Two.Seven.Four! Yes that is Jake's new number (as he says it)! Jake's platelet count is at 274,000!!! Praise the Lord!
So, with the fabulous news out of the way since I couldn't contain it....he obviously had his blood drawn today. John took him in since it was my first day back to work. Jake was persistent with getting his finger pricked since that is what they did last time. The lab was able to do it for him and that calmed his nerves a bunch. We were able to cancel his appointment for tomorrow to see Dr. Kane since everything came back good. Jake will go back to see him in four weeks. :) We are so excited for this news.
Two weeks ago we had good news but a part of me was reserved since he had just come off steroids and we knew there was a possibility that he ONLY had high numbers because of the steroids. With this news today, it confirms that Jake's body is back on track and not attacking/killing his platelets as it started doing. He hasn't been on any medicine since July 28th. I can finally breath! About a week ago I was praying and finally just told God, "I give it all to you." As much as I pray, I shocked myself that I had not done this already. I had not told him this....I told him I knew he had a plan and other things we all say but I had not actually given it to him. I told him I would not worry about it, I believed in him, and knew we would be able to handle whatever the outcome was. I'm not sure what God's reason was for this awful thing happening to Jake but I will not ever take either one of my children for granted. I would like to think I didn't do this before, but honestly I probably did. I hurt for parents that have sick children, there really is nothing worse than seeing your child hurt, sick, or just fighting off a disease. I'm way more patient than I was and we all know that needed some work. I sympathize with others that have health issues because not only does that affect your 'health' but your state of mind as well. It is so hard to not worry about a sick relative or friend and really wears you down as well.
Tonight I am thankful. Thankful for our friends as family that have prayed so hard for us the past six weeks. I'm thankful for those of you we don't personally know but you still prayed-that is the best gift we could have ever received from you!
Tonight I am at peace. My heart doesn't hurt for my son. I really know everything will be okay now.
Tonight I am smiling and can't help it.
Tonight I will sleep well!
Tuesday, August 12, 2014
Saturday, August 2, 2014
PETECHIAE POP UP...
The boys have had jam packed days since Jake's last doctor appointment. Jake has had VBS and Jaden was at football camp. Both had a blast and were excited to be out doing things with other kids. Yesterday Jake slept in until 10:45. He's been sleeping a lot longer in the mornings and I'm not sure if he's just catching up on sleep or what. I'll admit, it's been nice. I get that extra time with Jaden in the mornings and it's so quiet! Once Jake got up yesterday we we home bodies and the boys just played outside most of the day. Later in the day, they had a friend come over and they all swam. Today my life group from church had a pool party. It sure has been nice doing regular summer things! The boys swam for about 4 hours at the party and ran and ran. Towards the end of the party I went over to Jake and noticed that a small patch of petechiae had popped up. My stomach just felt nauseous immediately! The ONLY times that he has had petechiae, his numbers came out super low! Of course my mind just went to the worst thing...why is this still going on? When will it end? Why, why, why!?! Jake had no idea and I didn't point it out to him. We have two full weeks of no doctors, no hospitals, no needles and I don't want him to hear me talk about any of it. I went back and sat by some of the girls and I just could not help these things from being in my head. The tears started again. As I sat there and watched my perfect little boy swim, jump, laugh, run....was this just a false alarm or had his body seriously started attacking his platelets again? And so soon?
John and I talked a little about Jake and the petechiae, but we can't just run and get a blood test every time a little thing pops up. I mean, we could because Dr. Kane put in an order for us to be able to, but it's not fair to Jake. Even if we did that, we would get the results and then what? Keep him on meds the rest of his life or stress about every fall? His body has to learn to no attack his own platelets and we need to give it time. As of right now, we are in the mind set that as long as Jake is running around with little to no bruises, his number should be high enough. If he gets full of petechiae or bruises or gets real tired, then those are all signs that his levels are probably below a safe level and we would take him in. So, just a small patch of petechiae, yes it brought up emotions for me, but nothing to take action over.
