1/25/2010 Monday
Hey everyone! It’s been a while since I have updated. In a way no news is good news. We have been mainly going about our daily lives, and heading to finer sticks 3X a week. I just spent some time charting the info I receive from his test results. It is my job to keep track of it all as a back up in case the faxes don’t go through from clinic to clinic. As of today William has gone through AT LEAST 26 finger sticks to track his blood counts! Wow does that hit home. He is a pretty amazing kid. We had a new lab tech today who asked me how he would handle the poke… before I could answer, another tech came in and said “Oh that sweet little boy handles everything very well!” Last Friday the tech said, “Oh I finally get the famous little guy who everyone talks about.” Is it good to be famous for being such a sweetie, even though you’re famous because you are a medical lab frequent flyer?
After stopping the GCSF drug on the 11th of January William’s ANC has dropped pretty significantly. With someone who has neutropenia like he does this is not a surprising result. His average ANC (Absolute Neutrophil Count) for the past week or so has been around 400. (1500 is the bottom of the normal range).
Will has been seemingly healthy and happy as always. He is STILL not crawling, but has learned to move a little by kicking his feet on the floor as he sits up. He spins in all directions this way and for the most part seems happy with his new “mobility.” He is starting to pull up on everything and I think that in his mind he can just lurch forward and magically get anywhere he wants. We have to watch as he pulls up so he won’t smack his head on things, or get stuck in his new favorite cart that my parents got him!
Last night and today he felt a little bit warm which send off all alarms in my head. My paranoia sets in at any trace of a fever. (Remember any fever of 101 degrees, we have to take him to the Hematology/Oncology clinic or the ER if the clinic is closed). They want us to be extremely vigilant about signs of infection. We’re hoping he’s teething but you never can tell. So far he has only made it to 99.7, which is good, but I’m keeping a close eye on him.
Today there was no school in my district so William and I had a play date with some teacher friends and their sweet baby boys! We got together every other week this past summer and we had a great time today as well. One of the boys was born the day after Will and the other is about 4 months older. I think they will continue to be good friends.
I called to check in with the Hematology clinic on Friday and talked with our Hematologist. She is hoping that the results of our genetic testing will be in sometime the first week of February. We are going to make an appointment to go in and have William checked and to talk about anything they have found out. She said that it will be great to have those results, but our biggest hope is that the tests don’t find anything. (That would mean that he would not have a genetic disorder that is causing the Neutropenia, or low neutrophils). That COULD mean that his condition is not permanent, but we won’t think about all that till it comes. Whatever we find out, we will decide our course of action from there.
The bummer thing is that I asked how many more weeks we need to take him to get his finger poked. Dr. Schultz was sad to say that we really need to see William’s norms without any GCSF in the mix. That could mean that we may have to continue pokes 3X a week until the end of February. She said that if the genetic testing shows something though, we could/would stop the pokes then. So it’s a one or the other sort of situation: 1. If he has a genetic disorder, we’ll stop poking (BOO genetic disorder, YAY no more finger sticks) 2. If there is no found genetic disorder we’ll have to continue pokes to watch for any cycling with his levels (YAY no genetic disorder, BOO more poking!)
In the mean time we are preparing ourselves for reality…our baby will be turning 1 on the 13th! Ahhhhhhhhhhhhh!
Hope you had a good start to your week.
Love,
The Moeller’s
Monday, January 25, 2010
Tuesday, January 12, 2010
WOWSERS!
1/12/2009 Tuesday
Quick update since last Saturday…We continued to give William his GCSF (Granulocyte Stimulation Factor, the medicine to raise his neutrophils) through the catheter in his arm until last night. The nurse from the Hem/Onc clinic said that his catheter had to come out Monday night (as it has to be replaced every 7 days). She said if his counts from yesterday looked good, we could remove it and possibly skip his does of GCSF today.
We pulled the catheter out last night, which turned out to be very easy. I was slowly pulling off the adhesive around it (it hurt him like a band-aid being pulled off) when I realized the catheter had already come out! We were so excited to let William take a normal bath again and he LIVED IT UP! Splashing, kicking, clapping, trying to drink the water, and anything else an 11 month old boy can manage. (Yes he is turning 11 months tomorrow sniff sniff!)
