Well we saw the pediatrician today. The GI doc actually had already called her and expressed concern for Z's cough. She told Dr. Kate that his lungs sounded clear but she wanted a 2nd opinion. Dr. Kate and Dr. Liz suspect RSV or a cold. They did the RSV swap and we will know by Monday if that is what he has. For now I have to count his breaths per minute and if it gets above 40 I call Dr. Kate and above 60 I go to the ER. His oxygen level was at 99 so that is good news. He is still eating so I am not real worried about dehydration. The good part of this is that if it is RSV or a cold, it can be the cause of his WBC rising and his spleen being enlarged. I never thought I'd wish a virus or RSV on my child but it sure would be better than JMML!
If it is RSV, let me tell you something, the Insurance company will hear from me b/c they denied him the RSV vaccine so look out! I nearly called them today but Jason told me to calm down and wait for the test results. Fine. So he gets the brunt of my bad mood...poor guy!
The nurse comes tomorrow and will weigh him and take his blood. I will then talk to Dr. Rob about all this and get his opinion.
Gotta go finish the dishes while the house is quiet.
Thursday, February 28, 2008
Wednesday, February 27, 2008
I want off this ride!
Z had his GI appt and it did not go as I had planned. I want to say we are just being cautious and I am being paranoid but with his history I'm not too confident that this is just a mom and doctor being cautious.
First, Z was at 10lbs so this was good. However, for 2 or 3 days he has gotten his croup-like cough/bark back and that brings back so many memories for me. It would come about when he ate and at least he is eating like a champ. So I figured we just needed to up his reflux medicine. I did read in one of my journals at work that GERD can mimic a croup like cough so this made me feel better. But as I got Z out of the car I noticed lots of green goop in his eye...not good! The doc says his lungs sound clear but as he finished eating she said the cough/breathing did sound "gunky" and he was breathing hard. Well 5 minutes later he is laughing and cooing and relaxed. She upped his dose of pepcid and said we may have to try a new med for this.
Then she tells me she can feel the tip of his spleen. Well shit! I know that an enlarged liver and spleen are part of JMML but she said his liver is fine and an enlarged spleen can also mean he is fighting off a virus but given his history she wants it checked. We all know what I was thinking. We are back on the roller coaster and I would love to get off this ride and resume normal life, ok?
Tomorrow we see the pediatrician for a second listen and opinion. Then he has to have an abdominal ultrasound to measure his spleen. Maybe it grew along w/him and this is normal for him...let's hope. Everyone says to follow your mommy gut. Well when he got sick around Christmas I knew deep down something wasn't right but after 2 ER trips and like 5 docs listening to his lungs and saying they were clear, I tried to push that fear out of my mind. It was the pediatrician that said, "what is your gut saying?" and when I said, "Something is wrong" that is when she sent me to the hospital with Z and this ride began. I am trying to listen to my gut now but I am also trying to tune it out. I feel like something just is not right and I just want answers.
My Mom's birthday is approaching and I am thinking about her a lot these days and missing her terribly. Today I cracked. I don't want to be strong any more. I love my family and friends for supporting me and telling me I'm strong but right now, I don't want to be. I want to take my boys and run away with them and I want my mom to go with us. I want her here with me and I want her to hold my baby boy and see his precious smile. I want to feel her arms around me or hear her say, "Oh shit" in only the way she can when she sees something that she thinks is wrong.
I want off this stupid ride that I did not ask to be on. I want answers for my son and I want to make him better and I don't want to be strong anymore. As Mom always said, "God doesn't give you more than you can handle". Well I don't think he knows me very well b/c I use to believe that but today, I think I reached my limit and I don't want to see how much more I can handle. I've had enough, thank you very much!