All four of us went swimming again tonight and while there, Jake tripped and fell getting out of the pool. He cried and cried! He scraped the tops of his feet (I guess he just missed the step) and fell and hit his mouth. His lip was bleeding inside but his teeth were good. He scraped his chin a little but nothing serious. I sat with him a short while to stop the bleeding in his lip and it finally did. Poor guy just can't catch a break! Shortly after that we went back home and called it a night. The boys are watching a movie with John and excited to stay up late. I just pray every night that this whole ordeal is over and we are on the up side of things. It's so hard to tell Jake he can't do things that he should be allowed to do without even thinking twice about them. I know I will feel much better after the next appointment if his count is still high since there is a possibility he ONLY had a good number because of the steroids. I'm really impressed with how good he looks though. He literally has one bruise on him!! Even before all this, he would have lots of bruises but they were 'normal' and in 'normal places'. So, to have one is excellent! For now, we will still be excited about Jake's last report and pray for the best.
John and I talked a little about Jake and the petechiae, but we can't just run and get a blood test every time a little thing pops up. I mean, we could because Dr. Kane put in an order for us to be able to, but it's not fair to Jake. Even if we did that, we would get the results and then what? Keep him on meds the rest of his life or stress about every fall? His body has to learn to no attack his own platelets and we need to give it time. As of right now, we are in the mind set that as long as Jake is running around with little to no bruises, his number should be high enough. If he gets full of petechiae or bruises or gets real tired, then those are all signs that his levels are probably below a safe level and we would take him in. So, just a small patch of petechiae, yes it brought up emotions for me, but nothing to take action over.
All four of us went swimming again tonight and while there, Jake tripped and fell getting out of the pool. He cried and cried! He scraped the tops of his feet (I guess he just missed the step) and fell and hit his mouth. His lip was bleeding inside but his teeth were good. He scraped his chin a little but nothing serious. I sat with him a short while to stop the bleeding in his lip and it finally did. Poor guy just can't catch a break! Shortly after that we went back home and called it a night. The boys are watching a movie with John and excited to stay up late. I just pray every night that this whole ordeal is over and we are on the up side of things. It's so hard to tell Jake he can't do things that he should be allowed to do without even thinking twice about them. I know I will feel much better after the next appointment if his count is still high since there is a possibility he ONLY had a good number because of the steroids. I'm really impressed with how good he looks though. He literally has one bruise on him!! Even before all this, he would have lots of bruises but they were 'normal' and in 'normal places'. So, to have one is excellent! For now, we will still be excited about Jake's last report and pray for the best.
Wednesday, July 30, 2014
THE BIG DAY
We got up this morning and headed to my parents to drop Jaden off. Then we continued to Temple for our appointment. Jake was excited when we arrived because he remembered the playroom and nice nurses but he was still a little unsure about it all. The lady checked us in and we were called back soon afterwards. Once we were in the room, I asked the nurse about the numbing cream to help Jake since he had been poked so many times recently. He has never cried but really how fun can that be even if it doesn't hurt you? They did have it but said it takes about 30-40 minutes to get completely numb. We were really hoping for a fast visit so elected to not use it. Instead they were going to poke his finger instead. We weren't sure if they would get enough blood but with his test they only needed a small amount. A different nurse came in with a heating pack for his finger then started to get everything ready. She poked Jake right in the middle of talking to him so he had no time to pull back. He just said, "Hey that didn't hurt!" Surely enough, Jake was able to fill the whole little vial with blood and she wasn't even squeezing his finger! This made me a little nervous that it was so easy to come out. They had to put extra gauze with the band-aide as it was still bleeding.
When Jake was done, he went to pick out a prize....of course he asked for a prize for his brother as well. Then they gave him extra stuff for being so "brave and cute". They were offering him food, snacks, toys, everything....they really do love our boy there! The nurse that did his blood work today called Jake over to send the blood to the lab. They have a system that reminded me of the one at the banks, where you watch the tube go up and over to the ladies in the bank from the drive thru. Anyways, Jake got to push the buttons and send it off. He was so excited to be helping.
