On October 9th, 2012, I took Ambrosia to her doctor because she was grunting while she was breathing and also had been throwing up about once a day. She had no fever and had not been running one. Her doctor tested her for RSV and that came back negative. He diagnosed her with bronchiolitis and gave me a nebulizer along with some medicine to give her breathing treatments every 4 hours. He saw her every couple of days to check her progress. On October 13th, we had gone back for our 3rd visit and her doctor gave her some steriods to hopefully help things move along. She was great all weekend long and even on Monday the 15th things were good. Her next appointment was October 18th and that morning she seemed to have regressed and had thrown up again. I am going to post my Facebook statuses below as our chain of events happened that day.
About to head to Kosairs to get a chest xray for Ambrosia and a pertussis test. Poor thing still isn't better.
Ambrosia is being admitted to Kosairs with pneumonia.
Waiting on results of CT scan. Ambrosia may have to have surgery to get fluid out of lung.
This next statuses are actually from October 19th:
Update on Ambrosia: After her CT scan yesterday, the doctors gave us some unexpected news. They found a mass on her liver and it has spread to other areas. There is a very small chance it is an infection, but the doctors believe it is cancer. She will undergo surgery today to remove fluid from her lung and they will biopsy the mass on her liver. We will have a preliminary diagnosis a few hours after surgery and a full one within 48 hours. As you can imagine this news has blindsided all of us. If you pray, please do so. I will update as I can.
Ambrosia is in surgery.
The surgeon came and spoke with us. The tumors are malignant. The pathologists are looking at the biopsy to determine what kind of cancer we are dealing with. Hopefully we will know what we are dealing with tomorrow and have a treatment plan in place.
Another update...She is in recovery now. Off the ventilator. Resting comfortably as long as no one touches her (she figured out quick that certain people were going to poke and prod at her). Will be returning to her PICU room soon.
Back in PICU.
About to head to Kosairs to get a chest xray for Ambrosia and a pertussis test. Poor thing still isn't better.
Ambrosia is being admitted to Kosairs with pneumonia.
Waiting on results of CT scan. Ambrosia may have to have surgery to get fluid out of lung.
This next statuses are actually from October 19th:
Update on Ambrosia: After her CT scan yesterday, the doctors gave us some unexpected news. They found a mass on her liver and it has spread to other areas. There is a very small chance it is an infection, but the doctors believe it is cancer. She will undergo surgery today to remove fluid from her lung and they will biopsy the mass on her liver. We will have a preliminary diagnosis a few hours after surgery and a full one within 48 hours. As you can imagine this news has blindsided all of us. If you pray, please do so. I will update as I can.
Ambrosia is in surgery.
The surgeon came and spoke with us. The tumors are malignant. The pathologists are looking at the biopsy to determine what kind of cancer we are dealing with. Hopefully we will know what we are dealing with tomorrow and have a treatment plan in place.
Another update...She is in recovery now. Off the ventilator. Resting comfortably as long as no one touches her (she figured out quick that certain people were going to poke and prod at her). Will be returning to her PICU room soon.
Back in PICU.
Latest update (probably last for tonight): The attending doctor came to see Ambrosia and gave me the best news, that I could nurse my baby again. She had not ate since 10 am yesterday. The doctor also took her off oxygen and stopped her breathing treatments because she is doing so well. She will have another CT scan tomorrow. I appreciate everyone's love and prayers. Wish I could respond to everyone.
October 20th:
Ok. First chance I have had to sit down since this morning. We are out of PICU and on the oncology floor. Her CT Scan this morning shows no tumors anywhere else. The largest mass is on her liver, one is close to her heart but not on or in it and of course the tumors in her lungs. They are nearly 100% sure it is hepatoblastoma. They will know for certain by Monday and will go over her treatment plan at that point.
October 21st:
Update: Ambrosia is back on oxygen today. She was in distress a lot last night with her breathing. The oxygen is keeping her stable. She is eating great and resting comfortably. We are hoping for a complete diagnosis tomorrow, but there is still a possibility that we won't have one yet. Once we know and digest the information, I will update here.
October 20th:
Ok. First chance I have had to sit down since this morning. We are out of PICU and on the oncology floor. Her CT Scan this morning shows no tumors anywhere else. The largest mass is on her liver, one is close to her heart but not on or in it and of course the tumors in her lungs. They are nearly 100% sure it is hepatoblastoma. They will know for certain by Monday and will go over her treatment plan at that point.
October 21st:
Update: Ambrosia is back on oxygen today. She was in distress a lot last night with her breathing. The oxygen is keeping her stable. She is eating great and resting comfortably. We are hoping for a complete diagnosis tomorrow, but there is still a possibility that we won't have one yet. Once we know and digest the information, I will update here.
Sleeping Beauty
October 22nd:
UPDATE: After waiting several hours today, we were given a diagnosis. It is NOT hepatoblastoma like they were originally hoping. It is an extremely rare form of cancer called malignant rhabdoid tumor of the liver. It is agressive. They will be starting her chemotherapy tomorrow. She will be in the hospital several more weeks as they see how she responds to the chemotherapy, how fast the tumors in her lungs shrink so they can remove the chest tube that is draining fluid, and her ability to breathe without the help of oxygen. Her treatment in total will last several months, with the possibility of it lasting a year. The oncologist believes the tumor in her liver is operable. It is in a good spot to be removed once they see how she responds to her chemo treatment.
October 23rd:
Update: The oncologist this morning said that Ambrosia isn't getting the nutrition she needs as she may be aspirating while nursing because of her labored breathing. This means that after they start her chemotherapy this afternoon and see how she responds, they will be inserting a feeding tube. As upsetting as this is for me, she still will be able to receive my breast milk via the feeding tube.