First, Z was at 10lbs so this was good. However, for 2 or 3 days he has gotten his croup-like cough/bark back and that brings back so many memories for me. It would come about when he ate and at least he is eating like a champ. So I figured we just needed to up his reflux medicine. I did read in one of my journals at work that GERD can mimic a croup like cough so this made me feel better. But as I got Z out of the car I noticed lots of green goop in his eye...not good! The doc says his lungs sound clear but as he finished eating she said the cough/breathing did sound "gunky" and he was breathing hard. Well 5 minutes later he is laughing and cooing and relaxed. She upped his dose of pepcid and said we may have to try a new med for this.
Then she tells me she can feel the tip of his spleen. Well shit! I know that an enlarged liver and spleen are part of JMML but she said his liver is fine and an enlarged spleen can also mean he is fighting off a virus but given his history she wants it checked. We all know what I was thinking. We are back on the roller coaster and I would love to get off this ride and resume normal life, ok?
Tomorrow we see the pediatrician for a second listen and opinion. Then he has to have an abdominal ultrasound to measure his spleen. Maybe it grew along w/him and this is normal for him...let's hope. Everyone says to follow your mommy gut. Well when he got sick around Christmas I knew deep down something wasn't right but after 2 ER trips and like 5 docs listening to his lungs and saying they were clear, I tried to push that fear out of my mind. It was the pediatrician that said, "what is your gut saying?" and when I said, "Something is wrong" that is when she sent me to the hospital with Z and this ride began. I am trying to listen to my gut now but I am also trying to tune it out. I feel like something just is not right and I just want answers.
My Mom's birthday is approaching and I am thinking about her a lot these days and missing her terribly. Today I cracked. I don't want to be strong any more. I love my family and friends for supporting me and telling me I'm strong but right now, I don't want to be. I want to take my boys and run away with them and I want my mom to go with us. I want her here with me and I want her to hold my baby boy and see his precious smile. I want to feel her arms around me or hear her say, "Oh shit" in only the way she can when she sees something that she thinks is wrong.
I want off this stupid ride that I did not ask to be on. I want answers for my son and I want to make him better and I don't want to be strong anymore. As Mom always said, "God doesn't give you more than you can handle". Well I don't think he knows me very well b/c I use to believe that but today, I think I reached my limit and I don't want to see how much more I can handle. I've had enough, thank you very much!
As promised...
Here are some pics...Sorry if my scanner was dirty or the pic is not centered! LOL Thanks Kristin for the reminder!
I just can't believe Jonathan is 3! Zachary was a bit tired but I think he did just fine!
And here are my sweethearts together!
Denise you had asked if Zachary was feeling fine otherwise and he seems to be. He does the normal baby stuff. I know the reflux makes him gassier and his tummy hurt sometimes but all in all he is pretty mellow. I think he is hitting a growth spurt or my sister is wearing him out b/c he is sleeping better and ate about 30 oz yesterday!
Oh JD is awake, gotta run!
Sunday, February 24, 2008
Late Update...
Sorry for the delay, the winter storm and our first real day trip as a family of four kept me a bit busy and stressed! I bow down to those of you with more than 2 kids...I will not be joining that group! ha ha ha!
Anyway, Zachary gained 2 oz in 3 days and is now up to 9lbs and 11oz!!! His WBC went up to 19K but we are still in the "OK" range. We will do this all again next Thursday!
He has been a bit fussy and has a bit of a cough but his lungs are clear. I get nervous about that but I know the reflux can mess with his throat. We got see the GI on Wednesday so I plan to ask her lots of questions.
We got their pictures back and they turned out cute even though Z was a bit sleepy. He has changed so much since we had them taken. Now I have to make sure we bought enough!
Gotta run, the house is quiet so I need to clean!
Anyway, Zachary gained 2 oz in 3 days and is now up to 9lbs and 11oz!!! His WBC went up to 19K but we are still in the "OK" range. We will do this all again next Thursday!
He has been a bit fussy and has a bit of a cough but his lungs are clear. I get nervous about that but I know the reflux can mess with his throat. We got see the GI on Wednesday so I plan to ask her lots of questions.
