Just 7 days following Violet's last chemotherapy treatment her blood tests showed that her ANC had dropped from 904 to only 96. This was a drastic drop, especially knowing that she hadn't reached her lowest point in the month yet which is commonly day 14. We knew that we just had to continue what we were doing in keeping Violet isolated and maintaining as much of a germ free environment as possible.
As I was feeding Violet her dinner 1 week later she started to cry out of nowhere. Josh and I looked at each other very concerned because we could tell something wasn't right from her sudden cry. I felt her forehead and she felt hot to me. When I had put her in her highchair to eat she had felt fine. So, I asked Josh to feel her and he thought she felt ok to him. He took her out of her highchair and brought her to the couch with him to calm her. Then, as I was cleaning up after Violet's dinner he said to me, "Actually, Shenay, she does feel hot."
Immediately, I got out the thermometer and first took my temperature (to get an accurate under arm reading). I then put the thermometer under Violet's arm and it began to climb rapidly above my temperature. I panicked, told Josh to continue to hold the thermometer in place and grabbed my binder/file of Violet's hospital paperwork. I had a specific paper that told us what to do at each stage of fever and a number to call. Violet's temperature hit 101.3 and for a child going through chemotherapy that fell under the emergency category.
Frantically, I called the number and told them what was going on and they informed me that the doctor would call us back with instructions within 5-10 minutes. Umm, 5-10 minutes?! That seemed like forever and we were not about to wait. We knew we were bringing Violet to the hospital regardless so we rushed to grab the diaper bag, get Violet in her car seat and get our shoes on. We were already on our way when the doctor called us back to let us know to go to the ER and that they would be expecting us.
There is a fire station right across the street from our apartment. As I mentioned in a previous post, my mom is an EMT for another fire station in Washington. So, we had spoken before about if we had an emergency with Violet that we would have help so close by to get us to the hospital quickly if needed. We pulled up to the fire station and I ran in letting them know that we had an emergency with our baby and could they please transport us to the hospital with their medics. They asked me if she was there and I told them yes and that she was in our car. They asked us to bring her in and so Josh quickly grabbed Violet in her car seat and brought her to the front of the station. I was panicking a bit and tried to quickly explain what was going on and that she needed to get to the ER. They took her temperature and it was the same as when we had taken it at home but they explained to me that her temperature was not an emergency by their standards. I let them know it was an emergency by her doctor's standards and that it is different for a baby going through chemotherapy with a lowered immune system. They then told me they could transport us, but that their medics were still 10 minutes away and that since this was not a life or death situation by their standards the transport would be the same as us driving her because they would not use sirens or lights. When they told me this I was going through so many different emotions within seconds. I was panicked to get our baby to the hospital, I was angry that I had just wasted precious minutes going to them when I thought they were going to get us there faster and I was frustrated that they didn't know that our special circumstance warranted an emergency transport.
Josh grabbed Violet in her car seat and we rushed back to our car and were off to the hospital. Prayers were said on the way. The minutes that we were at the station felt like forever and so did the drive to the ER. I swear, everyone and everything seemed to move in slow motion while we were in a hurry. When we got to the ER Josh dropped me and Violet at the entrance so that we could get checked in while he went to park our car.
Hospital staff brought us to a room in the ER within a few minutes and began to take Violet's vitals. Her temperature was still holding 101.3. The experience that followed over the next 5 hours in the ER was overwhelming. There seemed to be a different doctor and different nurse coming in to check on her every few minutes so it was hard to keep track of who was in charge of her care. By one doctor we were told that they needed to access her port-a-cath for blood tests and to give her IV fluids. They wanted to check her blood counts/levels and to begin a blood culture that would show us over time if she had a bacterial infection. So, they sent a nurse in to apply the numbing cream to Violet's port site to prepare for her access. They also wanted to check her urine to rule out a urinary tract infection.
One nurse came in and attached the bag (it was attached by just an adhesive strip externally) and about 30 minutes later another nurse came in to access Violet's port-a-cath to begin blood tests and IV fluids. Poor Violet was crying and obviously not feeling well but they said they could not begin any antibiotics or fever reducers until they had adequate samples for testing.
