We just got it all confirmed and ready to go on Thursday...We are headed down to Rochester for a round of neurology appointments, and procedures tomorrow afternoon. We are going to try and beat the BLIZZARD warnings and leave after school as of right now. We might have to leave a little earlier if the weather starts misbehaving and moving in earlier. We just seem to always attract the weather one way or the other, but at least this time Jeremy is going with and will be driving :)
Jaxon has an early start on Tuesday morning with an EEG @ 7:15am. He has to go to bed late and wake up early, so he is good and tired. Then at 10am we meet with his neurologist, lastly we have his spinal tap at 1pm. He will have to have this spinal tap without sedation, which won't be too fun but I know that he can do it! They want him to have the clearest reading and I guess that some of the sedation meds can interfere with the tap.
The next morning we meet with his neurologist again, to go over the test results and then we will be able to head home. So we are hoping to get home before the other 2 boys are done with school, but we will have to see how it goes.
This kinda came up out of the blue again, so I just haven't had time to get a post up. I took the day off of "Mom duty" yesterday and spent the day watching a HIT basketball game, hanging out with my mom, and having a wonderful cup of coffee,and long overdue chat with my cousin Ryan (next door to Mom and Dad's). It was good to just get away and not have to think about Rochester, or anything else for a few hours. Of course the boys face timed me a bunch of times, but that is always fun! They love to face time when I am gone, and I am SO thankful for that technology, especially when it comes to Jonah...he always gets left behind and will talk for hours on face time :)
My Mom and Dad are going to come here and stay with the boys so that they can be in school, which is awesome! Hopefully they will be able to get back and forth for work with this weather!
Again, THANKS to ALL of you who have been thinking and praying for us and Jaxon, it means the world to us! I will post when I can as the day goes on...
Sunday, March 30, 2014
Thursday, March 20, 2014
Another LATE update...
I am really bad at getting these posts up in a timely fashion aren't I? The trip to Rochester takes a lot more outta me than I think while I'm there. I get back and just kinda shut down, but it was delayed a little this time because Jonah had his last basketball tourney in Elbow Lake the morning we after we got back. They won the Championship!! Ending their season with only 1 loss, they played good each weekend! It was fun to watch :)
We also went to Nathan and Amber's on Saturday evening for a couple of hours, then Sunday we went to Kevin and Judi's for a wonderful turkey (with all the trimmings) dinner to celebrate Jonah's birthday. It was an awesome meal!!
Monday and Tuesday both Jax and I really relaxed, and didn't do a whole lot, napped and just rested, which what we both needed!
On to our trip...
We had a great drive down with NO snow, rain, ice or tornado's which RARELY happens! We went to bed pretty early on Thursday night because we had to be up and out of the hotel by 7am. Jaxon's first appointment was called an Adrenal Stem test. They put an IV in and drew blood, then put something in which stresses his adrenals to see if they produce cortisol, which is something his body needs to be able to fight off infection. We got his results later when we met with his endocrinologist Dr. Lteif. She said he didn't pass the test, and his adrenals are indeed suppressed. Now that wasn't a surprise for either of us but it is helpful to know so that we can help them along, and make sure that he doesn't have an adrenal attack that could be fatal! So the plan of action on that front is to give him a daily dose of hydrocortisone, which will help his adrenals along without affecting his growth, or increasing his inter cranial pressure (which steroids can do).
The next thing he had after his adrenal stem test was his MRI-with MRV. He had to wait quite awhile to get into this one, but once it started he was done in no time. And once he got out we raced to Dr. Mason's appointment because we were late!
Dr. Mason's ( his rhuematologist) was the longest one of the day. He told us the results of the MRI...there is NO CLOTTING going on inside Jaxon's head! That was great to hear, but there is still evidence of increased pressure. Because his neurologist was gone that day we didn't figure anything else out on that front. But as far as his Still's disease we decided that we are going to make kinda a bold move here in the next 2 months that neither his doctor, Jer or I are very happy about. We are not going to give him his next 2 infusions (his March or April ones). Neurology and endocrinology are really pushing the idea that his Actemra (monthly infusions that he takes for his Still's) is the issue for his increased pressure. Dr. Mason, Jeremy and I really are almost 100% sure that this is not the case, but we need to make sure that it isn't, and his increased pressure is the most concerning issue at the moment.
