I think with this update it is best to just pick up where Noah left off. The Monday after our stay at the hospital I took Dylan in for labs as his team had requested. We went to our local Kaiser for these so I got results pretty quickly after. I was pleased to see a really great improvement in the numbers. Almost all of his values were back in the normal range. I alerted the transplant team and was asked to come to Stanford the following Thursday for more labs and a clinic appointment. So Thursday morning I loaded up the kids and made my way over. I have to say that I was a bit stressed making the trek on my own. There really isn't a place to pull over if Tegan was to start crying, but luckily she stayed asleep until we got there. It seems it is always an ordeal getting labs drawn after a hospital stay. For one, Dylan's veins are all but shot after being poked over and over for daily labs while inpatient and second, Dylan always seems to have a bit of post traumatic stress disorder after an extended stay. We are lucky though that Dylan has come to trust one of the phlebotomists at Stanford, Teresa. She always seems to put his fears at ease. Dylan found the courage and pushed through.
I got a phone call from our fantastic coordinator who told me the doctor could see Dylan earlier than his scheduled appointment. This would make it so we could get on the road back home sooner. We made our way over for clinic excited to get it over with and go home. The doctors checked Dylan out, asked if there were any new symptoms and looked at his now fading rash. Just when I thought we were done they dropped a bombshell. The doctor's exact words were "we have a problem". He then handed me a copy of Dylan's labs. My jaw literally hit the floor and my heart sank. My little boy who seemed to be feeling better was in fact VERY sick. Dylan's liver numbers were sky high; so high I was instantly afraid. Their fear was that Dylan was in rejection. That maybe the infection he had the week prior caused his body to attack his liver due to them having to drop his anti-rejection medication. We were immediately scheduled for an ultrasound that day and sent down stairs for yet more lab draws (checking them again to make sure it was not a lab error). Dylan was also set up for a liver biopsy the next day. My little guy would have to go to sleep, again. Needless to say we were all pretty upset by this. I called Noah to let him know and he was just as shocked as I was. He then drove down to help me out as it seemed it was going to be another very long day.
Dylan's ultrasound looked good. We could visualize his blood vessels and there was nothing alarming that we noticed (we later received a text from our coordinator confirming this information). We made the trip home to pack a bag. We had no way of knowing if we would be staying for a couple days or a couple weeks. I still had a bit of a bad taste in my mouth for our last visit and cried the whole way home thinking about having to do it again. Having to leave my little guy each night and lay in bed thinking about what both my guys were having to deal with while I was gone. It is hard to live this life. I call it Liverland...a place constantly surrounded by medical personnel, medications to take and procedures to go through. It is a very hard life for Dylan, but I think it affects everyone directly involved. Noah and I ( and Tegan once she realizes what it is all about) have to watch our child suffer through this terrible disease and there is NOTHING we can do to stop it. His grandparents, aunts, uncles, cousins and close friends wanting to help but not being able to do much for any of us. Just having to "watch" from a distance. I think it even affects everyone who reads this blog to some extent. All I can say is I wish Liverland did not exist.
Friday came too soon. We got up and got ready. You could feel the tension in the air at home. No one wanted to do this. I wanted so badly just to say no and go back to bed and cuddle with Dylan, but that was not an option. Dylan was so nervous on the drive over. He was crying and saying over and over how he was scared to have his biopsy. He was terrified to be put to sleep again and I don't blame him. He had been through so much with his last stay and now with it still fresh in his mind he had to do it again. We made our way down to the surgery center to get Dylan checked in. The first words out of the woman behind the counter were " she can't go back there" pointing to Tegan. We never said we were planning on it. It was down right rude in my opinion. Well I lost it, just the week before I was with Dylan during induction and now it wasn't allowed. I was already dreading the recovery time. I knew he would be in there for 4 hours and Tegan would not be allowed back. Now they are telling me I can not be back there while he goes under and with the exception of his two major surgeries I have ALWAYS been there for him. I could not control the tears. This only made Dylan more upset, but my emotions got the best of me.
I got a phone call from our fantastic coordinator who told me the doctor could see Dylan earlier than his scheduled appointment. This would make it so we could get on the road back home sooner. We made our way over for clinic excited to get it over with and go home. The doctors checked Dylan out, asked if there were any new symptoms and looked at his now fading rash. Just when I thought we were done they dropped a bombshell. The doctor's exact words were "we have a problem". He then handed me a copy of Dylan's labs. My jaw literally hit the floor and my heart sank. My little boy who seemed to be feeling better was in fact VERY sick. Dylan's liver numbers were sky high; so high I was instantly afraid. Their fear was that Dylan was in rejection. That maybe the infection he had the week prior caused his body to attack his liver due to them having to drop his anti-rejection medication. We were immediately scheduled for an ultrasound that day and sent down stairs for yet more lab draws (checking them again to make sure it was not a lab error). Dylan was also set up for a liver biopsy the next day. My little guy would have to go to sleep, again. Needless to say we were all pretty upset by this. I called Noah to let him know and he was just as shocked as I was. He then drove down to help me out as it seemed it was going to be another very long day.
