Overwhelmingness….

I wrote a facebook post yesterday about caregiving. I expressed the emotions I feel because of this. Last week was a week of overwhelmingness. I feel that I had no other focus than Nicole and her medical issues. I was side tracked with my decluttering something I sometimes wonder if I will ever get through. Will my house ever be organized, clean and will I ever have peace when I walk in my door? At this rate, I have serious doubts.

Nicole went for a transplant evaluation on Nov. 20th. She saw the Surgical Director of Heart and Lung Transplant. This was on a Tuesday. On Wednesday I got a call that a cardiac MRI had been schedule for Nov. 29th. Normally, this is a simple procedure with no complications or worries but with Nicole and her medical issues we usually don’t have any situation with no complications and worries.

The question and worry with the MRI was that you can’t have any metal in the MRI machine/room. Nicole takes Remodulin which is a continuous medication which she gets delivered to her subcutaneously (under the skin) via an infusion pump. The pump is metal and can’t go into the MRI. There was much discussion between myself, the transplant center, the specialist nurse, the pharmacy nurse. We could have run 12 ft of tubing out the door which would allow Nicole to stay attached to her pump but the problem is there’s no way of knowing if she is getting the right amount of medicine etc. Then you have the issue of disconnecting the pump for a procedure that could take two hours. There would be nobody with Nicole (except me maybe) that has any clue about her illness or her medication and what to look for in case she starts to get sick from being disconnected from her medicine.

The pharmacy nurse called me on Monday or Tuesday I believe and said she had no clue how to attach the tubing together to get it to extend 12 feet and she is the one who trained us on this medicine. That didn’t give me a good feeling. On Tuesday afternoon I left a message for the ph specialist nurse. By Wednesday, I just didn’t have peace about this test and wasn’t going to allow her to have it without someone knowledgeable being there while she was disconnected. I still hadn’t heard back from the ph nurse and the call I made to the MRI place didn’t give me the answers that I wanted either.

It finally came to a head late Wednesday afternoon when I talked to the ph nurse who said that this is why they wanted to schedule the MRI at Orlando Health instead of Florida Hospital is so she could be with Nicole to monitor her during the procedure. The other issue I had concern over is because of Nicole’s heart issues she will involuntarily shiver and the MRI room would be very cold and Nicole is extremely sensitive to cold. All of these issues would slow the test down as you have to be perfectly still. The ph doc had initially wanted her sedated.

I felt much better after talking to the ph nurse knowing we would re-schedule and she would be there to monitor Nicole. I then called the transplant center and the heart transplant coordinator said she didn’t think the Dr. would have a problem with it. She said she was really nervous about it too and that she was going to go to the test and stay with Nicole even though she wasn’t knowledgeable in Nicole’s medication but she was an ICU nurse. I thought this was very nice of her considering she has only met Nicole once.

The ph nurse had asked me to email her after I spoke with the transplant nurse which I did basically telling her that she didn’t think the doctor would have a problem with changing hospitals but it needed to be set up ASAP so the doctor’s involved could get together and decide on a plan of action. The ph nurse emailed me back and said the ph doctor wanted to talk with the surgeon regarding Nicole’s testing and to find out if the transplant nurse could set this up.

I think that I have stated that I have a love/hate relationship with the ph nurse. I just don’t know what causes her to do some of things that she does…. control, position I don’t know. I think a lot of it is personal because I will fight her if I have to and she knows it. She may have the letters behind her name but I am with Nicole 24/7 and that is just as important.

Thursday morning I had called the transplant nurse before we left for rehab and told her what the ph nurse had said. Late that afternoon I get an email from the ph nurse saying that the two doctors had spoken that morning (the transplant center doesn’t waste any time) and that the ph doctor was out of the office until Monday and she would get back to me on Monday with the “new plan.”

My question is, why did you need to tell me this? So I could spend the rest of the week/weekend wondering. Thursday evening we had our holiday party at the PH support group and my first meeting as one of the co-support group leaders. One of the ladies from the transplant center was there and had told me that the transplant coordinator had told her to tell me that they weren’t going to proceed with the MRI but were going to do a CTA scan instead. This is all she knew though. I don’t know who is scheduling it but I would assume that it will be the ph doctor as I didn’t hear from the transplant center on Friday. All I know is this test will take less time and she won’t be detached from her pump. They will also inject dye into her to see how it moves through her body or heart.

Needless to say, it was a very, very stressful week where I had little focus on anything else besides Nicole. Add to this on Friday I got a call from the home health nurse to schedule Nicole’s next site change. I have to work it around a doctor’s appointment at the transplant center on Wed., with the lung transplant director, a echo on Thursday at the cardiologist and company coming in for the weekend. We have scheduled it for the 11th so the CTA scan needs to be scheduled prior to that or it will have to wait until after Christmas or New Years. The question will remain will she be able to wait until the 11th. She isn’t having pain but she is starting to have an allergic reaction at the site which is frustrating. Hopefully, she can deal with it for another 9 days but if she starts bleeding at the site or starts having pain at the site we will have to change it sooner.

As my personal blog is called …. that is A Day in the Life…

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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.

4 thoughts on “Overwhelmingness….

  1. kristin

    Jane, I just want you to know, again, that I am thinking of and praying for you and Nicole every day. I wish I had some inside track to God to help make your journey less painful, but I can only hope that all of us who keep you in our prayers can help in some way..

    kristin

    Reply
  2. Avatar of ejourneysejourneys

    Jane, this is just so much to deal with. I agree with Kristin — I am holding you and Nicole in my thoughts and prayers. You have been facing this all head-on — and educating us on Facebook with your PH Awareness posts to boot. You’ve got a lot of heart and a lot of guts (in the best way). *Hugs*

    Reply
  3. Avatar of BobBob

    Jane, You are in my thoughts and prayers. I also feel so overwhelmed my head is spinning. Hope all goes well going forward fo you and Nicole…Bob

    Reply
  4. Avatar of Bette

    Hi Jane,
    One test, one challenge at a time – and you are doing it! so very well (:

    Thinking of you today as Nicole has her echo. I hope you’ll soon have a reprieve from the tests, giving you time to think and process.

    Anxious to read your updates.

    Reply

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