I am afraid that he is going to be in a lot of pain, maybe not this week (since he is due today for his infusion), but probably this coming week, and continuing. I just don't want the fever and rash, along with the pain to come back. We know that even though his blood has been showing well, there is still smoke smoldering there (he still is in pain, especially in his hips, knees and ankles), he has had to get direct cortisone shots to his bad areas even with the infusion. There isn't going to be much we can do for his pain, other than ibuprofen, hot and cold packs, and rest. We will be going down for sure in early May to see what to do as far as his Still's disease goes. So that is it on his Still's (systemic JIA) front....
As far as his increased pressure goes we are waiting on neurology to see how they want to proceed. I am assuming that we would be going down to Rochester for a spinal tap and EEG soon, especially since we will be off the Actemra now. But it seems to take a very long time to get anywhere with them!
I will try to keep this up to date better as I know anything! But for now, no news means we are just sitting here waiting and watching, trying to find ways to live this new normal for Jax and all of us which is hard. We are so blessed to have lots of family and friends who are supporting us with prayers!!
Monday and Tuesday both Jax and I really relaxed, and didn't do a whole lot, napped and just rested, which what we both needed!
On to our trip...
We had a great drive down with NO snow, rain, ice or tornado's which RARELY happens! We went to bed pretty early on Thursday night because we had to be up and out of the hotel by 7am. Jaxon's first appointment was called an Adrenal Stem test. They put an IV in and drew blood, then put something in which stresses his adrenals to see if they produce cortisol, which is something his body needs to be able to fight off infection. We got his results later when we met with his endocrinologist Dr. Lteif. She said he didn't pass the test, and his adrenals are indeed suppressed. Now that wasn't a surprise for either of us but it is helpful to know so that we can help them along, and make sure that he doesn't have an adrenal attack that could be fatal! So the plan of action on that front is to give him a daily dose of hydrocortisone, which will help his adrenals along without affecting his growth, or increasing his inter cranial pressure (which steroids can do).
The next thing he had after his adrenal stem test was his MRI-with MRV. He had to wait quite awhile to get into this one, but once it started he was done in no time. And once he got out we raced to Dr. Mason's appointment because we were late!
Dr. Mason's ( his rhuematologist) was the longest one of the day. He told us the results of the MRI...there is NO CLOTTING going on inside Jaxon's head! That was great to hear, but there is still evidence of increased pressure. Because his neurologist was gone that day we didn't figure anything else out on that front. But as far as his Still's disease we decided that we are going to make kinda a bold move here in the next 2 months that neither his doctor, Jer or I are very happy about. We are not going to give him his next 2 infusions (his March or April ones). Neurology and endocrinology are really pushing the idea that his Actemra (monthly infusions that he takes for his Still's) is the issue for his increased pressure. Dr. Mason, Jeremy and I really are almost 100% sure that this is not the case, but we need to make sure that it isn't, and his increased pressure is the most concerning issue at the moment.
I am afraid that he is going to be in a lot of pain, maybe not this week (since he is due today for his infusion), but probably this coming week, and continuing. I just don't want the fever and rash, along with the pain to come back. We know that even though his blood has been showing well, there is still smoke smoldering there (he still is in pain, especially in his hips, knees and ankles), he has had to get direct cortisone shots to his bad areas even with the infusion. There isn't going to be much we can do for his pain, other than ibuprofen, hot and cold packs, and rest. We will be going down for sure in early May to see what to do as far as his Still's disease goes. So that is it on his Still's (systemic JIA) front....
As far as his increased pressure goes we are waiting on neurology to see how they want to proceed. I am assuming that we would be going down to Rochester for a spinal tap and EEG soon, especially since we will be off the Actemra now. But it seems to take a very long time to get anywhere with them!
I will try to keep this up to date better as I know anything! But for now, no news means we are just sitting here waiting and watching, trying to find ways to live this new normal for Jax and all of us which is hard. We are so blessed to have lots of family and friends who are supporting us with prayers!!
Some fun to share in the middle of all the medical ick!