Dylan's ultrasound looked good. We could visualize his blood vessels and there was nothing alarming that we noticed (we later received a text from our coordinator confirming this information). We made the trip home to pack a bag. We had no way of knowing if we would be staying for a couple days or a couple weeks. I still had a bit of a bad taste in my mouth for our last visit and cried the whole way home thinking about having to do it again. Having to leave my little guy each night and lay in bed thinking about what both my guys were having to deal with while I was gone. It is hard to live this life. I call it Liverland...a place constantly surrounded by medical personnel, medications to take and procedures to go through. It is a very hard life for Dylan, but I think it affects everyone directly involved. Noah and I ( and Tegan once she realizes what it is all about) have to watch our child suffer through this terrible disease and there is NOTHING we can do to stop it. His grandparents, aunts, uncles, cousins and close friends wanting to help but not being able to do much for any of us. Just having to "watch" from a distance. I think it even affects everyone who reads this blog to some extent. All I can say is I wish Liverland did not exist.
Friday came too soon. We got up and got ready. You could feel the tension in the air at home. No one wanted to do this. I wanted so badly just to say no and go back to bed and cuddle with Dylan, but that was not an option. Dylan was so nervous on the drive over. He was crying and saying over and over how he was scared to have his biopsy. He was terrified to be put to sleep again and I don't blame him. He had been through so much with his last stay and now with it still fresh in his mind he had to do it again. We made our way down to the surgery center to get Dylan checked in. The first words out of the woman behind the counter were " she can't go back there" pointing to Tegan. We never said we were planning on it. It was down right rude in my opinion. Well I lost it, just the week before I was with Dylan during induction and now it wasn't allowed. I was already dreading the recovery time. I knew he would be in there for 4 hours and Tegan would not be allowed back. Now they are telling me I can not be back there while he goes under and with the exception of his two major surgeries I have ALWAYS been there for him. I could not control the tears. This only made Dylan more upset, but my emotions got the best of me.
We waited for over an hour past Dylan's scheduled biopsy. It seems they had a PICU case that took longer than expected. Dylan's name was finally called. The game plan was to have Noah go back and get him set up and that we would switch places for the IV and then we would switch back again. Dylan was brave and went back with out me. I then cried some more. Having your child go under general anesthesia is nerve racking. There is always a possibility of something going wrong. Being there while they go under gives you a little piece of mind that they will be okay. I was having that taken away from me due to hospital policy. It wasn't long before a nurse came out to tell me they were ready for me. She held Tegan for me until Noah came out to grab her. When I came into the room I could see the fear in Dylan's eyes. I wanted so badly to take his place or find a way to take the fear away. The anesthesiologist placed the iv with out any issue. He then told Dylan that his mom, dad and baby sister would be able to walk him up to the procedure room. I picked Dylan up and we made our way toward Noah in the waiting room. When we arrived at the procedure room I said my goodbyes at the door and sat in the waiting area for Noah.
Before I got too comfortable Noah made a quick entrance into the waiting area. It seemed Dylan wanted mom in the room. Noah grabbed Tegan and I made my way back. As far as inductions go this was one of the easiest. The doctor gave him plenty of medications to calm down with before giving the main medication (propofol). He still complained about not wanting to go to sleep, but there was no screaming or tears. He calmly stated he was NOT going to sleep. He fought pretty hard to stay awake, but when he was finally out I made way to the waiting area. I believe it was only about forty minutes and they were done. We then headed to yet another waiting room, it was here we waited for over two hours while Dylan woke up from anesthesia. Noah went back first to see Dylan. I was sure he was still a little groggy and Tegan was due for yet another feeding. As a side note, it is a pretty hard task caring for a new born away from home. The constant feedings and diaper changes alone will drive you insane, but when she gets fussy it is enough to send you over the edge. Tegan being only 4 weeks old it is hard to expect anything else from her. About an hour into me waiting a hospital worker came out to see if I wanted her to hold Tegan while I went back. I don't think I have to even mention that this was not okay with me. I thanked her, but said I would just wait it out as the baby was on a pretty frequent feeding schedule. Now I am not sure what happened. I am not sure what starts aligned or what power that be told this woman, but she grabbed my diaper bag and told me to follow her back to recovery to see Dylan. I was beyond happy and have never wanted to kiss a complete stranger so much before. When I got there Dylan was still asleep and stayed that way for about another hour. At four-thirty we finally made our way to our room.