We got their pictures back and they turned out cute even though Z was a bit sleepy. He has changed so much since we had them taken. Now I have to make sure we bought enough!
Gotta run, the house is quiet so I need to clean!
Monday, February 18, 2008
Absolutely Incredible!
Today, Tish, the home nurse came out to weigh Zachary. Dr. Rob wanted to make sure he didn't lose more weight. Well so did I! So I started offering him 4-5oz each feeding and putting in like 4 or 5 tsp of rice cereal. He went from eating an average of 17oz a day to about 22 oz a day! Wow! I truly think he had a touch of the stomach bug that I had last weekend. It was not a nice one and I think he had a bit of it. He is now back to being a normal baby and only puking 1-2 times a day!
And his weight, ready for this...in 4 days the little booger went from 8lbs and 14oz to 9lbs and 9oz! HOLY CRAP! Can you believe that? Yesterday he ate 26 oz and only puked 1 time!
I'm afraid Jonathan has an ear infection. He tends to get an earache and then if it is an infection he wakes up at like 1am with a fever and screaming. Well Friday he told me his ear hurt and his neck did. I had planned on taking him to the doctor Saturday morning especially when he had a fever of 100.4 Friday night. Well he woke up at 5am with a fever of 100.9 and an ear ache but then the fever went away and he said his ear was all better. I shouldn't have listened because I didn't take him in Saturday night the fever came back. Sunday we gave him Tylenol and ear drops and he was fine. Then he woke up today and said he was all better and didn't need to see Dr. "Cake" (aka Kate). Let's hope it stays away!!!
Ok Jonathan has his plastic bat and is pretending to be a pirate...Gotta go!!!
And his weight, ready for this...in 4 days the little booger went from 8lbs and 14oz to 9lbs and 9oz! HOLY CRAP! Can you believe that? Yesterday he ate 26 oz and only puked 1 time!
I'm afraid Jonathan has an ear infection. He tends to get an earache and then if it is an infection he wakes up at like 1am with a fever and screaming. Well Friday he told me his ear hurt and his neck did. I had planned on taking him to the doctor Saturday morning especially when he had a fever of 100.4 Friday night. Well he woke up at 5am with a fever of 100.9 and an ear ache but then the fever went away and he said his ear was all better. I shouldn't have listened because I didn't take him in Saturday night the fever came back. Sunday we gave him Tylenol and ear drops and he was fine. Then he woke up today and said he was all better and didn't need to see Dr. "Cake" (aka Kate). Let's hope it stays away!!!
Ok Jonathan has his plastic bat and is pretending to be a pirate...Gotta go!!!
Thursday, February 14, 2008
12 weeks
Happy Valentine's Day and Happy 12 weeks to Zachary!
Today the visiting nurse came and unfortunately Zachary lost 4 oz. He is down to 8 lbs and 14 oz. Dr. Rob called and said that because Z had a rough week due to his reflux (lots of puking) we will let this one slide and weigh him again early next week. If he lost more then we will have to reasses his situation and possibly put the feeding tube back in. :-( Why can't we just feed him chocolate cake? Steak and potatoes?
As for his blood counts, the WBC was up to 12K but it is still good. His counts are good so nwo we focus on eating! No projectile vomitting today! YIPPEE! Maybe he can keep this trend going.
I have had several people tell me how strong I am. Can I just tell you all that I am not that strong. I remember when a friend told me about her son's battle w/cancer and I asked her, "How did you do it?" and she said, "You just do". I never really got it until now. It is not that you are superwoman but you do what you have to do! You do it for that sweet little child smiling up at you (or puking on you). What wouldn't I do for him? I truly feel that my Mom's illness in April helped prepare me for this battle. When all 9 of us siblings were in FL we did a lot of bickering and there were a lot of misunderstandings about Mom's diagnosis but I remember my cousin telling us that we are only hearing what we want to hear. Some of us heard the good and some heard the bad. With Mom we were in limbo not knowing what was going on. She fought so hard for those 6-7 weeks and it was so hard on all of us. The one thing it taught me was to take it day by day and celebrate ANY good news! I wish Mom were here now to help us celebrate the good days but I know she is cheering us on from up above.
