Update

Nicole with her gift from Trish and Richard.

Nicole with her gift from Trish and Richard.

This is an update about Nicole and her hospital stay. I put daily updates on facebook so if you are friends with me there this is a duplicate. I will put this in a diary format.

Saturday, Jan. 19, 2013

Nicole started running a fever of 102.9 in the late afternoon/early evening. She had an episode of chills where her teeth were chattering and she was covered with at least two quilts. I first tried to email the ph nurse to get guidance on what I should do. I got an out of office response. I then called the doctor’s office and waited for the on call nurse to call me back. I told her what was going on and she said she would talk to the doctor on call (which was Nicole’s doctors partner). She called me back and told me to take her to the ER and preferably at ORMC (Orlando Regional Medical Center) where her doctor has privileges. Our wait wasn’t long and we got into a room right away. The nurse on call from Dr. T’s office spoke with the doctor himself and told him what was going on with Nicole which was basically just the fever with no other symptoms except for swelling/inflammation around her infusion site that ran down into the pelvic/genital area which was just changed 5 days before this. She had a chest x-ray and then they took her for a vascular sonogram to make sure that the veins and such from her catheterization site was okay. That came out fine. The doctor admitted Nicole. They did a blood culture and then started her on antibiotics. I think we were taken up to her room on the PH floor about 11:30 p.m. or so.

Sunday, Jan. 20, 2013

This day was like a blur probably because we (Nicole and I) didn’t get to sleep until about 2:00 a.m. and was awake pretty early and because I didn’t write much about it on facebook. Nicole had our friends Margaret and her daughter Elizabeth come and visit. It was during this visit that Dr. T came in on his day off to see Nicole. He talked about the antibiotics and that he wanted another blood culture test. She had another bout of chills which always freaks me out. She is shaking so bad. Her potassium level was low so she had to take 4 potassium horse pills during the day. Rick came to visit for the day and he took me home to shower and get some stuff for the hospital.

Monday, Jan. 21, 2013

Dr. T was in early around 7:00 a.m. I almost slept through his visit. Going to have a CT scan to rule out appendicitis. Potassium levels are back up to normal. Her magnesium levels are low so will give her this through IV. Fever has broke but her platelet count is critically low. Nicole had a blood gas done which is blood taken from the artery in her wrist. It came back with low oxygen levels in her blood… duh… do you think???? She had a cat scan to rule out appendicitis. Don’t know the results. Had a ob/gyn come in. Nicole had major swelling in her genital area which was a cause for concern. She had her first pelvic exam (YUCK). The ob/gyn ordered a wedge pillow for her and told her to shift herself (she can’t sleep on her right side because of the new site) back and forth as she believes the swelling in her genital area is due to fluid retention. They have tested her for MRSA waiting to test her for c-diff so she is in isolation because of this. You are suppose to wear gown and gloves if you come in the room precaution only they believe the diarrhea is from the antibiotics and the Remodulin causes diarrhea also. I have been around her forever so I am not concerned. We will see how these come back. Still waiting on word on the blood cultures.

A concern is that her platelet count has dropped into the 40′s so wondering why this has occurred. A normal count should be above 170 (which is actually thousands). Nicole’s platelet count has ran low since at least diagnosis but not ever this low. I had a thought that maybe her not taking iron since Friday had something to do with this???? Since this time I found out the iron doesn’t affect the platelets.

Nicole’s pump malfunctioned yesterday so I only have the pump she is wearing now but since we are on the PH floor they have one for her if need be. An Accredo nurse will be bringing me a new one tomorrow as she has a pump change tomorrow.

They continue to give Nicole two different IV antibiotics which I am told are very strong ones. The fever has broke.

I wish Nicole was in better spirits but she isn’t and frankly I don’t blame her with her PH dr, hematologist, internal medicine dr., ob/gyn and the nurses all poking at her belly that is sore from the site change as well as having a IV come out and having to put in another one, being pricked for blood in both arms more than once, the hand twice, and the wrist, along with a pelvic exam (for the first time) because of inflammation in that area she is a little crabby.

I really do hope we can leave tomorrow but I’m not expecting it. I hope that Nicole won’t have another meltdown about it. I wish I could make it better for her. She dropped her pump again and so now we are using the hospital’s pump. I will have to call Accredo in the morning for another one.