Now with all biopsies they keep you over night. The liver is a vary vascular organ and the need to ensure that there is no internal bleeding for the site of the biopsy before they send you home. For the first hour on the floor we had a baby for a room mate. We were all pretty happy to see the baby move out of the room opening up the bigger portion of the room for us to move to. Getting any sleep in a hospital is hard enough with out a baby in the room. I can remember having to do that when Dylan was little and it is never easy. Dylan ordered up some food and we hung out for the night. Noah's cousin brought us some delicious food for dinner. It was a great little mood booster. Around ten-thirty I headed to his cousin's house to get Tegan in bed. Even though we are up about every two hours I think she gets more rest away from the hospital setting and the more rest she gets the happier she is. Noah spent a better part of the night scratching Dylan's itchy spots and giving him love. He misses me pretty bad at night. With the exception of my recent hospital stay after giving birth I have never been away from him at night. He has always had his mommy there to kiss him good night. It is pretty sad for me to even think about now, but I guess there is no changing it.
The next day the nurse came in and said that Dylan did not have any labs to get done. Sounded good, but Noah knew this was obviously an error of some kind. Dylan was in the hospital for possible liver rejection and he most certainly needed labs done. After a bunch of back and forth liver function tests were ordered. We waited for rounds with the doctors. They came in and stated that his liver tests looked much improved. His values had dropped and it seemed almost because of the two doses of IV cipro he had due to his biopsy. We were informed it could be a case of cholangitis Dylan was dealing with. This was the exact thing we had suggested to them with his prior stay. This was the exact thing we were told really didn't happen post transplant. It was aggravating to say the least, but at least if it was it was treatable with more antibiotics and it would mean it was not rejection. Our next task was wait for biopsy results. These results usually come early afternoon so we had some time to kill. Dylan had some visitors stop by. We first had a friend/customer of the shop come by with a special present for Dylan. I am always impressed with the support others have for Dylan. It truly warms my heart and reminds me that there are still amazing people in this world. Thank you Matt for stopping by to see Dylan. Dylan also got a visit from his future wife and future mother-in-law. Our dear friend Jessica and her daughter Rylie came over to see us too. Dylan's mood instantly changed. Life came back to his eyes and he started acting like his regular self again. We ate lunch together in Dylan's room and continued our wait.
It was about another hour or two until we saw the doctors again. The verdict was in...there was NO rejection. Dylan's liver cells looked normal and relatively happy. This led us to believe that Dylan did in fact have cholangitis. Dylan would be discharged that day. He would be sent home on three weeks worth of Cipro. This is a pretty hefty antibiotic and would be able to wipe out the bacteria making his liver unhappy. We are not sure if this is something Dylan will have chronically or if this is a lone incident we are dealing with. The plan however, is to treat any fever Dylan develops with Cipro. Having his numbers go as high as they were can cause permanent damage if it is not treated promptly. We are lucky his labs were repeated when they were or it could have had a very different outcome. It is moments like this in our life that we are faced with the reality that no matter what our lives can be turned upside down with no warning. We need to be on constant alert with Dylan. The problem becomes making sure we still enjoy life. We have to find the balance between acting like there is nothing wrong and always being on our A game ready.
Tegan has grown so fast these past few weeks. She weighs 10 pounds now and is almost 5 weeks old. I feel like I didn't get to enjoy her as much as I wanted too. I guess this is where the juggling of two kids begins. The positive is that she won't remember this part of her life. She won't remember how messy our house was or if there was laundry to be done. I am looking forward getting back into a normal routine. I know it may be short lived but I plan on enjoying every moment of it and soaking my two kids in.
