04.02.2012- Getting Labs @ LPCH We often times like to hold our breath and not post until we have a good few weeks of "uneventful stuff", its not that we don't necessarily have anything to post about but with this life you can't just jump to the worst of thoughts and certainly can't hold those thoughts to be true until a little time has passed and you get some breathing room....or a few sets of solid labs, no sickness, no hospital stays, and/or as stated before not much to report. At this point this is when most of us living this life will let our guard down and attempt to go about our everyday life and assume we are on a good path for what we hope will be the foreseeable future.
The last few months have been a bit unpredictable with lots of up's and down's by way of colds, asthma, infections, and pesky labs not doing what we hope or expect. Our daily life of attempting to have normalcy and just go about our business of raising our family, working (if only to try and pay for the darn insurance), and doing the best we can hit some major hiccups as of lately.
On Monday of last week we had a "normal" follow-up clinic visit with Dylan's transplant team at Lucile Packard Children's Hospital, it was to be our every other month visit (we alternate between Kaiser one month and LPCH then next, that way Dylan is followed at min every single month and see's a physician that is familiar with him and his condition), we arrived bright and early 100+ miles away from our home to have labs promptly at 8am. After labs Dylan is given his Prograf and his 1 hr wait starts. While waiting for his med to absorb we always make a point of heading over to the hospital side of the facility to head down into the cafeteria so Amber and I can grab some much needed coffee and be close to food so Dylan can eat when he is able to. As we made our way into the cafeteria and sat down with our coffee's we received a call from our transplant coordinator whom advised us that Dylan needed and "immediate ultrasound of his liver" and to head over to the radiology dept. A sinking feeling came over us and we knew where this was headed, only time we are called within 15-30 mins of labs is when something is not correct and/or there is major causes of concern.
We made it through the ultrasound exam and headed back to our transplant team to finish out what was suppose to be our normal doctor visit/checkup. Dylan's doctor advised us that Dylan's labs were really high and they did the ultrasound to ensure he has proper blood flow and get a look at the liver. The results were ok on the ultrasound but they advised us that with labs this high he needed to have another liver biopsy; as they have to physically rule out rejection and how they treat is dependent on this critical factor. So we would need to come back the following day to have that done. In addition they wanted a MRCP, which is a MRI that looks at the bile ducts of the liver to again ensure they are functioning properly and are open without obstruction. We were advised that they would be admitting Dylan the following day for the biopsy and they would do there best to coordinate the MRCP within a day or so but they couldn't have it done same day (it would of been nice if it could of all been done same day, that way he only gets poked for one IV and only needs to go to sleep 1x time as opposed to two separate procedures). Unfortunately this is how it works out often times. The hospital is like a toll booth and you have to wait your turn to use the fancy machines that literally run non stop and of course its done by priority/severity of person needing it.
The last few months have been a bit unpredictable with lots of up's and down's by way of colds, asthma, infections, and pesky labs not doing what we hope or expect. Our daily life of attempting to have normalcy and just go about our business of raising our family, working (if only to try and pay for the darn insurance), and doing the best we can hit some major hiccups as of lately.
On Monday of last week we had a "normal" follow-up clinic visit with Dylan's transplant team at Lucile Packard Children's Hospital, it was to be our every other month visit (we alternate between Kaiser one month and LPCH then next, that way Dylan is followed at min every single month and see's a physician that is familiar with him and his condition), we arrived bright and early 100+ miles away from our home to have labs promptly at 8am. After labs Dylan is given his Prograf and his 1 hr wait starts. While waiting for his med to absorb we always make a point of heading over to the hospital side of the facility to head down into the cafeteria so Amber and I can grab some much needed coffee and be close to food so Dylan can eat when he is able to. As we made our way into the cafeteria and sat down with our coffee's we received a call from our transplant coordinator whom advised us that Dylan needed and "immediate ultrasound of his liver" and to head over to the radiology dept. A sinking feeling came over us and we knew where this was headed, only time we are called within 15-30 mins of labs is when something is not correct and/or there is major causes of concern.