So the answer to my own question, "How do you do it?"? I keep it real. I focus on the positive but don't forget the reality of it all. You can't get caught up in the negative. I have my friends and family and they help me more than they will ever know.
I have to add a special thank you here...Pat and Nancy I want to thank you both so much for taking care of my Dad while he is in FL. I am so glad he has the both of you to keep an eye on him. Nancy I hope you are feeling better soon!
Today the visiting nurse came and unfortunately Zachary lost 4 oz. He is down to 8 lbs and 14 oz. Dr. Rob called and said that because Z had a rough week due to his reflux (lots of puking) we will let this one slide and weigh him again early next week. If he lost more then we will have to reasses his situation and possibly put the feeding tube back in. :-( Why can't we just feed him chocolate cake? Steak and potatoes?
As for his blood counts, the WBC was up to 12K but it is still good. His counts are good so nwo we focus on eating! No projectile vomitting today! YIPPEE! Maybe he can keep this trend going.
I have had several people tell me how strong I am. Can I just tell you all that I am not that strong. I remember when a friend told me about her son's battle w/cancer and I asked her, "How did you do it?" and she said, "You just do". I never really got it until now. It is not that you are superwoman but you do what you have to do! You do it for that sweet little child smiling up at you (or puking on you). What wouldn't I do for him? I truly feel that my Mom's illness in April helped prepare me for this battle. When all 9 of us siblings were in FL we did a lot of bickering and there were a lot of misunderstandings about Mom's diagnosis but I remember my cousin telling us that we are only hearing what we want to hear. Some of us heard the good and some heard the bad. With Mom we were in limbo not knowing what was going on. She fought so hard for those 6-7 weeks and it was so hard on all of us. The one thing it taught me was to take it day by day and celebrate ANY good news! I wish Mom were here now to help us celebrate the good days but I know she is cheering us on from up above.
So the answer to my own question, "How do you do it?"? I keep it real. I focus on the positive but don't forget the reality of it all. You can't get caught up in the negative. I have my friends and family and they help me more than they will ever know.
I have to add a special thank you here...Pat and Nancy I want to thank you both so much for taking care of my Dad while he is in FL. I am so glad he has the both of you to keep an eye on him. Nancy I hope you are feeling better soon!
Monday, February 11, 2008
Power of Prayer
Let me first share the important news and then I'll go into my normal babble...
Dr. S called me today to tell me that the prelimenary results of the bloodwork in CA came back normal! The cell culture also came back normal and they are waiting on 2 of the 5 genetic tests to come back. However, this is incredible news! Are we out of the woods? No not yet but it is a good day and as a good friend told me "go celebrate!".
We will now monitor Z's bloodwork via Dr. Rob once a week. If the numbers start to go bad, then we will repeat the cell culture. Dr. S said that Z could have had an acute illness that is cured or it could simply be that the chemo killed off the diseased cells and it will eventually come back.
My Dad told me last Wednesday that he believed Z was getting better on his own and would beat this thing. I am beginning to believe that this may be the case!
I have always believed in the power of prayer but the last few years have taught me that God doesn't answer the prayers the way we want him too. This was hard to accept. I mean why pray if you don't get the result you want? In the past 2-3 years I've learned to pray for strength, courage and peace. By doing this I feel I can conquer anything that comes my way. Granted, I may not like it and I may get pretty darn ticked at the big guy but if I didn't I wouldn't be human!
I am hoping that baby Z is my little miracle boy and that this is the beginning of good things to come. I just fear that while I am enjoying this good news, bad news is around the corner somewhere. Well, we can cross that bridge when we get to it!
I'd like to again thank everyone that has been so supportive and generous. My family truly appreciates you all and all you have done for us. I have some thank you's I still need to send out but I had to battle a stomach bug this past weekend and now I'm back to work so please give me time. Your kindness is appreciated and we love each of you for what you are doing for us!
