In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.
Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.
Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.
Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.
The Katie Grace Kelley blog has been set up to allow her friends and family to follow her progress as
she battles leukemia. Katie was two years old when she was diagnosed with acute lymphocytic
leukemia in January of 2008. By June of 2010, she was officially a cancer survivor...
Showing posts with label over night. Show all posts
Showing posts with label over night. Show all posts
Tuesday, February 23, 2010
Tuesday, June 16, 2009
The Struggle Continues
At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.
Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.
Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.
Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.
More Than a Simple Fever
Katie was transported by ambulance from North Country Hospital yesterday afternoon to Fletcher Allen Hospital where she spent the night last night and will apparently be spending several more. Her fever came and went throughout the day yesterday, but more concerning than that is the fact that she still has pneumonia and a nasty ear infection even after 10 days on antibiotics that she was taking specifically to cure those two problems. In addition, her blood counts have dropped.
The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.
We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.
The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.
We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.
Thursday, January 1, 2009
Ushering in The New Year in The Hospital
Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.
Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.
She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.
In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.
However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.
This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.
But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.
Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.
I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.
Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.
She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.
In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.
This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.
But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.
Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.
I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.
Sunday, August 24, 2008
Late Night Update
Katie has had her transfusion. We also got her blood counts back and found a very disappointing ANC of 20. She is feeling fine. In fact, she stayed up late waiting for a transfusion to finish that didn't get started until 8pm. She seems fine except for the fact that she didn't eat a single bite of dinner and I put all sorts of food in front of her. Hopefully she makes up for it at breakfast.
Amy and Josh are staying with Amy's parents tonight so Katie and I have the comfortable and spacious hospital room all to ourselves. She has just fallen asleep and I am going back to join her.
Amy and Josh are staying with Amy's parents tonight so Katie and I have the comfortable and spacious hospital room all to ourselves. She has just fallen asleep and I am going back to join her.
Wednesday, August 20, 2008
Birthday Update
It's late, but Josh and I are now leaving the hospital and headed home. Amy will stay with Katie in the hospital tonight and tomorrow night so that I can get in to school at least a couple of days this week.
Katie celebrated her birthday in the hospital today, and the hospital staff certainly did their best to make sure that she felt especially appreciated today. She was showered with happy birthday wishes and gifts and kindness. The child life specialist went so far as to allow me to shop virtually with a personal shopping assistant. I was given an computer with Internet access to browse online stores for what I still wanted to get Katie for her birthday but didn't have a chance to get while stuck in the hospital. I made up a shopping list from what I found and one of the volunteers took my shopping list and went shopping for some of Katie's birthday presents. Everything I asked for was purchased and it was returned to the room while Katie and I were taking an afternoon nap to recover from the late night last night. I woke up to find a bag full of the presents I had requested, a roll of wrapping paper, some scissors and some tape. By the time Katie woke up she had some presents around her to help set the atmosphere and keep her believing that it really was her birthday and we were doing our best to make it a special day. I didn't let her open a present until her mother, brother and grandparents arrived around 6pm for dinner. Her excitement built all day and she had a great little birthday party in her hospital room. She ate herself full of Chinese food and cupcakes and then toured the hospital in a wagon, giving out party favors; Slinkys and play dough to the kids and cupcakes to the adults. As Josh and I left Amy and Katie were settling down to play some video games.
As for her health today... she felt fine. Her fever was gone by the time the antibiotics were flowing last night and it did not return at all today. I can't explain it and no doctor has been able to explain it yet, but our last few emergency room visits have been very similar. Her ANC drops low, she goes to bed for the night and after a few hours in bed her temperature climbs. We wake her up and make arrangements with the hospital and by the time we get her admitted, the fever has come back down. It is one of the most frustrating feelings in the world to know that I just dragged my daughter out of her bed, and into a hospital where she absolutely does not want to be so she can kick and scream as she is examined and her port is accessed only to have her fever disappear like it was never there in the first place. I just wanted to turn around and bring her back home last night, but there was no way anyone was going to allow that. A fever can be deadly and every fever must be treated like it will be. I am so glad that we are almost to maintenance.
On a side note, my heart goes out to my two uncles who are now battling their own cancers. It is a long hard, scary struggle.