Today I was able to see the counts from yesterday's finger stick CBC (Complete Blood Count). SHOCKINGLY his ANC (Absolute Neutrophil Count) today was 28,000! I hope I calculated that right…but I did it 5X and compared it with the other counts to make sure. Can you believe it? A little over a week ago he was only at 150!
We’ll be checking in with the Hem/Onc clinic soon, as the Dr. wants to continue to keep close tabs on William, but at this point he seems very healthy! Hopefully we can keep him off of the GCSF now to continue the blood study to find his true baseline ANC. We will continue to wait for our genetic testing results as well. Maybe 2 more weeks???
William is getting more physical with his play. He loves wheels more than anything right now. He explores the different toys he has that make sounds and have lights, but he always ends up spending a lot of his day spinning wheels and trying to see how things work. We saw him try to pull up on his Radio Flyer pushcart a little today and he is moving his body from sitting to tummy. With a little help he got from tummy to sitting as well. He pivots on slippery floors on his tummy and acts like he wants to move all of the time! Now he’s got to crawl, crawl, crawl!
Here’s a BIG HOORAY for GCSF and our little boy for all he endures!
Thanks again everyone! XOXOXO
~Katie, Paul, and William
Quick update since last Saturday…We continued to give William his GCSF (Granulocyte Stimulation Factor, the medicine to raise his neutrophils) through the catheter in his arm until last night. The nurse from the Hem/Onc clinic said that his catheter had to come out Monday night (as it has to be replaced every 7 days). She said if his counts from yesterday looked good, we could remove it and possibly skip his does of GCSF today.
We pulled the catheter out last night, which turned out to be very easy. I was slowly pulling off the adhesive around it (it hurt him like a band-aid being pulled off) when I realized the catheter had already come out! We were so excited to let William take a normal bath again and he LIVED IT UP! Splashing, kicking, clapping, trying to drink the water, and anything else an 11 month old boy can manage. (Yes he is turning 11 months tomorrow sniff sniff!)
Today I was able to see the counts from yesterday's finger stick CBC (Complete Blood Count). SHOCKINGLY his ANC (Absolute Neutrophil Count) today was 28,000! I hope I calculated that right…but I did it 5X and compared it with the other counts to make sure. Can you believe it? A little over a week ago he was only at 150!
We’ll be checking in with the Hem/Onc clinic soon, as the Dr. wants to continue to keep close tabs on William, but at this point he seems very healthy! Hopefully we can keep him off of the GCSF now to continue the blood study to find his true baseline ANC. We will continue to wait for our genetic testing results as well. Maybe 2 more weeks???
William is getting more physical with his play. He loves wheels more than anything right now. He explores the different toys he has that make sounds and have lights, but he always ends up spending a lot of his day spinning wheels and trying to see how things work. We saw him try to pull up on his Radio Flyer pushcart a little today and he is moving his body from sitting to tummy. With a little help he got from tummy to sitting as well. He pivots on slippery floors on his tummy and acts like he wants to move all of the time! Now he’s got to crawl, crawl, crawl!
Here’s a BIG HOORAY for GCSF and our little boy for all he endures!
Thanks again everyone! XOXOXO
~Katie, Paul, and William
Saturday, January 9, 2010
Movin' on Uuuuup!
1/9/2009 Saturday
So we have been giving Will daily doses of GCSF through his Insuflon Catheter in his arm. On Tuesday I took Will to the Hem/Onc clinic where the nurse had me administer the GCSF into his Insuflon Catheter by myself for the first time. It was a little scary, but I didn’t have to poke him so that was good!
We had a home care nurse come out to our house on Wednesday to set us up and make sure that we were able to administer the medicine on our own. Of course there were a few snags first…
I called the nurse to set up a time for her visit and told her that we needed to take Will to get his CBC finger stick first. She was very nice and said that she was very flexible with her time for the evening. She said to call her when we arrived at home (so we could make sure the GCSF medicine had been delivered to our house).
We got home and OF COURSE there were no meds here! Paul started calling numbers and found that the order was prepared by some form of Walgreen’s Pharmaceuticals. They said that the package had been sent to FedEx and should have been delivered to us. Paul then called FedEx and started trying to track down the box. It turns out that the package was addressed with White Bear Lake’s zip code (similar to ours) and so the package went to White Bear, was then shipped back to St. Paul, and sat there for the rest of the day because all of the trucks had already gone out for the day. They basically said “Sorry but you won’t be getting your package today.” Paul made it clear that thanks to them we would be packing our bags for a trip to the ER so our son could get the drug they were supposed to deliver. Luckily the office was still open and so he drove to downtown St. Paul and picked it up himself and SAVED THE DAY!
