Sunday, July 26, 2015

July 26 - Dear Nicholas Sparks (Guest Blogger Janice Crawford)

Dear Mr. Sparks,

So let's begin with Ange's story. First I guess that it is important to know that I am a single mother of two very special children. My first child Shane was born October 6 1991, other than being a preemie and only weighing 4 pounds 4 ounces he was normal and was in the hospital 5 days.

For my 31st birthday in June of 1990 I was delighted and hurt at the same time. I had developed blood poisoning and went to the local hospital ER room to be treated and before they started the treatment they did a pregnancy test. Much to my surprise with a 9 year old son and now very single I learned that we should expect a new baby probably in January to start a new year. My first visit to the doctor at less than 6 weeks to confirm the pregnancy I had a ultrasound there wasn't even a baby at this point just a yolk sack but I was very much pregnant and a little scared. One child at this point I thought was enough and Shane (my son) wasn't sure if he wanted a new baby brother or sister. All of my doctor's visits were normal and things were going great. I was getting very excited about having a new baby.

One week before Thanksgiving I had a ultrasound done at my request to try and determine what the sex of the baby would be. On the day of the ultrasound my mother and son were present and we were very excited about finding out what the baby would be. My son was amazed at the "railroad tracks" (spine) and then as the baby started turning and moving he was even more the only downfall was it's a girl. As the test progressed the technician finally stopped and spit out a roll of pictures and left the room. Thinking the test was done I proceeded to get dressed only to be told a few minutes later that in the excitement of showing my son and mother the baby that she had gotten the test in the wrong order. So we tried again and she spit more pictures out and left the room again. Only this time when she returned she told me that I needed to have a seat and see the doctor I knew something was wrong. After 10 minutes of waiting I was taken to the doctors office to 4 or 5 books on his desk and hear that he didn't know how to start with what was wrong and had to do some digging before telling me that my daughter had a Diaphragmatic Hernia (like I new what that was). I was also told that I wouldn't be seen at this office anymore because they were not prepared to deal with a condition they knew nothing about. I was seen at The hospital the Monday after Thanksgiving and went through more ultrasounds and a amniocentesis at the end of a very long day with more tests than I can remember I was told that if the amniocentesis showed any other defects that they would refuse to do anything to save the baby. Her hernia was so severe that they didn't think she had any lung at all on her right side and her heart was pushed into her back. At this time she was given a 10% survival rate. For the next 2 ½ months I went to the hospital 3 times a week for stress test and more ultrasounds.

I guess I went through the normal stress and strain wondering if I had done something to cause this to happen to my baby. After 2 months of soul searching and finally believing the doctors I finally decided it wasn't my fault after all. Me and Shane (my son) decided that we needed to pick a name. After a lot of looking and listening, we heard a song and decided that it was our name so we finally had Angelia Danielle Crawford named after Richard Marx's "Angelia." I decided that if nothing else it would look nice on a head stone. At this point we were being told that her chances were now at 2%. Finally on January 23rd we were admitted into the hospital to have a c-section (my choice after already having one and not wanting to add stress) for the next morning. So on January 24, 1991, at 11:36am, Angelia was born. My mother got to see her first since I was under. I was awakened in the recovery room and tried to get up, only to be sedated again. I woke up in my room and found a picture taped to my bed. All the tubes and wires were hard to take. I went to see her about 3:00pm and was totally unprepared for the sight even though I had been in the NICU unit when I was about 8 ½ months along. She was huge compared to my first child and it was hard to believe she was as sick as they said. On the foot of her bed was a sign that read ANGEL. I asked her nurse, Amy Vining, (my angel) who had told them her name. She said no one, they just decided as she was brought into the unit that she looked like an angel. I wonder sometimes if that was their way of telling me that they didn't think she would make it. As I went in to see her for the first time, I noticed that her feet were laying the wrong way. She also had clubfeet. At The hospital, up till this point, the surgery was done as soon as possible after birth, but her doctor, Dr. Shorner, (as close to God as anyone on this earth in my eyes) decided to wait for 3 days to give her a chance to gain her strength. So for 3 days we hoped and prayed that she would make it till her scheduled surgery date and then we prayed she would make it through surgery. She did, and thank God we never had to put her on ECMO. She was vent dependent for 2 weeks. Since I had her at the hospital and a c-section, I was a patient for 7 days. After I was discharged, I stayed with a Aunt and some cousins until she was moved into a room on the 5th floor. I moved into her room on February 4th and our siege began. As soon as she was put in a room her feet were cast up to her thighs and she started refluxing. Of course her doctors residents really didn't think she was so when they checked her cast because her toes were turning blue, she promptly refluxed in his face. Case closed about reflux. When Angel was 5 weeks old, I went back to the clinic and was told that I had cervical cancer and had to make some choices. Freeze the cervix and have it checked out every 6 months or I could have everything taken out. My choice was not to deal, so I had it taken out. At 2 months Angel had her 1st nissen and no help, well maybe for one week, then back to reflux. Angel had never nursed or had a bottle. As soon as you get in front of her face she would start refluxing. Actually she had projectile reflux with this. We were told not to handle her as every time she was moved (and even when she wasn't), she would start refluxing. In April I came down with a massive infection and was readmitted. She came down with pneumonia in May of 91 and at the same time one of the other babies on the floor beside us died. Stevie's mom, Denise, and I had become very close and this was hard on all of us. The day Stevie was viewed at the funeral home Angel had a night where she threw up blood and we called the resident on call to come check her and he was to busy in the PICU unit taking care of sick kids so I had a fit and insisted that her surgeon be called since his resident was too busy .

