The Good, The Bad and the Ugly .....

So I am not sure today if I start out with everything good that has happened in the last two days or the bad.

I like to finish with the good but I think to keep myself calm today I will focus on the good first.

For the last three days both Connor and Alexander did really great playing together. It is still all about Star Wars, either the figurines, Lego or coloring. I am so happy to see that Connor has not lost his love for coloring and I have a new stack since we got home. He also took his first bath at home and he was able to sit in the tub without much pain. Connor even led me talk him into trying to do some stretches and riding his easy bike. I will add pictures and a video of both :) It is the only therapy he gets so far since we are home since we have not had a visit from either of his three therapists (OT, PT, ST). Strange to go from seven days a week of constant therapy to none. So we are doing our best to keep him moving :)

Then the other wonderful news are that once again I was spoiled by having some of the best friends and family! Not only are you all amazing in your support but last night when things fell apart as I will write later in my post, I had four Angels keeping it all together. First my Dad who took over taking care of the house and dogs, to my Mom who on short notice went with us to the hospital because Alexander wanted to go as well, to Caroline who showed up bearing food for us all to eat and Shelly who arrived to drive my Mom and Alexander back home after 3 hours at the ER.

So here is the back drop to what finished yesterday with me actually yelling at a nurse (yes me of all people and I am not proud of it but it sure felt right).

As you know we were released from TCH on Friday 3-19-2010. It was a most happy day and weekend for the six of us and everything went really well other then a few speed bumps with Connor trying to get out of taking his medication and of course for you that are on the JDM journey as well, known side effects of the steroids --- MOOD-SWINGS ---. All of this was fine, how can we not feel for the stress and pain our kids go through.

In order for us to be released, the hospital put in place In-Home-Care for Connor to get his Solumedrol infusions twice a week, Tuesdays and Fridays, Methrotrexate infusions once a week, Fridays, and one blood work up each Tuesday.

We were a bit anxious to see how it all played out but were comforted when we got a call from the Agency on Monday to tell us everything was in place for his first Nurse visit Tuesday at 9 AM (this is when Connor always got his infusions in the Hospital since it is a big dose of Steroids and the earlier the better). We also got a delivery of all his Medications and the syringes.

I was hoping to hear from all three therapist to schedule a date for an evaluation but heard nothing on Monday. Remember, Connor already had 3 days 'off' from therapy by then since in the hospital he went 7 days a week for all three until the last week when it went to 6 days a week for PT and OT, and 5 days a week for speech.

Tuesday, March 22, 2009, Connor had his first In-Home-Care visit for his Solumedrol infusion plus Blood Draw.

The visit did not go as well as I had hopped for a view reasons.

At 8 AM that morning I put the Lidocaine Cream on his chest area covering his Medi Port so the skin would be numb in time for the Blood Draw and Infusion one hour later. Connor's nurse showed up at 10:30 AM, so 1 1/2 hours later then we had been told. She came and looked at all the medications that had been delivered and then told me she will hook Connor up and then leave. I have never pulled out a port needle before so told her I am not sure what I need to do when the drip is done. I also asked her about the blood work and she said there was none.She pulled out the instruction sheet that were faxed to the In-Home-Care Agency to look at it again and there was the order for Blood Work. She said that most likely she had to do it on Friday as she was not prepared for it but was going to check in her car if she had some vials with her. She did find some so went and called someone about the kid of labs that were to be done. She also told me by then she would stay today to show me how to flush the port with Saline when the infusion is done and how to remove that butterfly needle. This is not something I mind at all and I was grateful to be able to at least do it once with a Nurse there to watch. I am not sure if this was something we should have been shown at TCH or not.....

She went and took some blood for Connor and I did not see her label them but I could be wrong in this regard. There were a few more issues where I felt this was not a prepared pediatric visit, for example there were no pediatric blood pressure cuffs to monitor his blood pressure during his Steroid infusions. I am not going into all of it because this got resolved later on.

Connor did have a low grade fever when the Nurse took his temperature so I followed up on it and when he still had a 99.6 F yesterday morning I called Dr. Sope's Office and left a message with her nurse. I did get a call back very fast from both of them actually and I described how Connor was feeling, his low grade temperature and our first In-Home-Experience. Dr. Soep called the Agency and had a long talk which seemed to be informative on both sides. For one it sounds the instruction given to the Agency might not have been to clear and for another this Agency does not have much experience working with Pediatrics and not the severity of Connor's care. I of course was not the perfect mix since I came from 51 days of perfect care from CMH and TCH and wanting the same at home ...

