12/31/2009 Thursday
Yesterday we took William to an appointment at the Hem/Onc Clinic to see a Hematologist. They wanted to check him over because his ANC (Absolute Neutrophil Count) is so low. We had to take him to the lab first where they needed to draw a lot of blood for a few different tests. Unfortunately they couldn’t get the vein on the 1st try. The 2nd attempt worked, but moved so slow they thought it may clot so they had to poke him a 3rd time. He cried and it was pretty stressful, but I was still amazed at how well he handled everything.
They ran a CBC (Complete Blood Count) and also wanted to send off some tests for pretty much every virus under the sun. Even HIV! The Dr. Said he knows he doesn’t have HIV, but this way they can try to eliminate some more possibilities as far as what is causing William’s Neutropenia. He explained that usually they will wait to test for these viruses until after genetic testing is complete, but since William’s ANC is so low they thought it would be best to do it sooner. Remember we are waiting a total of 6 weeks or so until genetic testing comes back.
Dr. Messinger reiterated several things for us at the appointment. He thought that overall Liam looked good and seemed healthy. He has not had any fevers and is showing no signs of infection. He reminded us how important it will be to call right away if we see fevers or any signs of infection. He also talked about the Anti-NeutrophilAntibody that is present in Liam’s blood. He said that this could mean that Liam has “Benign Neutropenia of Childhood” (See Blog post from 12/18/2009 to see more info about this). The only thing is that most children that have Benign Neutropenia of Childhood present symptoms after the 1st year, not around 8-9 months like he did. They also usually do not have as severe of an infection like he did (which caused him to be hospitalized). Dr. Messinger said that does NOT mean that he can’t have Benign Neutropenia of Childhood, but it seems interestingly different at this point. He said unfortunately we just have to keep waiting for genetic testing before we can know for sure.
Will’s CBC did not come back from the lab while we were at the appointment so the Dr. said to go home and they’d send us the results later on. When we did get the results Dr. Messinger said that Liam had NO Neutrophils and so they could not calculate an ANC for him. HIS ANC WAS ZERO!!! To me this was devastating, but Dr. Messinger said that he doesn’t care about the specific number each time, instead we need to focus on if he is healthy. The main purpose of these tests 3x a week is to create a baseline of his Neutrophil levels and not to reacreate our plan of action each time. Because of that Dr. Messinger does not want to put Liam on GCSF (Granulocyte Stimulation Factor a drug that raises your Neutrophil levels). He said it is great that we know that GCSF will work for him, but we don’t want to mess with our efforts to see Liam’s true baseline by synthetically raising his Neutrophil levels. He said that his low ANC still does not point us in one direction or another.
After tomorrow we will have completed 2/6 weeks of the 3x a week pokes! That’s a good thing I think. Now if we can keep him healthy and get him to sleep at night again we’ll be on a good path. Last night he woke up from 12:00 until 2:00 and then continued to whine or cry most of the night. He didn’t want to sleep in his bed, the pack n play in our room, or in our bed. He did want to nurse however so he drank so much milk last night that he leaked pee out of his diaper all over his jammies. I said he smelled like an old man in a nursing home when we finally got up today!
We still feel strongly that nothing is wrong physically and it is just and emotional phase for him. (I think the 3 pokes in the lab yesterday may have re-traumatized him a bit…darn it!)
We are wary about heading out to visit anyone and celebrate New Year’s because we want sleep for him and us! We’ll see how we ring it in but we are VERY hopeful that 2010 will bring health and great things for our family and friends!
Happy New Year!
~Katie, Paul and Liam Moeller
Thursday, December 31, 2009
Monday, December 28, 2009
Cautious 12/28/2009
12/28/2009 Monday
I stopped writing last night so Paul and I could watch a movie together. William has not been sleeping well at all for the past 2 nights so we were trying to enjoy a quiet moment before he woke up crying. And that he did…we were up over and over again last night with him. I ended up falling asleep on the floor next to his crib in the 5:00 hour as he would cry in his crib unless he was holding my finger through the bars, or hearing my voice every now and then.
I think with all he has been through he just wants reassurance that we are going to be here for him at all times. It’s sweet that he is especially partial to me right now, but utterly exhausting. We worked really hard in the early stages of his life to establish a bedtime routine and for the most part it has paid off. He has been a good sleeper for many months now, so I think for Paul and I we are afraid this is like starting over again. I try to look at the fact that we have been so blessed with such a good baby, so we can handle this tough stuff a little better.
Now back to the important details…
We took Liam to Children’s on Saturday for his 3rd poke of the week. We went there since it was Christmas Day on Friday and our clinic wasn’t open. We thought it would be a pretty quick in and out so Paul drove the car around to avoid having to pay for parking and my friend Elizabeth and I went in. We ended up going on a walking wild goose chase through the hospital as various people sent us to different places. Then we were sent to Admitting where they had to do a full registration (just as if we were admitting him to stay in the hospital) and then finally we made it to the lab. After an unsuccessful arm poke, they got his CBC by doing a finger stick. Poor baby. The lab told me that they cannot share any of the lab results with me unless it came from a doctor so I would not be able to find out any counts until Monday. I was pretty curious too.
Today we brought Liam to our normal clinic to have a finger stick. He was SO good he didn’t cry at all! I’m telling you we have the BEST baby sometimes. We were out running errands when I got a call from his pediatrician. He wanted to share the lab results which were again disappointing. He was reading off numbers as I was driving so I figured I would look it all up online again when I got home. I also called the Hem/Onc clinic to find out what Saturday’s results had been,
Apparently Saturday his ANC (Absolute Neutrophil Count) was in the 200 range. Not good at all, but it had nearly doubled since Wednesday. Then the nurse and I calculated William’s ANC from today’s CBC. It came out to be only 62! She talked to me about watching for fevers, and any spots on his body that would indicate an infection. William is dangerously at risk for getting an infection with such a low ANC. She said to remember good handwashing, watch for fevers, and keep him away from extremely sick people. We also scheduled an appointment for him to see a Hematologist on Thursday. I think they will just look at the latest ANC levels and look at him for any signs of infection.
It feels like such a waiting game. There’s nothing to do but try and keep him healthy and try not to worry or think too far ahead.
Hope everyone reading this had a WONDERFUL Christmas with family or friends! William, Paul, and I were so lucky to be able to celebrate Christmas together and with people we love. Please keep healthy thoughts heading his way!
Love,
The Moeller’s
I stopped writing last night so Paul and I could watch a movie together. William has not been sleeping well at all for the past 2 nights so we were trying to enjoy a quiet moment before he woke up crying. And that he did…we were up over and over again last night with him. I ended up falling asleep on the floor next to his crib in the 5:00 hour as he would cry in his crib unless he was holding my finger through the bars, or hearing my voice every now and then.
I think with all he has been through he just wants reassurance that we are going to be here for him at all times. It’s sweet that he is especially partial to me right now, but utterly exhausting. We worked really hard in the early stages of his life to establish a bedtime routine and for the most part it has paid off. He has been a good sleeper for many months now, so I think for Paul and I we are afraid this is like starting over again. I try to look at the fact that we have been so blessed with such a good baby, so we can handle this tough stuff a little better.