Tuesday, Jan. 22, 2013

Today, is the third anniversary of Nicole’s diagnosis. One of the nurses asked her today how old she was and she said “18″ and the nurse said when were you diagnosed (we are on the PH floor of the hospital) and she said three years ago today and she said so you were just a little girl of 15 years old. She said “you had to grow up fast”.

When her PH doctor came in this morning he said to her he was going to dock her allowance about her breaking the pumps (she had broke the other one last night at 11:00 p.m. or so and now we are using the hospital’s pump) and that if she kept dropping them he was going to duck tape it to her. When Nicole asked him if she could go home today and he said “no” she started crying. He felt bad. He told her how amazing she was for at such a young age all that she has gone through since her diagnosis and the strength that she has shown.

Short version of day…. only one round of blood work. Potassium was good but magnesium still low. Dr. was starting her on acidophilus to counteract the antibiotics. Had the internal medicine, infectious disease, and several surgeons come in. I believe it was the infectious disease doctor was switching one of her antibiotics to another one. They couldn’t see Nicole’s appendix on the catscan but they did see a spot on her colon which was at the part of the colon where it goes into the appendix called the caecum. They believe (depending on the doctor) that she has colitis (inflammation of the colon). Normally, at this point they would take the patient to the OR and do a laproscopy and look at the appendix through a camera inserted through several incision in the abdomen. Due to Nicole’s health issues this can’t be done unless it is the only option and at this point it isn’t. So it is just a wait and watch game. The last surgeon to come in tonight at 8:00 p.m. was not my favorite and basically said “shouldn’t be giving antibiotics for something unless we know what it is for and that she will have to be taken off them eventually”. He also said she should see a gastroenterologist … been there done that…

Her platelet count held steady today at 47 and the drop could be attributed to the fever and whatever infection she had.

It has been a very emotional day as nobody can tell her why she had her fever and she wants to go home. She is over tired and hasn’t gotten the rest that she should. I did take her for a walk around the hall. I was pushing her IV machine and she was carrying her portable oxygen as opposed to the big tanks.

Wed., January 23, 2013

Dr. T would still give us no clue as to when Nicole was going to get out of the hospital but he would start the ball rolling by getting her off IV antibiotics and getting her on oral ones. She is still very emotional. My father in law picked me up and took me home so I could drop off and pick up stuff. I took a quick shower, took a video of the animals for Nicole and grabbed what I thought I would need for another couple of days. It was much quieter and not as much chaos :) for the rest of the day. The internal medicine doctor came (I really liked her) and said she could go home today (unfortunately, it isn’t her that makes that final decision). Next about half a dozen surgeons walk in and basically say that they are no longer involved as she does not need surgery as she more than likely doesn’t have an appendicitis. The infectious disease doctor came in and said he was going to switch to oral antibiotics (actually I think that they had already started her on it). She is going to take two different antibiotics as well as probotics only while she’s on the antibiotics. The PH doctor is going to switch her pain meds from tylenol/codeine to hydrocodone which seemed to work better for the pain and tolerance. The infectious disease doctor said I would have to take Nicole for a follow up with him and that she would be on antibiotics at least two weeks. He still is concerned that the appendix couldn’t be seen from the catscan and isn’t sure why. I guess some people are born with no appendix or it can shrivel up. He mentioned a colonoscopy for ruling out IBS (irritable bowel syndrome) or Crohn’s disease but we will see about that. He also said that he heard that Nicole was becoming sad and depressed and as long as she tolerated the oral antibiotics she could go home. We are just waiting on her PH doctor to confirm this … he better be able to run quick if he comes in tomorrow and says she can’t go home. I don’t think Nicole will handle it well. According to hospital policy they have to change Nicole’s pump every two days instead of every three days like we do at home so she has a pump change tomorrow. There should be a pump waiting at our house tomorrow morning. Didn’t see the hematologist today but they don’t know what to do with Nicole so it is a waste of time anyway. The infectious disease doc had a stool sample taken for campylobacter which is a bacteria you get from undercooked chicken. So I have my fingers and toes crossed that we will be going home tomorrow.