I got a call back from the Agency and we talked about all of us trying to make this work. I was happy with this at this point because I do feel there was blame all around and of course we give it one more try.

I received another call from Dr. Soep about Connor's Blood Levels and all seemed to look good. CK was at 44, we did not have the Von Willebrand factor back yet but no worries at this point.

Our In-Home-Care Nurse came back yesterday as well for a quick visit to flush Connor's port again as she said she did not feel comfortable the day before when she left and the blood flow back into the port felt a bit sluggish.

At 5:15 PM I get a call again from Dr. Soep and this time she had looked at the second report of Blood Work and was very concerned about the read out. It seemed his Electrolytes where all over the place. For one his Potassium Levels were extremely high and his Calcium Levels very low. She said if this read-out it correct then this is would qualify for panic mode and we need to get another blood draw and heart monitor going to see if he has heart rhythm issues. She said however he should be looking very sick (which he didn't) so the other explanation for the results would be that the blood was compromised. Especially for the Potassium it is time sensitive to get the blood to the lab fast to get a correct read out.

So we were at a point that we had to think those results were correct since it is always better to be safe then sorry and Dr. Soep asked if she should send the order to Pikes Peak Regional Hospital since it would be closer and most likely we will be heading home again or to Memorial Hospital in the Springs.

I so so so knew I made a mistake when I went with the easy road to go to Pikes Peak Hospital, thinking it is only a 20 min drive instead of one hour and how bad can it be going in for a blood draw.

We arrived at 6 PM and we got home at 9:30 PM. First when we got there they told us they had no order. Then they 'found' it and I told them why we were here to re-check his blood for Potassium and Calcium and right away I was told that the blood they checked yesterday was good and it was not 'compromised'. We went to the waiting room and waited for one hour in an empty room! I went in and said how much longer is the wait (considering there were nurses and doctors standing around - this was not your inner city bustling ER I promise you!!!). I was told they are not sure but they will get to us. They did come and get us 20 min later. Connor and I went into an examine room with a male nurse. By then Connor was hungry and worried about the 'poke' because due to the flush earlier at home Dr. Soep thought it would not be good to use the port this soon so he had to have blood drawn on his arm.

And then my trip to just have blood drawn turned into a questioning of all the medications Connor is on. This Nurse had the nerve to question me after I told him what Connor has 'Juvenille Dermatomyositis - (which of course he had no clue about). He kept pushing as to 'why is he on blood pressure lowering medication' 'why is he on Stomach Acid medication' etc etc. I truly lost it because I told him if he looked at the other medications he is taking --- High doses of Steroids? Methrotrexate/Chemo? Cyclosporin? etc etc. How can you not look at this list and as a nurse know the side-effects they are causing?????????

He said this is all well and fine but something else must be wrong with him to be on so much medications ... do you know now that this was the point I screamed at him? I told him who the nurse was and who had the real knowledge here because it was not him. We came here for a simple blood draw and not to have some nurse question Connor's disease or medication or try to diagnose my son who by the way is already treated by the best Doctors there are and they are NOT at Pikes Peak Regional Hospital!

Needless to say they assigned us a new nurse. She seemed nice but after another 30 min wait and a blood draw that splattered blood everywhere and over Connor's T-Shirt I was not happy by any standards. I did keep my mouth shut however and just held Connor who was crying non stop for 10 minutes.

The break came in form of Miss Caroline who was bearing food for us. By then it was 8 PM and of course I was worrying about Connor's medication schedule and not having any food. My Mom had her hands full entertaining Alexander in the Waiting Room. Miss Shelly also came to the hospital to take my Mom and Alexander home when finally we got the blood test results back...

No surprise there but his Potassium Levels and Calcium Levels were fine!

I was happy about the results and I pretty much guessed that this would be the outcome. So what is your thought now ... Do you think that maybe the blood taken on Tuesday was compromised?????? Well NOT according to the Hospital ... figures. We spend three hours at the ER, they claimed on the paper that we came in for a low grade fever? The only thing they did on Admission was take his temperature, NEVER did they take his Blood Pressure, OR measured his heart rate which if you have possible levels of Potassium this high would this not be the first thing you do when Admitted to the ER?????

I did hear this morning that the blood taken on Tuesday sat over night before it went into the lab!

Okay, I have to stop because as you see I am still so so mad. I hate feeling this way and this last week has been a huge disappointment when it came to Connor's care.

I know in the big picture this all might look minor but I so do not want to end back in the hospital, and everything that compromises the well being of our son's to me not acceptable. I expect the best and most of all I expect people to do their job right .....

So here is my venting for March 24, 2010. Lets see if it will be the last of it!

R A C A