This is about 3 1/2 weeks late, but I wanted to post these pictures because it has been the highlight of the last month or so :)
Arthur Donald Holmburg was born on Feb. 25th at 3pm, and boy is he cute!! Jaxon, Judi and I went up the next day to meet him, then the next weekend the rest of our family got to meet him. It is fun to see Brittney as a mother, she is wonderful at it already (but I knew that already :)
Arthur Donald Holmburg was born on Feb. 25th at 3pm, and boy is he cute!! Jaxon, Judi and I went up the next day to meet him, then the next weekend the rest of our family got to meet him. It is fun to see Brittney as a mother, she is wonderful at it already (but I knew that already :)
Wednesday, March 12, 2014
A change of plans
Well after being on the phone with Mayo clinic most of this morning and afternoon, we have a plan of action at least for this week!
Jaxon, my Mom, and I will be headed down to Rochester tomorrow sometime to be ready for appointments all day on Friday the 14th. His neurologist called this morning before her vacation, to see what has been happening, and had some ideas of what we are going to do next. She had the radiologist check Jax's MRI scans from January, and once again they were surprised that his inter-cranial pressure had been so high at the time of his spinal tap. She is concerned about a blood clot in one of the veins or vessels in his brain, and wants a different MRI done called and MRI with MV (not super sure what that means), from what I have read it shows more of the veins and the flow of blood (with a contrast) thru them. That way they can tell for sure if there is a clot anywhere. If there is a clot, I guess I am not certain of this, but would assume that he would be hospitalized, given medications, and monitored to see if this would help. If there isn't a clot (which would be the better case) we would still not have a reason for his high CSF pressure and need to come down and do some more searching and testing. I think we would be shooting for the last week in March, and that would include having him get his infusion (his monthly Actemera, for his Stills disease) down there, have a spinal tap after that, along with an EEG (to see how his brain is doing). Hopefully also get his neuro-psych test done as well! Then we will go from there...
But back to Friday, Jaxon will also have his adrenal testing done in the morning, then his MRI, then meet with his endocrinologist and rheumatologist. They will be able to look at his MRI scans and let us know how they turned out (since his neurologist won't be there), but if there is a clot I am sure there is another neurologist that will be able to help us out and know what to do next. At least we will be there, and getting one possibility answered!
We will be heading home after his last appointment because Jonah has his last 4th grade basketball tourney the next morning, and he DOES NOT want me to miss it! It is always really hard for Jonah when anybody leaves, he just doesn't like us going anywhere (which is understandable!), but hopefully this will be better because both Jeremy and Hayden will be here and we won't be gone but for a day (hopefully!!).
That is all for now, I will try and update as the day goes on Friday, but because it is so busy I might not get to it until Saturday :)
Thanks again for all the continued support, encouragement and prayers!!
Jaxon, my Mom, and I will be headed down to Rochester tomorrow sometime to be ready for appointments all day on Friday the 14th. His neurologist called this morning before her vacation, to see what has been happening, and had some ideas of what we are going to do next. She had the radiologist check Jax's MRI scans from January, and once again they were surprised that his inter-cranial pressure had been so high at the time of his spinal tap. She is concerned about a blood clot in one of the veins or vessels in his brain, and wants a different MRI done called and MRI with MV (not super sure what that means), from what I have read it shows more of the veins and the flow of blood (with a contrast) thru them. That way they can tell for sure if there is a clot anywhere. If there is a clot, I guess I am not certain of this, but would assume that he would be hospitalized, given medications, and monitored to see if this would help. If there isn't a clot (which would be the better case) we would still not have a reason for his high CSF pressure and need to come down and do some more searching and testing. I think we would be shooting for the last week in March, and that would include having him get his infusion (his monthly Actemera, for his Stills disease) down there, have a spinal tap after that, along with an EEG (to see how his brain is doing). Hopefully also get his neuro-psych test done as well! Then we will go from there...
But back to Friday, Jaxon will also have his adrenal testing done in the morning, then his MRI, then meet with his endocrinologist and rheumatologist. They will be able to look at his MRI scans and let us know how they turned out (since his neurologist won't be there), but if there is a clot I am sure there is another neurologist that will be able to help us out and know what to do next. At least we will be there, and getting one possibility answered!
We will be heading home after his last appointment because Jonah has his last 4th grade basketball tourney the next morning, and he DOES NOT want me to miss it! It is always really hard for Jonah when anybody leaves, he just doesn't like us going anywhere (which is understandable!), but hopefully this will be better because both Jeremy and Hayden will be here and we won't be gone but for a day (hopefully!!).
