Tressa was the ideal patient this year. Having the scrap book photos and history of prior visits paid off for her to have no fears, she was prepared and PERFECT!
We arrived to find all the parking lots full... a couple trips around the hospital found an empty space to park. We got up on the floor a few minutes before 3pm. Our first appointment was 3pm for her DXA Bone Densitometry Report. The good news is the report shows better results than 2 years ago!! Yeah. We are off to a good start. We head up to the floor so that we can get paperwork underway and of course let the kitchen staff know we have arrived. I start the evaluation reports and Dr. miller starts her routine exam. It is time to get the IV in so tests can begin. With the time being 4:30 the nurse who can stick and get an IV in one attempt has left for the day... The other nurses come in for a look and to try. Many many many many....did I say MANY tries were made. I informed them that I was about to fall out because Tressa was unaffected by the trials I had enough... we will hold off until tomorrow and Tressa will drink lots of water. I held back fluids so we didn't have an accident in the van...PULL UP on next time and fluid intake. Be assured her tolerance to pain is VERY HIGH and she did not complain about anything but "THE BAND AIDE" a little discomfort with the elastic tourniquet on the upper arm which once placed over her shirt and tightened was fine. the needles a walk in the park..
A new Doctor who is studying behaviors through the Psychiatric field stopped in to introduce herself and seek information from me if we would be interested in joining her study through UF/GO GATORS!!! This is allowing psychotropic drugs to begin for anxiety. She is 7 years old and all the research I have been doing on this to help her I find these medications have too many side effects for what i want for Tressa. I believe most if not all her behaviors can be controlled through a behavior program and environmental adjustments. I agreed to phone interviews and mailing information. If I wish to visit face to face for a 3 hour interview it will be set for fall when I go up for the annual conference for PWS. Drugs of that nature not until all else fails and no other options face us.
We have dinner.."see photo" she was in heaven. We had started home work before the IV fiasco and now the arm is useless to get the home work completed, Dr. Miller left for the night and put us in the good hands of clinic staff for further tests. After dinner we went for a bone age x-ray of her hand/wrest. The x-ray department was in the old part of the hospital so it was like taking a scary walk.......and by the way, it is much colder in Gainesville then South Florida!!! All was done at 8 pm for Tressa and Mom to play a game of Jr. scrabble. She got the game from one of the nurses for being such a good patient.. She understood the game after a few word builds and took off as if she had played it many time. We had fun in the play room as well as back in the room on down to sleep for early morning tests to begin again.
with Tressa sleeping I worked on the many pages of questions for me .
It wasn't "my bed" so sleep was so, so. Tressa went out fast. She had gotten up some time in the night because things were moved when they arrived with the metabolic rate machine (space like enclosure) This measures her body at rest for calories she can consume in a day and "grow into her weight" It was very clear she is stealing a lot more than the 600 calories a day... she IS without a doubt getting calories somewhere some how to be gaining like she is. I provide 600 calories a day... He body can at total rest burn of 1026 so this means she is taking in well over 1026 calories a day.... Now, we need to learn how and ways to fix it. Good information!!!
Once this test is complete it is time for the IV to go in. They have had everyone look at her veins and used magic vein finding lights, heat, fluids etc... We will give Nurse Charlie ONE TRY and then call the magic nurse over from the outpatient clinic... Charlie gets it after a little work... Again her only complaint was removing a band aide.. I didn't watch. We were starting the Psychological report so my input focus was with her. Tressa will go once we get the blood measures. WE have two very important tests to do today. Her diabetes levels and then a stress test which is one we have been waiting for, The first she can not eat with and actually drinks a special potion for measures. Once started we go to ave her MRI done across the street. The physical is set aside because the camera was forgotten. Over to the MRI, Tressa again remembers with the help of photos and is a real trooper. OK, now you know it wasn't all flawless. I am told to take everything out of my pockets before entering the MRI room. Ok...everything is in my jacket pockets..Tressa tell me she doesn't want me in the room with her once it starts. She wants me at the window with the Doctors and talk to her through a microphone. This year she got a little emergency ball to ring if in distress. YEP! once a few minutes went by the emergency lights/sirens go off. The tech asks if she is OK and she very loudly answers yes..but she is squeezing the ball over, and over and over... I could tell the tech knew Tressa was using it like a stress ball but she is trained to STOP if this is happening...she continues on until finally she has Dr Miller go in and check on her... she is fine, being silly..and the images were perfect only 22 seconds cut short...UGH.. We start over this time no stress ball. Tressa is doing well, we are getting everything ready to burn a CD for me to bring home and into Dr. Millers zipdrive. Tressa seems in distress, Dr, Miller races into the room, I run behind her...forgetting I have put my jacket on.......................Do you know what happens next?????????
One side of my jacket flies and attached my camera to the inside of the MRI machine..... I totally freak and tug it back and panic... this camera wasn't mine. Mine is broken and now I have ruined someone Else's camera... UGH.... The camera will no turn on..I thought I must have lost the pictures although as you can see... I have the photos. SO the past of photos is the MRI...
Once completed we go back to the room as we are pushing the hour blood draw for tests... Tressa is not holding up well and is near passing out. She has no color and Dr. Miller appears extremely concerned which means I am concerned and praying all is OK. Tressa's blood sugar has dropped into the low 40"s we race for juices and graham crackers as she is dozing off. WE take her for more blood draws once she takes the juice and food. The lab is calling very concerned with numbers. With Tressa able to eat she gets her levels back to 130 quickly. We go back for the physical and discuss what is going on. Tressa is going to need a complete sleep study which will be 2 days at All children's and additional work with medications on her blood sugars. We have more blood results although because her body went into distress shows further concern for other areas of concern.
WE discuss puberty coming and this new medication will hold some of the progress off and then we will make additional decisions when she is 12 so we have some time. Her body is not going to develop like typical women unless we help it. Helping it has some areas of concern as well. Today we will get her blood sugars level and her "C" word for stress safe so she isn't at risk of anything terrible happening and puberty will be later.... I know I have left off about 70% of everything told to me and discussed but my head spins form so much information and so many things to look at for her future and how to deal with today, tomorrow and next week...
Today i will close, add some photos and re- read, re- think all the information, reports and coming results for future planning. My comfort is that Dr. Driscoll and Dr. Miller really care about Tressa as much as I do. They talk to me as if they were treating their own child and that helps me understand and I make the final decisions for Tressa with well advised information and data. She is a very lucky little girl to have a great team in life.