Before I got too comfortable Noah made a quick entrance into the waiting area. It seemed Dylan wanted mom in the room. Noah grabbed Tegan and I made my way back. As far as inductions go this was one of the easiest. The doctor gave him plenty of medications to calm down with before giving the main medication (propofol). He still complained about not wanting to go to sleep, but there was no screaming or tears. He calmly stated he was NOT going to sleep. He fought pretty hard to stay awake, but when he was finally out I made way to the waiting area. I believe it was only about forty minutes and they were done. We then headed to yet another waiting room, it was here we waited for over two hours while Dylan woke up from anesthesia. Noah went back first to see Dylan. I was sure he was still a little groggy and Tegan was due for yet another feeding. As a side note, it is a pretty hard task caring for a new born away from home. The constant feedings and diaper changes alone will drive you insane, but when she gets fussy it is enough to send you over the edge. Tegan being only 4 weeks old it is hard to expect anything else from her. About an hour into me waiting a hospital worker came out to see if I wanted her to hold Tegan while I went back. I don't think I have to even mention that this was not okay with me. I thanked her, but said I would just wait it out as the baby was on a pretty frequent feeding schedule. Now I am not sure what happened. I am not sure what starts aligned or what power that be told this woman, but she grabbed my diaper bag and told me to follow her back to recovery to see Dylan. I was beyond happy and have never wanted to kiss a complete stranger so much before. When I got there Dylan was still asleep and stayed that way for about another hour. At four-thirty we finally made our way to our room.
Now with all biopsies they keep you over night. The liver is a vary vascular organ and the need to ensure that there is no internal bleeding for the site of the biopsy before they send you home. For the first hour on the floor we had a baby for a room mate. We were all pretty happy to see the baby move out of the room opening up the bigger portion of the room for us to move to. Getting any sleep in a hospital is hard enough with out a baby in the room. I can remember having to do that when Dylan was little and it is never easy. Dylan ordered up some food and we hung out for the night. Noah's cousin brought us some delicious food for dinner. It was a great little mood booster. Around ten-thirty I headed to his cousin's house to get Tegan in bed. Even though we are up about every two hours I think she gets more rest away from the hospital setting and the more rest she gets the happier she is. Noah spent a better part of the night scratching Dylan's itchy spots and giving him love. He misses me pretty bad at night. With the exception of my recent hospital stay after giving birth I have never been away from him at night. He has always had his mommy there to kiss him good night. It is pretty sad for me to even think about now, but I guess there is no changing it.
The next day the nurse came in and said that Dylan did not have any labs to get done. Sounded good, but Noah knew this was obviously an error of some kind. Dylan was in the hospital for possible liver rejection and he most certainly needed labs done. After a bunch of back and forth liver function tests were ordered. We waited for rounds with the doctors. They came in and stated that his liver tests looked much improved. His values had dropped and it seemed almost because of the two doses of IV cipro he had due to his biopsy. We were informed it could be a case of cholangitis Dylan was dealing with. This was the exact thing we had suggested to them with his prior stay. This was the exact thing we were told really didn't happen post transplant. It was aggravating to say the least, but at least if it was it was treatable with more antibiotics and it would mean it was not rejection. Our next task was wait for biopsy results. These results usually come early afternoon so we had some time to kill. Dylan had some visitors stop by. We first had a friend/customer of the shop come by with a special present for Dylan. I am always impressed with the support others have for Dylan. It truly warms my heart and reminds me that there are still amazing people in this world. Thank you Matt for stopping by to see Dylan. Dylan also got a visit from his future wife and future mother-in-law. Our dear friend Jessica and her daughter Rylie came over to see us too. Dylan's mood instantly changed. Life came back to his eyes and he started acting like his regular self again. We ate lunch together in Dylan's room and continued our wait.
It was about another hour or two until we saw the doctors again. The verdict was in...there was NO rejection. Dylan's liver cells looked normal and relatively happy. This led us to believe that Dylan did in fact have cholangitis. Dylan would be discharged that day. He would be sent home on three weeks worth of Cipro. This is a pretty hefty antibiotic and would be able to wipe out the bacteria making his liver unhappy. We are not sure if this is something Dylan will have chronically or if this is a lone incident we are dealing with. The plan however, is to treat any fever Dylan develops with Cipro. Having his numbers go as high as they were can cause permanent damage if it is not treated promptly. We are lucky his labs were repeated when they were or it could have had a very different outcome. It is moments like this in our life that we are faced with the reality that no matter what our lives can be turned upside down with no warning. We need to be on constant alert with Dylan. The problem becomes making sure we still enjoy life. We have to find the balance between acting like there is nothing wrong and always being on our A game ready.
Tegan has grown so fast these past few weeks. She weighs 10 pounds now and is almost 5 weeks old. I feel like I didn't get to enjoy her as much as I wanted too. I guess this is where the juggling of two kids begins. The positive is that she won't remember this part of her life. She won't remember how messy our house was or if there was laundry to be done. I am looking forward getting back into a normal routine. I know it may be short lived but I plan on enjoying every moment of it and soaking my two kids in.
Taken by our friend Rachel. Simply Joyful Photography
-Amber
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