That is all for now, I will try and update as the day goes on Friday, but because it is so busy I might not get to it until Saturday :)
Thanks again for all the continued support, encouragement and prayers!!
Monday, March 10, 2014
Waiting, waiting and more WAITING....
Sorry that I haven't been good at updating the blog! It has just been a waiting game at the Knick house, and we are all getting VERY physically, emotionally and mentally tired. Plus there really isn't a whole lot that has changed!
Jaxon has been the same since writing my last post, which as I look back was not since we were in Rochester a month ago now....WOW I have been really bad at posting!! Anyways, he has had the same symptoms now for a month which are: extremely low energy, droopy eyes (he just always looks tired), headaches, dizziness, his speech is slow and he has a hard time trying to think of what he wants to say, blurry vision or double vision, very emotional and insecure, he is sleeping a lot more than usual, and hasn't been able to go to school but for a couple of half days. His whole personality has changed! He just isn't the same boy he was even at Christmas time! When we see it everyday sometimes we wonder if he maybe isn't making some of it up, or making it worse than it is, but then you see him in pictures or my parents and other family sees him, and they notice it right away. It has been hard to sit here everyday and watch him just not get any better, and not be himself! It has been wearing on both Jeremy and I, but it is even getting to Jax now...he just wants to get better!
We have kind of plan of action right now, but it isn't anything final or anything that will get him better right away. He has been taking a new medication called Diamox, that is suppose to slow down the production of the spinal fluid in his system. He has been on it now for 2 weeks, and we haven't seen any real changes, although he hasn't had a really bad confused episode yet (so that is good!). I have been on the phone with his neurologist a few times, have emailed, and called a few times but haven't got very far. It has been frustrating, but then again I have to step back and remember that she has a ton of other patients that she deals with too! It is just hard to wait!!! But as I read last week in devotions....Wait patiently for the Lord.
Be brave and courageous. Yes, wait patiently for the Lord ~Psalms 27:14. That is just something that God is asking of us right now, and I am doing my best to trust Him and His time, not MINE! Believe me, this has to be almost an hourly prayer for me cause I am so quick to try to figure or fix it all on my own, and I instantly get overwhelmed and then give up. God wants us to lean on Him and wait for what He has for us!
Jaxon has been the same since writing my last post, which as I look back was not since we were in Rochester a month ago now....WOW I have been really bad at posting!! Anyways, he has had the same symptoms now for a month which are: extremely low energy, droopy eyes (he just always looks tired), headaches, dizziness, his speech is slow and he has a hard time trying to think of what he wants to say, blurry vision or double vision, very emotional and insecure, he is sleeping a lot more than usual, and hasn't been able to go to school but for a couple of half days. His whole personality has changed! He just isn't the same boy he was even at Christmas time! When we see it everyday sometimes we wonder if he maybe isn't making some of it up, or making it worse than it is, but then you see him in pictures or my parents and other family sees him, and they notice it right away. It has been hard to sit here everyday and watch him just not get any better, and not be himself! It has been wearing on both Jeremy and I, but it is even getting to Jax now...he just wants to get better!
We have kind of plan of action right now, but it isn't anything final or anything that will get him better right away. He has been taking a new medication called Diamox, that is suppose to slow down the production of the spinal fluid in his system. He has been on it now for 2 weeks, and we haven't seen any real changes, although he hasn't had a really bad confused episode yet (so that is good!). I have been on the phone with his neurologist a few times, have emailed, and called a few times but haven't got very far. It has been frustrating, but then again I have to step back and remember that she has a ton of other patients that she deals with too! It is just hard to wait!!! But as I read last week in devotions....Wait patiently for the Lord.
Be brave and courageous. Yes, wait patiently for the Lord ~Psalms 27:14. That is just something that God is asking of us right now, and I am doing my best to trust Him and His time, not MINE! Believe me, this has to be almost an hourly prayer for me cause I am so quick to try to figure or fix it all on my own, and I instantly get overwhelmed and then give up. God wants us to lean on Him and wait for what He has for us!