Jake and I headed down to the play room since I knew it would be a little wait. After a short while, Dr. Kane came in and got us. I was nervous to see him but excited at the same time. We had been praying for a good visit and high numbers and I really wanted to believe it would happen. There was just a part of me holding on to the fact that I could see a low number again-below 30-since I had already heard 6 of them! He asked if we had any guesses on what the numbers were. My immediate response was "Nope...what are they." He asked again for us to guess. Up to this point, I really liked him and respected him but if he was making me play this silly game and it was a low number, I would not like him anymore!! John guessed 50. I said, I wanted over 150 but it had only been a week so I was skeptical. Then he pulled it up on the screen and it was 194. I looked again and again, 194!! I looked at Dr. Kane and he had the biggest smile as well. "We did it! Jake responded well to the steroids and now he is in the normal range." Oh my God! I could not believe my ears or eyes!! Hallelujah!
Jake got on the table and Dr. Kane did his exam as he does every week. I was so excited and just kept looking and John telling him I couldn't believe they were so high! Ugh, we were finally able to take a breath and breathe!
Now we just have to monitor him. If Jake seems like he has more bruises than normal, darker ones, or bruises in places that should be bruising, I will take him in to get lab work done. We already have lab orders done (one of the reasons we love this doctor) and he will leave that up to my discretion. We also will have to look for the petechiae to come back as that seems to be one of the main indicators that Jake is low with platelets. Other than that, John will take him back to do more lab work in 2 weeks, on August 12th which is my first day back to work. If the lab results come back higher, we get to wait another 2 weeks. If they come back lower, we have our appointment set for August 13th in Killeen.
Clearly we hope that the next two weeks are good and healthy for us. We pray for more good numbers August 12th and that we can cancel our appointment on the 13th. From here on out we will go every 2-4 weeks for a while to monitor his numbers. As long as they stay in that normal (150-400) range then we are good and will stop seeing Dr. Kane after 6 months or so. We pray this was the solution and the steroids were able to get Jake's body back on track. I asked if there was anything Jake could not do at this point...short answer=No. He can do what he wants (with caution of course)!! :)
When Jake was done, he went to pick out a prize....of course he asked for a prize for his brother as well. Then they gave him extra stuff for being so "brave and cute". They were offering him food, snacks, toys, everything....they really do love our boy there! The nurse that did his blood work today called Jake over to send the blood to the lab. They have a system that reminded me of the one at the banks, where you watch the tube go up and over to the ladies in the bank from the drive thru. Anyways, Jake got to push the buttons and send it off. He was so excited to be helping.
Jake and I headed down to the play room since I knew it would be a little wait. After a short while, Dr. Kane came in and got us. I was nervous to see him but excited at the same time. We had been praying for a good visit and high numbers and I really wanted to believe it would happen. There was just a part of me holding on to the fact that I could see a low number again-below 30-since I had already heard 6 of them! He asked if we had any guesses on what the numbers were. My immediate response was "Nope...what are they." He asked again for us to guess. Up to this point, I really liked him and respected him but if he was making me play this silly game and it was a low number, I would not like him anymore!! John guessed 50. I said, I wanted over 150 but it had only been a week so I was skeptical. Then he pulled it up on the screen and it was 194. I looked again and again, 194!! I looked at Dr. Kane and he had the biggest smile as well. "We did it! Jake responded well to the steroids and now he is in the normal range." Oh my God! I could not believe my ears or eyes!! Hallelujah!
Jake got on the table and Dr. Kane did his exam as he does every week. I was so excited and just kept looking and John telling him I couldn't believe they were so high! Ugh, we were finally able to take a breath and breathe!
Now we just have to monitor him. If Jake seems like he has more bruises than normal, darker ones, or bruises in places that should be bruising, I will take him in to get lab work done. We already have lab orders done (one of the reasons we love this doctor) and he will leave that up to my discretion. We also will have to look for the petechiae to come back as that seems to be one of the main indicators that Jake is low with platelets. Other than that, John will take him back to do more lab work in 2 weeks, on August 12th which is my first day back to work. If the lab results come back higher, we get to wait another 2 weeks. If they come back lower, we have our appointment set for August 13th in Killeen.