Josh and I are now going to get on the road. I still have to drop him off at my parents house in Newport before going home myself. He should be tucked into bed by midnight and I will get home somewhere around 12:30.
Katie celebrated her birthday in the hospital today, and the hospital staff certainly did their best to make sure that she felt especially appreciated today. She was showered with happy birthday wishes and gifts and kindness. The child life specialist went so far as to allow me to shop virtually with a personal shopping assistant. I was given an computer with Internet access to browse online stores for what I still wanted to get Katie for her birthday but didn't have a chance to get while stuck in the hospital. I made up a shopping list from what I found and one of the volunteers took my shopping list and went shopping for some of Katie's birthday presents. Everything I asked for was purchased and it was returned to the room while Katie and I were taking an afternoon nap to recover from the late night last night. I woke up to find a bag full of the presents I had requested, a roll of wrapping paper, some scissors and some tape. By the time Katie woke up she had some presents around her to help set the atmosphere and keep her believing that it really was her birthday and we were doing our best to make it a special day. I didn't let her open a present until her mother, brother and grandparents arrived around 6pm for dinner. Her excitement built all day and she had a great little birthday party in her hospital room. She ate herself full of Chinese food and cupcakes and then toured the hospital in a wagon, giving out party favors; Slinkys and play dough to the kids and cupcakes to the adults. As Josh and I left Amy and Katie were settling down to play some video games.
As for her health today... she felt fine. Her fever was gone by the time the antibiotics were flowing last night and it did not return at all today. I can't explain it and no doctor has been able to explain it yet, but our last few emergency room visits have been very similar. Her ANC drops low, she goes to bed for the night and after a few hours in bed her temperature climbs. We wake her up and make arrangements with the hospital and by the time we get her admitted, the fever has come back down. It is one of the most frustrating feelings in the world to know that I just dragged my daughter out of her bed, and into a hospital where she absolutely does not want to be so she can kick and scream as she is examined and her port is accessed only to have her fever disappear like it was never there in the first place. I just wanted to turn around and bring her back home last night, but there was no way anyone was going to allow that. A fever can be deadly and every fever must be treated like it will be. I am so glad that we are almost to maintenance.
On a side note, my heart goes out to my two uncles who are now battling their own cancers. It is a long hard, scary struggle.
Josh and I are now going to get on the road. I still have to drop him off at my parents house in Newport before going home myself. He should be tucked into bed by midnight and I will get home somewhere around 12:30.
Saturday, August 16, 2008
Evening Update
Katie has had another bowel movement and she has had her transfusion and her chemotherapy. Plus she got out of her room to play again this afternoon in the play room and the hallway. She was standing and putting some weight on her injured foot too. Now, she is tired. So she is relaxing in bed, watching some cartoons on TV and nibbling some food.
I have to admit that I have not been at the hospital to see her today. Josh and I already had plans for the day. We went to see Circus Smirkus this afternoon at a performance in greensboro. He absolutely loved it. Ther performers were incredible, but the best part for me was just being out of the hospital again. Her little hospital room really wears on us after a while. Josh and I will be staying at home tonight and tomorrow we will head back to the hospital. I'm looking forward to sleeping in my own bed and Josh is yawning everytime I look at him.
I have to admit that I have not been at the hospital to see her today. Josh and I already had plans for the day. We went to see Circus Smirkus this afternoon at a performance in greensboro. He absolutely loved it. Ther performers were incredible, but the best part for me was just being out of the hospital again. Her little hospital room really wears on us after a while. Josh and I will be staying at home tonight and tomorrow we will head back to the hospital. I'm looking forward to sleeping in my own bed and Josh is yawning everytime I look at him.
Friday, August 15, 2008
Quick Update
Not much new to report tonight. Katie was feeling pretty good today and she got out of her room to play several times. She rode on wheeled toys. She climbed on things. She through balls everywhere. She played, she smiled and she laughed. But, she didn't poop and that is what we are all waiting for now. It has been since Sunday.
Her next dose of chemotherapy includes a drug that causes constipation so the doctors are still holding off on it, trying not to compound the problem, but it has to be given within the next 24-48 hours. Hopefully her body starts working correctly again before we have to introduce more problems.