Now back to the important details…
We took Liam to Children’s on Saturday for his 3rd poke of the week. We went there since it was Christmas Day on Friday and our clinic wasn’t open. We thought it would be a pretty quick in and out so Paul drove the car around to avoid having to pay for parking and my friend Elizabeth and I went in. We ended up going on a walking wild goose chase through the hospital as various people sent us to different places. Then we were sent to Admitting where they had to do a full registration (just as if we were admitting him to stay in the hospital) and then finally we made it to the lab. After an unsuccessful arm poke, they got his CBC by doing a finger stick. Poor baby. The lab told me that they cannot share any of the lab results with me unless it came from a doctor so I would not be able to find out any counts until Monday. I was pretty curious too.
Today we brought Liam to our normal clinic to have a finger stick. He was SO good he didn’t cry at all! I’m telling you we have the BEST baby sometimes. We were out running errands when I got a call from his pediatrician. He wanted to share the lab results which were again disappointing. He was reading off numbers as I was driving so I figured I would look it all up online again when I got home. I also called the Hem/Onc clinic to find out what Saturday’s results had been,
Apparently Saturday his ANC (Absolute Neutrophil Count) was in the 200 range. Not good at all, but it had nearly doubled since Wednesday. Then the nurse and I calculated William’s ANC from today’s CBC. It came out to be only 62! She talked to me about watching for fevers, and any spots on his body that would indicate an infection. William is dangerously at risk for getting an infection with such a low ANC. She said to remember good handwashing, watch for fevers, and keep him away from extremely sick people. We also scheduled an appointment for him to see a Hematologist on Thursday. I think they will just look at the latest ANC levels and look at him for any signs of infection.
It feels like such a waiting game. There’s nothing to do but try and keep him healthy and try not to worry or think too far ahead.
Hope everyone reading this had a WONDERFUL Christmas with family or friends! William, Paul, and I were so lucky to be able to celebrate Christmas together and with people we love. Please keep healthy thoughts heading his way!
Love,
The Moeller’s
12/27/2009
Sorry it has taken a while to update, I have had lots to say (is anyone surprised?) but the Holidays have kept us busy.
I’ll start off with any info we have received in the last week…
Monday I took William in to get his finger pricked to begin the 3x a week for 6 weeks. We were ordered by our Hematologist to keep track of the levels we get from each CBC (Complete Blood Count) but when I got to our Dr. office lab they said they can’t share the results and that I could set up an online profile. I set it up but it is still not showing lab results. (Meaning I couldn’t find out what Will’s ANC Absolute Neutrophil Count was for Monday).
On Wednesday Morning he and I went to the Hem/Onc clinic for a scheduled check in visit. They did a lab draw for his second CBC of the week and then we met with a Nurse Practitioner because our Hematologist was on vacation. After a physical exam she thought that he looked really good. No cough, or cold symptoms, his incision has healed nicely from surgery, and his back is as well (from the bone marrow biopsy). She was able to get his CBC results from Monday and brought them in to look at together while we waited for the ones for that day. His ANC was 1027 which made me feel pretty happy. (1500 is the bottom of the normal range).
She returned to share Wednesday’s results a while later; his ANC had dropped to 143. I was feeling REALLY let down. The nurse was as well and she said that this COULD mean that he has a form of Cyclical Neutropenia. Again though she did not want to even begin to diagnose him. She reminded me of the things to watch for in case he showed signs of infection over the holidays.
I left feeling happy that Liam is healthy and doing well but this appointment made me realize again how close he is at any moment to getting sick.
We had a wonderful Christmas Eve at my parent’s house and got to visit with some of my family and Paul’s Dad and sister Lisa. Unfortunately Paul got sick on Christmas day and stayed home all day with something like stomach flu. He felt a lot better the next day but said he is still feeling about 85%. I took William to my parent’s house again for Christmas day, but we did have a nice morning with Daddy opening William’s first Christmas presents from Santa!
I’ll start off with any info we have received in the last week…
Monday I took William in to get his finger pricked to begin the 3x a week for 6 weeks. We were ordered by our Hematologist to keep track of the levels we get from each CBC (Complete Blood Count) but when I got to our Dr. office lab they said they can’t share the results and that I could set up an online profile. I set it up but it is still not showing lab results. (Meaning I couldn’t find out what Will’s ANC Absolute Neutrophil Count was for Monday).
On Wednesday Morning he and I went to the Hem/Onc clinic for a scheduled check in visit. They did a lab draw for his second CBC of the week and then we met with a Nurse Practitioner because our Hematologist was on vacation. After a physical exam she thought that he looked really good. No cough, or cold symptoms, his incision has healed nicely from surgery, and his back is as well (from the bone marrow biopsy). She was able to get his CBC results from Monday and brought them in to look at together while we waited for the ones for that day. His ANC was 1027 which made me feel pretty happy. (1500 is the bottom of the normal range).
She returned to share Wednesday’s results a while later; his ANC had dropped to 143. I was feeling REALLY let down. The nurse was as well and she said that this COULD mean that he has a form of Cyclical Neutropenia. Again though she did not want to even begin to diagnose him. She reminded me of the things to watch for in case he showed signs of infection over the holidays.
I left feeling happy that Liam is healthy and doing well but this appointment made me realize again how close he is at any moment to getting sick.
We had a wonderful Christmas Eve at my parent’s house and got to visit with some of my family and Paul’s Dad and sister Lisa. Unfortunately Paul got sick on Christmas day and stayed home all day with something like stomach flu. He felt a lot better the next day but said he is still feeling about 85%. I took William to my parent’s house again for Christmas day, but we did have a nice morning with Daddy opening William’s first Christmas presents from Santa!
Check In 12/18/2009
12/18/2009 Friday
Today we went to the St. Paul Children’s “Hem/Onc” Clinic (Hematology/Oncology). We met with Will’s hematologist to check on his levels, his health progress since the hospital, and to hopefully find out a few test results.
Dr. Schultz thought he looked great. She even had to have us point out where the incision was on his bottom because it looks so good she didn’t notice it at first glance. Today William’s ANC (Absolute Neutrophil Count) was around 600. That’s quite a drop since Wednesday (1100) but Dr. Schultz had not seen his Wednesday count. When we told her about it she was pretty happy.
We found out again that an outlying test confirmed that there is no cancer anywhere on our radar! Always great to hear. We then found out that in one test, run by the U of M that they found an antibody in William’s blood that is killing off his neutrophils. The hematologist explained that this was an interesting thing. She said that this test CAN make mistakes, however generally the mistake will often say that a person does not have the antibody present when their body does really have it. She said finding out that your body is producing this antibody that kills his neutrophils COULD mean that this condition COULD be temporary, or a form of “Chronic Benign Neutropenia.” This can’t be fully confirmed until time passes, more blood tests are done to check his levels each week to look for patterns. Also we are waiting on some genetic testing that could take up to 6 weeks to process.
