Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Friday, August 19, 2011

The Donation by Donna Lee

As promised in Prayers Received and Accepted, Donna is sharing the details of harvesting her stem cells for her brother.

On Tuesday, the 16th, 9 am, after giving myself a final shot of Nuepogen, I was hooked up to the machine which draws the blood from my left arm, collects my stem cells, transferring them to a bag, and replaces my blood back to my body (heated) through my right arm.  I expected it to be like giving a blood donation but soon discovered that it was a little more trying then that. 

I was all set up on my lounge chair, legs up, head back, laptop on my knees, books by my side and snacks.

I thought this would be a 6 hour leisurely process, including movies, books and food; my body reacted otherwise.  Because calcium is being drawn from your blood, you start to shiver, shake and tingle.  It was a very strange sensation, which means you need to suck on some tums and be hooked up to calcium. After awhile, that tingling sensation turns into numbness, exhaustion and apathy.  You feel as if your soul has been drained out of you.  As a matter of fact, you feel just plain lousy.  However, when I was told that the bag is filled, the target has been reached and you are being unhooked, I knew I would have done it again.

Throughout the process I held hematite stones in each one of my hands, with the intent of transferring them to my brother's hands on the day of his infusion.  I kept repeating to myself that this is going work, that I am giving good, healthy healing cells to my brother.  At the end of the experience, I broke down in tears of relief: 1) because of the realization of how much the people around me are suffering, and 2) knowing that this bag of gold will soon give my brother new bone marrow, good health and well-being.

Yesterday, the 16th, my sleeping brother received the stem cells. The hematite stones were placed next to his right and left hands. After 2 hours, when the process was done, I removed the stones to put in the sun lit window, which practically burned a whole through my palms. That blew my mind!!!

My brother, Brad, is feeling reasonably well and now it is a matter of keeping him comfortable, in good spirits and positive so that he will absorb the new cells.  Prayer, meditation, laughs and love are the daily requirements.  Taking each day as it comes is another.  I am looking forward to seeing what today brings. Shabbat Shalom, Salam, Peace.

B'ahava
Nameste, 
DONNA LEE


Events:

Sign up/recruit now for the U.S. Disabled Sailing Championship -Sept. 22-25 at Larchmont Yacht Club, NY . It will be a wonderful regatta and are just waiting for the sailors to register.  There is a novice fleet too, so if you know any rookies, please encourage them.
Linking: 



Smart and Trendy Moms

Monday, July 18, 2011

My Fragile Child - Guest post by Christine


Here we go again…

Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable. 

My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to go on vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear?  I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life. 

Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice, etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go. 

The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building. 

Finally, after what seemed like an eternity, we were called upon. 

Staff: “Will she be cooperative for stats?”

 Me: ” No, not really!” 

Staff: “Do you know how much she weighs?” 

Me:  “Approximately 80 pounds.“

Staff: "That won’t work , the Doctor will need an exact weight.  Will she stand for a minute on the scale?"

Me: “No.”

Staff: “Can she sit on the other type of scale?”

Me: “No”

Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!

After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought.  We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face

The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events leading to our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get an x-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming, crying and thrashing about.
X-ray came in with a portable machine to make it “easier” – we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face

Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally, I asked my husband to take control of Kaet, I was going to see what the heck was going on…

As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.”  The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it. 

I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and the ER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew!  During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath. 

Above: Kaet peers over at her mom during horseback riding, Oct. 2010.

Finally the morphine kicked in and they were able to bandage her arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face
  And we were on our way home with Rx for morphine in hand to help get us through the night. 

As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again. 

My wish to share is for our special needs kids to be treated just that and not be cared for following  “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  - Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.

It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

"Patient Rights: As a Patient, you have the right to:
  • Receive considerate and respectful care.
  • Expect reasonable access to and continuity of care...."
By Christine



Sunday, May 29, 2011

Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gatherered already she now has some added issues to deal with lately.  I greatly appreciate Christine's willingness to share their past couple of weeks.  Stacie

It has been a crazy month...(some of the days/times run together in my mind, but I'll do my best to explain). Kaetlyn's journey into womanhood...

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out "normal," but we decided to start her on birth control to help with the hormones....
About one week later we were AGAIN at a loss of the extreme "behaviors" we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her :(  By this time, I was at my whits end...I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinanalysis and strangely decided to do a STREP test. We started with the STREP test and while it was "processing" drew the blood work...before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it....POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! ...
2 days later I get a call from the teacher that Kaet had a GREAT day :), but my "little girl" had become a "little woman" YEP, the birth control/hormones had apparently given her the "push" to start her period. That wasn't too bad that weekend we took it easy and stayed close to home since I had no clue what to expect....then came Monday. 
I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space....the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! :( It was like something was inside her nagging and irritating her...
The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet's gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results...before the Doctor even walked into the room I could hear her outside the door saying, "I would be in pain if I had that!" - apparently she was speaking to an intern. She came into the room and explained to me that Kaet had "free fluid" in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! ...there was no way I could go through a couple weeks of what I experienced the day prior!!!! 
Kaetlyn above with her mom, Christine, graduates 8th grade last week.


She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 
Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can't talk to me I felt it best to go on...
We started yet again with the blood test and urine test (what an "adventure" it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn't give it to her that way. feeding tube time! (NOT) I didn't have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn's :( I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and "surprise" lots of fecal matter too. 
Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 

Christine