PBA336..The Honey Badgers

6/11/12 8:40pm 


Art imitates life, and often times like a movie many things don't really seem all taht significant except in retrospect. We have that benefit somewhat now and so here is the Reader's Digest version of the events leading up to the blood draw on Wednesday night. They go somewhat like this:


Paige had developed a lump in her armpit area that she was rightfully concerned about. Referred by her primary care doctor to a surgeon friend of his, she opted to have it removed.


The surgeon had a different kind of biopsy on the lump than the primary care physician asked to have, and the primary care doctor was more than a little disappointed.


There was a scheduled post op follow up appointment made.


Somewhere in the interim Paige began having blood in her mucus. In speaking to a friend's mom, who is a doctor, she suggested that Paige's symptoms fit all the signs of Valley Fever.


It also seemed that her recovery from the surgery was a long time in healing.


During the post op visit, Paige told the doctor about the Valley Fever idea, who agreed that it was at least worth entertaining. So blood was taken for testing...the rest of the story is here: PBA336 


So now after what was a pretty good weekend with an awesome night nurse named Pat on Friday and Saturday... we're here...


Paige, at only 2 months past 18 years of age is a newly diagnosed Type 1 Diabetic. Apparently with that legally acquired adulthood comes the privilege of getting stuck in the section of the hospital where apparently old people with long time previously diagnosed diabetes conditions reside, instead of in Cardon's Children's Center, where attention and instruction is top notch.


It's been a struggle for the most part to get straight answers or clear direction in our effort to become able to maintain this condition at home.


One of the major contingencies in our being released form the hospital hinged on was having the equipment to be able to measure Paige's blood sugar and administer medication as needed. We were given a prescription for the Glucose meter and lance because isnted of using finer needles like they would have in the Cardon's side of things, they used the needles they use for people who have been maintaining this condition for years and have callouses they have to get through to draw blood. 


Paige is 97 pounds, and a new diagnosis so these things tore the shit out of her fingers. Finally after a lot of crying and several requests we received a prescription for the kinds of much smaller needles we would have gotten had we been admitted to the Cardon's center for treatment siting that they didn't have access to these needles. We figured that we had to buy these things anyway, and it was clear that if we wanted that kind of care in the ward we were currently in, that buying our own medical supplies would fall on us and became a necessicary added expense in receiving that quality of treatment in the hospital as well. So we obliged and bought these supplies to ensure pur daughter got the best possible accommodations for her situation.


Having newly gotten these things we were unsure of how to use them exceot by observing the hurses who used their eqipment. Since we were in a building full of people who continually asked if we had received education about managing diabetes, and to make sure we received such "education" before leaving, we asked what we thought to be a reasonable request. Could and would they assist us in learning this new product and  procedure. 


Upon doing so we were repeatedly asked if we had received a couple of pamphlets about diabetes care from the hospital, but were continually declined in pur request for assistance with the glucose meter. 


We finally opened the box, read all 7 rather uncomplicated steps and figured it out ourselves, as help cearly would not come from the staff.


We knew that this was only one step in the process of learning to manage her blood sugar, and in addition to counting carbs, watching her diet and measuring blood sugar we should also be familiar with the process of administering insulin. Initially were told about and so then asked for an insulin pump, which was met with continual hesitation for which no explanation was given.


Now, up to this point we received very little information, never saw a hospital doctor before 6pm (sometimes as late as 9pm) and were repeatedly told that insulin and other things would happen at certain times which were either very late in happening or didn't happen at all until we reminded the staff that we had been waiting for them.


Friday night we met a great nurse named Pat. Thanks to Pat we learned that the usual proceedure for newly disgnosed diabetics was to make sure they were knowledgeable and comfortable with administering and managing their blood sugar manually. This made sense and we didn't understand why no one else felt inclined to share this information with us.


Pat was thourough and great about making sure we got answers to our questions and making sure we got answers to questions we hadn't even thought about asking. She was awesome.


She was also good to make sure and tell us of the importance of eating regularly and carefully, in managing her blood sugar levels.


Paige wasn't comfortable with the idea of the standard syringe and needle method of taking insulin and in spite of even more requests over the weekend to get the prescription for a what is apparently a rather common alternate method of injection, the "pen", we didn't get one until after 6pm on Sunday night. Of course the pharmacies were closed.


Sunday night we were told we had been scheduled for release on Monday after an MRI (brain scan) and a bronchiascope procedure. 


Paige had previously had a dye contrast test for her chest while she was in the hospital. She had an allergic reaction to the dye with facial swelling, and tightening of the throat. It was initially dismissed when we brought it up to the nursing staff, but Paige's primary care doctor said it was indeed attributable to a delayed allergic reaction, but that it probably didn't help matters that she had been through 4 bags of IV fluid at a rate of 200 had been and were currently being administered as there was no reason for this to happen and found it odd that stopping it hadn't been done or considered.


After being given antihistamine and stopping the IV fluids the symptoms subsided with no definitive cause for the symptoms offered.


Paige's home management plan was suppose to consist of taking long lasting insulin once a day in the evening and monitoring and logging her blood sugar levels three times a day.


We asked for a prescription for both all weekend but didn't get the script until Sunday after 6pm. All the pharmacies were closed so we got the "pens"
Yesterday, we were scheduled to get out of here today. We had 2 tests scheduled. 


The last hour or so has been a real stress ball. Not eating for 18 hours dropped her sugar to 70, after giver her juice and a full meal her sugar rose back up to 300 again, over the course of about 1.5 hours. Instead of trying to stop it at 199, or letting us have our insulin from the refrigerator to deal with it they thought it better to focus on their shift change and refused us access to our own insulin because we had "officially been discharged". So I'm a little frustrated that they wouldn't treat her on one hand and then refused us the means to treat her with our own medication on the other. Her Endocrinologist follow up was supposed to be in a week, but he couldn't get us in until mid July. 300 was the level that the doctor told us that we HAD to bring her to the ER. Then they said well you're clearly not comfortable or prepared to handle this yet. We've also been told that she's tested positive for Valley Fever as well.