Well he finally came and told me nothing was wrong but he would do a blood crit and, low and behold, she had to have a blood transfusion. Last time that resident was allowed in my room. We had another nissen within 2 weeks because she was still refluxing. At this time they also put in a feeding tube. Angel had a central line until this point and we were finally able to leave the room without dragging a pole with us. This was heaven. We had never been allowed to leave the hall in front of her room until this point. I noticed that Angel was looking really yellow and we did some blood work to find out that she had a very rare form of hepatitis J or K Something they didn't even know how to treat. Her billerium soared at this point and she turned an ugly shade of green. Some of the nurses thought that the central line and her hepatitis were the main culprit. I really wondered about the last blood transfusion at this point. By this time I had been at the hospital for 5 months and didn't know when we would be allowed to go home. This had taken its toll on everyone in my family. My son not only had a sister who was very sick but he had lost his mother for 5 months. I never left the hospital for more than 4 weekends at this time. I was so tired of the hospital, I couldn't stand it. I would call my family and cry because I just wanted to go home and I didn't feel anyone was telling me anything. As I became more depressed her surgeon (unknown to me) had requested that I be reserved a room at South because they thought I would be having a nervous breakdown. I didn't just learn that I could go over to the library and do all the research I wanted, I was pulling up case files and then going back and asking all kinds of questions. When the doctors found out what I was doing they had all the medlines restricted to medical personnel only but by then it was too late I really started pushing to go home on my birthday, which was June 25th.

By this time I was, and had been doing, all of Angel's care for at least 3 months. I was finally released on July 1st,, only because Angels liver was so bad that she was on top of the liver transplant list and her surgeon decided that I should be able to go home because within 3 or 4 weeks she would have to be readmitted to wait for a transplant. He wanted me to say that I had been able to take her home. After 2 days, one of the nurses who had been taking care of her came to visit and we went to the NC Zoo, which was about 10 miles from my home. We went and got everything so I could feed Angel, except her formula, and of course she got hungry. She cried for about 45 minutes until we got home and fed her. Then she started refluxing again. Patricia, her nurse from the hospital, cried as much as I did and told me to call the hospital because she would have to go back. I did call all I could get was a resident who didn't know what to do so I stayed home and just dealt with the reflux. There was nothing they could do I couldn't, so when they called back 2 days later to tell me to bring her back, I refused. After 3 weeks she went back for a checkup and her billerium had dropped just 1 point but it was enough for me and I refused to have her readmitted. Her second checkup in 2 weeks showed it had dropped another point so we came off the transplant list and did a lot of praying. She still had reflux after every feed so I discussed options and was told there was none. Angel refluxed a lot when she was 9 months old and turned blue so we were back in the hospital for 1 month. This time I had a pediatric resident who came to my room and begged me to bring her to him. At this point she didn't have a pediatrician because none in my hometown knew what her condition was so therefore they wouldn't see her as a patient. So I finally got a pediatrician even though he was over an hour away.

Dr. Steve Novack was a Godsend. He was willing to help me make adjustments with Angel's feeds and go through a lot of questions about what would be normal for her. At 10 months, Angel got chicken pox. For 3 days I didn't sleep- nothing but try to make her comfortable. Finally I called Steve and was told to bring her to the ER (for my sake not hers). When we got there, we were put in isolation in the ER and then a whole herd of residents came in to see her. When Steve finally got down to see her he admitted her (worse case he had ever seen). Once in an isolation room on the 5th floor they started her on Aclyvir, a miracle drug in my opinion (used for herpes outbreaks). That night I could tell it was helping. We finally went home after 5 days.

