On February 2, Heather had been complaining with rapid heartbeats for several days. After talking with a doctor for the second time that day, I was told to try and get her on to the emergency room here at Arkansas Children's Hospital. Upon arrival to the E.R., they told me her heart rate was over 250 at times; so they called down a Cardiologist, who admitted her to the Cardiovascular Intensive Care Unit (CVICU).
After running some tests, it was felt that this episode may have been due to a toxic level of her thyroid medication. Heather had been placed from an IV dose to an oral dose of thyroid medicine a few months before. When her levels were still a little low, the doctor had increased her dosage. As you have previously read, Heather doesn't absorb properly so she sometimes requires a little higher dose than some her size. For some reason, Heather's body decided to absorb her medication and her levels got too high and toxic. There was no way we could have known she was going to do this all of a sudden, it just happened.
They immediately stopped her thyroid medicine until her levels got back down then she was started back on the IV form. After looking over heart tests, they felt like she needed to be started on Digitalis and another heart medication because the iron has damaged the heart. She stayed four days in the CVICU, then was discharged to the Ronald McDonald House across the street.
The following week, after seeing her Hemotologist, he called the Cardiologist to come take a look at her since her heart rate was a little fast again. The Cardiologist told her that she needed to go back into the CVICU to be started on another drug to try and control her heart rate. It was then determined that the iron has caused the heart to get weaker. The bottom part of the heart isn't working so the top takes over and she gets severely Tachacardic.
That weekend she went into a Tachacardic spell that gave us all a scare and they had to start her on an IV drug to slow it down. After consulting with the doctors, the Red Cross was called in to contact her brother in Germany. By the time he called us back, she had stablized and we decided to hold off on him coming home. The following week, he did come on home for a week stay to see her. They finally got her heart rate under control and she got to come over here to the Ronald McDonald House again.
After a week and a half out of the hospital, she began having a few rapid heart rates. The doctor decided to admit her back to the CVICU to adjust her medication some more. That really disappointed her, since she had planned on going to see Garth Brooks perform in Memphis the next day, with a nurse going with us. She understood later why she needed to go in though.
She only had to stay in the hospital that time for the weekend, and then she got out to come here again. We had planned on going home the following week, but she had been running a few low grade fevers and getting nauseous. Her Hemotologist ran some blood cultures in his clinic on the Wednesday before, and we had planned on getting blood on that following Monday and going home. Well, it wasn't to be.
The following Monday, her doctor called us back and told us that the lab had called and said she had a yeast fungus in her central line. So she had to be admitted to the Hemo-Oncology floor of the hospital to start on the anti-fungal medicine. Later that week, she started having some problems with her Kidney function tests so they had to change medications to straighten that all out. Then she started having severe pain in her stomach and sides.
They ran cat scans and ultrasounds on her and saw that her gall bladder may be the cause. After the surgeons reviewed all the scans, they decided that even though it was enlarged, the gall bladder didn't need to come out. They had her on IV Methadone during all this time and that helped relieve her pain.
Then, she developed fluid in her lungs causing Pneumonia for the second time. She was immediately started on IV antibiotics for that. Her platelets were dropping daily, so when she started having bleeding, they gave her platelets for the first time ever. She ended up having them four days in a row, and after telling the doctor she wanted to go home, he let her out to come over here to the RMH.
The very next morning she woke up all swollen and her nose started bleeding again. The doctor told me to bring her to the clinic. After doing bloodwork and taking an xray, her Hemotologist came in and talked to her. He told her that the fluid was from the heart not working properly and that he didn't know how much time we had left with her. He told her he was going to try to give her a dose of IV Steroids (500mg) and the I.V.I.G. to see if that would help her platelets some. He did a great job in telling her that she was going to only get worse, and I know it was just as hard on him to tell her as it was for us to hear it. He has been treating her for a long time.
After talking to the pain management team, they told her to call them when she was ready to come into the hospital to start IV pain management. They told me to double her oral methadone to see if that would help her rest some. The next day, we went to the zoo for about an hour, and then she was ready to come back and go back in. They started her on IV Methadone and worked on trying to pull off some of the fluid. While she was in for this, they let her get out on passes anytime she felt like going anywhere.