Her blood cell counts still seem to be dropping. Her ANC slowed down and she only dropped from 30 to 10 today, but her red blood count is back down to just 7.2 and her platelets are also down. Amy found new petechia on Katie tonight. Nobody has even mentioned a date for returning home. We will just have to wait and see what tomorrow brings.
Her next dose of chemotherapy includes a drug that causes constipation so the doctors are still holding off on it, trying not to compound the problem, but it has to be given within the next 24-48 hours. Hopefully her body starts working correctly again before we have to introduce more problems.
Her blood cell counts still seem to be dropping. Her ANC slowed down and she only dropped from 30 to 10 today, but her red blood count is back down to just 7.2 and her platelets are also down. Amy found new petechia on Katie tonight. Nobody has even mentioned a date for returning home. We will just have to wait and see what tomorrow brings.
Wednesday, August 13, 2008
Feeling Better After Blood
As Katie got her transfusion today, the life came back into her. She had been lying in bed wanting to do nothing but watch tv. She didn't even want to sit up straight. After the blood had been flowing for about 20 minutes, she was standing on my lap, bouncing around making me work to keep her safe. Her foot seems to be feeling better. She didn't complain of any pain while she was standing and didn't seem to prefer one foot over the other. Her legs were a little weak though and they were shaking with the effort to play.
Her appetite was pretty good too. She ate breakfast and lunch well and treated dinner as an extended snack opportunity. I wish things all the food that is going in would start to come out the other end soon. She hasn't had a bowel movement since Sunday and things are getting a little desparate on that end.
Josh had another good day playing with his cousin. I think I'll take him over to visit his grandparents tomorrow and give my brother and sister-in-law a break from us for a while. Besides, Josh's grandparents have seen him for a total of about 15 minutes so far this week and we have been in Burlington since Monday night.
Her appetite was pretty good too. She ate breakfast and lunch well and treated dinner as an extended snack opportunity. I wish things all the food that is going in would start to come out the other end soon. She hasn't had a bowel movement since Sunday and things are getting a little desparate on that end.
Josh had another good day playing with his cousin. I think I'll take him over to visit his grandparents tomorrow and give my brother and sister-in-law a break from us for a while. Besides, Josh's grandparents have seen him for a total of about 15 minutes so far this week and we have been in Burlington since Monday night.
Tuesday, August 12, 2008
Business as Usual
We are now in a holding pattern. Katie felt fine this morning and then as the day wore on her temperature, breathing rate and heart rate all rose while her blood pressure dropped. By 4pm this afternoon she reached 101.5 and felt pretty bad. The nurse gave her some Tylenol at that point. That brought everything back under control and she is now feeling fine again. She is talking, sitting up and eating.
I am back at my brother's house tonight and Josh and Kyler are getting ready to spend the night in a tent setup on the floor. They are both extremely excited. Of course we also wound them up a little by going to Pizza Put for dinner and playing a couple of rounds of Laser Tag. Now I have to sit down and get some college work done. This also happens to be the last week of a course that I am taking and I have some work due Wednesday night and again Sunday night.
I am back at my brother's house tonight and Josh and Kyler are getting ready to spend the night in a tent setup on the floor. They are both extremely excited. Of course we also wound them up a little by going to Pizza Put for dinner and playing a couple of rounds of Laser Tag. Now I have to sit down and get some college work done. This also happens to be the last week of a course that I am taking and I have some work due Wednesday night and again Sunday night.
Back in The Hospital
Katie's fever came back yesterday afternoon and spiked at 101.5 last night. Given her previously low ANC, we were pretty sure that this would mean that Katie would be staying in the hospital at least over night. We had already had too many late nights so we tried to avoid the middle of the night transfer to Fletcher Allen from North Country by ambulance. Instead, we drove straight to Fletcher Allen where she was assessed by the emergency room staff and then admitted to Baird 5 again. Her temperature had come back down again by the time we got to the hospital, but her ANC was hovering around 130 and her platelets were low enough to require a transfusion.
I spent the night with Josh at my brother's house. We left the hospital just after Katie was moved into her room on Baird 5. When we left, she was comfortable and getting ready to go to sleep. Now, I'm heading back to the hospital and leaving Josh here with by brother's family.