So as of right now, we are tentatively going to go to Mayo on the 18th, 19th or 20th for another spinal tap and appointment with his neurologist, then hopefully be able to get in for an adrenal test that endocrinology wants to check out, and an appointment with them, and get into see Dr. Mason his rheumatologist. It will be another jam-packed short trip, but I think Jeremy is gonna be able to come with this time. I am SO excited about that :) He is all done with basketball, and isn't coaching baseball this year, so he is free(er) to come with. By free(er) I mean that he doesn't have any after school stuff he has to worry about, but just taking a day off for an elementary teacher is a HUGE deal! It means a ton of prep work to get ready for a sub and that in itself is stressful, not to mention why his is leaving...
So anywho, Jax will be having his spinal tap to see what his opening pressure is while he is on the Diamox, and he will be having the tap while he is awake like we were gonna try before. She just feels that they get a better reading that way, and there are no chances of medication interference. Jax of course is NOT too happy about his, but I know he can do it! We will be able to be right there with him, and hopefully they can get it done quickly! They are pros down there so I'm sure it will be alright :) From there we will see where she wants to go next. It seems like they are wanting to make sure there is no other issues or possibilities to look at before going the shunt route. She did say that she has rarely seen the shunt done in someone who has high pressure, but no vision struggles. His eyesight has always been great, which I guess would be something that would get affected right away. I also think that she is hoping it will all settle down on it's own after a couple of spinal taps. The spinal taps can re-set everything and help his spinal fluid to flow correctly, but so far it hasn't, and I am hoping that we don't have to wait so long in between next time! But we will figure it out soon...
You can pray for strength and energy for all of us, as these days are getting long and hard, especially on Jaxon. Another big prayer concern will be when he has his spinal tap, that he can stay calm, and still to be able to make it all the way thru. I know that there are SO many of you praying for us, and thinking of us, we are thankful for each one of you! There is no greater comfort than knowing that so many people are praying!
Jaxon has great friends around him too (who he misses!!). He has had care packages, cards, gifts, and even a whole booklet of jokes from his classmates! I know it means the world to him to see how people care about him :)
Monday, February 17, 2014
Jaxon Day #2
Jaxon's morning of Day 2 started off pretty easy...he was suppose to have a test right away in the morning to stress his adrenal glands, to see if they would work at all. But because he had lots of cortisone injections the day before it would have led to a false positive, so his endocrinologist decided we'd better just wait until that was out of his system. He was happy of course cause that meant NO IV, and NO blood tests for the day :) For me it was great because we got more time to go back to the hotel and take time packing up, which is always better than doing it in a rush! After we checked out of the hotel we stopped to grab a quick snack, and headed to Jaxon's noon EEG.
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Hayden and Jill just hung out in the waiting room which got a little long (about 2 hours), but Jill said that Hayden did really well and just looked at his cards almost the whole time.
Next were the appointments with Dr. Lietif (his endocrinologist) and Dr. Keating (his neurologist) after that.
Dr. Lietif was a pretty easy appointment, there wasn't anything new to discuss because we were unable to do the adrenal stress test. We set up a time to get that done the next time we are in town (March 14th), that was about it.
Our last appointment was the BIG ONE (hopefully answers!!)...we even got in a tiny bit early! So hear is all the info that I can spill out of my mind, which is A LOT.....
First off, Jaxon's spinal fluid was CLEAR!! It looked great, and had no indicators of infection, cancer, red blood cells, too many white cells, or any inflammation from a possible other auto immune disease. That is the biggest news, and best news to tell :) We can put all of those worries to rest now, and not have those questions in the back of our minds all of the time. Also the other positive was the results of his EEG, Dr. K said that for his age his markers should be in the 8-10 range (again I have no real idea what that means), and he was at a 10. She said that just means that his brain at that moment was functioning how it should for his age, especially in the background (??) She said that our brains had a beat like a heart, and that beat in the background of all else is what is important. She did say that she wished we would have seen what his brain looked like the day before, before they took off all of that spinal fluid. She knows it would have been different! She said with all of the pressure on his brain, with fluid so high, his brain is working at a dial-up internet speed. Our brains work at the high-speed rate... both are getting the same information, just at different speeds. I thought that was a good analogy! Jaxon's brain just takes longer to get the information (when his fluid is high). The last 6 months I know that this is what has been happening to him, and that is why school has been a struggle! She said that one of her biggest red flags is the fact that we held him back this year in the fifth grade. That told her that we need to figure this out so he doesn't have to take 5th grade over a bunch of times. She thought we did the right thing, and now we know why it has been hard these last few years!