The nurse was wonderful at checking on us, answering questions, and making sure we knew what we were doing as far as the GCSF goes. We had a nice visit with her and she was wonderful with Will. She brought him a froggy stuffed animal donated by a patient’s foundation for kids who are sick during the Holidays. She even pretended to try and climb in his Johnny Jump Up while we gave him his dose of meds to distract him. Will thought it was really funny!
So now for the good news!!!
On Wednesday we took Will for his CBC, but I didn’t get the results until Thursday. It turns out that the GCSF (Granulocyte Stimulation Factor…meds that raise Will’s Neutrophils…which are the white blood cells that are low in his system) is WORKING, especially now that he has been getting it in subcutaneous form (under the skin instead of through an I.V.)! His ANC (Absolute Neutrophil Count) was 3,606! Remember that 1,500 is the bottom of the normal range.
Today we calculated the results of his CBC that was taken yesterday. His ANC is now 8,606!!! The drugs are working and his body has Neutrophils right now so he is able to fight any remnants of the infection that would remain from last weekend’s drama.
I got a message from the Hem/Onc clinic saying that they would like us to continue the GCSF until Tuesday and then hopefully we can stop it for a while to get back to the blood study where we poke Will 3X a week to find a baseline of his typical neutrophil counts (ANC). They also told us that hopefully we will get the results of our genetic testing by the end of the next 3 weeks.
Will's abscess seems to have healed nicely. The swelling is down, the redness gone, and the would looks closed again. He still has has no fevers (HOORAY!), and he seems overall very healthy right now.
It is fun to type a blog entry that ends on a positive note. Especially when I don’t have to start any sentences with “At least…” or “On the bright side…” We will continue to think positively and believe that the end is in sight. Thank you for all the wonderful things you do for us and for others. It is amazing to see what great people are in our lives.
(Oh and I don’t want to jinx ourselves about Will’s sleeping patterns so I WON’T say that things have been going much better right now!)
All our love,
Mr. Mrs. and Mini Moeller
So we have been giving Will daily doses of GCSF through his Insuflon Catheter in his arm. On Tuesday I took Will to the Hem/Onc clinic where the nurse had me administer the GCSF into his Insuflon Catheter by myself for the first time. It was a little scary, but I didn’t have to poke him so that was good!
We had a home care nurse come out to our house on Wednesday to set us up and make sure that we were able to administer the medicine on our own. Of course there were a few snags first…
I called the nurse to set up a time for her visit and told her that we needed to take Will to get his CBC finger stick first. She was very nice and said that she was very flexible with her time for the evening. She said to call her when we arrived at home (so we could make sure the GCSF medicine had been delivered to our house).
We got home and OF COURSE there were no meds here! Paul started calling numbers and found that the order was prepared by some form of Walgreen’s Pharmaceuticals. They said that the package had been sent to FedEx and should have been delivered to us. Paul then called FedEx and started trying to track down the box. It turns out that the package was addressed with White Bear Lake’s zip code (similar to ours) and so the package went to White Bear, was then shipped back to St. Paul, and sat there for the rest of the day because all of the trucks had already gone out for the day. They basically said “Sorry but you won’t be getting your package today.” Paul made it clear that thanks to them we would be packing our bags for a trip to the ER so our son could get the drug they were supposed to deliver. Luckily the office was still open and so he drove to downtown St. Paul and picked it up himself and SAVED THE DAY!
The nurse was wonderful at checking on us, answering questions, and making sure we knew what we were doing as far as the GCSF goes. We had a nice visit with her and she was wonderful with Will. She brought him a froggy stuffed animal donated by a patient’s foundation for kids who are sick during the Holidays. She even pretended to try and climb in his Johnny Jump Up while we gave him his dose of meds to distract him. Will thought it was really funny!
So now for the good news!!!