I spent the night with Josh at my brother's house. We left the hospital just after Katie was moved into her room on Baird 5. When we left, she was comfortable and getting ready to go to sleep. Now, I'm heading back to the hospital and leaving Josh here with by brother's family.
Thursday, July 24, 2008
We're Settling In
OK, we have some more information. Pneumonia has been ruled out. Katie's lungs are just fine. Her bowels are moving - albeit slowly. Her blood pressure is rising. Her heart rate is slowing. Her fevers keep coming and going still, but none have been very high. She is pretty well stabilized at this point.
One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.
Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.
Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.
By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.
One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.
Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.
Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.
By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.
3:30 AM At Fletcher Allen
Although the night started out at North Country Hospital, that is not where we stayed. The doctors at Fletcher Allen were not thrilled to hear Katie's vital signs and symptoms so they wanted us brought to them ASAP. Really, we probably just should have driven to Fletcher Allen straight away. Things didn't go as well as they should have at North Country. We left home at 9:30 and Katie hadn't had an IV put in or any blood tested or any medications given until after 11:30. In addition, it was the first time that someone had been on duty who knew how to access Katie's port during one of our emergency visits since this whole process started and that person was unable to properly access her port after a couple of tries. Port access is usually a quick ten seconds and its over with. Last night, each attempt was drawn out to thirty seconds or more with Katie in pain and afraid the whole time. When that failed, an IV was attempted in her arm with the same results. The nurse couldn't get a vein. Finally the actual doctor was brought in and an IV was put in quickly and easily. It was very traumatic for poor Katie and I wish it hadn't happened that way. We have never had a less than excellent experience at North Country before, so I'm sure this was a fluke but is was very disappointing. The IV had only been in for ten minutes when Fletcher Allen made the call to transfer her, then we had to wait for the ambulance to transfer her from North Country to Fletch Allen. By the time Katie arrived at Fletcher Allen it was 3:30 in the morning and that's when treatment finally started.
The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.
This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.
At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.
The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.
This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.
At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.
Thursday, May 8, 2008
Day 1 of 2 Done.
Our first of two days in the Burlington area is over and it went fairly smoothly. The ride here was nice (we're still here). By traveling back and forth so often, I have discovered a new and more scenic route to get to Essex from Cambridge, bypassing the small and tedious towns in between and replacing them with green pastures, and freshly turned over corn fields. Of course the smell of traffic is also replaced by the smell of manure but I'll take that trade any day.
We arrived at Fletcher Allen promptly at 9:30 and just as promptly wondered why we had bothered to get there on time. We didn't see our first doctor until 12:30 and didn't get our first procedure until 1pm. Of course, during this time Katie was hungry and thirsty. She had not been allowed to eat or drink since midnight the night before.
After we got going, things went smoothly and quickly. The LP and bone marrow extraction went smoothly and she woke up from her anesthesia quickly and happily. She then ate a sandwich and some macaroni and cheese while she got her last dose of chemotherapy and then we were out of there and off to spend the evening with Grandpa Art and Grandma Kathy. We were done by 3pm.
We made a quick stop on Church street to do a little shopping for mother's day and now we a hanging out, waiting for the hamburgers and hot dogs to be brought in off the grill. After dinner, we will be headed right to bed because tomorrow morning will start off with an 8:30 appointment for a shot, an hour of monitoring and then we're done. I'll be looking forward to a scenic trip back home.
We arrived at Fletcher Allen promptly at 9:30 and just as promptly wondered why we had bothered to get there on time. We didn't see our first doctor until 12:30 and didn't get our first procedure until 1pm. Of course, during this time Katie was hungry and thirsty. She had not been allowed to eat or drink since midnight the night before.
After we got going, things went smoothly and quickly. The LP and bone marrow extraction went smoothly and she woke up from her anesthesia quickly and happily. She then ate a sandwich and some macaroni and cheese while she got her last dose of chemotherapy and then we were out of there and off to spend the evening with Grandpa Art and Grandma Kathy. We were done by 3pm.
