out of anesthesia instead of letting him come out on his own. This causes a lot more nausea so they had to order some anti-nausea medication. Hopefully that will help, because listening to your child choke is horrible.
10:00 am - They just brought Tucker in to prep him for his surgery.
12:00 noon - Tucker is prepped and they will begin shortly.
2:00 pm - NG tube is back in and the surgery is completed. They are finishing up and applying pressure until the entry wound clots. This takes a few minutes because he is on Plavix an Aspirin for medications.
4:00 pm - Tucker came out of surgery with a temperature of 101' . We are told that this is a normal body response to an invasion of the blood vessels and also maybe because he had to receive a blood transfusion. He has screamed for the last hour and a half and he finally got some Tylenol for his temperature "will also help with the pain". They had some problems getting access to his arteries, so he is a bloody mess on both sides of his groin and the right side of his neck. Besides that everything inside looks good, and the systemic pressure is right where it should be to proceed with then Glenn at the end of the month. They are still having some problems finding his pulse in the left foot, but they assure us as long as it stays warm and pink it is fine.
6:00 pm - Tucker started choking and dry heaving. We found out that they forced him out of anesthesia instead of letting him come out on his own. This causes a lot more nausea so they had to order some anti-nausea medication. Hopefully that will help, because listening to your child choke is horrible.
Wow, have we been busy !!!
The last month has been filled with many things. Tucker is doing well, however his oxygen saturation levels continue to go down to the lower 80's and even into the high 70's. They did tell us that this would happen and would be an indicator of when we needed to schedule his Glenn surgery. It's comforting to know that our Glenn surgery is finally scheduled for later this month on February 28th.
Spencer got a good progress report from Mrs. Kat that said he is continuing to be less aggressive and a better friend to his peers in preschool. He is also very smart, and has a complete understanding of everything required to graduate kindergarden "next year". He has also been doing alot better at home. He still has some tantrums, but not for as long or as severe.
We decided that we did not have enough going on in our life with Tuckers medical issues, Spencer's behavior issues, and starting a new soap business, so Michelle came up the idea to start a non-profit called "Warming Hearts" to provide hats and blankets to children at Children's Hospital with various cardiac issues.
And lastly, because we have nothing else going on, we have also finally found a great house after years of searching, so Gary and I have decided to purchase our first home. We will be signing the purchase and sale on it this week. It is a great looking older home with a lot of character on the Nashua River. It has some issues with the electrical (which will be fixed before we move in) and the deck, but its nothing that we cannot fix. The house will more than double our living space and give us a dedicated area for our thriving soap business.
Spencer got a good progress report from Mrs. Kat that said he is continuing to be less aggressive and a better friend to his peers in preschool. He is also very smart, and has a complete understanding of everything required to graduate kindergarden "next year". He has also been doing alot better at home. He still has some tantrums, but not for as long or as severe.
We decided that we did not have enough going on in our life with Tuckers medical issues, Spencer's behavior issues, and starting a new soap business, so Michelle came up the idea to start a non-profit called "Warming Hearts" to provide hats and blankets to children at Children's Hospital with various cardiac issues.
And lastly, because we have nothing else going on, we have also finally found a great house after years of searching, so Gary and I have decided to purchase our first home. We will be signing the purchase and sale on it this week. It is a great looking older home with a lot of character on the Nashua River. It has some issues with the electrical (which will be fixed before we move in) and the deck, but its nothing that we cannot fix. The house will more than double our living space and give us a dedicated area for our thriving soap business.
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