On Wednesday we took Will for his CBC, but I didn’t get the results until Thursday. It turns out that the GCSF (Granulocyte Stimulation Factor…meds that raise Will’s Neutrophils…which are the white blood cells that are low in his system) is WORKING, especially now that he has been getting it in subcutaneous form (under the skin instead of through an I.V.)! His ANC (Absolute Neutrophil Count) was 3,606! Remember that 1,500 is the bottom of the normal range.
Today we calculated the results of his CBC that was taken yesterday. His ANC is now 8,606!!! The drugs are working and his body has Neutrophils right now so he is able to fight any remnants of the infection that would remain from last weekend’s drama.
I got a message from the Hem/Onc clinic saying that they would like us to continue the GCSF until Tuesday and then hopefully we can stop it for a while to get back to the blood study where we poke Will 3X a week to find a baseline of his typical neutrophil counts (ANC). They also told us that hopefully we will get the results of our genetic testing by the end of the next 3 weeks.
Will's abscess seems to have healed nicely. The swelling is down, the redness gone, and the would looks closed again. He still has has no fevers (HOORAY!), and he seems overall very healthy right now.
It is fun to type a blog entry that ends on a positive note. Especially when I don’t have to start any sentences with “At least…” or “On the bright side…” We will continue to think positively and believe that the end is in sight. Thank you for all the wonderful things you do for us and for others. It is amazing to see what great people are in our lives.
(Oh and I don’t want to jinx ourselves about Will’s sleeping patterns so I WON’T say that things have been going much better right now!)
All our love,
Mr. Mrs. and Mini Moeller
Monday, January 4, 2010
Monday Monday...Blah Blah...Blah Blah Blah
1/4/2010 Monday
We survived our first day back and little boy slept last night too! He woke up as we were going to bed at 10:00 but Paul had the magic touch because he went back to sleep and slept until 6:30! Boy was it hard to wake up at 5:30 today and face reality though. I think I heard the groan of every MN teacher as we headed off to a brand new day.
Paul picked up Will and brought him down to the Hem/Onc clinic for his appt. I was able to join then as soon as I could leave school. They sent William for a CBC (Complete Blood Count) finger stick and I ran into my boys as I came off the elevator. We headed back to the room to wait, and wait, and wait.
They were waiting for his counts to come back and his ANC (Absolute Neutrophil Count) always takes longer. They wanted to see what the GCSF (Granulocyte Stimulation Factor) medicine has done to raise his neutrophil level in the past two days. A nurse practitioner looked at his abscess site on his bottom and thought it was looking better. It is less swollen and red.
The Hematologist came in to share that his neutrophil count was only around 150 today. BUMMER since we have been giving him GCSF for the last 2 days. She was disappointed as well since her goal right now was to help him fight the infection with GCSF and then hopefully take him off of it so we would get on our merry way with the 3x a week finger sticks to find a baseline of his neutrophil levels. She said now she would like him to continue GCSF for 10 days or so and we’ll wait to see what our next move is.
We had to make a choice today on how we will administer the GCSF. We can learn to give baby shots subcutaneously (in his chub like insulin) or they could insert a catheter into his arm and then we would poke the needle into the catheter instead of poking him ourselves every day. For now we chose the catheter. It is called an Insuflon® Subcutaneous Catheter. They put some numbing cream on his arm for a while and then came to “papoose” style wrap him up and put in the catheter. Even though they numbed his arm, it hurt him and he cried hard for a few minutes. Then they administered the GCSF through the catheter.
We thought this was the best choice for now but afterward we learned that we can’t give him a full bath with this catheter as we can’t get it wet. Also the catheter would need to be changed each week, which would require office visits or a home care nurse to come and do it. It would be nice to avoid having to poke our own baby but we’ll see which route works best as time goes on. (We can change our minds at any time).
Unfortunately the GCSF will not arrive from overnight shipment in time for us to learn how to administer it tomorrow so I will have to take William straight to the Hem/Onc clinic after school to get him another dose. Then Wednesday a Home Care nurse will come and work with us to learn how to start giving it to him ourselves at home.
We finally got to leave the clinic at 6:00 tonight and brought our very hungry boy home. The up side to today is that he seemed to do very well back at daycare. Paul said he was playful and happy when he picked him up and Jan said he ate well all day. He again could nap a lot more but hey 1 thing at a time! The cool thing was that William was clapping his hands on his own several times this evening. They have been doing that at daycare a lot and I know being back with his friends helped him to share his new trick. (I’ve seen him clap a little before, but not without prompting him).