Here’s what I found out about “Chronic Benign Neutropenia” from an online brochure from Texas Children’s Cancer and Hematology Service:
“Chronic Benign Neutropenia is the most common type of neutropenia in childhood. Chronic is defined here as lasting more than 8 weeks. [It] appears as early as 6 to 12 months of age with frequent ear infections, sore throat, diarrhea, and other minor infections. (Now Liam has not had any of these conditions that we know about, other than the severe infection he ended up in the hospital for…but this is still a possibility, read on to see why). Neutropenia may be found only by chance, it continues for weeks or months with more than half the children having neutropenia for 18 to 20 months. The rest of the blood count is normal. The child usually appears healthy. The cause of this condition is not well known. It has been found that most children with this condition have autoimmune neutropenia. With this condition their bodies produce an antibody that attaches to the neutrophil and cause it to be destroyed. Forty to eighty percent of patients who have Chronic Benign Neutropenia have anti-neutrophil antibodies. The reason why these antibodies form is not known…”
At this time we do not know if Liam has Chronic Benign Neutropenia or if it is one of MANY other possibilities. This scenario would be our first choice though…
Dr. Schultz also mentioned that in her mind she still wonders a bit about the illness Liam had in October. (He was treated for H1N1 but we’ll never know for sure if he had it). She does not want to rule it out as a culprit at this time as we still know so little about the affects it has on people. I asked her what she thought we should do because Liam is due to get his 2nd round of the H1N1 vaccine. She said that she is supposed to tell us that he has to get it, but that if she were me, she might hold off on that for now. We totally agreed because if it has had anything to do with this mess we’ve been through we don’t want to risk putting any form of the virus in his system (even through a vaccine).
Here’s the plan we have for now:
Liam is going to have to get a finger stick 3x each week in order for them to do a CBC (Complete Blood Count). From that they will continue to track his ANC (Absolute Neutrophil Count) levels. This will help to benchmark what Liam’s neutrophils look like over a 6 week time. During this time if he does not rebound to a healthy neutrophil level they may put him on the medication called GCSF (Granulocyte Stimulation Factor) with a dose daily. He would get this subcutaneously (which means a shot in your fatty parts like Insulin, or though a tiny catheter that they poke into his arm and leave there. The second option would lower the amount of pokes to just one a week as the catheter is inserted).
There is a study program he could be part of that would pay for this drug (as it apparently can be very expensive especially if insurance won’t cover it)! In order to be in that program they need him to do the CBC 3X a week for 6 weeks. During that time we should learn a lot about Liam’s neutrophils, whether they go up and down in a cyclical manner, or if he stays low all of the time, etc. By the end of those weeks the genetic testing may have more answers for us as well.
We also have clear instructions for if he has a health issue (Thank God!). If he gets a fever of 101 or higher we must call the Hem/Onc clinic and have him seen. If they are closed we take him to the ER. Any signs of infection have to be taken very seriously. In the mean time, we just love and care for our happy little guy! (Oh and get him poked 3x a week ☹).
Dr. Schultz ended our appointment today by explaining something very clearly. After asking us how we are handling everything, she said, “I want you to remember something. This Neutropenia could be caused by one of many different possibilities. We have a plan for each one of them. When we figure out which scenario this falls under, we will know what we need to do next.” It feels incredible to know that we have a team searching to the ends of the earth to find a reason, but most importantly a team that stands ready to help us attack the issue no matter which it is.
I realize there are SO many details here and I hope some of this makes sense…there is so much more to it than I can even begin to type, but maybe this helps everyone to see what we are learning and how much there is to consider.
It’s been a FULL week going back to work and daycare, dealing with separation anxiety, visiting doctors, trying to navigate our normal tasks, and considering what we will have ready for Christmas. People from every aspect of our lives have sent word in some way that they are praying for us and thinking about us. THANK YOU! We are so incredibly spoiled to know and love so many people.
~Katie, Paul, and Willy-Poo
(P.S. Are you counting all the nicknames we have for our son?) ;)
Today we went to the St. Paul Children’s “Hem/Onc” Clinic (Hematology/Oncology). We met with Will’s hematologist to check on his levels, his health progress since the hospital, and to hopefully find out a few test results.
Dr. Schultz thought he looked great. She even had to have us point out where the incision was on his bottom because it looks so good she didn’t notice it at first glance. Today William’s ANC (Absolute Neutrophil Count) was around 600. That’s quite a drop since Wednesday (1100) but Dr. Schultz had not seen his Wednesday count. When we told her about it she was pretty happy.
We found out again that an outlying test confirmed that there is no cancer anywhere on our radar! Always great to hear. We then found out that in one test, run by the U of M that they found an antibody in William’s blood that is killing off his neutrophils. The hematologist explained that this was an interesting thing. She said that this test CAN make mistakes, however generally the mistake will often say that a person does not have the antibody present when their body does really have it. She said finding out that your body is producing this antibody that kills his neutrophils COULD mean that this condition COULD be temporary, or a form of “Chronic Benign Neutropenia.” This can’t be fully confirmed until time passes, more blood tests are done to check his levels each week to look for patterns. Also we are waiting on some genetic testing that could take up to 6 weeks to process.
Here’s what I found out about “Chronic Benign Neutropenia” from an online brochure from Texas Children’s Cancer and Hematology Service:
“Chronic Benign Neutropenia is the most common type of neutropenia in childhood. Chronic is defined here as lasting more than 8 weeks. [It] appears as early as 6 to 12 months of age with frequent ear infections, sore throat, diarrhea, and other minor infections. (Now Liam has not had any of these conditions that we know about, other than the severe infection he ended up in the hospital for…but this is still a possibility, read on to see why). Neutropenia may be found only by chance, it continues for weeks or months with more than half the children having neutropenia for 18 to 20 months. The rest of the blood count is normal. The child usually appears healthy. The cause of this condition is not well known. It has been found that most children with this condition have autoimmune neutropenia. With this condition their bodies produce an antibody that attaches to the neutrophil and cause it to be destroyed. Forty to eighty percent of patients who have Chronic Benign Neutropenia have anti-neutrophil antibodies. The reason why these antibodies form is not known…”
At this time we do not know if Liam has Chronic Benign Neutropenia or if it is one of MANY other possibilities. This scenario would be our first choice though…
Dr. Schultz also mentioned that in her mind she still wonders a bit about the illness Liam had in October. (He was treated for H1N1 but we’ll never know for sure if he had it). She does not want to rule it out as a culprit at this time as we still know so little about the affects it has on people. I asked her what she thought we should do because Liam is due to get his 2nd round of the H1N1 vaccine. She said that she is supposed to tell us that he has to get it, but that if she were me, she might hold off on that for now. We totally agreed because if it has had anything to do with this mess we’ve been through we don’t want to risk putting any form of the virus in his system (even through a vaccine).