We made a quick stop on Church street to do a little shopping for mother's day and now we a hanging out, waiting for the hamburgers and hot dogs to be brought in off the grill. After dinner, we will be headed right to bed because tomorrow morning will start off with an 8:30 appointment for a shot, an hour of monitoring and then we're done. I'll be looking forward to a scenic trip back home.
Wednesday, May 7, 2008
A Productive, Fun Day
Katie and I ended up spending the day together after my parents called us at 5:30 this morning to say my dad wasn't feeling good, had a sore throat, and didn't want to expose Katie. So we started out with a bath and then headed out to do some errands. We went to the bank to make a deposit into Katie's Kids Club account. We went to the hospital to get a little blood drawn for cell counts. We went to the auto parts store for a new multi-meter. And we went out to lunch at Jennifer's in Derby. After that, I brought her home and she napped away the last couple hours of the afternoon while I did a little work cleaning out the winter stuff from the basement to make room for the summer stuff.
Tomorrow, Katie and I head out early for Burlington. We have a long procedure to look forward to and then another one on Friday so we will be spending the night with Art and Kathy. Katie's blood cell count results came in this afternoon and they are impressive. Her ANC is up over 900 now. She has officially recovered from the last round of chemotherapy. That's why we start again tomorrow. Here we go again...
Tomorrow, Katie and I head out early for Burlington. We have a long procedure to look forward to and then another one on Friday so we will be spending the night with Art and Kathy. Katie's blood cell count results came in this afternoon and they are impressive. Her ANC is up over 900 now. She has officially recovered from the last round of chemotherapy. That's why we start again tomorrow. Here we go again...
Saturday, April 19, 2008
Still No Change
Katie spent the entire day in bed, suffering from a low grade fever. I know that I wrote that her fever had broke last night, but it came back by 10am and stuck with her for the rest of the day. It left her feeling generally low on energy and unwilling to move, be moved or be touched. However, she did at least have enough energy to interact with people today and was generally in a good mood as long as the person she was interacting with was not trying to take her temperature, take her blood pressure, give her medicine or change her diaper.
Because of the sustained fever, the doctors have added another antibiotic to the stream of drugs flowing through her IV. The cultures so far have tested negative for all of the nasty bacterial infections so far, so the doctors are thinking the cause of Katie's symptoms is some kind of viral infection that her body will have to fight off on its own.
Given that possibility, it now looks like Katie will stay in the hospital until Wednesday or Thursday of this week. Katie hasn't complained yet, but this stay at the hospital has to feel really long. The first time we were admitted, back in January, she was allowed to wander the halls at will, ride bikes, visit the play room, etc... This time, she has been and will be spending all of her time in her little isolated hospital room.
Josh and I will be headed home Sunday while Amy and Katie stay at Fletcher Allen. School starts up again Monday and Josh and I will be back in school and on our regular schedules again for a
Thursday, April 17, 2008
Things Were Going So Well....
Things were going well until this morning. Katie slept late which wasn't surprising since she wouldn't sleep alone last night and we don't always make the best sleeping companions. Josh and I headed off to the barn to await the arrival of the vet and Amy crawled into bed with Katie to read her some morning stories and get her moving. They were going to go to Fletcher Allen for some chemotherapy today while we were working with the horses.
Unfortunately, while on the way to Burlington, Katie developed a fever. It did not subside at the hospital during the first couple of hours that she was there and her blood tests indicated that she might have an infection of some kind. All of her blood counts are up after her last transfusion except for her white count which is still lower. The fever and the still dropping white count have the doctors concerned enough that Katie will be spending the rest of her vacation in the hospital.
Josh and I have canceled our camping trip and are packing some things and heading to Fletcher Allen shortly to bring Amy and Katie some clothes and other necessities. We will be visiting my brother while we are down there so that Josh can have a chance to play with his cousins, Kyler and Eric again. My cell phone isn't working since it went through the wash yesterday. Amy's cell phone is working, but she left the charger here when she left this morning so she is only turning it on to make calls and check messages. I'm bringing a charger with me so her phone will be on full time again as soon as I get there. I will either update the blog again later tonight or tomorrow morning depending on whether we have any more information at that time.