Maybe tomorrow will be a little smoother. :)
I think I’ll go to bed at 9:15!
Take Care!
~K, P, and W
We survived our first day back and little boy slept last night too! He woke up as we were going to bed at 10:00 but Paul had the magic touch because he went back to sleep and slept until 6:30! Boy was it hard to wake up at 5:30 today and face reality though. I think I heard the groan of every MN teacher as we headed off to a brand new day.
Paul picked up Will and brought him down to the Hem/Onc clinic for his appt. I was able to join then as soon as I could leave school. They sent William for a CBC (Complete Blood Count) finger stick and I ran into my boys as I came off the elevator. We headed back to the room to wait, and wait, and wait.
They were waiting for his counts to come back and his ANC (Absolute Neutrophil Count) always takes longer. They wanted to see what the GCSF (Granulocyte Stimulation Factor) medicine has done to raise his neutrophil level in the past two days. A nurse practitioner looked at his abscess site on his bottom and thought it was looking better. It is less swollen and red.
The Hematologist came in to share that his neutrophil count was only around 150 today. BUMMER since we have been giving him GCSF for the last 2 days. She was disappointed as well since her goal right now was to help him fight the infection with GCSF and then hopefully take him off of it so we would get on our merry way with the 3x a week finger sticks to find a baseline of his neutrophil levels. She said now she would like him to continue GCSF for 10 days or so and we’ll wait to see what our next move is.
We had to make a choice today on how we will administer the GCSF. We can learn to give baby shots subcutaneously (in his chub like insulin) or they could insert a catheter into his arm and then we would poke the needle into the catheter instead of poking him ourselves every day. For now we chose the catheter. It is called an Insuflon® Subcutaneous Catheter. They put some numbing cream on his arm for a while and then came to “papoose” style wrap him up and put in the catheter. Even though they numbed his arm, it hurt him and he cried hard for a few minutes. Then they administered the GCSF through the catheter.
We thought this was the best choice for now but afterward we learned that we can’t give him a full bath with this catheter as we can’t get it wet. Also the catheter would need to be changed each week, which would require office visits or a home care nurse to come and do it. It would be nice to avoid having to poke our own baby but we’ll see which route works best as time goes on. (We can change our minds at any time).
Unfortunately the GCSF will not arrive from overnight shipment in time for us to learn how to administer it tomorrow so I will have to take William straight to the Hem/Onc clinic after school to get him another dose. Then Wednesday a Home Care nurse will come and work with us to learn how to start giving it to him ourselves at home.
We finally got to leave the clinic at 6:00 tonight and brought our very hungry boy home. The up side to today is that he seemed to do very well back at daycare. Paul said he was playful and happy when he picked him up and Jan said he ate well all day. He again could nap a lot more but hey 1 thing at a time! The cool thing was that William was clapping his hands on his own several times this evening. They have been doing that at daycare a lot and I know being back with his friends helped him to share his new trick. (I’ve seen him clap a little before, but not without prompting him).
Maybe tomorrow will be a little smoother. :)
I think I’ll go to bed at 9:15!
Take Care!
~K, P, and W
Sunday, January 3, 2010
ER Day 2
1/3/2010 Sunday
Paul and I are getting ready to go back to school today, vacation is OVER…dun dun dun!
We got up and too William to Children’s ER again to get his bottom checked and another does of GCSF. We were lucky to arrive when we did because it wasn’t busy yet and we got right in.
Right before we left home, I changed a poopy diaper and found that William’s abscess had turned into something resembling a whitehead. (Gross I know!) As I wiped his bottom it broke open and started to weep. We were a little nervous, as we weren’t sure if this was a good thing or not.
We showed this to the ER Dr. and he said that he was very happy to hear that it broke open on its own and was draining. He said to continue to help it drain when possible. He thought the infection site looked worse though today but later said that we might attribute that to William’s higher neutrophil levels from the GCSF medicine. (Remember neutrophils make pus, and redness when you have an infection to help fight it).