So with all of that information, there is great news, but there is still the questions as to why he is having increased spinal fluid?? And that is a big question...one that we might have to wait for and see when and if it returns now in the next few weeks. They are going on the idea that it could be the prolonged steroids in his body. Now I guess I am just not thinking it is that, but that is just me, and I am not the doctors. I have this feeling that for some reason he developed this Normal Hydrocephalus....what I explained in a previous blog post, and I think it could just be something that he developed over time from his Still's disease, or even from the long term steroid use. I also don't feel like cutting down on steroids will help this get regulated, but again that is ME talking not the doctors. No matter what he has to be on some form of steroids when he is sick because of his adrenal suppression, so no matter what he will probably be producing more CSF (spinal fluid) as life goes on. I will be doing lots of research, and asking lots of questions these coming months. I am thinking I would like to look at the possibility of placing the shunt sooner than later so that he can get back to maintaining normal pressures even with a little steroids on board now and again. I want his brain to be allowed to catch up to where it needs to be without medications that would slow it down anyways (even if it is helping the pressure stay normal). ME, ME, ME....mine, mine, mine is how this is sounding, and how I am feeling ;) But they do say I know Jaxon best so hopefully they will hear me out, and look at the bigger picture! There are just SO many factors to deal with, it is hard for all of them to keep it all straight, let alone me! I guess when it comes down to it, I am SUPER happy with some of the answers we got this week, but am also antsy to be able to answer the long term questions, and where we go from here. I don't want to wait anymore for his sake, and for his brains sake!
Also the neuro-psych. testing will help in seeing where he is at right now and can maybe help with some of my questions. We just need to get that approved with our health insurance...which I think will be happening this week.
After all that went into my brain, and his, and Jill's (about an hour long appointment), we were all pretty fried, but wanted to get back home! So Jill was just AWESOME and drove all the way home for us!! She did a great job, and got us home around 10:30pm with a stop for food, which was much needed too! That food helped us both have the energy to get home.
Jill was such a HUGE help this last week, I can't thank her enough!!! She kept me laughing, calm, and even distracted,which was great :) She was awesome with the boys too, they loved having her along! She was just chill, and was never a bother to me, just helpful and there (which is the most important)!! She is amazing, and such a great friend! She even had a big trip the day after we got home...she left at 4am on Saturday to catch a flight to Guatemala with a mission team she went with. They are there to help at an orphanage for a week. It will be great to hear how it went, and I am sure she is not only having a blast, but is a blessing to many! She gets to see Anna Hansen, who has been working there for over a year, I am sure Anna is so excited to have her there! THANK YOU, thank you Jill for everything! Jaxon, Hayden, Jonah, Jeremy, my parents, and I are so grateful for your time and energy! You're the BEST :)
That is all I have....WOW a lot again! Hopefully this will be it for a little while at least. Thank you for praying us thru that trip, and beyond...we appreciate it a ton! It means so much to know we have so many of you behind us in love and prayers!
These 2 pictures are taken after about 45 minutes sitting in a chair gluing all of these things to Jaxon's head. Jaxon looked like he was getting a bunch of extensions in at the hair salon ;) They have to measure different points on his head and connect the right colors to the right places. It was a very precise thing and was interesting to watch! They glued the little wires to his head and dried them with an air machine. Then it was time to get into the EEG room...
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First they had him sit in the chair with his eyes closed and answer some questions...math and others.
Then they had him read and look at some patterns.
Next he had to keep his eyes open while they flashed bright lights in his eyes, first they were slow then it got really fast. Then he had to do the same thing, but with his eyes closed.
Me waiting :)
Next up was nap time...we had to stay awake 2 hours later than his usual bed time (so we were up till around 11pm) and then we had to get up 2 hours earlier than his regular wake up time. So we were up at 5am. He was nice and let me sleep till 6am, and he just played on his iPad...what would we do without technology!?!
He was pretty tired, so he went to sleep very quickly! They let him sleep for about a half an hour, and I had to stay in the room this time, cause he was a little insecure, which was just fine. I didn't fall asleep, but just rested my eyes and relaxed. After he woke up, they got the wires off of his head and we were able to go. It went really well, and they said that he was the perfect patient and they got good readings on him.