Here’s the plan we have for now:
Liam is going to have to get a finger stick 3x each week in order for them to do a CBC (Complete Blood Count). From that they will continue to track his ANC (Absolute Neutrophil Count) levels. This will help to benchmark what Liam’s neutrophils look like over a 6 week time. During this time if he does not rebound to a healthy neutrophil level they may put him on the medication called GCSF (Granulocyte Stimulation Factor) with a dose daily. He would get this subcutaneously (which means a shot in your fatty parts like Insulin, or though a tiny catheter that they poke into his arm and leave there. The second option would lower the amount of pokes to just one a week as the catheter is inserted).
There is a study program he could be part of that would pay for this drug (as it apparently can be very expensive especially if insurance won’t cover it)! In order to be in that program they need him to do the CBC 3X a week for 6 weeks. During that time we should learn a lot about Liam’s neutrophils, whether they go up and down in a cyclical manner, or if he stays low all of the time, etc. By the end of those weeks the genetic testing may have more answers for us as well.
We also have clear instructions for if he has a health issue (Thank God!). If he gets a fever of 101 or higher we must call the Hem/Onc clinic and have him seen. If they are closed we take him to the ER. Any signs of infection have to be taken very seriously. In the mean time, we just love and care for our happy little guy! (Oh and get him poked 3x a week ☹).
Dr. Schultz ended our appointment today by explaining something very clearly. After asking us how we are handling everything, she said, “I want you to remember something. This Neutropenia could be caused by one of many different possibilities. We have a plan for each one of them. When we figure out which scenario this falls under, we will know what we need to do next.” It feels incredible to know that we have a team searching to the ends of the earth to find a reason, but most importantly a team that stands ready to help us attack the issue no matter which it is.
I realize there are SO many details here and I hope some of this makes sense…there is so much more to it than I can even begin to type, but maybe this helps everyone to see what we are learning and how much there is to consider.
It’s been a FULL week going back to work and daycare, dealing with separation anxiety, visiting doctors, trying to navigate our normal tasks, and considering what we will have ready for Christmas. People from every aspect of our lives have sent word in some way that they are praying for us and thinking about us. THANK YOU! We are so incredibly spoiled to know and love so many people.
~Katie, Paul, and Willy-Poo
(P.S. Are you counting all the nicknames we have for our son?) ;)
"These go to eleven" hundred that is... 12/16/2009
12/14/2009 Monday
I stayed home with Will today to take it easy and make sure things were on the right track. We slept in ☺ and had a good morning. While changing his diaper I did notice that his back (the area where they did the bone marrow biopsy draw) was getting a little pink. It’s a little creepy to think about, but they literally puncture the skin and bone so there is a true hole back there. We have been instructed to keep a close eye on it. (Also he has gotten poop on it at times so that can’t be good!)
I felt concerned so I paged one of our doctors and she decided that I should take him in to the Hematology office. They decided that his back looked good, and they would give him a prescription cream to put on it.
They also decided that they wanted to do a chest x-ray (as they are still monitoring his lungs…he has had a cough, wheezing, and rattly chest throughout all of this). They decided that his lungs are still ok, but want to continue monitoring.
They drew some blood today and I have to praise the lab ladies! I was moving into over protective parent mode when we walked in there. William has been poked SO many times and his veins are hard to get. He has bruises on the inside of each arm and ankle from all of the blood draws and attempts. Somehow I held my tongue and they got it on the first try. I was so happy I could have hugged them both!
They sent off some labs for some genetic testing today and got a CBC (Complete Blood Count) to check his levels. His Neutrophil level was 700 today. That is half of what it was yesterday, but they said that it is fine that it dropped since he did not get a dose of GCSF (Drug that raises Neutrphils). They thought they might want to start him back on the GCSF but decided to wait. If they give it to him and his levels get raised too high, then he can get sick from having too high of a white blood cell count.
We will take him in to see his Pediatrician on Wednesday and they will check all of these things again. We also made an appt. to meet with the Hematologist on Friday to learn more about some of the results.
The Doctor and Nurse that took care of us today were GREAT! I am really glad we went in and were reassured that things are ok. William is definitely NOT better yet, but we made it through our first day home together. I’m exhausted from wrestling a little boy who wants to move and play, so that tells me that he’s doing ok!
We hope to have all 3 of us back at daycare and work tomorrow. We’ll see what my 20 other kids have been up to…
Have a great evening!
~Katie, Paul and William
I stayed home with Will today to take it easy and make sure things were on the right track. We slept in ☺ and had a good morning. While changing his diaper I did notice that his back (the area where they did the bone marrow biopsy draw) was getting a little pink. It’s a little creepy to think about, but they literally puncture the skin and bone so there is a true hole back there. We have been instructed to keep a close eye on it. (Also he has gotten poop on it at times so that can’t be good!)
I felt concerned so I paged one of our doctors and she decided that I should take him in to the Hematology office. They decided that his back looked good, and they would give him a prescription cream to put on it.
They also decided that they wanted to do a chest x-ray (as they are still monitoring his lungs…he has had a cough, wheezing, and rattly chest throughout all of this). They decided that his lungs are still ok, but want to continue monitoring.
They drew some blood today and I have to praise the lab ladies! I was moving into over protective parent mode when we walked in there. William has been poked SO many times and his veins are hard to get. He has bruises on the inside of each arm and ankle from all of the blood draws and attempts. Somehow I held my tongue and they got it on the first try. I was so happy I could have hugged them both!
They sent off some labs for some genetic testing today and got a CBC (Complete Blood Count) to check his levels. His Neutrophil level was 700 today. That is half of what it was yesterday, but they said that it is fine that it dropped since he did not get a dose of GCSF (Drug that raises Neutrphils). They thought they might want to start him back on the GCSF but decided to wait. If they give it to him and his levels get raised too high, then he can get sick from having too high of a white blood cell count.
We will take him in to see his Pediatrician on Wednesday and they will check all of these things again. We also made an appt. to meet with the Hematologist on Friday to learn more about some of the results.
The Doctor and Nurse that took care of us today were GREAT! I am really glad we went in and were reassured that things are ok. William is definitely NOT better yet, but we made it through our first day home together. I’m exhausted from wrestling a little boy who wants to move and play, so that tells me that he’s doing ok!
We hope to have all 3 of us back at daycare and work tomorrow. We’ll see what my 20 other kids have been up to…
Have a great evening!
~Katie, Paul and William
Monday's Action 12/14/2009
12/14/2009 Monday
I stayed home with Will today to take it easy and make sure things were on the right track. We slept in ☺ and had a good morning. While changing his diaper I did notice that his back (the area where they did the bone marrow biopsy draw) was getting a little pink. It’s a little creepy to think about, but they literally puncture the skin and bone so there is a true hole back there. We have been instructed to keep a close eye on it. (Also he has gotten poop on it at times so that can’t be good!)
I felt concerned so I paged one of our doctors and she decided that I should take him in to the Hematology office. They decided that his back looked good, and they would give him a prescription cream to put on it.
They also decided that they wanted to do a chest x-ray (as they are still monitoring his lungs…he has had a cough, wheezing, and rattly chest throughout all of this). They decided that his lungs are still ok, but want to continue monitoring.
