... continued from part 1 ...
The messages were from a few different nurses and doctors, but they all said the same thing. They informed me that it was urgent to bring Violet back to the hospital because the blood that they took when she was in the ER came back positive for bacteria. This was so urgent, in fact, that the last message left for us a few minutes before I checked my phone said if they did not hear back from us very soon they were going to send someone out to our home.
I immediately told Josh to hurry and get dressed and that we needed to get Violet to the hospital right away. We were out of the house in minutes. My mind raced and I couldn't help but panic. I called family members on the way asking for prayers.
When we got to the ER, they were obviously expecting us and got us into a room right away. I told the nurse that Violet needed numbing cream for her port since we left in such a rush and she came back quickly to apply it. But then, the staff started to lag. It wasn't until an hour later, after multiple phone calls between ER staff and oncology that a nurse finally came in to get Violet's port accessed. By this time, Josh and I were very anxious and frustrated because we knew that Violet needed antibiotics started hours ago.
Violet has had her port accessed over 40 times. I know the sterile procedure each nurse is supposed to do and exactly how it goes. I was given the great advice from another mom who's child had a port to watch and know this process as some nurses may miss something and it could cost your child's health to not do it correctly. So, when this nurse pushed the needle in and it didn't draw blood back into the line right away and Violet started crying, I immediately knew she did something wrong. I asked her (not so nicely) what was going on. She said she didn't know, that the line wasn't working correctly and she needed to try again. I became angry. She tried to adjust it (without removing it) and Violet started screaming. I told her firmly at this point to stop what she was doing and to get someone else in there to do it. Without apologizing she left the room.
A new nurse came in and by this point Violet was sore from the previous pokes that were obviously not placed properly. When the nurse accessed her port this time, I knew it hurt her by the way she curled her body inward, cried and peed all over my lap. Full honesty with you all as always, I started to pray at this point to calm myself down because I wanted to find that first nurse in the hall and wring her neck for making Violet go through that.
It was a really busy day at the hospital so it took another hour to get a room for Violet. They had started her antibiotics down in the ER and so we took her IV cart up with us to the 2nd floor. Normally, Violet would be admitted to the SCCA unit (for cancer patients) this close to the end of treatment but the entire unit was full (a very sad thing ... please pray for these children and their families). There is a feeling of safety that comes with a stay on the SCCA unit that you do not have with a stay on a floor with children having random medical issues. In SCCA, all children have compromised immune systems from treatment so there isn't a worry that the child sharing your room or the room next door could have something contagious. They simply don't place those children on that floor. Where Violet was staying, Josh and I noticed signs on doors warning of contagions, respiratory cautions and various other things you don't want your child around.
We got little sleep that night. Violet does not sleep in a crib at home, she sleeps in bed with us. She did not want to sleep in the crib that they provided at all and woke up constantly. Also, anyone who has stayed in the hospital knows how much your sleep gets interrupted by staff coming through to check vitals, administer meds, take blood, etc. And, when you share a room it's double the fun.
They continued to take blood and monitor the infection. They let us know that they were using an aggressive antibiotic in hopes that they could clear the infection and not have to remove her port. We were told that they would need to have 3 consecutive days of cultures that came back clear (48 hours each) before they would be able to release Violet.
On the third night Violet was not sleeping at all. I knew this poor little girl needed her rest to get better and so at about 2 AM I brought her into my bed (a fold out couch) with me. The nurse came in and I told her that every few minutes Violet was waking up in the crib, reaching for me and then crying because I wasn't lying next to her since we co-sleep at home. I told her that I was going to keep Violet in bed with me because she (and I) needed to get some sleep. She informed me that it was not allowed and that if Violet was going to remain on the couch with me, I needed to stay awake while she slept. I told her that I wasn't going to be able to not sleep for an entire week (or more) so I would be needing to share a bed with my daughter. She said I needed to have a consultation with the doctor and sign papers before we could both sleep together in a bed and that no one was available to do that until the next day. So, Violet slept next to me that night while I stayed awake.
The next day I could tell Violet was feeling so much better. She was happy, playing and getting the attention of people who passed by in the hall when they saw her in the window.
The blood cultures were coming back clear which indicated the antibiotics were working! We were so happy that things were starting to look up for Violet.
A doctor came through with the paperwork to sign in regards to getting a bed to replace the crib so that Violet could sleep with me. She looked at me and asked me if I was aware of the dangers of Violet sleeping with me. I looked at her and told her that I was very aware of the benefits of my daughter sleeping with me. Quickly seeing that her scare tactic didn't sway me in the direction of keeping the crib, she handed me the sheet to sign and explained that my signature was needed to take the liability off of them incase anything were to "happen". Believe me, with Violet hooked up to an IV, fighting an infection in her blood and sharing a floor with kids who have various serious illnesses the last thing I find dangerous is my daughter sleeping next to me.