Thursday, Jan. 24, 2013

The internal medicine doctor came in and was surprised that we were still here. The infectious disease doctor said based on Nicole’s blood work and the inflammation markers there is no more sign of infection in her body so she only has to take the antibiotics for seven days. I have to take her for a follow up with him and he will make this appointment. Her platelet count is still holding steady in the 40′s. She will need to get another complete blood count on Tues., Jan. 29th.

Every day that Nicole has been here in the hospital Dr. T has been in to see her between 7:00 – 7:30 a.m. but today he doesn’t come in until about 2:00 p.m. I was outside her room talking on the phone when he went to go in. I asked him if he could run fast if he wasn’t going to let her go. He said that one doctor hadn’t signed off and he would take care of it and she could go home. We talked about her low platelet count and that for the time being nothing would be done about it unless it went lower. Also, talked about testing for Crohn’s and IBS and was told that at this point it was jumping the gun. To diagnosis Crohn’s they have to do a colonoscopy which requires being put out and this is very dangerous for Nicole with her illness.

It took about two hours to do all the paperwork. I had a PH Support group meeting that night at this same hospital and there was no sense of me going home. The other support group leader asked me if it was alright with Nicole that I go to the meeting. This is when I found out that she didn’t want me to go and she wanted me home with her. They gave us the scripts to be filled both the internal medicine and the infectious disease doctor’s gave us scripts for Tylenol/Codiene but Dr. T forgot to write a script for hydrocodone. I will get it in two weeks when she sees him for a follow up. As we were leaving and packing the car I tripped as I didn’t know the wheelchair access area had ended and fell forward into a pillar with a pipe or something attached to it. I bruised my knee and hand as well as took a nice hit to the chest. The security guard came over and took my name, number, my relationship to Nicole, and what room she had been in. I felt like such a stupid klutz.

Nicole and I are both tired from our lack of sleep. Nicole has been having some serious nausea problems from the antibiotics I am assuming. I told her to try and eat a little something before she takes it. It says it can be taken with or without food. The official diagnosis on the discharge papers was colitis (inflammation of the colon). I’m not sure how she got this but I hope that it isn’t a reoccurring thing or she will need testing to find out why she keeps getting it.

I want to thank those of you who sent me emails or messages through the site. I want to especially thank Denise who called me and kept tabs on us. I also want to thank G-J who gave me so much support through text messages all week and to Trish and Richard who sent Nicole a beautiful basket from Edible Arrangements. Each of you made a very stressful week a little less stressful and I thank you for that.

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Avatar of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe. I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

6 thoughts on “Update

  1. Avatar of JoJo

    Jane,

    Praying for Nicole and for you. I’ve been intermittent with my time here and had no idea all that was going on. Little wonder you fell outside of the hospital. You’re lucky I’m not there right now cuz you’d be gettin’ a great big ole Marine Corps worthy hug. :-) Take care and keep moving even if it is one step at a time.

    Reply
  2. Avatar of Sunshine=Sometimes

    Dear Sweet Jane! I want to say I know you are so courageous and brave. Just like Nicole! And? (Since I am not on Facebook?) For writing as soon as you could about your all situation! I think in a way all of our prayers were answered so far? Let us pray they will be in the future also for both Nicole and you! What a concern all of this was and it was no wonder Nicole wanted to go home and be with you the night you arrived back home. But? (And this is just my own obstacle talking?) Please take care of yourself too, Jane! With much love! S=S! {{HUGS}}

    Reply
  3. Avatar of DeniseDenise

    Hi Jane–Thank you so much for posting this update. I hope that you all have gotten rest that only your bed at home can give.

    How is Nicole feeling today? How are you doing?

    Reply
  4. Avatar of TrishTrish

    Jane, Thanks for the update. I hope things have steadily improved since you’ve been home and that your own bumps & bruises are feeling better. What a week you had! I have to say, though, that you were an amazing advocate and cheerleader and supporter during that whole ordeal. You did a great job and consider me standing in line behind @Jo to give you a hug too! :-)

    Reply
  5. Avatar of ejourneysejourneys

    I’m in line behind Trish!
    Haven’t been on FB for a couple of days — I hope you and Nicole are well into settling back in at home. You’ve done an extraordinary job not only being an advocate, supporter, and cheerleader, but in all your FB updates and this one. I hope you’ve had a chance to put your feet up and that Nicole has spent some quality time with Ridgely. :-)

    Reply

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