They drew some blood today and I have to praise the lab ladies! I was moving into over protective parent mode when we walked in there. William has been poked SO many times and his veins are hard to get. He has bruises on the inside of each arm and ankle from all of the blood draws and attempts. Somehow I held my tongue and they got it on the first try. I was so happy I could have hugged them both!
They sent off some labs for some genetic testing today and got a CBC (Complete Blood Count) to check his levels. His Neutrophil level was 700 today. That is half of what it was yesterday, but they said that it is fine that it dropped since he did not get a dose of GCSF (Drug that raises Neutrphils). They thought they might want to start him back on the GCSF but decided to wait. If they give it to him and his levels get raised too high, then he can get sick from having too high of a white blood cell count.
We will take him in to see his Pediatrician on Wednesday and they will check all of these things again. We also made an appt. to meet with the Hematologist on Friday to learn more about some of the results.
The Doctor and Nurse that took care of us today were GREAT! I am really glad we went in and were reassured that things are ok. William is definitely NOT better yet, but we made it through our first day home together. I’m exhausted from wrestling a little boy who wants to move and play, so that tells me that he’s doing ok!
We hope to have all 3 of us back at daycare and work tomorrow. We’ll see what my 20 other kids have been up to…
Have a great evening!
~Katie, Paul and William
I stayed home with Will today to take it easy and make sure things were on the right track. We slept in ☺ and had a good morning. While changing his diaper I did notice that his back (the area where they did the bone marrow biopsy draw) was getting a little pink. It’s a little creepy to think about, but they literally puncture the skin and bone so there is a true hole back there. We have been instructed to keep a close eye on it. (Also he has gotten poop on it at times so that can’t be good!)
I felt concerned so I paged one of our doctors and she decided that I should take him in to the Hematology office. They decided that his back looked good, and they would give him a prescription cream to put on it.
They also decided that they wanted to do a chest x-ray (as they are still monitoring his lungs…he has had a cough, wheezing, and rattly chest throughout all of this). They decided that his lungs are still ok, but want to continue monitoring.
They drew some blood today and I have to praise the lab ladies! I was moving into over protective parent mode when we walked in there. William has been poked SO many times and his veins are hard to get. He has bruises on the inside of each arm and ankle from all of the blood draws and attempts. Somehow I held my tongue and they got it on the first try. I was so happy I could have hugged them both!
They sent off some labs for some genetic testing today and got a CBC (Complete Blood Count) to check his levels. His Neutrophil level was 700 today. That is half of what it was yesterday, but they said that it is fine that it dropped since he did not get a dose of GCSF (Drug that raises Neutrphils). They thought they might want to start him back on the GCSF but decided to wait. If they give it to him and his levels get raised too high, then he can get sick from having too high of a white blood cell count.
We will take him in to see his Pediatrician on Wednesday and they will check all of these things again. We also made an appt. to meet with the Hematologist on Friday to learn more about some of the results.
The Doctor and Nurse that took care of us today were GREAT! I am really glad we went in and were reassured that things are ok. William is definitely NOT better yet, but we made it through our first day home together. I’m exhausted from wrestling a little boy who wants to move and play, so that tells me that he’s doing ok!
We hope to have all 3 of us back at daycare and work tomorrow. We’ll see what my 20 other kids have been up to…
Have a great evening!
~Katie, Paul and William
Home 12/13/2009
12/13/2009 Sunday (Will’s 10 month Birthday)
We slept in today and they came around 8:00 to prick Will’s finger for his CBC (Complete Blood Count) test. After that we had a fairly mellow morning. Will woke up happy and spent some of the morning playing in his crib. Various doctors visited us with small hints that we may go home today or tomorrow. We tried not to get our hopes up.
We got incredibly wonderful news when the CBC results came back today! His Neutrophil levels were going back up thanks to the GCSF (Drug that helps to raise them).
William’s Neutrphil levels were somewhere around 170 yesterday. Anything below 500 means SEVERE Neutropenia and is very dangerous. The lowest level he had this week was 78. To continue painting the picture, the bottom of the “Normal” range is 1500. Today, Will’s Neutrophils were back up to 1400!!! Woo hoo!
They also got some lab tests back that showed specifically which bacteria were causing his infections. That way we could take him off of the Vancomycin (Broad spectrum antibiotic) and get him on one that could specifically fight what he has.
We got to give Will a bath today and hid Godfather Cory came to visit. He brought him a black lab puppy stuffed animal, which he had a blast cuddling and sliming all over with drool.
After seeing such great things today they decided to let us go home this afternoon. We were SO happy!
This week we will bring William to his regular pediatrician for a check in appt. We will also start a routine of 2 finger sticks in the lab each week to run CBC’s. We will have to do this for a month so they can watch to see if William has “Cyclical Neutropenia.” That would mean that his Neutrophil levels would sometimes be normal, and sometimes they would drop as he would cycle through a period of time.
We will also go to an appointment at the Hematologists office to discuss many of the test results as they come in. William will have his second finger prick of the week there. Obviously we are hoping for a result that tells us that his problem is conditional and could be something that he will outgrow, but at this point there are still to many options to try to hang your hat on one or two. We are definitely not out of the woods yet so we need to be prepared for anything.
Leaving the hospital was very exciting but was also bittersweet for many reasons. We feel like we got wonderful care for our son from a team of doctors and nurses, all giving their best for him. We were reassured at the times we felt like everything was out of our hands, and everything was explained step by step and repeated if necessary. I think I have never heard “Do you have any questions?” and “Is there anything we can do for you or bring you?” more than in the last 5 days! Watching William improve over time despite all the pokes, prods, and procedures was definitely reassuring too.
Today we spent a little time walking the halls with Will. He needed a change of space and he dazzled everyone at the nurses stations with his happy disposition and sweet smile. He certainly showed everyone that he was feeling better today. During that walk though we saw lots of the other kids on the floor. Many have cancer or need surgeries. A few were even tiny babies all swaddled up and propped up on the big hospital beds. Nurses sometimes walk around carrying tiny babies to love them and snuggle them when their families can’t stay. Also in the last hour or so of our stay, the child 2 doors down was having some sort of emergency which kept our favorite nurse from really being able to say goodbye to us.
All of these things made us even MORE thankful for the outcome today. We are so blessed and SO thankful for the thoughts, prayers, well wishes, food, time, gifts, and love that we have received so far. Most of all though we are thankful for William and what a tough guy he is. We truly have a lucky charm and we’ve known that since Friday the 13th 10 months ago when he entered our world in suite 7!
Love,
Katie, Paul, and our special boy William
We slept in today and they came around 8:00 to prick Will’s finger for his CBC (Complete Blood Count) test. After that we had a fairly mellow morning. Will woke up happy and spent some of the morning playing in his crib. Various doctors visited us with small hints that we may go home today or tomorrow. We tried not to get our hopes up.
We got incredibly wonderful news when the CBC results came back today! His Neutrophil levels were going back up thanks to the GCSF (Drug that helps to raise them).
William’s Neutrphil levels were somewhere around 170 yesterday. Anything below 500 means SEVERE Neutropenia and is very dangerous. The lowest level he had this week was 78. To continue painting the picture, the bottom of the “Normal” range is 1500. Today, Will’s Neutrophils were back up to 1400!!! Woo hoo!