Clearly we hope that the next two weeks are good and healthy for us. We pray for more good numbers August 12th and that we can cancel our appointment on the 13th. From here on out we will go every 2-4 weeks for a while to monitor his numbers. As long as they stay in that normal (150-400) range then we are good and will stop seeing Dr. Kane after 6 months or so. We pray this was the solution and the steroids were able to get Jake's body back on track. I asked if there was anything Jake could not do at this point...short answer=No. He can do what he wants (with caution of course)!! :)
Tuesday, July 29, 2014
JULY 29TH
For those of you that have read from the beginning, this is now the 13th post and I'm FINALLY caught up and in real time! I'm sure the previous ones are crazy to read with past/present tenses and all but I'll fix that later. As for now, we are getting ready to go see Dr. Kane again in the morning.
We have a bag packed for the worst case that Jake has to be admitted again, Jaden has all his stuff to stay with my parents for the night if needed and the boys are in bed. Of course we want a good report, a high platelet count and to come home early tomorrow but it doesn't hurt to be prepared. People have asked me what's next or what happens with Jake....I don't know. All I know is that we will go back to Temple tomorrow and do more blood work. Since we will be at the hospital, we will get the results back rather quickly. Once we know his results we will learn what is happening next. I don't know what we will do if they are low. I don't know what we will do if they are high. I just don't know.
I do know that we have prayed and prayed for a high platelet count! I am hopeful that his numbers are higher, but then again I was sure they would be higher than 25 last Wednesday and they weren't. I don't see how they can still be low after 5 days of steroids though! I'm afraid to be too hopeful because of the let down when we hear a low number. It's crushing, heart wrenching and infuriating all in one. Honestly, it's nauseating to sit here and think about right now. So, enough on thinking about that....
The other thing I worry about if they are high is that he will be steroid-dependent. We will go over that more with Dr. Kane in the next couple visits especially if he does have more doses of steroids. This basically would mean that his body is dependent on the steroids to keep a normal platelet count which we would not want. His body has to learn to do this on its own again.
As I sit here getting ready for bed, I just can't help but ask myself that one word question again...."Why?" Why did this even happen to begin with? What happened inside of him that got his system so out of whack and turned his body against his platelets? Will it ever go back to normal?!?
I can only pray it will. I have to remind myself that God knows why, God knows when and God will lead us in the right direction to get Jake the help that he needs. I thank God every night that even through all this worry I have, Jake doesn't even really know he is 'sick'. He heard us talk about it at first but I have made a very conscious effort to not say key things around him if I even have to talk about it. I just say things like "We are going back to the doctor or hospital for a checkup." I don't want him to think of himself as being any different or to have a label put on him.
If you saw Jake today, he looked great! He had very minimal bruising, and the ones he did have were only on his legs. He has no petechiae, no fever, nothing. He looks like every other healthy, four-year old child out there. For this I am grateful and thankful!
Thank you again to those that are calling/texting/messaging us to stay updated. You are not bothering us at all. If we are busy-we just won't answer right then. :) Starting this blog really has helped me in so many ways and I've heard from some of you that are personally touched by this. It brings a smile to my face to think about. I know some think this is such a minor thing and "it's only one small number" but to them I would just pray for understanding and not judgement on how we are responding to this. Jake's 'one small number' could drop at an instant and if it gets as low as it was, the unimaginable could happen in the blink of an eye. None of us would want that! We will continue to blog and update all of you as things happen and hopefully tomorrow will be the start of only good blogs showing the miracles that only God can perform! Goodnight, say a prayer for Jake, and God bless!
~Stephanie
We have a bag packed for the worst case that Jake has to be admitted again, Jaden has all his stuff to stay with my parents for the night if needed and the boys are in bed. Of course we want a good report, a high platelet count and to come home early tomorrow but it doesn't hurt to be prepared. People have asked me what's next or what happens with Jake....I don't know. All I know is that we will go back to Temple tomorrow and do more blood work. Since we will be at the hospital, we will get the results back rather quickly. Once we know his results we will learn what is happening next. I don't know what we will do if they are low. I don't know what we will do if they are high. I just don't know.