The main purpose of today’s visit was to get William another dose of GCSF. They were planning on giving this to him in a shot today. The ER Dr. came though and said that the pharmacy was telling him that due to the concentration they had, it would take 3 shots to get all of the GCSF into the poor baby. The ER Dr. recommended giving it to him in an IV instead. He really wanted to avoid poking William as much as possible. The Dr. said that since we were going ahead with the I.V. he and his team of Dr.’s would like to give William a does of I.V. antibiotics as well to hit the infection hard one more time. We agreed and got ready to start all that.
Our nurse was really great, she was the same one we had yesterday and she was the same nurse who treated William when we first brought him to the ER on December 4th. It was nice to know she really cared about William. We’re so lucky to get all the compliments we do about what a cute, happy, and well-behaved baby we have! Our nurse Holly was no exception. She loved flirting and teasing William and she was very gentle with him. Her first attempt at his I.V. didn’t work out though so she had to try his other arm. (So 2 pokes today).
While his I.V. meds dripped, our Hematologist Dr. Schultz popped in to visit and see how everything was going. She apologized for the GCSF mix up, as there was a misunderstanding with the doses. She explained that it IS totally possible to give him the right dose in just one shot and that they do it every day with cancer patients in the Hem/Onc clinic. It’s just that the ER Dr.’s weren’t as familiar with this drug and so they decided to go the I.V. route. It’s funny how things work out though because I felt better in the end giving him the I.V. antibiotics so we can really fight this infection.
William handled everything very well yet again. He deserves a pony for sure!
He did not sleep at all last night and we spent hours dealing with him whimpering and being inconsolable. (I think it was a combo of no good naps and 3 nasty pokes at the ER yesterday). He continued to be a little clingy once we got home today, but I gave him a nice warm bath to soak his bottom (And to wash off the poop he managed to get all over him from a diaper blow-out!) and he has been taking a VERY long afternoon nap.
Tomorrow afternoon we have to take William back to the Hematology/Oncology clinic for a check up and the last scheduled shot of GCSF. We will do a CBC to see what his neutrophil levels are and try to decide if we can discontinue GCSF for a while. Then we’ll see where we go from there. We have plenty of creams and ointments and oral antibiotics to tide us over till then!
Hope we get some sleep tonight or it will be a long first day back at school.
~Katie, Paul and William
Paul and I are getting ready to go back to school today, vacation is OVER…dun dun dun!
We got up and too William to Children’s ER again to get his bottom checked and another does of GCSF. We were lucky to arrive when we did because it wasn’t busy yet and we got right in.
Right before we left home, I changed a poopy diaper and found that William’s abscess had turned into something resembling a whitehead. (Gross I know!) As I wiped his bottom it broke open and started to weep. We were a little nervous, as we weren’t sure if this was a good thing or not.
We showed this to the ER Dr. and he said that he was very happy to hear that it broke open on its own and was draining. He said to continue to help it drain when possible. He thought the infection site looked worse though today but later said that we might attribute that to William’s higher neutrophil levels from the GCSF medicine. (Remember neutrophils make pus, and redness when you have an infection to help fight it).
The main purpose of today’s visit was to get William another dose of GCSF. They were planning on giving this to him in a shot today. The ER Dr. came though and said that the pharmacy was telling him that due to the concentration they had, it would take 3 shots to get all of the GCSF into the poor baby. The ER Dr. recommended giving it to him in an IV instead. He really wanted to avoid poking William as much as possible. The Dr. said that since we were going ahead with the I.V. he and his team of Dr.’s would like to give William a does of I.V. antibiotics as well to hit the infection hard one more time. We agreed and got ready to start all that.
Our nurse was really great, she was the same one we had yesterday and she was the same nurse who treated William when we first brought him to the ER on December 4th. It was nice to know she really cared about William. We’re so lucky to get all the compliments we do about what a cute, happy, and well-behaved baby we have! Our nurse Holly was no exception. She loved flirting and teasing William and she was very gentle with him. Her first attempt at his I.V. didn’t work out though so she had to try his other arm. (So 2 pokes today).
While his I.V. meds dripped, our Hematologist Dr. Schultz popped in to visit and see how everything was going. She apologized for the GCSF mix up, as there was a misunderstanding with the doses. She explained that it IS totally possible to give him the right dose in just one shot and that they do it every day with cancer patients in the Hem/Onc clinic. It’s just that the ER Dr.’s weren’t as familiar with this drug and so they decided to go the I.V. route. It’s funny how things work out though because I felt better in the end giving him the I.V. antibiotics so we can really fight this infection.