They also got some lab tests back that showed specifically which bacteria were causing his infections. That way we could take him off of the Vancomycin (Broad spectrum antibiotic) and get him on one that could specifically fight what he has.
We got to give Will a bath today and hid Godfather Cory came to visit. He brought him a black lab puppy stuffed animal, which he had a blast cuddling and sliming all over with drool.
After seeing such great things today they decided to let us go home this afternoon. We were SO happy!
This week we will bring William to his regular pediatrician for a check in appt. We will also start a routine of 2 finger sticks in the lab each week to run CBC’s. We will have to do this for a month so they can watch to see if William has “Cyclical Neutropenia.” That would mean that his Neutrophil levels would sometimes be normal, and sometimes they would drop as he would cycle through a period of time.
We will also go to an appointment at the Hematologists office to discuss many of the test results as they come in. William will have his second finger prick of the week there. Obviously we are hoping for a result that tells us that his problem is conditional and could be something that he will outgrow, but at this point there are still to many options to try to hang your hat on one or two. We are definitely not out of the woods yet so we need to be prepared for anything.
Leaving the hospital was very exciting but was also bittersweet for many reasons. We feel like we got wonderful care for our son from a team of doctors and nurses, all giving their best for him. We were reassured at the times we felt like everything was out of our hands, and everything was explained step by step and repeated if necessary. I think I have never heard “Do you have any questions?” and “Is there anything we can do for you or bring you?” more than in the last 5 days! Watching William improve over time despite all the pokes, prods, and procedures was definitely reassuring too.
Today we spent a little time walking the halls with Will. He needed a change of space and he dazzled everyone at the nurses stations with his happy disposition and sweet smile. He certainly showed everyone that he was feeling better today. During that walk though we saw lots of the other kids on the floor. Many have cancer or need surgeries. A few were even tiny babies all swaddled up and propped up on the big hospital beds. Nurses sometimes walk around carrying tiny babies to love them and snuggle them when their families can’t stay. Also in the last hour or so of our stay, the child 2 doors down was having some sort of emergency which kept our favorite nurse from really being able to say goodbye to us.
All of these things made us even MORE thankful for the outcome today. We are so blessed and SO thankful for the thoughts, prayers, well wishes, food, time, gifts, and love that we have received so far. Most of all though we are thankful for William and what a tough guy he is. We truly have a lucky charm and we’ve known that since Friday the 13th 10 months ago when he entered our world in suite 7!
Love,
Katie, Paul, and our special boy William
12/12/2009 Cancer FREE!
12/12/2009 Saturday
So far has been a good day for us. William woke up in better spirits and spent time off and on playing today. He smiled a few times for the Hematologist, which is the first time he has really smiled for anyone in the past day or so. He did have a finger poke around 12:00 so they could get blood for today’s “CBC” (Complete Blood Count). They will look at it later to see what his Neutrophil levels are as well as the other cells in his blood. That will tell us if the counts are normal and if the Neutrophil levels have gone up at all.
They don’t expect it to go up very much even though he has taken 1 dose of the GCSF but they still want to look.
We were told by the Hematologist that we could officially cross Leukemia off of our list of possibilities, so Cancer is OFF THE BOARD!!! Whew!
We don’t expect a lot more action today which is great for once. They periodically look at the incision on his bottom and keep saying it looks great. They also are vigilantly watching his respiratory stuff to see if he has developed pneumonia, but so far so good!
Paul and I are relaxing watching Disney’s “Up” and just finished Chipotle for lunch. Our day nurse is great, (We had her all day yesterday too) and we’re really having a nice time working with her. Today she invited us to order lunch with the nurses so she took our order and later delivered our burritos. She is SO nice.
We’ll have to see if we hear any more today. Hopefully they will figure out which oral antibiotics they want to try for his infection. Right now he is still taking Vancomycin which the Hematologist referred to as the “big guns” yesterday. It seems to be helping him, however it can only be administered as an I.V. drug. They need to get more specific drugs for his infections so he can start an oral and eventually go home. (Maybe tomorrow?????????)
Thanks again for all of your thoughts, prayers, and sweet messages. I can tell that it is working!
Much love to all of you!
~K,P and Big Willy Styles!
So far has been a good day for us. William woke up in better spirits and spent time off and on playing today. He smiled a few times for the Hematologist, which is the first time he has really smiled for anyone in the past day or so. He did have a finger poke around 12:00 so they could get blood for today’s “CBC” (Complete Blood Count). They will look at it later to see what his Neutrophil levels are as well as the other cells in his blood. That will tell us if the counts are normal and if the Neutrophil levels have gone up at all.
They don’t expect it to go up very much even though he has taken 1 dose of the GCSF but they still want to look.
We were told by the Hematologist that we could officially cross Leukemia off of our list of possibilities, so Cancer is OFF THE BOARD!!! Whew!
We don’t expect a lot more action today which is great for once. They periodically look at the incision on his bottom and keep saying it looks great. They also are vigilantly watching his respiratory stuff to see if he has developed pneumonia, but so far so good!
Paul and I are relaxing watching Disney’s “Up” and just finished Chipotle for lunch. Our day nurse is great, (We had her all day yesterday too) and we’re really having a nice time working with her. Today she invited us to order lunch with the nurses so she took our order and later delivered our burritos. She is SO nice.
We’ll have to see if we hear any more today. Hopefully they will figure out which oral antibiotics they want to try for his infection. Right now he is still taking Vancomycin which the Hematologist referred to as the “big guns” yesterday. It seems to be helping him, however it can only be administered as an I.V. drug. They need to get more specific drugs for his infections so he can start an oral and eventually go home. (Maybe tomorrow?????????)
Thanks again for all of your thoughts, prayers, and sweet messages. I can tell that it is working!
Much love to all of you!
~K,P and Big Willy Styles!
12/11/2009
12/11/2009 Friday
Today has been a down and then up day for us. This morning was rough. We started off with them trying a blood draw attempt which failed and upset him. Then a surgeon came in to check on William.
I thought he was coming to check his hip bones for the Bone Marrow Biopsy that was scheduled for 2:00 today. It turned out that he was here to look at Will’s incision from yesterday’s surgery. He really liked what he saw and decided at that moment to remove the wound packing/dressing. I wasn’t prepared and William freaked out. We calmed him down but they came back soon to try the blood draw again. We were feeling a lot of stress about the events of the day.
We talked for a long time with an infection specialist who is highly regarded and later with our Hematologist. They spent a lot of time carefully explaining the upcoming procedure and the possibilities we may face. They listened to every question we had and were SO thorough with their thoughts and plans. By 2:00 we were feeling ready head to the Bone Marrow Biopsy. William developed a fever right about then and has had a bit of a worsening cough today but they said he could still go to the procedure. They had to put him under again like yesterday and I was allowed to carry him into the operating room and stay with him until he went to sleep. (That took about 2 seconds).