Later that afternoon, after Violet was playing in her window, I went to change her diaper. As I layed her down, I noticed that her tummy was a little wet with clear droplets. I lifted up her gown to look at her port and then all of a sudden blood started coming out of her line somewhere spilling all over her and the bed. I pushed the nurse call button but didn't wait. I flung the door open and yelled out that I needed a nurse. I was about to lose it at this point. Violet's nurse was coming our way and came right in to see what was going on. She took one look at it and looked out the door for help. Thank God, the IV team (the IV specialists) were in the hall walking right by our room. They came right in and inspected Violet's IV and found that it had broken right above one of the connections. The nurse asked if she should flush the line and the specialists told her no right away because if bacteria entered through the break she would be flushing that right into Violet's port and into her veins. I can't tell you how grateful I am that this specialist was right there to ensure this was handled properly because I was freaking out. Thank you Lord!
The specialist let me know that they would need to de-access Violet's port and access her with a new line. And, she contacted oncology and a new blood culture would have to be done to ensure no new bacteria got in. Just when all the cultures were coming back clear, here was a new obstacle and risk!
Violet was re-accessed and given a new IV from the IV specialist (who did a great job so Violet didn't make a peep) and then thankfully things began calmed down again.
Thankfully, since Josh had to work during the day (as hard as that was for him to not be with us at the hospital) my mom took Wednesday off and stayed with me and Violet. It made a huge difference to have her there with me. We got Violet out of her room and took her to explore the hospital. She had so much fun seeing all the animals on floors we hadn't been to before.
The messages were from a few different nurses and doctors, but they all said the same thing. They informed me that it was urgent to bring Violet back to the hospital because the blood that they took when she was in the ER came back positive for bacteria. This was so urgent, in fact, that the last message left for us a few minutes before I checked my phone said if they did not hear back from us very soon they were going to send someone out to our home.
I immediately told Josh to hurry and get dressed and that we needed to get Violet to the hospital right away. We were out of the house in minutes. My mind raced and I couldn't help but panic. I called family members on the way asking for prayers.
When we got to the ER, they were obviously expecting us and got us into a room right away. I told the nurse that Violet needed numbing cream for her port since we left in such a rush and she came back quickly to apply it. But then, the staff started to lag. It wasn't until an hour later, after multiple phone calls between ER staff and oncology that a nurse finally came in to get Violet's port accessed. By this time, Josh and I were very anxious and frustrated because we knew that Violet needed antibiotics started hours ago.
Violet has had her port accessed over 40 times. I know the sterile procedure each nurse is supposed to do and exactly how it goes. I was given the great advice from another mom who's child had a port to watch and know this process as some nurses may miss something and it could cost your child's health to not do it correctly. So, when this nurse pushed the needle in and it didn't draw blood back into the line right away and Violet started crying, I immediately knew she did something wrong. I asked her (not so nicely) what was going on. She said she didn't know, that the line wasn't working correctly and she needed to try again. I became angry. She tried to adjust it (without removing it) and Violet started screaming. I told her firmly at this point to stop what she was doing and to get someone else in there to do it. Without apologizing she left the room.
A new nurse came in and by this point Violet was sore from the previous pokes that were obviously not placed properly. When the nurse accessed her port this time, I knew it hurt her by the way she curled her body inward, cried and peed all over my lap. Full honesty with you all as always, I started to pray at this point to calm myself down because I wanted to find that first nurse in the hall and wring her neck for making Violet go through that.
It was a really busy day at the hospital so it took another hour to get a room for Violet. They had started her antibiotics down in the ER and so we took her IV cart up with us to the 2nd floor. Normally, Violet would be admitted to the SCCA unit (for cancer patients) this close to the end of treatment but the entire unit was full (a very sad thing ... please pray for these children and their families). There is a feeling of safety that comes with a stay on the SCCA unit that you do not have with a stay on a floor with children having random medical issues. In SCCA, all children have compromised immune systems from treatment so there isn't a worry that the child sharing your room or the room next door could have something contagious. They simply don't place those children on that floor. Where Violet was staying, Josh and I noticed signs on doors warning of contagions, respiratory cautions and various other things you don't want your child around.
We got little sleep that night. Violet does not sleep in a crib at home, she sleeps in bed with us. She did not want to sleep in the crib that they provided at all and woke up constantly. Also, anyone who has stayed in the hospital knows how much your sleep gets interrupted by staff coming through to check vitals, administer meds, take blood, etc. And, when you share a room it's double the fun.
They continued to take blood and monitor the infection. They let us know that they were using an aggressive antibiotic in hopes that they could clear the infection and not have to remove her port. We were told that they would need to have 3 consecutive days of cultures that came back clear (48 hours each) before they would be able to release Violet.