William handled everything very well yet again. He deserves a pony for sure!
He did not sleep at all last night and we spent hours dealing with him whimpering and being inconsolable. (I think it was a combo of no good naps and 3 nasty pokes at the ER yesterday). He continued to be a little clingy once we got home today, but I gave him a nice warm bath to soak his bottom (And to wash off the poop he managed to get all over him from a diaper blow-out!) and he has been taking a VERY long afternoon nap.
Tomorrow afternoon we have to take William back to the Hematology/Oncology clinic for a check up and the last scheduled shot of GCSF. We will do a CBC to see what his neutrophil levels are and try to decide if we can discontinue GCSF for a while. Then we’ll see where we go from there. We have plenty of creams and ointments and oral antibiotics to tide us over till then!
Hope we get some sleep tonight or it will be a long first day back at school.
~Katie, Paul and William
Saturday, January 2, 2010
ER Visit
1/2/2010 Saturday
We came home this afternoon from a 5 hour stint in Children’s Hospital ER. There was NO emergency so you can breathe a little easier! We woke up and made an appt. to take Liam to his 3rd finger stick of the week. Right before leaving we changed his diaper and saw that the area where his peri-rectal abscess had been was red and the incision site from his surgery looked like a wet scab. (It has been fine up until today).
We took him for the finger stick anyhow, thinking we’d give his bottom a little time to get better in case it was just irritated from poop. We checked his bottom as we were ready to leave our normal clinic and decided it looked the same.
Our only option today was to take him right to the ER since the Hem/Onc clinic is closed on the weekends. We knew that any sign of infection is VERY serious for someone with low or no neutrophils. We were very lucky when we arrived because they were not busy and we got right in. We saw a few doctors who agreed that our concerns were very valid. They ended up deciding that Liam’s abscess is infected again, but that we caught it extremely early. The actual infection seemed to be the size of a pea. Otherwise he looked VERY healthy to everyone there. He has been in a great mood today and was acting like himself!
We got a surprise as our regular pediatrician came into our ER room. It turned out that he was at the ER for his own granddaughter and found out we were there as well so he came to say hi and check on William. Then our own Hematologist who has been treating Liam since he was staying in the hospital happened to be the one on call so she came to see Liam. We were really happy that she could come and sort of take over his treatment. (Not that the other Dr.’s weren’t doing a great job, but she has been through everything else with us and it was good to have her help make the important care decisions).
She said that his ANC (Absolute Neutrophil Count) was around 150 today. It was nice to hear that they had gone up from 0 on Wednesday but the change is not that significant when dealing with infection. We had a few options to consider. We ended up agreeing to I.V. antibiotics in the ER today with an I.V. dose of GCSF (Granulocyte Stimulation Factor) which helps to raise his Neutrophil count. Liam needed I.V. antibiotics to hit the infection hard, and they decided that since he was looking so healthy otherwise, he did not have to be admitted and stay in the hospital. He got those 2 I.V. doses and then a prescription for an oral antibiotic for the next 10 days.
We were a little bummed to have to give the GCSF because synthetically raising his neutrophil count will now mess with our attempts to see a general baseline of Liam’s natural neutrophil levels. (Our 6 weeks of pricking his finger 3x a week will now be stretched out even longer). We decided it was important to give the GCSF despite that issue because we wanted to get him healthy ASAP.
Now because the GCSF raises his Neutrophils, it could actually make the abscess worsen before it gets better. Sounds crazy, but as your body makes more puss cells (Neutrophils) it will start to act as a normal body would and make the infection site swell, get redder and make puss. We will need to watch this to see if he will have to have the abscess drained again like he did in the hospital. (Hopefuly NOT!)
We will have to bring Liam back to the ER tomorrow for his second dose of GCSF which should be just a quick check of his abscess and then a shot. Then we will take him into the Hem/Onc clinic on Monday for a check in and a third dose of GCSF. We will then talk about if we should continue the GCSF or take a break to continue watching his typical levels.