Another doctor came in and said that someone else had requested for Violet to get the catheter. I was upset and told her that the bag hadn't even been collected for testing yet. I told her that we were told Violet wasn't supposed to get the catheter unless the sample in the bag wasn't clean enough. She said she knew, but that things had changed and this person ordered the catheter to get the testing done. With everything going on, I did not want stall what tests needed to be done to help Violet but I also did not want to add to her pain and her heart rate was already high from the fever and stress. That really scared me. We reluctantly agreed since they said they needed to do this to get her the proper antibiotics and we wanted her to get those as soon as possible.
The nurse came in and let us know that she would be doing the catheter and a nurse's assistant came in after her. The assistant told us that he would be helping with the procedure. I can't really explain to you the feeling that I had when they started to do this to Violet. I told Josh not to look. Basically, they were holding her legs down and open and she was crying ... hard. It made me sick that she was being put through this. It was difficult to keep it together because it just seemed like such a violation to my baby. As they were prepping her area with iodine and my mom and I were trying to calm her the nurse got out the catheter and began to try to get a clear path to insert it. Just then, a doctor came in and told them to stop. She explained that there was a miscommunication and that Violet did NOT need to have the catheter. I know I gave a look that could kill and said WHAT?! The nurse and her assistant stopped and let go of Violet and the doctor apologized to us for the confusion. I was beyond pissed that Violet had just gone through that because of someone's mistake but at the same time I also had to be grateful that it was stopped in time before the catheter was done so Violet didn't have to go through that pain.
Violet's heart rate was still high and so throughout this time in the ER we played worship music for her through our iPhones to calm her. Violet loves music and it seemed to help get her through some of the ordeal. It helped us too.
The doctor came back into the room and let us know that the results of the blood tests showed Violet's ANC was zero. With Violet having this fever and her body having nothing to fight infection I got scared and said another prayer asking God to help Violet. Because of the test results and her heart rate being so high they decided not to wait anymore to begin antibiotics and finally gave her some Tylenol to bring down her fever. We had gotten to the hospital around 8 pm and it was now 11:30 pm. They let us know that Violet would need to be admitted to the hospital for a minimum of 2 days to give her the antibiotics, monitor her ANC and to make sure through her blood cultures that Violet did not have an infection in her blood.
Finally, after midnight, Violet's temperature began to come down and her fever broke. We were so happy. The nurse let us know that our room was being prepared for us and that we would be moved as soon as it was ready. Violet was calmer now as she was starting to feel better, was tired and the majority of the poking and prodding had lessened for the most part.
At around 1 am we were taken to Violet's room on the 3rd floor in the cancer care unit. We were given a room that wasn't a private room but we were assured that every child in the unit has a compromised immune system so Violet would not be sharing a room with anyone that would put her fragile state in danger.
When we got to Violet's room her nurse was introduced to us and then the doctor for the unit came in to examine her. Violet started to cry because she was so tired at this point and she didn't want these strangers touching her anymore. The doctor began to explain bluntly that it was a good thing that we brought Violet in right away because if we had waited it could have made a difference of life or death. He then asked which eye the retinoblastoma was in and we let him know it was her left eye. He grabbed a light to look in her eyes and then quickly said that he could see it. Josh and I were both disappointed that he could see it so quickly because we were hoping that the tumor was shrinking down to nothing by now. I asked the doctor if it was a bad sign that he could see it so quickly and he said not necessarily because he didn't see what it looked like before Violet started treatment. He then proceeded to say that she will most likely lose her eye anyway because chemotherapy for this type of cancer is not as good as most others. EXCUSE me?! I felt my blood boil and I looked over at Josh. The heartbreak was clearly visible on his face. First of all, this is the exact opposite of what Violet's doctor had told us. We wouldn't be going through all of this and putting our baby through this treatment if the odds were she was going to lose her eye anyway. As you have read in previous posts Violet's doctors say there is a very good chance to shrink the tumor to where they can laser it away, restore her eye and her vision. To have this doctor now saying this to us made me angry ... especially after the night we had just been through. Something inside me quieted that anger quickly though and let me know that this doctor was not a specialist in what was going on with Violet and to not to put value into what he was saying. Even though I was now dismissing what he was saying to us, I knew it was scaring Josh and I just wanted that doctor to leave so I could tell Josh not to take what he said to heart. I was also adding to my mental to do list to contact Violet's doctor first thing in the morning to speak to him about this.