Have a great evening and thank you for helping us!
Dr. S called me today to tell me that the prelimenary results of the bloodwork in CA came back normal! The cell culture also came back normal and they are waiting on 2 of the 5 genetic tests to come back. However, this is incredible news! Are we out of the woods? No not yet but it is a good day and as a good friend told me "go celebrate!".
We will now monitor Z's bloodwork via Dr. Rob once a week. If the numbers start to go bad, then we will repeat the cell culture. Dr. S said that Z could have had an acute illness that is cured or it could simply be that the chemo killed off the diseased cells and it will eventually come back.
My Dad told me last Wednesday that he believed Z was getting better on his own and would beat this thing. I am beginning to believe that this may be the case!
I have always believed in the power of prayer but the last few years have taught me that God doesn't answer the prayers the way we want him too. This was hard to accept. I mean why pray if you don't get the result you want? In the past 2-3 years I've learned to pray for strength, courage and peace. By doing this I feel I can conquer anything that comes my way. Granted, I may not like it and I may get pretty darn ticked at the big guy but if I didn't I wouldn't be human!
I am hoping that baby Z is my little miracle boy and that this is the beginning of good things to come. I just fear that while I am enjoying this good news, bad news is around the corner somewhere. Well, we can cross that bridge when we get to it!
I'd like to again thank everyone that has been so supportive and generous. My family truly appreciates you all and all you have done for us. I have some thank you's I still need to send out but I had to battle a stomach bug this past weekend and now I'm back to work so please give me time. Your kindness is appreciated and we love each of you for what you are doing for us!
Have a great evening and thank you for helping us!
Tuesday, February 5, 2008
And down we go...
We went to see Dr. Rob today and he hasn't seen Z in about 3 weeks. The entire staff was blown away by how great he looked and how he filled out. His weight was at 9lbs and 3oz and he was about 23 1/4" long. He is FINALLY on the charts! 10% for weight and 50% for height.
We got the results of the bloodwork from today and his WBC went down to 9K! Holy crap! This is great! His monocytes went up to 13% and he is still showing some immature red blood cells. I asked him what this meant and he said that Z does not have any trends and it's a bit confusing but he will take confusing since he is doing so well. The boy likes to keep us all guessing. His red blood cell count and platelets are holding steady. We are still waiting on the bloodwork from CA. Come on already!!! But for now we will take what we can get and today is a good day.
Zachary is eating about 3.5 to 4 oz at a time and about 18 oz a day. I wanted to see if I stopped the cereal in his formula if he'd eat more. Well, that was a bad choice. He puked up both bottles after not puking for 3 days and then got a barky cough. I guess the cereal truly does help him keep it down and I just aggrevated his reflux. Nice one!
I go back to work next week and I am so ready for a routine. Ok I gotta run and feed Zachary.
We got the results of the bloodwork from today and his WBC went down to 9K! Holy crap! This is great! His monocytes went up to 13% and he is still showing some immature red blood cells. I asked him what this meant and he said that Z does not have any trends and it's a bit confusing but he will take confusing since he is doing so well. The boy likes to keep us all guessing. His red blood cell count and platelets are holding steady. We are still waiting on the bloodwork from CA. Come on already!!! But for now we will take what we can get and today is a good day.
Zachary is eating about 3.5 to 4 oz at a time and about 18 oz a day. I wanted to see if I stopped the cereal in his formula if he'd eat more. Well, that was a bad choice. He puked up both bottles after not puking for 3 days and then got a barky cough. I guess the cereal truly does help him keep it down and I just aggrevated his reflux. Nice one!
I go back to work next week and I am so ready for a routine. Ok I gotta run and feed Zachary.
Saturday, February 2, 2008
In a holding pattern
That seems to be the phrase that fits us the best. Dr. S. from Children's hospital called me last night and I was able to ask more questions and write down some answers. I at least now know why we are in a holding pattern and that it can continue this way for a few more weeks. So here is the information I now have:
Q1. What is this test in San Francisco doing?