On the third night Violet was not sleeping at all. I knew this poor little girl needed her rest to get better and so at about 2 AM I brought her into my bed (a fold out couch) with me. The nurse came in and I told her that every few minutes Violet was waking up in the crib, reaching for me and then crying because I wasn't lying next to her since we co-sleep at home. I told her that I was going to keep Violet in bed with me because she (and I) needed to get some sleep. She informed me that it was not allowed and that if Violet was going to remain on the couch with me, I needed to stay awake while she slept. I told her that I wasn't going to be able to not sleep for an entire week (or more) so I would be needing to share a bed with my daughter. She said I needed to have a consultation with the doctor and sign papers before we could both sleep together in a bed and that no one was available to do that until the next day. So, Violet slept next to me that night while I stayed awake.
The next day I could tell Violet was feeling so much better. She was happy, playing and getting the attention of people who passed by in the hall when they saw her in the window.
The blood cultures were coming back clear which indicated the antibiotics were working! We were so happy that things were starting to look up for Violet.
A doctor came through with the paperwork to sign in regards to getting a bed to replace the crib so that Violet could sleep with me. She looked at me and asked me if I was aware of the dangers of Violet sleeping with me. I looked at her and told her that I was very aware of the benefits of my daughter sleeping with me. Quickly seeing that her scare tactic didn't sway me in the direction of keeping the crib, she handed me the sheet to sign and explained that my signature was needed to take the liability off of them incase anything were to "happen". Believe me, with Violet hooked up to an IV, fighting an infection in her blood and sharing a floor with kids who have various serious illnesses the last thing I find dangerous is my daughter sleeping next to me.
Later that afternoon, after Violet was playing in her window, I went to change her diaper. As I layed her down, I noticed that her tummy was a little wet with clear droplets. I lifted up her gown to look at her port and then all of a sudden blood started coming out of her line somewhere spilling all over her and the bed. I pushed the nurse call button but didn't wait. I flung the door open and yelled out that I needed a nurse. I was about to lose it at this point. Violet's nurse was coming our way and came right in to see what was going on. She took one look at it and looked out the door for help. Thank God, the IV team (the IV specialists) were in the hall walking right by our room. They came right in and inspected Violet's IV and found that it had broken right above one of the connections. The nurse asked if she should flush the line and the specialists told her no right away because if bacteria entered through the break she would be flushing that right into Violet's port and into her veins. I can't tell you how grateful I am that this specialist was right there to ensure this was handled properly because I was freaking out. Thank you Lord!
The specialist let me know that they would need to de-access Violet's port and access her with a new line. And, she contacted oncology and a new blood culture would have to be done to ensure no new bacteria got in. Just when all the cultures were coming back clear, here was a new obstacle and risk!
Violet was re-accessed and given a new IV from the IV specialist (who did a great job so Violet didn't make a peep) and then thankfully things began calmed down again.
Thankfully, since Josh had to work during the day (as hard as that was for him to not be with us at the hospital) my mom took Wednesday off and stayed with me and Violet. It made a huge difference to have her there with me. We got Violet out of her room and took her to explore the hospital. She had so much fun seeing all the animals on floors we hadn't been to before.
The next night my mom found a car for Violet to ride in and she loved it! I think it's so great that they have these around the hospital for the children.
On Wednesday night the doctors told us that the cultures were still coming back clear so Violet could be released if nothing came up on Thursday! The next morning they let us know that everything was still clear and she could go home. We were so happy and couldn't wait to get to our own place and our own bed.
Violet and I took our last stroll through the hospital while we were waiting to be able to go home. This time, I found a red wagon to take her in! :)
We stopped in the play room on our walk and found a basket with hats that people had made and donated for the little ones. So adorable! I picked out this sweet cream colored knit hat for Violet and then we were ready to go!
The past 10 days were really rough, but we got through them together and everything got better. Thank you so much to everyone who prayed for Violet, gave us encouragement along the way and your love!
Thank you for your updates as we love and pray for you always...Violet rocks!
ReplyDeleteI'm so sorry your little girl had to go through all that. I understand how difficult it must have been for you as parents. It is heart breaking, but it's also such a feeling of being powerless when one has to watch one's baby suffer. I can't believe they were making such a fuss about co-sleeping. My son has RB as well and, he never sleeps in his crib either, neither at home nor in the hospital. He is cancer free as of a month ago. We have been through some rough stuff concerning hospitals as well, but he's been spared bacteria in his blood thus far and, it is something we're very grateful for. I'm sorry the nurse hurt her. I know exactly how blood boiling it is when it happens. I'm so glad Violet is ok now and, I really hope all continues to go well for your little warrior princess.
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