This past Tuesday, they made the switch to a continuous IV Morphine pca pump. At first she was scared to push the button, so we had to encourage her to push it some. She came over here on Wednesday and so far she has done okay on the pain pump. She has some good days and bad days, but that is to be expected.
She has trouble eating and keeping food down at times. She is taking two pills twice a day for nausea, but at times it doesn't work. We may have to go to IV drugs for that eventually. The doctors are letting her call the shots on what she wants to do. She is on oxygen all the time now since she has so much trouble breathing from the fluid collecting.
Also this week, Dr. Stine made the decision to stop her Desferal that she has been getting since the age of 2. He told us that this was just one less thing we would have to worry with since she is at this stage of the illness. He said the damage was already done to the heart and in his experiences, the heart couldn't be reversed. He told her that she could call him if she had any questions or problems and they would be there for her.
The doctors, nurses, social worker, and staff of the hospital as well as the Ronald McDonald House has been very supportive to us during the past ten weeks. I don't know what we would have done without them. We would like to take this means to thank Doctors' Stine, Becton, Saccente, Erickson, Seib, Koh, Black, and all those who have treated Heather in the past. Also thanks to the many nurses that have given her such great care through all of this, and to Greg, her social worker. Thanks to each and everyone of you.
Our main goal now is to keep her tuned up as well as we can, so she can make her trip to Nashville this summer to Fan Fair. She has looked forward to going there since last summer. We don't know when we will get to go home and stay for a while, but right now we are comfortable here. Our home is a little over three hours away and until she gets more stable with her blood counts, we feel safer here. Hopefully, we will get to go home for a few days in a couple of weeks.
I know the dates on all this is sketchy, but it was hard to write this down. I will try to give weekly updates whenever I can. Since we brought her computer up here, Greg, her social worker, contacted an internet server, Aristotle, here in Little Rock. They are providing her with free internet service while we are here. So a great big THANKS to Aristotle for doing this for her.
We would like to take this means to thank a lot of our friends out there for their cards, prayers, and support for everything they have done for us. Before you leave, take time to go back to her homepage and sign her guestbook. She loves to look and see what people have signed there. Take care and God bless you always.
August 8, 1998~~~A lot has been going on since my last update on Heather. Please forgive me for not keeping you informed on what's been going on. I will try to bring you up to date as briefly as I can.
Heather has been having some good days and bad days. She is growing weaker and more tired each day. She has been getting blood transfusions almost every week since my last post. She, also, has been given units of platelets whenever she needs them. We try to hold off on getting the platelets until she has to have them for bleeding problems.
Since May, Heather has been losing weight, steadily. She is having more trouble with digestion and eating. Last month, her doctor put her on Ativan at night to help her nausea during the tube feedings. It seems to help some, but her weight was down to about 56-57 pounds last week.
Her doctor has talked to her about where she wants to be, whether be at home or up here. She has chosen to be up here where her doctors and nurses are, so we are going to be staying up here for right now. The trips back and forth every week here are pretty hard on her right now. She tires so easy. We do make trips home every two-three weeks when she feels up to going home for a long weekend.
Currently, Heather is still on the Morphine PCA Pump for pain, and since April, has been on a continuous pump with Zofran for nausea. She is on oxygen most all the time now. She gets daily I.V. pushes of these drugs: Lanoxin for her heart, Synthroid for her thyroid, and Lasix for fluid. She takes numerous pills and insulin injections every day too. She usually hooks up to her tube feedings at night for 12 hours, but somedays when she is sleeping, I add extra cans.
This past Monday, she had a cardiology appointment. Her doctor told her that her last 24 hr. holter monitor looked a little better. He said she was still having a few episodes of breakthrough tachacardia, but they were so brief, she probably didn't even notice them. He decided not to do another holter this month, which pleased Heather just fine. The only problem he was concerned with was her weight loss. He had to lower the dose of Lanoxin because of the drastic weight loss. She will go back to him in one month, unless she has some problems.
We see the Hemotologist every Wednesday for blood counts. Several weeks ago, he talked to Heather about "Kids Kalidescope". This is like a Kids Hospice program. A nurse came and talked to us about the program. A social worker from there has made several trips and a priest that works for them comes by too. They offer support and see if there is anything they can do to help us through this time and what is to come. They are all very nice and have let us know they will be there if we need them anytime.
