Lydia is a very smart girl, she reads at a 5th grade level and is one of the top students in her class. She was awarded Student of the Month in September. She loves school. That being said she gets sick very easily. By mid November she had missed more than 20 days of school to fevers and sore throats. We took her to see Dr. R, the ENT who had done the
twins tonsillectomies when they were three, who we absolutely love. He is great with kids. Lydia told him that she was tired of missing school and just wanted to feel better, but she didn't want what happened
to me (I would suggest reading my story if you haven't to help understand events that will take place later) to happen to her. He assured her and me that it was rare for bleeding like mine to occur and that she should be just fine. He asked when we would like to have it done and Lydia said as soon as possible, not over Christmas break because she wanted to be better for her Baptism. So it was decided that on December 9th we would bring her in to have them removed. She had to have a pre op first and weighed in at a whopping 51 lbs. I say this jokingly because for her height and age she is considered underweight. She eats well but has a very high metabolism.
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Lydia waiting for surgery December 9th 2013 |
She is such a brave girl, she went in with a smile on her face. Excited that she would start to feel better. She did not cry once. She was taken back and the surgery it self was fairly uneventful. We met her in recovery and where able to take her home with in the hour. We were told that it was normal for her to vomit the first day because of the anesthesia but anything after that was cause for concern. And to make sure she drank plenty of water.
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Taylie taking care of Lydia December 9th 2013 |
Her siblings were very worried about her, she is their rock. They took great care of her though making sure that she had her pillows and blankets and anything else she might need. Taylie and Lydia slept with us. Lydia so we could manage her pain and Taylie because she wanted to care for her sister.
Lydia vomited several times the first day as expected, but it continued for several days after. Anything she drank or ate didn't stay down for long. I was in contact with the Doctors office every single day. We pushed fluids, we made her eat, we changed pain meds but nothing seemed to help. It got to the point where she would sleep most of the day, couldn't walk by herself, and had to be spoon fed she was that weak. We were very concerned for her, but as a parent seeing her everyday we didn't see how quickly she was deteriorating. The doctors office final gave her something for the nausea on Friday. She seemed to do much better after that. She was able to keep food and liquids down longer but was still very, very, weak.
Saturday was our Ward Christmas party. She wanted to go so bad that I carried her in and Alex carried her to see Santa. It was here that many people including her Aunts and Uncles saw her for the first time. Many people approached us about how she was doing and feeling and everyone of them kept saying "She looks really bad". We were encouraged though that she was now eating little bits and drinking and thought she was on the up and up. She had even started to get a little of her spunky personality back.
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Lydia the night of the Ward Christmas party. |
Sunday came and she still seemed to be improving. All through the week she never cried. She is a brave girl. Sunday as we started to drift she started to vomit again. I held her hair and Taylie patted her back. I didn't have my glasses on and without them can't see 5 inches in front of my face, so when Taylie said "Mommy Lydia has blood" I scrambled to find them. Sure enough she was vomiting up lots and lots of blood and clots. I called for Alex and told him that I was taking her to the Emergency Room. He would meet me there later once we could get ahold of my parents. My mom watched the kids, the boys having no idea what was happening but Taylie was a very scared little girl. My Dad and Alex gave her a blessing. And within 20 minutes of arriving in the Emergency room she was once again in surgery. I could see the scared look on her face, but she still was brave. She didn't cry a single tear.
She was in surgery for almost 2 hours. When they were finally done about 1 am we were told that she had lots of old blood in her belly which was the reason that she had been so sick and unable to keep anything down. It didn't matter what we would have given her for nausea or change in medications she would have remained very sick. They admitted her because of the blood loss and because in one week she had lost 12 lbs. She was under 40lbs and they were very concerned for her as were we.
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Lydia in her hospital bed December 16th 2013 |
I want to make one thing clear, Alex and I love Lydia very much. We had no idea she was so sick. There was no way we could have known. Yes she dropped a lot of weight but we were with her everyday and when you are with someone everyday it is hard to see the change that to others who haven't seen her for a few days would notice immediately. We were in contact with Dr. R who had done her surgery everyday. We wanted her to be better. It is not fun watching your child be so sick. But she never threw up any of that old blood, just the food and liquids we fed her. Why I don't know, but until she started throwing up the fresh blood from the scabs rupturing we never saw any blood. I also want to say that the Doctor who did her second surgery did a wonderful job and was so kind and sweet with her. He told her that she was the bravest patient he had ever seen as she still through all of this hadn't cried.
Alex left to be with the children and I slept in the hospital bed with Lydia. She was in a lot of pain and rightfully so, she had just had major surgery all over again. The nurses though had orders that until she ate a certain amount of calories she could only have Tylenol. And that she had to eat and drink a certain amount in an allotted time period or it started all over.
They never told Lydia or I this. All we knew is that if she ate or drank this then she could go home! She awoke at 10am and I gently coaxed her to drink and eat. And then they would add something else that had to be ate and drank while still not giving her anything for pain but Tylenol. By 4pm my brave, sweet girl, broke into tears. She felt betrayed. She felt like they were dangling a carrot in front of her but no matter what she did she would never be able to obtain it. She missed her siblings, she missed her own pillow and special blankets. She missed her home. And she didn't want to be in pain anymore.
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Lydia in as she calls them her ugly green socks. |
Watching her break down, holding her while she cried, and feeling like somehow I betrayed her trust to because I kept telling her "just eat this and we can go" broke my heart.
I felt so alone. It also infuriated me. I called Alex and he said that we were taking her home that night no matter what and that they needed to give her something for the pain or he would come pick me up and we would walk out against medical advice.