I do know that we have prayed and prayed for a high platelet count! I am hopeful that his numbers are higher, but then again I was sure they would be higher than 25 last Wednesday and they weren't. I don't see how they can still be low after 5 days of steroids though! I'm afraid to be too hopeful because of the let down when we hear a low number. It's crushing, heart wrenching and infuriating all in one. Honestly, it's nauseating to sit here and think about right now. So, enough on thinking about that....
The other thing I worry about if they are high is that he will be steroid-dependent. We will go over that more with Dr. Kane in the next couple visits especially if he does have more doses of steroids. This basically would mean that his body is dependent on the steroids to keep a normal platelet count which we would not want. His body has to learn to do this on its own again.
As I sit here getting ready for bed, I just can't help but ask myself that one word question again...."Why?" Why did this even happen to begin with? What happened inside of him that got his system so out of whack and turned his body against his platelets? Will it ever go back to normal?!?
I can only pray it will. I have to remind myself that God knows why, God knows when and God will lead us in the right direction to get Jake the help that he needs. I thank God every night that even through all this worry I have, Jake doesn't even really know he is 'sick'. He heard us talk about it at first but I have made a very conscious effort to not say key things around him if I even have to talk about it. I just say things like "We are going back to the doctor or hospital for a checkup." I don't want him to think of himself as being any different or to have a label put on him.
If you saw Jake today, he looked great! He had very minimal bruising, and the ones he did have were only on his legs. He has no petechiae, no fever, nothing. He looks like every other healthy, four-year old child out there. For this I am grateful and thankful!
Thank you again to those that are calling/texting/messaging us to stay updated. You are not bothering us at all. If we are busy-we just won't answer right then. :) Starting this blog really has helped me in so many ways and I've heard from some of you that are personally touched by this. It brings a smile to my face to think about. I know some think this is such a minor thing and "it's only one small number" but to them I would just pray for understanding and not judgement on how we are responding to this. Jake's 'one small number' could drop at an instant and if it gets as low as it was, the unimaginable could happen in the blink of an eye. None of us would want that! We will continue to blog and update all of you as things happen and hopefully tomorrow will be the start of only good blogs showing the miracles that only God can perform! Goodnight, say a prayer for Jake, and God bless!
~Stephanie
STEROIDS
We started steroids Thursday the 24th. We had to give Jake a dose in the morning and one at night. All in all it went pretty well. He was rather hyped up Saturday but we went out for the day and had three birthday parties to go to, so I was sure he would get worn out. We barely made it through the first one and Jake passed out in the car back to Lampasas. He missed the next one but was able to get caught up on sleep. Monday was the last dose and he had the hardest time going to sleep. He was still awake at 2 or 2:30 AM!! I even had him lay with me to try and go to sleep but he just moved, tossed and turned and just could not stay still. He was not tired at all so I let him just play in his play room. I wasn't sure if it had anything to do with the steroids or not but I was glad we were done with them. I'm not big on any of us taking medicine. I'm not against it by any means but I hate when any of us are in a position where we have to take medicine.