Unfortunately, while on the way to Burlington, Katie developed a fever. It did not subside at the hospital during the first couple of hours that she was there and her blood tests indicated that she might have an infection of some kind. All of her blood counts are up after her last transfusion except for her white count which is still lower. The fever and the still dropping white count have the doctors concerned enough that Katie will be spending the rest of her vacation in the hospital.
Josh and I have canceled our camping trip and are packing some things and heading to Fletcher Allen shortly to bring Amy and Katie some clothes and other necessities. We will be visiting my brother while we are down there so that Josh can have a chance to play with his cousins, Kyler and Eric again. My cell phone isn't working since it went through the wash yesterday. Amy's cell phone is working, but she left the charger here when she left this morning so she is only turning it on to make calls and check messages. I'm bringing a charger with me so her phone will be on full time again as soon as I get there. I will either update the blog again later tonight or tomorrow morning depending on whether we have any more information at that time.
Tuesday, February 5, 2008
Over the River and Through the Woods, But Please Not to Grandma's
Amy and Katie are at Fletcher Allen this morning for another check-up and treatment. I am home with Josh and we have another snow day.
From what Amy told me this morning, Katie was not happy to end up at Grandma Kathy's house last night. She stayed awake for the entire trip to South Burlington and did not give here grandparents a warm welcome when she got there. Apparently she was even physically violent last night. Unfortunately she was still grumpy about the situation when she woke up this morning. I think the whole Burlington area is now a scary unwelcome sight for Katie. She knows that the only thing we go there for is to go to the hospital. With her immune system down, we can't take her to any stores, restaurants, or play areas. For her, there is no good reason to get in the car and travel for two hours unless it is to come home.
The Tuesday trips to Fletcher Allen a different than the Friday trips. They are quicker and easier on Katie, which should help her mood a little bit, and that should get them back home early this afternoon, which should help her mood improve even more.
From what Amy told me this morning, Katie was not happy to end up at Grandma Kathy's house last night. She stayed awake for the entire trip to South Burlington and did not give here grandparents a warm welcome when she got there. Apparently she was even physically violent last night. Unfortunately she was still grumpy about the situation when she woke up this morning. I think the whole Burlington area is now a scary unwelcome sight for Katie. She knows that the only thing we go there for is to go to the hospital. With her immune system down, we can't take her to any stores, restaurants, or play areas. For her, there is no good reason to get in the car and travel for two hours unless it is to come home.
The Tuesday trips to Fletcher Allen a different than the Friday trips. They are quicker and easier on Katie, which should help her mood a little bit, and that should get them back home early this afternoon, which should help her mood improve even more.
Monday, February 4, 2008
Another Good Day
Katie had another wonderful day today. Her spirits were good, her energy was good, and her health was good. What more could I ask for? She fell asleep late in the afternoon, shortly after Amy got home from work. She then slept for another three hours before waking up and being shuffled off into a waiting car to be transported to Grandma's house before the freezing rain hits.
She and Amy are headed down to South Burlington tonight because Katie's appointment tomorrow is at 9am. So rather than leaving here in the freezing rain at 6am, it was easier to pack her up tonight and head out. Katie wasn't all that pleased with being bundled up and hauled off, but if the drooping eyelids were an indication, she won't be awake for much of the ride.
Josh and I are on our own for the rest of the evening and for the morning routine. I bet I won't spend more than a few hours in bed alone tonight, and I can guarantee that we will be scrambling to be just barely on time tomorrow. Amy is the one who keeps us on schedule in the morning. Josh and I tend to take showers that are too long and then linger over breakfast as if it were the only meal of the day. We will both be glad to see Amy and Katie at the end of the day.
She and Amy are headed down to South Burlington tonight because Katie's appointment tomorrow is at 9am. So rather than leaving here in the freezing rain at 6am, it was easier to pack her up tonight and head out. Katie wasn't all that pleased with being bundled up and hauled off, but if the drooping eyelids were an indication, she won't be awake for much of the ride.
Josh and I are on our own for the rest of the evening and for the morning routine. I bet I won't spend more than a few hours in bed alone tonight, and I can guarantee that we will be scrambling to be just barely on time tomorrow. Amy is the one who keeps us on schedule in the morning. Josh and I tend to take showers that are too long and then linger over breakfast as if it were the only meal of the day. We will both be glad to see Amy and Katie at the end of the day.
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