Angel was still refluxing seriously and so finally when she was 11 months and 2 weeks we were readmitted for a 3rd or 4th nissen. I can't keep count. My original surgeon, Dr. Shorner, had left the hospital and gone to Dartmouth (our loss their gain) and we had a new surgeon.

We did not get along at all. I knew that Angel had severe scaring and that this next surgery would be long one. He didn't agree and told me that there was nothing in her charts to say otherwise and this surgery would last about 4 hours so I finally said, whatever. Within 1 hour of surgery they came to tell me that he had cancelled all other surgeries for the day and it would be awhile (8 hours) when he was done. It was a different story- all the sudden I knew what I was talking about. We were there for 5 days and then discharged (he didn't believe in keeping patients for 5 days). Well a day before discharge Angel started having severe loose stools, which I knew wasn't good but I was wrong again in his opinion, so home we went. At this time before we left, standing in the hall talking to one of the nurses who was eating potato chips, Angel reached over and took one and put it in her mouth chewed and swallowed. A first for her; she had never put anything in her mouth, not toys, fingers, nothing. I was a little freaked because we were told coming out of surgery nothing by mouth for 4 weeks. Well for the next 5 days we were in the pediatricians office every other day for dehydration. Finally when I started getting very upset, Dr. Novack called the hospital and was informed that Angel had a stool sample done the day we were discharged and it came back the next day with rotovirus. None of the staff had bothered to call. So back we went for 3 weeks (with one very mad mom). When we finally got that worked out she had turned 1 year old so the next step was off formula and onto pediasure. Pediasure at this time was hard to get and it took me 2 weeks before the order came in at my home this was also on a Friday and so at 1:00pm when I finally got it in my hands I called Dr. Novack and asked how to switch. Just change it over at the next feed he said. So at 5:00 that day I did and as soon as I put it in the feeding tube she started screaming so I called the hospital. Dr. Novack was gone for the weekend and I ended up with a doctor from the NICU, who promptly told me that nothing was wrong. I was overreacting and Angel proceeded to code. So I gave him a few choice words and called a ambulance. When the first responder got there and took one look at her foley cath coming out of her stomach and all these scars he panicked and told me he didn't know what to do. I panicked and told him to ignore everything except that she was wasn't breathing and had no heartbeat, which he did. They took her downstairs and put her on the back of a pick up until the ambulance got there and off to a different Hospital we went. When we got there they panicked, which made me worse and wanted to air flight her back to the first hospital. For the next hour the hospital and I argued with them and finally after being told that they could get here there before they could get the helicopter there (not to mention I couldn't ride) they agreed to put her on the ambulance and sent her. The ambulance driver had never been to this hospital and didn't even know how to get there. With directions from mom and 3 nurses we finally got on the road. Angel coded 4 times in the ambulance. When we got there a strange kind of peace came over me (being home I guess). After a rough night with 5 more codes, the next morning she was fine. After 4 weeks we were sent home with no explanation as to what happened. My opinion; vegal nerve reaction.

She was still refluxing some and so we started playing with her feeds and finally ended up with no more bolus feeds. Instead we went on a pump over night. This worked perfectly and she quit refluxing. We started seeing an OT for feeding. The first thing was fluid, after this we started solid foods (chips and fries), junk food slowly she started eating. The whole process took 1 ½ years. I wouldn't pull the G-tube until we had gone without it for a year. She has never been on the scale as far as her weight- always under and she still is.

She had her feet operated on when she was 1 and learned to walk with a 5 pound cast on both legs. This has never seemed to make any difference to her. She just got up and went. We still have splints and probably always will, even though these are just inside her shoes and not noticeable. She doesn't jump and run as much as the other kids, but she does her share. We see the ortho doctor every 2 years and he is very pleased with her progress.

She had to have her eyes operated on in 1999. They roll and she can't focus without seeing double and when she tries to focus, they turn. That drives me crazy and now that we are a year out, it seems to be happening again. So we will probably have to have it done again.

Now we are up to the present and I just found out July 6th 2000 that she has a severe hearing loss in both ears at high frequency sounds, so now we are going to get hearing aids. Her pediatrician has confirmed that the antibiotics she was on as a baby has caused this. We are still taking it one day at a time and thanking God we have that day.

We lost my mother on Nov. 29, 1999, and this has been hard on all of us. My mother was very involved in Ange's life and Angel thought of her as another mother. She was there day in and day out. Angel has started asking a lot of questions about her scars and things that happened over the years and I just try to be as honest as possible. My mom was better at that than I am. We are moving into our new house the first of Oct. and hopefully we will turn a new corner and things will get better.

Angelias mom, Janice Crawford (North Carolina)

No comments:

Post a Comment