Now I wrote in this spot earlier today about what was going on in my mind and before you know it your focus changes really fast once again.... so to hear about me you will now have to wait for another day :)
Connor's Nurse, Miss Sharon, came by at 11:15 to take Connor's blood and start his Solumedrol infusion just as always and for some wicked reason the butterfly needle went in just fine but there is no blood return at all. This means something is wrong with the port and we can't administer the drugs if we have no flow ....
Sharron, bless her heart, has tried for almost one hour to get the port to work with no success. So now I left a message with Michelle, Dr. Soep's Nurse and I am hoping for a call back soon.
I want to tell you all who followed my frustration when we left the Hospital and transferred to in home care that by now I have a true respect for Connor's Nurse Sharon and I am glad we did not throw in the towel back then. She has been nothing but attentive and focused to Connor's care.
I did get a call from Michelle at 2 PM and she called about Connor's Therapy at Memorial so I told her what has happened this morning and she told me she would get back with Dr. Soep and call me right back. I also went and e-mailed Dr. Curran and Dr. Pachman to get their advice and I got a reply from Dr. Curran a couple of minutes ago to let me know that I should give Connor the Prednisone and that most likely we will go to The Children's Hospital to have an IV tomorrow for the Solumedrol and Methrotrexate plus have the port looked at ...
Shortly after that e-mail I got a call back from Michelle who told me to take Connor to the Memorial Hospital in Colorado Springs and ask them to give Connor a TPA. This is from what I understand a specialized medication that can resolve a possible blood clot in Connor's Port.
So I went and packed up the boys and just when I was about to leave I got another response from Dr. Pachman this time, who told me just like Dr. Curran to go ahead and give Connor the Prednisolone and then contact the Hospital to have Connor's Port looked at. I once again can not tell you all enough how much love we have for Dr. Curran and Dr. Pachman who both responded to my e-mail within an hour and two. They are so far away from us and are busy beyond believe and they still reach out each and every time ... PRICELESS!
Of course I also want to say THANK YOU to Michelle who got back with me and guided us towards Memorial to get the ball rolling.
We arrived at Memorial Hospital at 4:15 PM and the ER was PACKED! almost every seat was taken and it was a huge waiting room. So I went and found us a place to sit after checking in and I am not making this up but to my biggest amazement we were called after about 3 minutes being there. Connor had his weight, temperature, blood pressure and oxygen levels checked and after being in a small room for about 20 minutes we were assigned a room on the Pediatric ER section.
Now in this room we spend about 4 1/2 hours and the live safer came in the form as it being a very spacious room with a TV! During our stay Connor had some blood taken from his arm, an x-ray was taken of his chest/port and a nurse tried to get the port working by flushing it and pulling for blood. No luck there but the good news was that the port was not dislodged! It is still in place and looking beautiful according to the ER Nurse (who by the way was wonderful). What also took long was the wait for the TPA, the medication they use to try and break a blood clot that can form inside the port. When it finally arrived the nurse told us the direction on this drug list that you have to wait for 120 minutes to see if it works, which was a real downer to us but then the Nurse also told me that she will check the port every 30 minutes and will try to get some blood flowing. So at 9:15 PM she came in and hooked up the syringe and there was blood!!!! I have never been so happy to see blood flowing from my baby :):):) I asked her if I could hook up the Methrotrexate and then leave and she consulted with the ER Doctor who said that was fine with him as long as I was comfortable with it ... So after another 30 minutes we were in the car and heading home. The only stop we made was at a Drive-Thru.
It is now 11:30 PM and we are all dead tired but overly so that we are also all wide awake ...
I want to Thank everyone who has been so wonderful to me on FB today. I tell you when all you have is your phone while sitting there for hours it was great to see support and also read some posts that made me laugh!
My husband was an Angel because he skyped and talked to the boys this morning when Connor first had problems with the Port and then we texted all afternoon while passing time ...
Another set of news is that I am loving to blog again and you will have to wait now to hear why I truly did not blog to much lately :)
Hugs,
R A C A
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