Monday I called a sweet lady that also has a son with ITP. She had contacted me while I was in the hospital and we had text off and on throughout the weeks, but I finally was able to call her. I tried a couple of other times, but I would get nervous or just emotional. I'm not sure why since I didn't even know her, but maybe I didn't want to hear bad things? Anyways, I called her and it turns out our kids were at the same VBS in town! We were able to meet up while we picked up the kids and talk for a short while. Her son had never met anyone with ITP so it was so sweet when she introduced her son to Jake. Even though both of us obviously don't want anything wrong with our boys, it was comforting to know someone local who had already been through the things we are currently going through. Apparently, there is nobody even close in location to us with this blood disorder. :(
Monday I called a sweet lady that also has a son with ITP. She had contacted me while I was in the hospital and we had text off and on throughout the weeks, but I finally was able to call her. I tried a couple of other times, but I would get nervous or just emotional. I'm not sure why since I didn't even know her, but maybe I didn't want to hear bad things? Anyways, I called her and it turns out our kids were at the same VBS in town! We were able to meet up while we picked up the kids and talk for a short while. Her son had never met anyone with ITP so it was so sweet when she introduced her son to Jake. Even though both of us obviously don't want anything wrong with our boys, it was comforting to know someone local who had already been through the things we are currently going through. Apparently, there is nobody even close in location to us with this blood disorder. :(
Monday, July 28, 2014
CHECK UP
July 23, 2014
We were scheduled to see Dr. Kane at 11 this day. We just have to go to Killeen which is about 35 minutes away rather than the hour drive to Temple. He is at a clinic there every other Wednesday. It has been about 12 days since Jake has been stuck with a needle. I took both boys over with me and John left work to meet us there. We walked in and Jake smiled when he saw the same nurse from the Temple office-not the bald one, but still a familiar face. Jake, Jaden and I went back and did all the vitals, everything looked good. Jake felt good. The only thing was the petechiae came back on his chest. It wasn't nearly as bad or noticeable as the first time back on July 4th, but it was there. I had updated facebook and people were sending messages that he was going to have good numbers and everything would be fine. I just didn't feel that. I knew they would be low but a little part of me believed them and I wanted the highest numbers we could have.
The last time we had blood work done, Jake's platelet count was at 39 (really 39,000) and normal range is 150-400 (150,000-400,000). In my head I was telling myself I would be okay with 50. I felt that was reasonable, it had been two weeks since the IVIG treatment and we were told his body would continue to improve.
John got there and met us in the room. Dr. Kane then came in with a medical student and we all discussed Jake. Jaden was in the room and hearing all this as well as Jake. Dr. Kane was really happy with how good Jake looked. He was full of energy, moving around fine, tan from being outside and only had a couple of concerning bruises. He had plenty on his legs, but nothing alarming. He noticed the petechiae as well. We talked about what could happen, what we would do in certain situations and then we were done. John and I felt relieved after speaking to him just as we did back on July 9th. Dr. Kane really seems to know what he is talking about and has a plan of action. He takes his time with us, and really interacts with Jake. He told us that he would call us later that day or even the next morning with results. Since we were at the clinic, he wouldn't get the results as quickly as he had in Temple. I should have remembered this with our encounter in Lampasas.
John took Jake to the second floor to do the blood work and Jaden and I stayed and finished talking to Dr. Kane. I asked him if I could go back and see results from Jake's labs before and see his platelet counts. Referring to just normal visits and well check ups. He said it wouldn't be there since the platelet count is not something that is ordered for a routine check up. So with that comes the question, what is Jake's normal platelet count? Was it ever in the 150-400 range to begin with. What if Jake was only ever at 100 in his whole life? That's the unknown.
After talking with Dr. Kane and doing the blood work, we left the clinic and waited for his call. We were left with 3 possibilities:
1. Jake's platelet count would be high, we would monitor over the next couple of months and it would stay high....this would be over.
2. Jake's platelet count would increase but not to a normal level....but it would be constant and normal for him to where we all felt he was safe. He would be monitored but no treatment would be needed.
3. Jake's platelet count would be low, we would see if treatment was needed and we would monitor more closely. With this one, it might be low some weeks, then high, then low again and just all over the place.
Obviously we were praying for option 1!!
We went home, swam at our friend's house to get our minds off of things and I kept the phone with me. Nothing at all. 4 o'clock-no call. 5 o'clock-no call. My dad had called and I told him I guess it will just be morning when we find out because it's already 5 and I knew Dr. Kane had to go back to Temple that night.
At 6:30 I took the boys to VBS. Still hadn't heard anything and just assumed it would be the next morning.
8:00 comes and my phone rings. It said No Caller ID. I answered and it was Dr. Kane. This could not be good. What doctor calls a patient at 8 pm?!?! ugh, there is that feeling in my stomach again. He said that Jake's platelet count came back and it was low again. 25. I just said, "Okay." I felt defeated, sad, angry, mad....we had done the IV treatment will only positive thoughts and KNEW it would work for Jake. Dr. Kane said if Jake would have responded well to the treatment, he could be at or around 400 with it being 2 weeks later. This was a huge let down. So now we had three more options.