The Bone Marrow Biopsy is where they stick a long needle into one of his hip bones and basically take a “core sample of the bone and marrow” then they draw out a few teaspoons of marrow. It would be extremely painful if not for anesthesia. The person who did the procedure said everything went great. They were able to do some blood draws for other testing during that time as well to minimize the pain Will would endure.
Then they took us to Radiology to x-ray his chest to make sure it was clear from pneumonia. He did well with all of these things and was returned to us as a sleepy but happy and cuddly boy.
This afternoon he nursed well and took some long naps. We felt more relaxed already knowing that we made it through the tough stuff for the day.
The Hematologist came to see us a few hours later with some very preliminary results of the Bone Marrow tests. (We will not know more though until next week). She was happy to say that she had not real exciting news other than that they could definitely rule out Lymphoma, and Neuroblastoma. They are also probably 99% sure that it is not Leukemia either, but there is one other test they HAVE to send off before they can officially call it clear. (FYI they have been saying all along that they did not believe it was any one of these cancer types, but it felt great to physically cross them off of the list). It’s amazing how you can still worry about these things even when they say it is probably not the cause of his Neutropenia (Low Neutrophil count).
The Hematologist explained that what they found today is that in William’s bone marrow was that it IS making white blood cells. It is making the specific cells that eventually develop into Neutrophils (The white blood cells that help eat infections) and they currently exist in his marrow. The issue is that these cells aren’t “Growing up” as I would say and making their way into his blood stream where they can actually do their job.
There could be a few different reasons for this…
-The first is that he could have a condition where they never “grow up” and his Neutrophil count is always low.
-It could be that sometimes they “grow up” and sometimes they don’t which would mean that his Neutrophil count is cyclical going from normal to then dropping too low etc. on a cycling basis.
- Another option is that when William got a virus (possibly the suspect H1N1 he had at the end of October), it could have wiped out his bone marrow’s capability to produce proper white blood cells. (This happens with viruses). It could be that a virus like H1N1 could be strong enough to wipe out his system this long. We could now be trying to take a look at his marrow restarting its job of making these cells and that he is only half-way back to normal. Meaning that his marrow has not gotten to the point of “grown up” Neutrophils being released into his blood stream. This scenario is not as clear and possibly not as likely but they say that with things like H1N1 they do not know every single capability it has. We may never know if H1N1 was the true culprit now because there is no real way to go back and see if he did indeed have H1N1 in Oct.
-The last scenario I know of right now is that as the cells that “grow up” into Neutrophils, pass into his blood stream William’s body could be producing an antibody that is killing them off. Our bodies produce antibodies when we get sick that fight germs. Very rarely, but sometimes our bodies will see the bad germs and lump some of our good cells like Neutrophils together and produce an antibody which kills them both. That would then make his Neutrophil count low.
All of these scenarios result in a low Neutrophil count which again is dangerous because it prevents William from fighting infections on his own.
We will now have to wait at least a week or many more to find out if William has a congenital condition (caused by genetics) or an acquired one. There are many names for different variations of Neutropenia.
Tonight we started a drug called GCSF (Granulocyte stimulation factor) which should help William to begin raising his Neutrophil levels (and help to fight the infection he has). We couldn’t have started this before the marrow biopsy as it would have skewed the results. AND they did not want to do a bone biopsy unless it was necessary, but as his levels were still so low last night they made the call to do the biopsy.
The hope for this weekend is to keep him here in the hospital to do two things: get him on the best antibiotics to fight the infection and get him closer to being well, and to raise his Neutrophil levels so that he is in the normal range so he can fight infections and protect himself from them too.
We will learn later if he will need the GCSF drug to regulate his Neutrophils all the time or not. (That could mean us giving his a shot every day at home).
Tonight we had a few visitors (we actually got in trouble for exceeding the limit). We are only allowed 4 visitors a day and Paul and I count as 2 of the 4. It was nice to see some of the outside word though. William drank milk and ate solids ravenously this evening. He played a bit and cuddled too. He is very tired from a big day though. Paul and I are praying that we will soon see the constantly smiling little boy we know. It has been extremely tough being with a William we don’t know as well and we know it must be SO tough on him. We can’t wait to see the crazy man in his Johnny Jump Up again soon!
Thanks again for all of your concerns, wells wishes, prayers, and love.
XOXOXOXO
~Katie, Paul, and William Henry Moeller
Today has been a down and then up day for us. This morning was rough. We started off with them trying a blood draw attempt which failed and upset him. Then a surgeon came in to check on William.
I thought he was coming to check his hip bones for the Bone Marrow Biopsy that was scheduled for 2:00 today. It turned out that he was here to look at Will’s incision from yesterday’s surgery. He really liked what he saw and decided at that moment to remove the wound packing/dressing. I wasn’t prepared and William freaked out. We calmed him down but they came back soon to try the blood draw again. We were feeling a lot of stress about the events of the day.
We talked for a long time with an infection specialist who is highly regarded and later with our Hematologist. They spent a lot of time carefully explaining the upcoming procedure and the possibilities we may face. They listened to every question we had and were SO thorough with their thoughts and plans. By 2:00 we were feeling ready head to the Bone Marrow Biopsy. William developed a fever right about then and has had a bit of a worsening cough today but they said he could still go to the procedure. They had to put him under again like yesterday and I was allowed to carry him into the operating room and stay with him until he went to sleep. (That took about 2 seconds).
The Bone Marrow Biopsy is where they stick a long needle into one of his hip bones and basically take a “core sample of the bone and marrow” then they draw out a few teaspoons of marrow. It would be extremely painful if not for anesthesia. The person who did the procedure said everything went great. They were able to do some blood draws for other testing during that time as well to minimize the pain Will would endure.
Then they took us to Radiology to x-ray his chest to make sure it was clear from pneumonia. He did well with all of these things and was returned to us as a sleepy but happy and cuddly boy.
This afternoon he nursed well and took some long naps. We felt more relaxed already knowing that we made it through the tough stuff for the day.
The Hematologist came to see us a few hours later with some very preliminary results of the Bone Marrow tests. (We will not know more though until next week). She was happy to say that she had not real exciting news other than that they could definitely rule out Lymphoma, and Neuroblastoma. They are also probably 99% sure that it is not Leukemia either, but there is one other test they HAVE to send off before they can officially call it clear. (FYI they have been saying all along that they did not believe it was any one of these cancer types, but it felt great to physically cross them off of the list). It’s amazing how you can still worry about these things even when they say it is probably not the cause of his Neutropenia (Low Neutrophil count).
The Hematologist explained that what they found today is that in William’s bone marrow was that it IS making white blood cells. It is making the specific cells that eventually develop into Neutrophils (The white blood cells that help eat infections) and they currently exist in his marrow. The issue is that these cells aren’t “Growing up” as I would say and making their way into his blood stream where they can actually do their job.
There could be a few different reasons for this…
-The first is that he could have a condition where they never “grow up” and his Neutrophil count is always low.
-It could be that sometimes they “grow up” and sometimes they don’t which would mean that his Neutrophil count is cyclical going from normal to then dropping too low etc. on a cycling basis.