I need to tell you here that our experience at Seattle Children's has been extremely frustrating when it comes to things like getting calls back when they say they will call, having nurses say one thing and then hearing something completely different from another and then things like what happened during this hospital stay. The only thing keeping me here is that the 2 doctors that are in charge of Violet's care are amazing and rated top in their field. I also have faith that God brought us close to these doctors in a recent move for this reason. Otherwise at this point, I'd take her somewhere else. The communication here in our experience is horrible. I feel like I am constantly chasing after answers and it usually takes me calling every hour on the hour to get things taken care of the way they should be with just one call. It is very stressful.
So, when this doctor left the room we made the decision that I would stay with Violet so Josh could go back to our apartment to pack some things for us and let my mom pick up Pixie (our Pomeranian) so that she could take care of her while we were away.
I was exhausted and tried to get some sleep in the fold out bed provided for me next to Violet's crib. I think I got about an hour in before the nurse came back at 4 am to check Violet's vitals. Unfortunately, again, Violet had a fever. She let me know that she would be monitoring it and coming back in to check her temperature. I stayed up, watched Violet sleep and prayed for this fever to go away.
At 5 am the nurse came back in and took Violet's temperature. Thank God, it had come down and the fever was gone! I was so relieved and tried to get a bit more sleep in before the morning routine would start.
The next day Josh and I anxiously waited to hear results of Violet's blood cultures (it would take 24 hours to get the first result back). I called up to Violet's doctor's office to get him to come and see her and to talk to him about what was said to us the night before. I was told the message would be given to him and he would call or come to see us.
As I waited to hear back I received a phone call from hospital scheduling regarding Violet's hearing test. Violet was supposed to get a hearing test under anesthesia because hearing needs to be monitored with the type of chemotherapy that she is receiving. One of the medications can cause problems in some cases. I had called and left 3 messages for staff the very moment Violet's CT scan under anesthesia was scheduled for October 5th to ensure that her hearing test would be scheduled at the same time so Violet would not have to go under anesthesia twice. Of course, even though I reminded them each week after that, they didn't get it done and now wanted to have Violet go under for the test on Friday which was the very next day from now. I let them know that we were there in the hospital and that Violet was admitted with an ANC of zero so that was not possible. She told me that she would talk to the doctor and find out what should be done since this test needed to be completed before her next round of chemotherapy scheduled to begin on October 6th. I was irritated that yet again, they did not coordinate in time to have this all done at once. This is what had happened 2 months ago when Violet had her first scan done. They did not get it coordinated in time, so Violet had to get a traditional non sedated hearing test that was difficult to get the best results needed due to her young age.
In the next few hours I continued to call and check on when Violet's doctor could speak with us. I also let our nurse know that we wanted to speak with him. When the resident of the unit came in I also let her know we wanted to speak with him. She spoke briefly with me about Violet's hearing test. She said that it would be ok to have Violet go ahead with the test the next day. Josh and I voiced our concern about our baby going under anesthesia with an ANC of zero. She said that they would never let her go through with anything that could be potentially harmful to her and that she would like us to at least speak with the anesthesiologist about the safety of the procedure so that Violet could keep the appointment. Josh and I said fine, but knew we did not want to go through with it knowing that going under meant possible IV requirements and a breathing tube. No matter what she said, that just did not seem safe to us when Violet's body was in a fragile state.