We made it through the ultrasound exam and headed back to our transplant team to finish out what was suppose to be our normal doctor visit/checkup. Dylan's doctor advised us that Dylan's labs were really high and they did the ultrasound to ensure he has proper blood flow and get a look at the liver. The results were ok on the ultrasound but they advised us that with labs this high he needed to have another liver biopsy; as they have to physically rule out rejection and how they treat is dependent on this critical factor. So we would need to come back the following day to have that done. In addition they wanted a MRCP, which is a MRI that looks at the bile ducts of the liver to again ensure they are functioning properly and are open without obstruction. We were advised that they would be admitting Dylan the following day for the biopsy and they would do there best to coordinate the MRCP within a day or so but they couldn't have it done same day (it would of been nice if it could of all been done same day, that way he only gets poked for one IV and only needs to go to sleep 1x time as opposed to two separate procedures). Unfortunately this is how it works out often times. The hospital is like a toll booth and you have to wait your turn to use the fancy machines that literally run non stop and of course its done by priority/severity of person needing it.
04.03.2012- Dylan really upset about having to go to sleep for his biopsy As we prepared for our stay for yet another biopsy Dylan was very upset. He cried the whole way in the car and was just down right really unhappy about having to do this again. He even commented to me, "Dad, since this is your liver in me can you do the biopsy for me". As much as I wished I could do that for him, sadly I couldn't and he just didn't understand why he has to keep doing these. I won't lie and I'm sure I've said this countless times over and over but this stuff and answering the questions and why and giving reasoning to something I can't even fully comprehend or explain is very difficult. I think as parents we are so accustom to just saying "You're going do this or that because I said so". But this situation and this life doesn't warrant those types of responses, at least not from us. We have to support him the best we can given our means of how we know best. In one sense, how we respond to him now and with this turmoil and very scary stuff truly does mold him into whom he will become. He is a little kid going through stuff that makes grown men/women scared for there life and unfortunately this stuff he does over, and over, and over again. I will say we also make a point of not babying Dylan but at the same time he deserves some serious slack...it truly is heartbreaking watching him and how his brain works and hear the fear in him (all of which is understandable).
We made it through his liver biopsy and as usual no results come back from that for at min 24 hrs. So Dylan and I hunkered down for a restless and sleepless night in the hospital. Amber was able to go crash out at our close families place that lives nearby (we are very fortunate to have family fairly close to the hospital and we are eternally grateful that we are always welcomed into there home in a time of need and spur of the moment, as when this stuff happens it disrupts there lives as well by lending a hand to us...its truly one less stress to think about on our end and we're so grateful to them.)
We made it through his liver biopsy and as usual no results come back from that for at min 24 hrs. So Dylan and I hunkered down for a restless and sleepless night in the hospital. Amber was able to go crash out at our close families place that lives nearby (we are very fortunate to have family fairly close to the hospital and we are eternally grateful that we are always welcomed into there home in a time of need and spur of the moment, as when this stuff happens it disrupts there lives as well by lending a hand to us...its truly one less stress to think about on our end and we're so grateful to them.)
04.03.2012- Dylan in recovery after liver biopsy
The next day (Wednesday) the transplant doc(s) came in and said preliminary results of the biopsy looked good but Dylan had a high number of Eosinophils in his liver. These are a cell that are found in rejection but "typically" with rejection there are other cells notated in conjunction with these Eosinophils. So for the moment they advised that they don't believe he had classic signs of rejection going on but also weren't quite sure either. They suggested maybe he was having an allergic reaction to his Prograf, so they wanted us to meet again with the allergy folks to rule out, our at min discuss this being an allergy; albeit to one of his medications or environmental. Before long the Allergist folks arrived in the room and discussed Dylan's meds, living situation, or traveling situation (or should I say lack thereof as we don't go anywhere). After all this, towards the evening we were cut loose from the hospital and advised we needed to be back Friday to do his scheduled MRCP (ugh this was a bummer that we would go home, then make our way back only 36 hrs later). So we would get one day of relief thus far, the following day would be spent with me trying to catch up at work and Amber trying to hold down the home front...thus far it had been a busy and very exhausting week.
04.06.2012- Waiting to be called back for MRCP Friday was upon us and it was another early morning start on our end. We arrived on time and waited in the Ford Family Surgery Center of LPCH, waited for our turn to call Dylan back for his IV and sleepy medicine....again.
Some will say this should be "a piece of cake", "easier with each time", "he must be use to it by now". Let me assure you as a parent this has yet to become or feel natural in any manner. Waiting with your child in a surgery center and knowing what comes next is not a comfortable feeling...no matter how invasive the procedure may be.