- Another option is that when William got a virus (possibly the suspect H1N1 he had at the end of October), it could have wiped out his bone marrow’s capability to produce proper white blood cells. (This happens with viruses). It could be that a virus like H1N1 could be strong enough to wipe out his system this long. We could now be trying to take a look at his marrow restarting its job of making these cells and that he is only half-way back to normal. Meaning that his marrow has not gotten to the point of “grown up” Neutrophils being released into his blood stream. This scenario is not as clear and possibly not as likely but they say that with things like H1N1 they do not know every single capability it has. We may never know if H1N1 was the true culprit now because there is no real way to go back and see if he did indeed have H1N1 in Oct.
-The last scenario I know of right now is that as the cells that “grow up” into Neutrophils, pass into his blood stream William’s body could be producing an antibody that is killing them off. Our bodies produce antibodies when we get sick that fight germs. Very rarely, but sometimes our bodies will see the bad germs and lump some of our good cells like Neutrophils together and produce an antibody which kills them both. That would then make his Neutrophil count low.
All of these scenarios result in a low Neutrophil count which again is dangerous because it prevents William from fighting infections on his own.
We will now have to wait at least a week or many more to find out if William has a congenital condition (caused by genetics) or an acquired one. There are many names for different variations of Neutropenia.
Tonight we started a drug called GCSF (Granulocyte stimulation factor) which should help William to begin raising his Neutrophil levels (and help to fight the infection he has). We couldn’t have started this before the marrow biopsy as it would have skewed the results. AND they did not want to do a bone biopsy unless it was necessary, but as his levels were still so low last night they made the call to do the biopsy.
The hope for this weekend is to keep him here in the hospital to do two things: get him on the best antibiotics to fight the infection and get him closer to being well, and to raise his Neutrophil levels so that he is in the normal range so he can fight infections and protect himself from them too.
We will learn later if he will need the GCSF drug to regulate his Neutrophils all the time or not. (That could mean us giving his a shot every day at home).
Tonight we had a few visitors (we actually got in trouble for exceeding the limit). We are only allowed 4 visitors a day and Paul and I count as 2 of the 4. It was nice to see some of the outside word though. William drank milk and ate solids ravenously this evening. He played a bit and cuddled too. He is very tired from a big day though. Paul and I are praying that we will soon see the constantly smiling little boy we know. It has been extremely tough being with a William we don’t know as well and we know it must be SO tough on him. We can’t wait to see the crazy man in his Johnny Jump Up again soon!
Thanks again for all of your concerns, wells wishes, prayers, and love.
XOXOXOXO
~Katie, Paul, and William Henry Moeller
Hospital 12/10/2009
12/10/2009 Thursday
Unfortunately William is sick and is at Children's Hospital in St. Paul. We had to bring him here last night.
Last Wednesday he had a fever with no other symptoms, we took him in and they decided he had a virus. (They tried blood draws and catheters but they couldn't get either to work). They sent us home until Friday. Then our Pediatrician
saw him Friday and didn't like his condition so they sent him to Children's ER. His white blood cell count had been low on Wednesday and it was not bouncing back yet.
The ER said he still had an unknown virus, but that his white count was still low. They sent us home to give him fluids and rest. On Saturday his fever broke, he got a rash and showed all signs or Roseola. He seemed like he was feeling better too.
Sunday he was fussy and seemed like something wasn't right. Monday morning Paul changed his diaper and fund that one of his butt cheeks was red and hard. I brought him in that day and they decided that he had a staph infection in his bottom. The Dr. was very concerned about his white count still and said to bring him back Wed to check if antibiotics were helping and if the white cells were normalizing.
Yesterday at William's appt. we had to report that he was not showing signs of improvement. The Dr. did not like what he saw at all, but he was prepared for that and had made several calls in preparation. He had everything set up for us to take him to St. Paul Children's.
William had surgery this morning on his bottom to drain the possible staph infection. The surgery went well, it was only about 15 mins with a 30 min recovery. He is on 2 I.V. antibiotics to help him fight the infection now.
Post surgery we met with a Hematologist to begin the process of finding out why his white count is so low. She explained a lot of different possibilities, but at this point they don’t feel that it is leukemia or lymphoma. (They may have to rule those out later though if necessary). They just did some blood draws to send off to labs. Unfortunately we will not get any results for at least a week maybe longer. He seems to have a condition where his neutrophils (white blood cells that fight infection and cause redness and puss when you get infected) are low. It could be one of many different conditions, either genetic or acquired. The biggest issue at this point is that if William gets an infection, his body can't work with the antibiotics to fight it off so right now it's only the meds fighting.
They explained that their focus and his reason for being in the hospital is to heal the infection and get him well. Then our next step is to find out why he is having the low Neutrophil levels and see how we can treat it.
William is in good spirits, has had enough pain meds to keep him happy, continuously tries to chew on his I.V. tubes, and is currently sleeping like a little angel.
Unfortunately William is sick and is at Children's Hospital in St. Paul. We had to bring him here last night.
Last Wednesday he had a fever with no other symptoms, we took him in and they decided he had a virus. (They tried blood draws and catheters but they couldn't get either to work). They sent us home until Friday. Then our Pediatrician
saw him Friday and didn't like his condition so they sent him to Children's ER. His white blood cell count had been low on Wednesday and it was not bouncing back yet.
The ER said he still had an unknown virus, but that his white count was still low. They sent us home to give him fluids and rest. On Saturday his fever broke, he got a rash and showed all signs or Roseola. He seemed like he was feeling better too.
Sunday he was fussy and seemed like something wasn't right. Monday morning Paul changed his diaper and fund that one of his butt cheeks was red and hard. I brought him in that day and they decided that he had a staph infection in his bottom. The Dr. was very concerned about his white count still and said to bring him back Wed to check if antibiotics were helping and if the white cells were normalizing.
Yesterday at William's appt. we had to report that he was not showing signs of improvement. The Dr. did not like what he saw at all, but he was prepared for that and had made several calls in preparation. He had everything set up for us to take him to St. Paul Children's.
William had surgery this morning on his bottom to drain the possible staph infection. The surgery went well, it was only about 15 mins with a 30 min recovery. He is on 2 I.V. antibiotics to help him fight the infection now.
Post surgery we met with a Hematologist to begin the process of finding out why his white count is so low. She explained a lot of different possibilities, but at this point they don’t feel that it is leukemia or lymphoma. (They may have to rule those out later though if necessary). They just did some blood draws to send off to labs. Unfortunately we will not get any results for at least a week maybe longer. He seems to have a condition where his neutrophils (white blood cells that fight infection and cause redness and puss when you get infected) are low. It could be one of many different conditions, either genetic or acquired. The biggest issue at this point is that if William gets an infection, his body can't work with the antibiotics to fight it off so right now it's only the meds fighting.
They explained that their focus and his reason for being in the hospital is to heal the infection and get him well. Then our next step is to find out why he is having the low Neutrophil levels and see how we can treat it.
William is in good spirits, has had enough pain meds to keep him happy, continuously tries to chew on his I.V. tubes, and is currently sleeping like a little angel.
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