Later on, the anesthesiologist came in and I was so relieved to see that it was the same woman that was with Violet through her first procedure. She was so empathetic to our situation and had a wonderful bedside manner (as they ALL should at a children's hospital). We told her our concerns and without hesitation she said that she agreed with us and that she would never put an infant under in Violet's state. Hmmmmm, I thought I was just told by the resident that everything would be just fine in putting Violet under! So, to make a long story short, Violet did not get a hearing test while we were in the hospital.
I am getting emotionally exhausted just writing and reliving this whole ordeal ...
On Friday, Violet's doctor came in to speak with me about everything. When I told him what that other doctor had said to us he was visibly upset about it and let me know that the other doctor didn't know what he was talking about and that he would bring him up to speed on the treatment for retinoblastoma. He assured me that we are doing the right thing for Violet and that he was very sorry that we were spoken to that way with wrong information.
Later on, the doctor in charge of the floor came in to apologize to me on behalf of the hospital for all of the miscommunication that had taken place during our stay.
Over the next couple of days they let us know that they wanted Violet's ANC to be at least 200 before they could let her go home. After 48 hours it was not there yet so we needed to stay longer. The good news was that Violet's blood culture results were coming back clear and free of bacteria! Also, she had not had any additional fevers since that first morning.
In the 3 days that we stayed in the hospital, 3 different families came through that shared our room. One night, we were up the entire night because there was a little girl that was crying and screaming in pain from the treatment that she was receiving. It broke our hearts and made an already hard situation more difficult to bare. We were so sleep deprived and wanted for Violet to get sleep because she was already lacking from everything that was going on. We were so grateful when Saturday night came around and Violet's ANC reached 200. Thank God, we were going home.
The hospital scheduled a follow up lab appointment for Violet on Monday to make sure her ANC was still going up and that her other levels were as well. Not only did Violet's numbers go up, her ANC went from 200 (severe) to 1540 (normal)! That was amazing and wonderful news.
We go back tomorrow for her normal Thursday labs and check up and I hope to hear that her levels continue to look good.
Thank you all so much for your encouraging and supporting comments, emails, phone calls and messages. Thank you for your prayers!
As I was feeding Violet her dinner 1 week later she started to cry out of nowhere. Josh and I looked at each other very concerned because we could tell something wasn't right from her sudden cry. I felt her forehead and she felt hot to me. When I had put her in her highchair to eat she had felt fine. So, I asked Josh to feel her and he thought she felt ok to him. He took her out of her highchair and brought her to the couch with him to calm her. Then, as I was cleaning up after Violet's dinner he said to me, "Actually, Shenay, she does feel hot."
Immediately, I got out the thermometer and first took my temperature (to get an accurate under arm reading). I then put the thermometer under Violet's arm and it began to climb rapidly above my temperature. I panicked, told Josh to continue to hold the thermometer in place and grabbed my binder/file of Violet's hospital paperwork. I had a specific paper that told us what to do at each stage of fever and a number to call. Violet's temperature hit 101.3 and for a child going through chemotherapy that fell under the emergency category.
Frantically, I called the number and told them what was going on and they informed me that the doctor would call us back with instructions within 5-10 minutes. Umm, 5-10 minutes?! That seemed like forever and we were not about to wait. We knew we were bringing Violet to the hospital regardless so we rushed to grab the diaper bag, get Violet in her car seat and get our shoes on. We were already on our way when the doctor called us back to let us know to go to the ER and that they would be expecting us.
There is a fire station right across the street from our apartment. As I mentioned in a previous post, my mom is an EMT for another fire station in Washington. So, we had spoken before about if we had an emergency with Violet that we would have help so close by to get us to the hospital quickly if needed. We pulled up to the fire station and I ran in letting them know that we had an emergency with our baby and could they please transport us to the hospital with their medics. They asked me if she was there and I told them yes and that she was in our car. They asked us to bring her in and so Josh quickly grabbed Violet in her car seat and brought her to the front of the station. I was panicking a bit and tried to quickly explain what was going on and that she needed to get to the ER. They took her temperature and it was the same as when we had taken it at home but they explained to me that her temperature was not an emergency by their standards. I let them know it was an emergency by her doctor's standards and that it is different for a baby going through chemotherapy with a lowered immune system. They then told me they could transport us, but that their medics were still 10 minutes away and that since this was not a life or death situation by their standards the transport would be the same as us driving her because they would not use sirens or lights. When they told me this I was going through so many different emotions within seconds. I was panicked to get our baby to the hospital, I was angry that I had just wasted precious minutes going to them when I thought they were going to get us there faster and I was frustrated that they didn't know that our special circumstance warranted an emergency transport.