1. Wait a week, go to Temple to do blood work at the hospital, get the results and possible do the IVIG treatment again. This time we would do it slower and monitor him longer since he had such bad side effects the last time.
2. Wait a week, go to Temple to do blood work at the hospital, get the results and start a 5 day steroid treatment. This would be able to be done at home, takes a little longer for the treatment but doesn't have many side effects like the other.
3. Go ahead and start the 5 day steroid treatment the next day, then go to Temple next Wednesday, do blood work and see where we are after the steroids.
I didn't want to wait, I feel that is just wasted time and frankly, I want this whole thing to be done! So, we elected for the steroid treatment at home starting the next day and will go back to the doctor Wednesday.
I hung up with him and told John what Jake's platelet count was. As soon as '25' came out of my mouth, here came the tears again. It is the most miserable thing in the world to do what you think is best for you child, see them in pain, and still no good outcome. Why did his body not respond well to the treatment? Why are we doing this at all? What do we do next? All these questions come back and I feel we are at square one again. It's frustrating, nauseating, tiring all at the same time. I text my mom but couldn't even talk to her on the phone. John spoke with my parents until I could call them back later that night. He also had to go pick up the boys from VBS right after that. I was done for the night!
We were scheduled to see Dr. Kane at 11 this day. We just have to go to Killeen which is about 35 minutes away rather than the hour drive to Temple. He is at a clinic there every other Wednesday. It has been about 12 days since Jake has been stuck with a needle. I took both boys over with me and John left work to meet us there. We walked in and Jake smiled when he saw the same nurse from the Temple office-not the bald one, but still a familiar face. Jake, Jaden and I went back and did all the vitals, everything looked good. Jake felt good. The only thing was the petechiae came back on his chest. It wasn't nearly as bad or noticeable as the first time back on July 4th, but it was there. I had updated facebook and people were sending messages that he was going to have good numbers and everything would be fine. I just didn't feel that. I knew they would be low but a little part of me believed them and I wanted the highest numbers we could have.
The last time we had blood work done, Jake's platelet count was at 39 (really 39,000) and normal range is 150-400 (150,000-400,000). In my head I was telling myself I would be okay with 50. I felt that was reasonable, it had been two weeks since the IVIG treatment and we were told his body would continue to improve.
John got there and met us in the room. Dr. Kane then came in with a medical student and we all discussed Jake. Jaden was in the room and hearing all this as well as Jake. Dr. Kane was really happy with how good Jake looked. He was full of energy, moving around fine, tan from being outside and only had a couple of concerning bruises. He had plenty on his legs, but nothing alarming. He noticed the petechiae as well. We talked about what could happen, what we would do in certain situations and then we were done. John and I felt relieved after speaking to him just as we did back on July 9th. Dr. Kane really seems to know what he is talking about and has a plan of action. He takes his time with us, and really interacts with Jake. He told us that he would call us later that day or even the next morning with results. Since we were at the clinic, he wouldn't get the results as quickly as he had in Temple. I should have remembered this with our encounter in Lampasas.
John took Jake to the second floor to do the blood work and Jaden and I stayed and finished talking to Dr. Kane. I asked him if I could go back and see results from Jake's labs before and see his platelet counts. Referring to just normal visits and well check ups. He said it wouldn't be there since the platelet count is not something that is ordered for a routine check up. So with that comes the question, what is Jake's normal platelet count? Was it ever in the 150-400 range to begin with. What if Jake was only ever at 100 in his whole life? That's the unknown.
After talking with Dr. Kane and doing the blood work, we left the clinic and waited for his call. We were left with 3 possibilities:
1. Jake's platelet count would be high, we would monitor over the next couple of months and it would stay high....this would be over.
2. Jake's platelet count would increase but not to a normal level....but it would be constant and normal for him to where we all felt he was safe. He would be monitored but no treatment would be needed.