I went out to the nurses desk to talk with them. It was about 5pm then and they FINALLY told me about the certain amount in a certain time period. I was livid. Lydia isn't a baby, she is a smart girl and could understand the reasoning behind this. And I as a parent could also, had they told me at 10am when she woke up instead of 5pm I could have been pushing her harder to eat so she could go. So she would have never felt betrayed. I asked about pain management so she could eat better to which the nurse replied that "she is 6 days post op and shouldn't need pain meds"
And that is when the momma bear in me came lose. I told them that I had this very same surgery just last year and I knew the pain that she was feeling and that she had major surgery and her recovery process had started over and it indeed is very painful. BECAUSE I HAVE EXPERIENCED IT! The nurse looked at me with disdain and said she doubted that she was in that much pain. I told her that they get the doctor on the phone and get an order for something besides Tylenol to ease her pain or get me the papers to leave against medical advise because if they were not going to treat her pain here so she could eat and drink and begin to recover than I would take her home where I could manage her pain because she still had medication left from the original surgery. To which the nurse sarcastically replied: We are not going to let you take her home just so you can keep her doped up.
I thought I was angry before, and luckily for that nurse I am not a violent person, because I wanted to jump that counter and hit her. It is her job as a medical professional to do no harm, to keep her patients and the family informed on what is going on so that the patient and the family are not frustrated and the recovery process is easier. They gave me no information on what was going on until I came to them. They should have been up front with me and Lydia about what was expected from her in a certain time period so she could go home and so they could give her something stronger for the pain. I called Alex and he said to meet him at the front doors he was on his way to pick us up.
I again went to speak with the nurse and told her again to get us discharged. Because one way or another she would not be staying there another night. I think she realized that they should have had better communication with us. She worked to get Lydia discharged and I still was having her eat and drink so that they could see that yes, we want her to feel better, that we just don't want to dope her up, and while they where working on doing what I wanted, I was trying to encourage Lydia to do as they wanted. To eat and drink in a certain amount of time.
They were able to get her discharged with in the hour and what do you know they even gave her a prescription for additional pain medication because the Doctor had ordered it. I don't think the nurse was happy about it. But I don't care. The doctor knew that this surgery would cause more pain. And I am sure that he had prescribed it for her to be given if she ate and drank in a certain time period. What happened was a failure to communicate these instructions from the Doctor to us. And I believe that had I not gone out there to find out what was going on we would not have been told. And that they would have kept her for another day. She was so relieved to be home and once she was given her dose of pain medication was eating and drinking like a starving person which I am sure she was.
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Lydia the day after her second surgery December 17th 2013
Does she look over dosed to you? |
Within 24 hours of being home she looked better than she had before the surgery, she was eating and drinking and was no longer sick to her stomach. It was amazing to see such a change in such a short amount of time. It was so nice having her home with us and seeing her get better. Taylie however after watching Lydia throw up blood and then me rushing her off and not bringing her back was very concerned. She slept between Lydia and I and about every 15 minutes over the next 3 nights she would wake up with blood curling screams. "Mommy! Lydia!" over and over. Grasping for our faces and when she would find them hold our cheeks against her little ones saying "don't leave" until she would drift off and her arms would loosen and then she would jerk awake again. She didn't understand what had happened, why I had to take Lydia away so fast. She just knew that we are her safe zone and without us there she felt lost.
By Christmas Eve Lydia was her old self again, still very, very, skinny but happier than I had seen her in a long time. I love her spunky personality. And as of the date of writing this she has gained all the weight she had lost back. She now is 50lbs again.
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Christmas Eve 2013
She is just so fun and loving and great to be around |
I believe that everything happens for a reason. I believe that I had to go through what I did with my tonsils so that I could be an advocate for my daughter when she had hers done. It really helped me to understand the atonement better. Jesus is able to be our advocate with the Father because he knows our pain. He suffered that we may return to live with Them. And so that He would know how to comfort us. And He willingly volunteered because of His love for us. I would suffer the pain of my tonsillectomy a thousand times over if it means that I can stop my child from having to feel that same pain. I realized that as I was hurting, my heartbreaking for my child, wanting to take the pain away from her but knowing that I couldn't made me turn to my Heavenly Father. It made me think of the love He has for His children. I am so grateful for the atonement, that we can live again as a family unit. And for my older brother Jesus and His love for me that makes it possible. And for my knowledge that I AM a Daughter of God. And that He loves me and that I am His. And through the Atonement I can return to live with Him. I am thankful for the Priesthood and what a blessing if is in my life. And for the men in my life that keep themselves worthy of that Priesthood. For I know that through Heavenly Father and his Priesthood I have seen miracles happen. And for the power of prayer, from family, friends, and my fire wife sisters. I could feel your prayers keeping me going. Thank you.
For the record, I believe that Healthcare providers are doing their jobs because they care. I would never recommend that someone should leave care against medical advice. However as parents it is our job to protect our children. And once I lost all confidence in this nurse and the care that they were providing for my child and that she was not being open with me about my child's care I believe that she was doing her more harm than good. And it became my responsibility at that point to make sure that Lydia was getting the best care she could get. Whether it was at home with us or at a different hospital. We would have taken Lydia elsewhere if we felt that she was not doing better. We would never withhold medical care from our children. If you are a healthcare provider please be open and honest with your patients and their families so that they don't feel left in the dark and betrayed. Make sure they understand what is expected of them. So that they can assist in helping themselves or their loved ones get better.