A1. This test is taking some of Z's red cells to see if they can grow alone. JMML cells can grow independently without support...normal red cells can not.
Q2. What if this test comes back negative for JMML (meaning the red cells do not grow)?
A2. Then we will continue to watch his white and red cell counts. If the white continue to increase and the red decrease then we will send the blood to San Francisco again and repeat this test again (waiting for 2 weeks). We will do this because the ARC (chemo) Z had last month may have killed off the JMML cells and made his bloodwork appear "normal".
Q3. If it is positive (meaning red cells grow)?
A3. He has then met all the characteristics for JMML and we will move forward with a bone marrow transplant.
Additional information Dr. S gave me was that this could (his blood counts changing) be temporary (or a fluke) because some babies can do this. We want to be sure this is JMML and this is the final test for it.
That is our holding pattern. We wait and see. In the meantime we fatten the boy up with cereal in his formula and a high calorie formula. He seems to be holding down most of his feedings (knock on wood) and this morning at 2am he at 5 ounces! The most ever at one time!
Can someone tell me why my 3 year old son insists on peeing outside? Seriously, I only let him pee on a tree one time last summer (we were in the country) and I was hoping it would help him to become potty trained. Well he hasn't forgotten this time and while we have no trees out front he proceeded to pull down his pants and pee in the 6 inches of snow we got! Ah, my little red neck son!
Q1. What is this test in San Francisco doing?
A1. This test is taking some of Z's red cells to see if they can grow alone. JMML cells can grow independently without support...normal red cells can not.
Q2. What if this test comes back negative for JMML (meaning the red cells do not grow)?
A2. Then we will continue to watch his white and red cell counts. If the white continue to increase and the red decrease then we will send the blood to San Francisco again and repeat this test again (waiting for 2 weeks). We will do this because the ARC (chemo) Z had last month may have killed off the JMML cells and made his bloodwork appear "normal".
Q3. If it is positive (meaning red cells grow)?
A3. He has then met all the characteristics for JMML and we will move forward with a bone marrow transplant.
Additional information Dr. S gave me was that this could (his blood counts changing) be temporary (or a fluke) because some babies can do this. We want to be sure this is JMML and this is the final test for it.
That is our holding pattern. We wait and see. In the meantime we fatten the boy up with cereal in his formula and a high calorie formula. He seems to be holding down most of his feedings (knock on wood) and this morning at 2am he at 5 ounces! The most ever at one time!
Can someone tell me why my 3 year old son insists on peeing outside? Seriously, I only let him pee on a tree one time last summer (we were in the country) and I was hoping it would help him to become potty trained. Well he hasn't forgotten this time and while we have no trees out front he proceeded to pull down his pants and pee in the 6 inches of snow we got! Ah, my little red neck son!
Friday, February 1, 2008
February 2008
This is what we woke up to...a nice snow day!
Zachary had some bloodwork done yesterday and a visit from the nurse. His weight is up to 9lbs 2 oz. We want him to gain 1/2 to 1 oz a day and he didn't quite make that. He was down an ounce on Monday so I was very happy to see a gain. He is eating more though so we'll take what we can get. He has lots of smiles to offer us and adores his big brother...ok well most of the time! Watch the video below:
As for his bloodwork, his WBC is up from 14.9 (last week) to 15.6. Darn it! His monocytes are down to 6 and are now in the normal range. These are the 2 numbers Dr. Rob is watching. We go see him on Tuesday and we will discuss if he needs chemo again. Hopefully we will have the blood test from CA by then. I put a call into my coordinator at Children's asking the doctor a few questions. I hope she gets back to me soon.
Anyway, that is all for our update today! I have to go put JD down for a nap so that when Jason gets home from the store (on a mission to find him some snow boots) we can play in the snow! Not sure I will last long but I can bribe JD with hot chocolate.
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