3. Jake's platelet count would be low, we would see if treatment was needed and we would monitor more closely. With this one, it might be low some weeks, then high, then low again and just all over the place.
Obviously we were praying for option 1!!
We went home, swam at our friend's house to get our minds off of things and I kept the phone with me. Nothing at all. 4 o'clock-no call. 5 o'clock-no call. My dad had called and I told him I guess it will just be morning when we find out because it's already 5 and I knew Dr. Kane had to go back to Temple that night.
At 6:30 I took the boys to VBS. Still hadn't heard anything and just assumed it would be the next morning.
8:00 comes and my phone rings. It said No Caller ID. I answered and it was Dr. Kane. This could not be good. What doctor calls a patient at 8 pm?!?! ugh, there is that feeling in my stomach again. He said that Jake's platelet count came back and it was low again. 25. I just said, "Okay." I felt defeated, sad, angry, mad....we had done the IV treatment will only positive thoughts and KNEW it would work for Jake. Dr. Kane said if Jake would have responded well to the treatment, he could be at or around 400 with it being 2 weeks later. This was a huge let down. So now we had three more options.
1. Wait a week, go to Temple to do blood work at the hospital, get the results and possible do the IVIG treatment again. This time we would do it slower and monitor him longer since he had such bad side effects the last time.
2. Wait a week, go to Temple to do blood work at the hospital, get the results and start a 5 day steroid treatment. This would be able to be done at home, takes a little longer for the treatment but doesn't have many side effects like the other.
3. Go ahead and start the 5 day steroid treatment the next day, then go to Temple next Wednesday, do blood work and see where we are after the steroids.
I didn't want to wait, I feel that is just wasted time and frankly, I want this whole thing to be done! So, we elected for the steroid treatment at home starting the next day and will go back to the doctor Wednesday.
I hung up with him and told John what Jake's platelet count was. As soon as '25' came out of my mouth, here came the tears again. It is the most miserable thing in the world to do what you think is best for you child, see them in pain, and still no good outcome. Why did his body not respond well to the treatment? Why are we doing this at all? What do we do next? All these questions come back and I feel we are at square one again. It's frustrating, nauseating, tiring all at the same time. I text my mom but couldn't even talk to her on the phone. John spoke with my parents until I could call them back later that night. He also had to go pick up the boys from VBS right after that. I was done for the night!
GOT A WHAT IN HIS FOOT?!?
July 22, 2014
It's been pretty calm since the last update. I was able to start working in my new classroom since the floors were done. I got a job for the next year in town. Still teaching fourth grade, but no more driving, I'll be right up the road from my house and I'll teach at Jaden's school. It is much easier to go work in your room for just a little while at a time instead of planning the whole day (and more than on at that) like I had to when I worked in Copperas Cove.
Jackie came over to help me in my room and just to have someone to talk to while I was working. We were not at school for 30 minutes when John called. "I might have to take Jake to the ER."
"What?!? Why? What do you mean might?"
"He got a hook stuck in his foot."
I hung up and Jackie and I headed out. Another nice thing about being 2 minutes away :)
We got home and John was sitting outside with Jake. Jake holds up his foot, "Look mom! I got a hook in my toe! That's silly!!"
I swear....this boy! If it isn't one thing it's another. If it is going to happen, it will happen to Jake. So to answer questions:
1. No, he wasn't really fishing.
2. Yes, John was watching him.
3. No, he wasn't crying with this either.
4. Jake had dumped out his tackle box prior to this and he has carpet in his room. Even though we thought everything was picked up, apparently this hook was missed. He got it just by walking in his room barefoot!
Jackie started working to get the hook out. I called his doctor to see what to do. I hated to go to the ER with all the other stuff going on if we didn't need to. Turns out we just had to use wire cutters to clip one end of the hook and pull it out backwards. John had just started that but it was relieving to hear someone else say to do that as well. So, out came the hook and Jake ran off to play! Oh, and no need for a tetanus shot since he just had his four year shots a couple months before.
Here is a picture of the hook in his toe....it's the only one John took but from the other side you could see how deep it was in there.
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