Next were the appointments with Dr. Lietif (his endocrinologist) and Dr. Keating (his neurologist) after that.
Dr. Lietif was a pretty easy appointment, there wasn't anything new to discuss because we were unable to do the adrenal stress test. We set up a time to get that done the next time we are in town (March 14th), that was about it.
Our last appointment was the BIG ONE (hopefully answers!!)...we even got in a tiny bit early! So hear is all the info that I can spill out of my mind, which is A LOT.....
First off, Jaxon's spinal fluid was CLEAR!! It looked great, and had no indicators of infection, cancer, red blood cells, too many white cells, or any inflammation from a possible other auto immune disease. That is the biggest news, and best news to tell :) We can put all of those worries to rest now, and not have those questions in the back of our minds all of the time. Also the other positive was the results of his EEG, Dr. K said that for his age his markers should be in the 8-10 range (again I have no real idea what that means), and he was at a 10. She said that just means that his brain at that moment was functioning how it should for his age, especially in the background (??) She said that our brains had a beat like a heart, and that beat in the background of all else is what is important. She did say that she wished we would have seen what his brain looked like the day before, before they took off all of that spinal fluid. She knows it would have been different! She said with all of the pressure on his brain, with fluid so high, his brain is working at a dial-up internet speed. Our brains work at the high-speed rate... both are getting the same information, just at different speeds. I thought that was a good analogy! Jaxon's brain just takes longer to get the information (when his fluid is high). The last 6 months I know that this is what has been happening to him, and that is why school has been a struggle! She said that one of her biggest red flags is the fact that we held him back this year in the fifth grade. That told her that we need to figure this out so he doesn't have to take 5th grade over a bunch of times. She thought we did the right thing, and now we know why it has been hard these last few years!
So with all of that information, there is great news, but there is still the questions as to why he is having increased spinal fluid?? And that is a big question...one that we might have to wait for and see when and if it returns now in the next few weeks. They are going on the idea that it could be the prolonged steroids in his body. Now I guess I am just not thinking it is that, but that is just me, and I am not the doctors. I have this feeling that for some reason he developed this Normal Hydrocephalus....what I explained in a previous blog post, and I think it could just be something that he developed over time from his Still's disease, or even from the long term steroid use. I also don't feel like cutting down on steroids will help this get regulated, but again that is ME talking not the doctors. No matter what he has to be on some form of steroids when he is sick because of his adrenal suppression, so no matter what he will probably be producing more CSF (spinal fluid) as life goes on. I will be doing lots of research, and asking lots of questions these coming months. I am thinking I would like to look at the possibility of placing the shunt sooner than later so that he can get back to maintaining normal pressures even with a little steroids on board now and again. I want his brain to be allowed to catch up to where it needs to be without medications that would slow it down anyways (even if it is helping the pressure stay normal). ME, ME, ME....mine, mine, mine is how this is sounding, and how I am feeling ;) But they do say I know Jaxon best so hopefully they will hear me out, and look at the bigger picture! There are just SO many factors to deal with, it is hard for all of them to keep it all straight, let alone me! I guess when it comes down to it, I am SUPER happy with some of the answers we got this week, but am also antsy to be able to answer the long term questions, and where we go from here. I don't want to wait anymore for his sake, and for his brains sake!
Also the neuro-psych. testing will help in seeing where he is at right now and can maybe help with some of my questions. We just need to get that approved with our health insurance...which I think will be happening this week.
After all that went into my brain, and his, and Jill's (about an hour long appointment), we were all pretty fried, but wanted to get back home! So Jill was just AWESOME and drove all the way home for us!! She did a great job, and got us home around 10:30pm with a stop for food, which was much needed too! That food helped us both have the energy to get home.