Josh grabbed Violet in her car seat and we rushed back to our car and were off to the hospital. Prayers were said on the way. The minutes that we were at the station felt like forever and so did the drive to the ER. I swear, everyone and everything seemed to move in slow motion while we were in a hurry. When we got to the ER Josh dropped me and Violet at the entrance so that we could get checked in while he went to park our car.
Hospital staff brought us to a room in the ER within a few minutes and began to take Violet's vitals. Her temperature was still holding 101.3. The experience that followed over the next 5 hours in the ER was overwhelming. There seemed to be a different doctor and different nurse coming in to check on her every few minutes so it was hard to keep track of who was in charge of her care. By one doctor we were told that they needed to access her port-a-cath for blood tests and to give her IV fluids. They wanted to check her blood counts/levels and to begin a blood culture that would show us over time if she had a bacterial infection. So, they sent a nurse in to apply the numbing cream to Violet's port site to prepare for her access. They also wanted to check her urine to rule out a urinary tract infection.
One nurse came in and attached the bag (it was attached by just an adhesive strip externally) and about 30 minutes later another nurse came in to access Violet's port-a-cath to begin blood tests and IV fluids. Poor Violet was crying and obviously not feeling well but they said they could not begin any antibiotics or fever reducers until they had adequate samples for testing.
Another doctor came in and said that someone else had requested for Violet to get the catheter. I was upset and told her that the bag hadn't even been collected for testing yet. I told her that we were told Violet wasn't supposed to get the catheter unless the sample in the bag wasn't clean enough. She said she knew, but that things had changed and this person ordered the catheter to get the testing done. With everything going on, I did not want stall what tests needed to be done to help Violet but I also did not want to add to her pain and her heart rate was already high from the fever and stress. That really scared me. We reluctantly agreed since they said they needed to do this to get her the proper antibiotics and we wanted her to get those as soon as possible.
The nurse came in and let us know that she would be doing the catheter and a nurse's assistant came in after her. The assistant told us that he would be helping with the procedure. I can't really explain to you the feeling that I had when they started to do this to Violet. I told Josh not to look. Basically, they were holding her legs down and open and she was crying ... hard. It made me sick that she was being put through this. It was difficult to keep it together because it just seemed like such a violation to my baby. As they were prepping her area with iodine and my mom and I were trying to calm her the nurse got out the catheter and began to try to get a clear path to insert it. Just then, a doctor came in and told them to stop. She explained that there was a miscommunication and that Violet did NOT need to have the catheter. I know I gave a look that could kill and said WHAT?! The nurse and her assistant stopped and let go of Violet and the doctor apologized to us for the confusion. I was beyond pissed that Violet had just gone through that because of someone's mistake but at the same time I also had to be grateful that it was stopped in time before the catheter was done so Violet didn't have to go through that pain.
Violet's heart rate was still high and so throughout this time in the ER we played worship music for her through our iPhones to calm her. Violet loves music and it seemed to help get her through some of the ordeal. It helped us too.
The doctor came back into the room and let us know that the results of the blood tests showed Violet's ANC was zero. With Violet having this fever and her body having nothing to fight infection I got scared and said another prayer asking God to help Violet. Because of the test results and her heart rate being so high they decided not to wait anymore to begin antibiotics and finally gave her some Tylenol to bring down her fever. We had gotten to the hospital around 8 pm and it was now 11:30 pm. They let us know that Violet would need to be admitted to the hospital for a minimum of 2 days to give her the antibiotics, monitor her ANC and to make sure through her blood cultures that Violet did not have an infection in her blood.