Dylan was called back to have his IV started and start prepping for him for going under general anesthesia. The nurse attempted to get a IV started for well over 10-15 mins and blew out 3 of his veins on his forearms and hand. At this point Dylan had been stuck almost a dozen times over the course of the last 5 days. I'm sure he was a bit dehydrated as well b/c he was now going on his 2nd anesthesia procedures where he needed to fast for a total of a days worth of time. Little kids aren't like adults, its much harder on them when they need to fast this long.
After Dylan was put under we made our way to the waiting area that houses all the other parents that are awaiting for there child to get out of surgery and/or procedures and this is some of the most difficult times...you just sit and wait and wait and wait. They have this encrypted TV monitor that is a digital display of patients in/out of the rooms. They also give you a pager thingy, one like you would get while you wait at a restaurant. You sit and can't help but start thinking about what number is my kid on that TV, what if the pager thingy isn't working properly, what if they don't come get us in time prior to him waking up, etc... It really is not fun to sit in this room and stare at the walls and just think about things, as the mind has no option but to wander.
After an agonizing 2.5 hrs I was led back to the recovery room where I get to sit with Dylan and comfort him. I encouraged him to eat his popsicle, drink some juice, and become more acclimated with his surroundings. We were only in recovery for a short while and it was just what we needed. Our 4 days out of the last 5 day ordeal was at least at this moment...over.
Over the course of the following 24hrs we received calls from the Allergy department advising us that this for sure was not related to any medication allergy and they strongly felt this was not from any allergy related incident/environmental. The transplant coordinator also advised us that Dylan's MRCP looked good from the preliminary results and they would contact us later in the week to see what the next plan of action is. Although its good that Dylan's Liver Biopsy and MRCP seem "good" and that does have some comfort, its not comforting knowing we just went through a hellacious week to literally not know the cause of what is causing these issues in Dylan. Their is nothing natural about worrying for your child's health. These procedures feel like a fresh new wound each and every time. The hope is its one step closer to answers; sadly oftentimes its more confusion and more procedures.
-Noah
Some will say this should be "a piece of cake", "easier with each time", "he must be use to it by now". Let me assure you as a parent this has yet to become or feel natural in any manner. Waiting with your child in a surgery center and knowing what comes next is not a comfortable feeling...no matter how invasive the procedure may be.
Dylan was called back to have his IV started and start prepping for him for going under general anesthesia. The nurse attempted to get a IV started for well over 10-15 mins and blew out 3 of his veins on his forearms and hand. At this point Dylan had been stuck almost a dozen times over the course of the last 5 days. I'm sure he was a bit dehydrated as well b/c he was now going on his 2nd anesthesia procedures where he needed to fast for a total of a days worth of time. Little kids aren't like adults, its much harder on them when they need to fast this long.
After Dylan was put under we made our way to the waiting area that houses all the other parents that are awaiting for there child to get out of surgery and/or procedures and this is some of the most difficult times...you just sit and wait and wait and wait. They have this encrypted TV monitor that is a digital display of patients in/out of the rooms. They also give you a pager thingy, one like you would get while you wait at a restaurant. You sit and can't help but start thinking about what number is my kid on that TV, what if the pager thingy isn't working properly, what if they don't come get us in time prior to him waking up, etc... It really is not fun to sit in this room and stare at the walls and just think about things, as the mind has no option but to wander.
After an agonizing 2.5 hrs I was led back to the recovery room where I get to sit with Dylan and comfort him. I encouraged him to eat his popsicle, drink some juice, and become more acclimated with his surroundings. We were only in recovery for a short while and it was just what we needed. Our 4 days out of the last 5 day ordeal was at least at this moment...over.
Over the course of the following 24hrs we received calls from the Allergy department advising us that this for sure was not related to any medication allergy and they strongly felt this was not from any allergy related incident/environmental. The transplant coordinator also advised us that Dylan's MRCP looked good from the preliminary results and they would contact us later in the week to see what the next plan of action is. Although its good that Dylan's Liver Biopsy and MRCP seem "good" and that does have some comfort, its not comforting knowing we just went through a hellacious week to literally not know the cause of what is causing these issues in Dylan. Their is nothing natural about worrying for your child's health. These procedures feel like a fresh new wound each and every time. The hope is its one step closer to answers; sadly oftentimes its more confusion and more procedures.
-Noah
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