Jill was such a HUGE help this last week, I can't thank her enough!!! She kept me laughing, calm, and even distracted,which was great :) She was awesome with the boys too, they loved having her along! She was just chill, and was never a bother to me, just helpful and there (which is the most important)!! She is amazing, and such a great friend! She even had a big trip the day after we got home...she left at 4am on Saturday to catch a flight to Guatemala with a mission team she went with. They are there to help at an orphanage for a week. It will be great to hear how it went, and I am sure she is not only having a blast, but is a blessing to many! She gets to see Anna Hansen, who has been working there for over a year, I am sure Anna is so excited to have her there! THANK YOU, thank you Jill for everything! Jaxon, Hayden, Jonah, Jeremy, my parents, and I are so grateful for your time and energy! You're the BEST :)
That is all I have....WOW a lot again! Hopefully this will be it for a little while at least. Thank you for praying us thru that trip, and beyond...we appreciate it a ton! It means so much to know we have so many of you behind us in love and prayers!
Sunday, February 16, 2014
Jaxon Day #1...
Jaxon's week started out big with a morning in the out-patient surgery wing. He is well known on that floor and has Dr. Mackenzie (an anesthesiologist) wrapped around his finger, even though he wasn't Jaxon's doctor this time :) He always brings me extra cookies too while I wait, which is awesome!
Jaxon was scheduled for a spinal tap, 2 hip injections and one knee injection. It always takes longer to get into the procedures than it does to do them. He is seen by the anesthesiologist, the nurses that are in the room, the nurses in the procedure with him, Dr. Mason (who came with an assistant this time) who marks him up, rubs his head, and the team from St. Mary's who did the spinal tap. I have to answer a lot of questions, and make sure all of his information is correct.
He gets to pick out a surgical hat, and this time got to wear cool socks and these awesome shorts...he wasn't too impressed to have to change because usually he doesn't have to. He told me that he looks like a hippy in this outfit, and thought it was pretty funny! He was in a pretty good mood and usually is, he knows what is going to go on and has a list of what he wants. As long as it is kept routine, it is fine...he makes sure that they will remove his back patch (the thing that monitors his heart and other vitals) when he is still sleeping, and he wants NO smelly stuff in his mask that puts him to sleep. He was a little nervous about the spinal tap, but they made sure that he would be just fine after, and would be completely asleep when they did it. The team always asks if I want to come along until he falls asleep, but he never needs me...he just rolls away. I am pretty proud of him, he is such a BRAVE one!
He was in for about 30 minutes, it took a little longer because of the spinal tap. When he came back to the little room he was pretty out of it...which is normal, but it didn't take him too long to wake up. He is trying to wake up here, poor guy :(
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As far as his injections went, Dr. Mason said things went fine. He didn't put as much into the knee as he was going to, to save it for the hips. He said that he knew that his right hip would need quite a bit, just based on how he was able to move it around before the procedure. But he was surprised to see that the left hip actually looked worse. These last 2 times while doing the hip injections, he has had to use an ultrasound to see where he is going in the hip. That usually happens when kids get older, they get a little more meat on their bones. When he looked at his right hip he said it was pretty much bone on bone with a little fluid in between (which is kinda how it should look, maybe with a little more cushion), but his left hip looked like bone, then what he said looked like "crab meat", then bone. There was quite a bit of inflammation in there, so he put a little more meds into his left hip. It is weird cause his left hip hasn't been the sore one, but maybe his right one hurts because he has been compensating for his left.
We got back to the hotel around noon, after Jaxon woke up and ate something, which wasn't too bad. But according to Hayden we were gone FOREVER!!! He and Jill decided to hang in the hotel, have breakfast and relax, but it got pretty long for Hayden. He was bored, but that never takes very long to happen for him, so I am sure it was in the 1st 20 minutes of having breakfast that he was complaining about it. Poor Jill, she had to deal with him....but she made it. I took Hayden swimming for a little when we got back, then we decided to go shopping. The boys had got some money from Grandma and Grandpa, and Great Grandma Knick, that they wanted to spend. We got Jaxon in his wheelchair and walked around the mall for awhile, just to kill some time. Jill and I got some good coffee, and Jax and Hayden got a smoothie. Next we decided we all deserved a good early supper, since non of us had eaten much that day. We went to Olive Garden and took our time with a wonderful meal. We made a quick trip to Target where Jaxon bought some Legos and Hayden got a big pack of football cards that he sorted a million different ways that night. The rest of the evening was spent relaxing and watching the Olympics, which have been so much fun to watch, and a great distraction for our evenings on this trip! For Jaxon's tests the next morning, he had to go to bed around 11pm, so we all stayed up and just watch the Olympics together. It was a fun end to our day!
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