Now we have to think happy thoughts about William getting past this infection quickly. We handled everything well today, especially the little man who just whimpered when they put in the IV and was a perfect angel the rest of the time. He even flirted and smiled at the nurses after they finished poking him! He played a few mean games of Peek-A-Boo today and started to push up on his knees in our bed this morning. We just want him to have time to be a normal boy so he can catch up on things like learning to crawl.
I don’t want to jinx ourselves but he has only been waking up 1x per night in the last few nights so hopefully we are on track to good nights of sleep again!
Thanks to all of you who are keeping tabs on us. It’s nice to hear that many of you are interested in our story and are praying or thinking about us. We wish you all the best!
Love,
~The Moeller’s
We came home this afternoon from a 5 hour stint in Children’s Hospital ER. There was NO emergency so you can breathe a little easier! We woke up and made an appt. to take Liam to his 3rd finger stick of the week. Right before leaving we changed his diaper and saw that the area where his peri-rectal abscess had been was red and the incision site from his surgery looked like a wet scab. (It has been fine up until today).
We took him for the finger stick anyhow, thinking we’d give his bottom a little time to get better in case it was just irritated from poop. We checked his bottom as we were ready to leave our normal clinic and decided it looked the same.
Our only option today was to take him right to the ER since the Hem/Onc clinic is closed on the weekends. We knew that any sign of infection is VERY serious for someone with low or no neutrophils. We were very lucky when we arrived because they were not busy and we got right in. We saw a few doctors who agreed that our concerns were very valid. They ended up deciding that Liam’s abscess is infected again, but that we caught it extremely early. The actual infection seemed to be the size of a pea. Otherwise he looked VERY healthy to everyone there. He has been in a great mood today and was acting like himself!
We got a surprise as our regular pediatrician came into our ER room. It turned out that he was at the ER for his own granddaughter and found out we were there as well so he came to say hi and check on William. Then our own Hematologist who has been treating Liam since he was staying in the hospital happened to be the one on call so she came to see Liam. We were really happy that she could come and sort of take over his treatment. (Not that the other Dr.’s weren’t doing a great job, but she has been through everything else with us and it was good to have her help make the important care decisions).
She said that his ANC (Absolute Neutrophil Count) was around 150 today. It was nice to hear that they had gone up from 0 on Wednesday but the change is not that significant when dealing with infection. We had a few options to consider. We ended up agreeing to I.V. antibiotics in the ER today with an I.V. dose of GCSF (Granulocyte Stimulation Factor) which helps to raise his Neutrophil count. Liam needed I.V. antibiotics to hit the infection hard, and they decided that since he was looking so healthy otherwise, he did not have to be admitted and stay in the hospital. He got those 2 I.V. doses and then a prescription for an oral antibiotic for the next 10 days.
We were a little bummed to have to give the GCSF because synthetically raising his neutrophil count will now mess with our attempts to see a general baseline of Liam’s natural neutrophil levels. (Our 6 weeks of pricking his finger 3x a week will now be stretched out even longer). We decided it was important to give the GCSF despite that issue because we wanted to get him healthy ASAP.
Now because the GCSF raises his Neutrophils, it could actually make the abscess worsen before it gets better. Sounds crazy, but as your body makes more puss cells (Neutrophils) it will start to act as a normal body would and make the infection site swell, get redder and make puss. We will need to watch this to see if he will have to have the abscess drained again like he did in the hospital. (Hopefuly NOT!)
We will have to bring Liam back to the ER tomorrow for his second dose of GCSF which should be just a quick check of his abscess and then a shot. Then we will take him into the Hem/Onc clinic on Monday for a check in and a third dose of GCSF. We will then talk about if we should continue the GCSF or take a break to continue watching his typical levels.
Now we have to think happy thoughts about William getting past this infection quickly. We handled everything well today, especially the little man who just whimpered when they put in the IV and was a perfect angel the rest of the time. He even flirted and smiled at the nurses after they finished poking him! He played a few mean games of Peek-A-Boo today and started to push up on his knees in our bed this morning. We just want him to have time to be a normal boy so he can catch up on things like learning to crawl.
I don’t want to jinx ourselves but he has only been waking up 1x per night in the last few nights so hopefully we are on track to good nights of sleep again!
Thanks to all of you who are keeping tabs on us. It’s nice to hear that many of you are interested in our story and are praying or thinking about us. We wish you all the best!
Love,
~The Moeller’s
Subscribe to:
Posts (Atom)