Some good news....Last week Wes had been interviewed by his work to become a full time employee. There were 3 available spots and 6 candidates. Friday, minutes before taking Ambrosia back to surgery, he received a call that he had been hired on and was no longer a contract employee. This means a pay raise which will help some with bills as we go through treatments with Ambrosia. His work today also told him to take this week off with pay to spend as much time as possible here at the hospital.
Thank you to everyone for your thoughts and prayers. We appreciate each and every one.
October 24th:
Ok. Quite a bit happened today so here goes....Around 1 pm today, Ambrosia started having some distress. She woke up from her nap and was hard to calm down. I called for her nurse to bring some pain medication. While waiting for that a few minutes passed and she began gagging and gasping for breath. I called again that someone was needed immediately. From there it was a snowball effect, there were easily upwards of 15 to 20 people in our room. They had to put her back on a ventilator to breathe for her. The surgeons decided to put a second chest tube in her other side to drain the fluid that had been building on her left side. She was taken to surgery and we are now back down in PICU room 416. She is stable now and quite a bit of fluid was drained from her left side. They are keeping her sedated to help keep her calm while she is on the ventilator. She has opened her eyes and looked around a few times but she is mostly sleeping. Throughout all of this she is still receiving her chemotherapy medicine. It's been an eventful day, but most importantly Ambrosia is stable now and doing good.
UPDATE: After waiting several hours today, we were given a diagnosis. It is NOT hepatoblastoma like they were originally hoping. It is an extremely rare form of cancer called malignant rhabdoid tumor of the liver. It is agressive. They will be starting her chemotherapy tomorrow. She will be in the hospital several more weeks as they see how she responds to the chemotherapy, how fast the tumors in her lungs shrink so they can remove the chest tube that is draining fluid, and her ability to breathe without the help of oxygen. Her treatment in total will last several months, with the possibility of it lasting a year. The oncologist believes the tumor in her liver is operable. It is in a good spot to be removed once they see how she responds to her chemo treatment.
October 23rd:
Update: The oncologist this morning said that Ambrosia isn't getting the nutrition she needs as she may be aspirating while nursing because of her labored breathing. This means that after they start her chemotherapy this afternoon and see how she responds, they will be inserting a feeding tube. As upsetting as this is for me, she still will be able to receive my breast milk via the feeding tube.
Some good news....Last week Wes had been interviewed by his work to become a full time employee. There were 3 available spots and 6 candidates. Friday, minutes before taking Ambrosia back to surgery, he received a call that he had been hired on and was no longer a contract employee. This means a pay raise which will help some with bills as we go through treatments with Ambrosia. His work today also told him to take this week off with pay to spend as much time as possible here at the hospital.
Thank you to everyone for your thoughts and prayers. We appreciate each and every one.
October 24th:
Ok. Quite a bit happened today so here goes....Around 1 pm today, Ambrosia started having some distress. She woke up from her nap and was hard to calm down. I called for her nurse to bring some pain medication. While waiting for that a few minutes passed and she began gagging and gasping for breath. I called again that someone was needed immediately. From there it was a snowball effect, there were easily upwards of 15 to 20 people in our room. They had to put her back on a ventilator to breathe for her. The surgeons decided to put a second chest tube in her other side to drain the fluid that had been building on her left side. She was taken to surgery and we are now back down in PICU room 416. She is stable now and quite a bit of fluid was drained from her left side. They are keeping her sedated to help keep her calm while she is on the ventilator. She has opened her eyes and looked around a few times but she is mostly sleeping. Throughout all of this she is still receiving her chemotherapy medicine. It's been an eventful day, but most importantly Ambrosia is stable now and doing good.
October 26th:
Not a lot to update. Ambrosia is still stable with her breathing. She is still on the ventilator. They had a little bit of an issue getting her feeding tube where they wanted it (past the stomach and into her intestines) but they finally got it and she has been on continuing feeds since this afternoon. They have been slowly weaning her off the ventilator. I'm not sure when she will be fully off of it so that we can move back up to the oncology floor. I'm hoping soon, as it is a little easier to rest up there! Her hemoglobin levels have been low today, so she will be getting her second blood transfusion since being in the hospital.
She has been periodically opening her eyes and looking around. I can't wait until she has a little less tubing associated with her so I can hold her again. Thanks for everyone's continued prayers and thoughts and support. We appreciate it all.
October 27th:
Update: They took Ambrosia off the ventilator a little after 8 this morning. She is doing well. They do have her on oxygen but it's on a low setting. She has been playing with a few toys while awake but mostly she is resting. One of her chest tubes may be coming out sometime in the next few days. Below is a picture of Braeden playing with Ambrosia.
Not a lot to update. Ambrosia is still stable with her breathing. She is still on the ventilator. They had a little bit of an issue getting her feeding tube where they wanted it (past the stomach and into her intestines) but they finally got it and she has been on continuing feeds since this afternoon. They have been slowly weaning her off the ventilator. I'm not sure when she will be fully off of it so that we can move back up to the oncology floor. I'm hoping soon, as it is a little easier to rest up there! Her hemoglobin levels have been low today, so she will be getting her second blood transfusion since being in the hospital.
She has been periodically opening her eyes and looking around. I can't wait until she has a little less tubing associated with her so I can hold her again. Thanks for everyone's continued prayers and thoughts and support. We appreciate it all.
October 27th:
Update: They took Ambrosia off the ventilator a little after 8 this morning. She is doing well. They do have her on oxygen but it's on a low setting. She has been playing with a few toys while awake but mostly she is resting. One of her chest tubes may be coming out sometime in the next few days. Below is a picture of Braeden playing with Ambrosia.
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