Finally, after midnight, Violet's temperature began to come down and her fever broke. We were so happy. The nurse let us know that our room was being prepared for us and that we would be moved as soon as it was ready. Violet was calmer now as she was starting to feel better, was tired and the majority of the poking and prodding had lessened for the most part.
At around 1 am we were taken to Violet's room on the 3rd floor in the cancer care unit. We were given a room that wasn't a private room but we were assured that every child in the unit has a compromised immune system so Violet would not be sharing a room with anyone that would put her fragile state in danger.
When we got to Violet's room her nurse was introduced to us and then the doctor for the unit came in to examine her. Violet started to cry because she was so tired at this point and she didn't want these strangers touching her anymore. The doctor began to explain bluntly that it was a good thing that we brought Violet in right away because if we had waited it could have made a difference of life or death. He then asked which eye the retinoblastoma was in and we let him know it was her left eye. He grabbed a light to look in her eyes and then quickly said that he could see it. Josh and I were both disappointed that he could see it so quickly because we were hoping that the tumor was shrinking down to nothing by now. I asked the doctor if it was a bad sign that he could see it so quickly and he said not necessarily because he didn't see what it looked like before Violet started treatment. He then proceeded to say that she will most likely lose her eye anyway because chemotherapy for this type of cancer is not as good as most others. EXCUSE me?! I felt my blood boil and I looked over at Josh. The heartbreak was clearly visible on his face. First of all, this is the exact opposite of what Violet's doctor had told us. We wouldn't be going through all of this and putting our baby through this treatment if the odds were she was going to lose her eye anyway. As you have read in previous posts Violet's doctors say there is a very good chance to shrink the tumor to where they can laser it away, restore her eye and her vision. To have this doctor now saying this to us made me angry ... especially after the night we had just been through. Something inside me quieted that anger quickly though and let me know that this doctor was not a specialist in what was going on with Violet and to not to put value into what he was saying. Even though I was now dismissing what he was saying to us, I knew it was scaring Josh and I just wanted that doctor to leave so I could tell Josh not to take what he said to heart. I was also adding to my mental to do list to contact Violet's doctor first thing in the morning to speak to him about this.
I need to tell you here that our experience at Seattle Children's has been extremely frustrating when it comes to things like getting calls back when they say they will call, having nurses say one thing and then hearing something completely different from another and then things like what happened during this hospital stay. The only thing keeping me here is that the 2 doctors that are in charge of Violet's care are amazing and rated top in their field. I also have faith that God brought us close to these doctors in a recent move for this reason. Otherwise at this point, I'd take her somewhere else. The communication here in our experience is horrible. I feel like I am constantly chasing after answers and it usually takes me calling every hour on the hour to get things taken care of the way they should be with just one call. It is very stressful.
So, when this doctor left the room we made the decision that I would stay with Violet so Josh could go back to our apartment to pack some things for us and let my mom pick up Pixie (our Pomeranian) so that she could take care of her while we were away.
I was exhausted and tried to get some sleep in the fold out bed provided for me next to Violet's crib. I think I got about an hour in before the nurse came back at 4 am to check Violet's vitals. Unfortunately, again, Violet had a fever. She let me know that she would be monitoring it and coming back in to check her temperature. I stayed up, watched Violet sleep and prayed for this fever to go away.
At 5 am the nurse came back in and took Violet's temperature. Thank God, it had come down and the fever was gone! I was so relieved and tried to get a bit more sleep in before the morning routine would start.
The next day Josh and I anxiously waited to hear results of Violet's blood cultures (it would take 24 hours to get the first result back). I called up to Violet's doctor's office to get him to come and see her and to talk to him about what was said to us the night before. I was told the message would be given to him and he would call or come to see us.