Heather seems to be depressed more lately, which shows she knows what is going on. She has been sleeping more and more lately as she gets weaker. The heat has played a major factor in her not wanting to go out anywhere. I pray when cooler weather gets here that she will feel up to going out somemore. We want to thank all the people for their cards and letters to her to brighten her day. The cards always put a smile on her face.
A friend, who knew she like Luke Perry, finally contacted his agent by fax and told him about her. One night the phone rang here and it was Luke Perry. They talked for awhile just like they had known each other for a long time. He was so sweet, and the call really cheered her up.
She has seen several of her country music artists over the past few months. They are so good to her, and they just love to spoil her. She did get to go to Fan Fair in Nashville in June and had a great time. You can see her trip there at another link on this site. She finally got to go see Garth in April down in Baton Rouge two nights. We also went on Mother's Day to see him perform in Nashville. She has seen Tracy L. on several occasions, and we plan on seeing him this coming Tuesday, if nothing happens.
We would like to ask that you pray for a very special little 3 yr. old girl, Samantha, who has Leukemia. Samantha was just five months out of bone marrow transplant last month, when she relapsed again. This is very upsetting, not only to her family, but us as well. Heather has grown quite attached to Samantha and wants so much for her to win her battle. Samantha's brother, Cody, was the donor, and this week he underwent another risky procedure in the hopes that his cells will put her back into remission. Cody is going to be in the first grade, and Heather thinks he is a real trouper to do what he has done for his little sister.
December 18, 1998---Well, I just can't seem to keep the updates coming. Things have been pretty rough for us all. In October, Heather's doctor decided to have her brother brought home to see her, since she was getting weaker all the time. He came home and spent two weeks visiting her and doing things with her when she felt like it. We went on small outings with him and out to eat at her favorite places. It was hard to see him leave and go back to Germany, knowing there was a chance that he would never see her again. He will be returning to the states in February.
We did get to go home for the Thanksgiving holidays for a week. It felt good to be home, but it was also a nervous time too. Heather fell several times during that visit home and the trip really tired her out. She learned she liked sweet potato casserole. She felt like going out and doing a little shopping with her aunt for Christmas. We also went and got a tree to put up while we were home.
Heather is having more problems with her platelets, so she is having to get them almost weekly now and sometimes twice a week. Her weight got down to around 50 pounds. She is determined to keep going though. We go to clinic once a week for counts and blood and platelet transfusions as needed. Her heart seems to be stable right now.
She started having some problems with seizure type activity a few months ago. They ran some tests, and even though they didn't see any problem on the EEG, they decided to start her on some anti-seizure medication. She seems to be stable on the spells she was having, so the medication is helping her.
When asked last week if there was anything special she wanted to do in the next three weeks, she replied to her doctor that she wanted to go home for Christmas. We are trying to get everything done with her blood by early next week, so we can go home for the holidays. We are hoping to stay home for two weeks. We have a doctor that is going to check her counts while we are at home so I won't have to drive back up here for that. He will also give her blood if she needs it.
We also plan on taking her to see Tracy L. on New Year's Eve and New Year's Day, if she feels up to the trip. She has seen him several times over the past several months. As usual, he can always put a smile on her face, even when she is feeling real bad. Their time together is special to her, and he always takes the time to spend with her before or after his shows.
Heather is sleeping more and more now. She will just nod off even in a loud concert. She has fallen a number of times, which has sent us to the emergency room for platelets to stop bleeding. She still doesn't want to lose that independence though and wants to try and walk around the house. She will use the wheelchair on outings to the mall, which are not as often as they used to be. She doesn't feel like doing things like she used to.
She is having more trouble with breathing and almost has to sit up to sleep at night. The doctor ordered her a foam wedge to put under her pillow to help raise her up to make it easier for her. It seems to be helping some she said.
She is still on the pca pump for her pain. We have had to raise it several times in the past several months. She hates to complain though. She tries to hold off on saying anything about her pain until it is so bad.
We want to thank you all for the prayers for her little friend, Samantha. Samantha passed away on October 3, 1998. She was just a few weeks from her fourth birthday. Please continue to pray for Heather and all the others out there that are still fighting their battles.
Please check back soon for updates. I will try to post again in a few weeks. Take care and have a good day. May God bless you all.
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