Yesterday was kind of a crazy day for Collin. He started his physical therapy and occupational therapy back up. They put a hand splint on his right hand with a foam cylinder in the palm to start working on his hand. They could not put a splint on his left hand because that is that arm that his arterial line is in. They did not put any leg splints on yet because they want to see the leg splints we have at home. This really irritated Julie greatly because she asked them over two weeks ago if they wanted the splints from home, and they said no, they are getting new ones. So Heath and the older two searched through boxes this evening in an attempt to find Collin's leg splints.
They took Collin in to surgery today to replace the port for the dialysis machine, the one they initially put into his right shoulder was only a temporary one - so they put a permanent one in. They new port is on the left side of his chest just above where his old central line was. They also put an NJ tube in his nose, which goes down his throat, through his stomach and into his intestines. The difference between an NG tube and an NJ tube is that an NG tube only reaches the stomach, while an NJ tube goes all the way to the stomach. They did not want to put an NG tube in because he has bile in his stomach that they are continously sucking out of his stomach. They aren't pumping it, they are sucking it out. There is concern that if they used an NG tube and put food into his stomach, it would increase nausea and discomfort.
The purpose of the NJ tube is to enable the doctors to put a little bit of food into his intestines to get his bowels to move in an attempt to bring down his liver enzyme numbers faster. At this point they have not yet given him any food through his NJ tube. The entire surgery was only supposed to take an hour, but it took them three hours because of bleeding issues. When he returned from surgery, we will still having some bleeding issues coming from the new port site and a little coming from his mouth. They have not taken out the old port yet (in his shoulder). They have to keep his old port in until they are sure the new port is going to work properly. He still has his central IV line that he has always had. So now he has two types of lines going into his chest.
They are having difficulty getting the new port to work properly. This is not a major issue at this point. It is just not working as well as the old port did. They hope is that it will start working better with time. They will take the old port out in a day or two, once they are sure that the new port is going to work properly. They don't want to take the old one out, and have the new one fail, and then we are in trouble.
We had trouble with his blood pressure again overnight Monday night and during the day again yesterday. They tried to reduce his epinephrine amount Monday night, but they ended up having to increase it during the day Tuesday because of blood pressure issues. The doctors are monitoring his blood pressure very closely.
The good news is that his blood pressure is not dropping as often as it was when he gets agitated. However, it is now dropping when he is calm and nothing else is happening (like changing meds). So now it drops regardless of agitation, when before it was only when he was agitated. He continued to move his head today and whenever they would roll him onto his left side, he would move his right arm. There was some concern about his arterial line (in his arm) because he had developed bruise like blotches on his arm, and we thought they were going to take his arterial line out. They did not take it out because they are running out of places to put it, and he needs the arterial line so they can better monitor his blood pressure and to draw blood for his daily blood tests.
He is doing more breathing on his own. When he is breathing on his own, his breathing overall is more sporadic. When Julie asked the nurse about it, she said that is typically what kids do when they are trying to wake up from these situations. They did not really change his ventilator today, the only thing they changed was that they dropped the pressure going into his lungs a little to try and encourage him to breath more on his own. And of course, the lower they keep the vent, the lower the risk of long term damage.
They did decrease one of his sedation medications Tuesday morning, but they had to give him extra sedation later Tuesday because of the surgery. Some of the skin tears and the open sores on his skin are looking much better, and they are all finally starting to heal up. He still is developing new ones sometimes, but not nearly like he was.
The oral bleeding is a little worse Tuesday night than it has been in the last couple of days, but that is probably because of the surgery. It is getting better overall. They are still not letting the nurses do mouth care yet. Julie isn't sure why, but she thinks it is because they are afraid it will make the bleeding worse.
When we say he was more awake, we don't mean that his eyes are open. He sometimes slightly opens his eyes (just small slits), but usually he keeps them closed. He moves his arms a little, his right more than his left. He moves his head quite a bit, turning it side to side and lifting his chin up. He is not moving his legs at all. Sometimes when he tries to move his arm, his torso and shoulders will shake a little because it takes so much for him to move them, it's like he uses his whole body to move the limb.
Let us know if you would like to visit. You are more than welcome to visit, just text Julie or myself to find out if it is a good day. Things are still kind of crazy, so please text or call before you leave your house or work to come to the hospital to be sure nothing has come up. We had some problems today with scheduled visitors because we didn't know they were going to take him into surgery today. We are really sorry for the confusion today and appreciate your flexibility. Today was kind of a crazy day with the unexpected surgery. Of course, it is okay if you just want to come visit Julie if you do not want to see Collin in this condition.
Julie pointed out to me yesterday that on the original stem cell schedule, Collin would be coming home about now. The good thing is that they did in fact do the stem cell transplant, one day late, so that is in his favor. I suppose it could be worse - they could have put him through all of this and not have done the transplant at all. At least this way the transplant is there, and it may well work. We just have to keep our fingers crossed!
That is all we have for now. Sorry the update is so late. Like I said, it was a weird day. Thank you for your love and support during this difficult time!
Thank you to everyone who has been donating or helping with Julie and Heath's date night! I will let you know when I start making the plans. I am still taking donations, you can send them to the office (P.O.Box 531, Greenwood, 46142) or call/text me and I'll come get them. Thank you for your help!
Don't forget that Collin is still using a lot of platelets and blood transfusions. Please keep donating and organizing blood drives "in Collin's Honor." We really appreciate it! Thank you!!!
As always, contact me any time for anything - questions, concerns, etc. It is hard for me to tell sometimes if I am explaining things clearly, so please let me know if you have questions or if something is not clear. Sometimes I have trouble explaining this stuff! : )
Love,
Jenn Wilson
317-430-0805
jenndwilson83@yahoo.com
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