As I waited to hear back I received a phone call from hospital scheduling regarding Violet's hearing test. Violet was supposed to get a hearing test under anesthesia because hearing needs to be monitored with the type of chemotherapy that she is receiving. One of the medications can cause problems in some cases. I had called and left 3 messages for staff the very moment Violet's CT scan under anesthesia was scheduled for October 5th to ensure that her hearing test would be scheduled at the same time so Violet would not have to go under anesthesia twice. Of course, even though I reminded them each week after that, they didn't get it done and now wanted to have Violet go under for the test on Friday which was the very next day from now. I let them know that we were there in the hospital and that Violet was admitted with an ANC of zero so that was not possible. She told me that she would talk to the doctor and find out what should be done since this test needed to be completed before her next round of chemotherapy scheduled to begin on October 6th. I was irritated that yet again, they did not coordinate in time to have this all done at once. This is what had happened 2 months ago when Violet had her first scan done. They did not get it coordinated in time, so Violet had to get a traditional non sedated hearing test that was difficult to get the best results needed due to her young age.
In the next few hours I continued to call and check on when Violet's doctor could speak with us. I also let our nurse know that we wanted to speak with him. When the resident of the unit came in I also let her know we wanted to speak with him. She spoke briefly with me about Violet's hearing test. She said that it would be ok to have Violet go ahead with the test the next day. Josh and I voiced our concern about our baby going under anesthesia with an ANC of zero. She said that they would never let her go through with anything that could be potentially harmful to her and that she would like us to at least speak with the anesthesiologist about the safety of the procedure so that Violet could keep the appointment. Josh and I said fine, but knew we did not want to go through with it knowing that going under meant possible IV requirements and a breathing tube. No matter what she said, that just did not seem safe to us when Violet's body was in a fragile state.
Later on, the anesthesiologist came in and I was so relieved to see that it was the same woman that was with Violet through her first procedure. She was so empathetic to our situation and had a wonderful bedside manner (as they ALL should at a children's hospital). We told her our concerns and without hesitation she said that she agreed with us and that she would never put an infant under in Violet's state. Hmmmmm, I thought I was just told by the resident that everything would be just fine in putting Violet under! So, to make a long story short, Violet did not get a hearing test while we were in the hospital.
I am getting emotionally exhausted just writing and reliving this whole ordeal ...
On Friday, Violet's doctor came in to speak with me about everything. When I told him what that other doctor had said to us he was visibly upset about it and let me know that the other doctor didn't know what he was talking about and that he would bring him up to speed on the treatment for retinoblastoma. He assured me that we are doing the right thing for Violet and that he was very sorry that we were spoken to that way with wrong information.
Later on, the doctor in charge of the floor came in to apologize to me on behalf of the hospital for all of the miscommunication that had taken place during our stay.
Over the next couple of days they let us know that they wanted Violet's ANC to be at least 200 before they could let her go home. After 48 hours it was not there yet so we needed to stay longer. The good news was that Violet's blood culture results were coming back clear and free of bacteria! Also, she had not had any additional fevers since that first morning.
In the 3 days that we stayed in the hospital, 3 different families came through that shared our room. One night, we were up the entire night because there was a little girl that was crying and screaming in pain from the treatment that she was receiving. It broke our hearts and made an already hard situation more difficult to bare. We were so sleep deprived and wanted for Violet to get sleep because she was already lacking from everything that was going on. We were so grateful when Saturday night came around and Violet's ANC reached 200. Thank God, we were going home.
The hospital scheduled a follow up lab appointment for Violet on Monday to make sure her ANC was still going up and that her other levels were as well. Not only did Violet's numbers go up, her ANC went from 200 (severe) to 1540 (normal)! That was amazing and wonderful news.
We go back tomorrow for her normal Thursday labs and check up and I hope to hear that her levels continue to look good.
Thank you all so much for your encouraging and supporting comments, emails, phone calls and messages. Thank you for your prayers!
I cannot you how relieved I am to hear violet's ANC level has gone up. Violet has got really smart and strong parents and as long as she has you guys around, only good things will come her way. With all the miscommunication going on in this hospital, you are doing the right thing to stay on top of things and question every single thing they do.
ReplyDeleteI couldnt hold my tears as I was reading but was very glad at the end that Violets ANC level are up.
Praying for little Violet and her parents.
Hasina (mom from WTE Dec 2010)