Update June 2010
Okay so a lot has happened yet again. Alexa did not respond to a pain medication that we tried so she did have her decompression March 2nd, 2010. All went well with that. There was a lot of scar tissue and he did find things that needed fixing that were not visible on the MRI, so over all we made a good decision to go ahead with the surgery. Alexa got very sick afterward and could not tolerate anything by mouth. Eventually they consulted her GI Dr's and they converted her G-tube to a G-J tube so that Alexa could go home with out tolerating by mouth. The interventional radiology dept. accidentally put in the wrong type of tube so there was a lot of confusion and Alexa had to undergo the same procedure the next day so that we could go home. (very frustrating) After all that was over Dr. Ganesh retested her sweat test and Alexa finally came up negative for CF!! He can't explain it. Her surgery sould have had nothing to do with her sweat test, but whatever...She is still going to stay under his service just in case and for her asthma, but he has taken the CF diagnosis away!!
AJ did finally forcefully give in to the surgery that he needed for the last 6 months and he had his shunt revised April 6th. He has had so many complications since it is rediculous. He was readmitted with in 24 hours of discharge, then her was later discharged and then readmitted because we thought his head was infected. After 3 days of just waiting for test results we found out that it was just strep throat!! Then we went home and finally made it to his post op appt when we thought everything was good and the surgeon says well let me tell you how you really are!! Here they found high White Blood Cells on the shunt tap they did but the infection was not far enough along to catch anything on the culture, so we think that as soon as he comes off the antibiotics for the strep it is only a matter of time before his really is infected....What...really...so about a week or so later yet again the fever and sick...back in..shunt tap...wait...nothing happened...AJ got better and his WBC count on this tap was a lower number!! We finally go home again and AJ makes it to his concert. A kid knocks him in the head while everyone was sitting on the floor. AJ doesn't say anything because he said it wasn't a hard hit...next AM AJ's head was all swollen down through his right eye!! Then AJ tells me what happened. Surgeon says to get him up there. BY the time we are in the ER swelling is decreasing and by the time the resident showed up it was just about gone. Next night happened again, they started playing with his shunt settings thinking that his pressures were too hight to have it all drain through the tube. AJ eventually gets sick from the lower pressures and it is not working anyway. AJ is still swelling at night time. Dr. Dias agrees to put his setting back to were AJ liked it and said that hopefully the swelling would eventually stop. As long as AJ is not having any symptoms and the swelling goes away upon sitting up then he will let it go. Well over a month later and AJ still swells when he lays flat. Only a couple bad mornings, so we continue to wait to see if it will stop. AJ is getting used to the swelling and it goes away immediatly when he changes position.
Just took the kids on a mini vacation to visit Crystal, Scott, Drew and Kyle. Had a blast. I realized that ALexa falls asleep constantly! She did restart her cough when I took her to camp June 12th and I restarted all her meds. I hope when things calm down she doesn't sleep like this all the time, or we will have to consult someone else. Today we also learned that she lost 2 lbs in 3 weeks:-) The good news was that after her G-J tube Alexa had gained 7lbs in 3 months!! SHe looses it really quickly so she still needs her tube and she has to be watched after to eat, but she finally gained some weight! We are hoping that we are getting a long break from surgeries and hospitals!!
Update on Alexa
Okay so this might be long.
Alexa started with very intermittant leg pains many months back. I thought that they were just growing pains so I let it go. Then about OCT. things became very increased. She was asking for a cart to ride in everytime we went to a store and constantly saying that her Right leg hurt. I felt her muscles and nothing seemed "wrong". So she ended up with one of her cough fits again and we were at the pediatrician since we started her steroid and I brought up the leg pain. She said that "growing pains" are just a myth and to prove it Alexa had not grown. SHe wanted Labs done and x rays but told me to wait until after the steroids were out of her system. She also told me to let Dr. Dias know what is going on just incase he thought he would want other testing.
While we waited the week for the steroid to get out of her system Alexa went down hill fast. Dr. Dias had initially told me to let him know when the labs and x rays were neg. and he would want an MRI. Well in that week Alexa's leg started "going to sleep" a lot and then it was both legs and then her hands felt funny and then the headaches started and she started sleeping a lot. I emailed Dr. Dias and he said where is my MRI. I told him it was not ordered yet since I did not have the test results and he immediatly started his office on getting her MRI. SHe needed to be sedated so it took FOREVER to get that done.
The MRI was not done until Dec. The MRI was not as obvious as we had hoped. By this time Alexa was sleeping most of the day after her 1/2 day kindergarden was over. She was requesting to go to bed about 630pm and she was afraid to sleep by herself because "something" was waking her up. Well I found out quickly she was gasping in her sleep and it would wake us both up. So she is not sleeping well. Dr. Dias ordered more testing to be sure that she needs another decompression. Alexa did another swallow test, a sleep study and eye testing.
In the mean time before the MRI Alexa had another episode of her coughing with a fever and the pediatrician was afraid that anesthesia would turn her away so they immediatly sent her to pulmonary in Hershey. Dr. Ganesh did a ton of testing on her and we found that Alexa had no HIB titer and something else was lacking. He sent us to the pediatrician for a HIB booster and Pneumovax. Also he has now confirmed that Alexa has Borderline Cystic Fibrosis. We are now awaiting a lot of test results to see what systems are involved. At this point things are becoming a little overwhelming!!!! All I wanted was Alexa to feel better and get back to her normal self!!! So now after all that...All the testing is over...I am waiting for Dr. Dias to decide if he is going to decompress Alexa soon and hope and pray that makes her back to her active self. Then I am waiting for Alexa's testing results from Dr. Ganesh. Then AJ and I have to be tested for the CF mutations that Alexa has.
~~~~~~~~~~Happy 2010~~~~~~~~~
Oct 2009
SO AJ had his 13th surgery on Sept 24th. Then in Oct he got the flu. We did not want to take him to the OR with the flu since AJ was tolerating the headaches so we were able to go home after a couple days. We were to return after AJ was over the flu but AJ refused to go back!! Dr. Dias said that as long as AJ could tolerate everything then we would give him time and see what happens.
Nov 17, 2009
Well AJ's adjustment didn't really work. AJ says that he is not ready to be fixed though. So we are leaving the ball in his court. We told him to let us know when he believes the headaches are too bad and he is ready to be fixed.
Alexa..where to begin. So her leg pain has led into numbness and tingling in her legs/feet. She complains that her hands feel funny. She has been getting headaches and left eye pain. Her labs that she had done last Thursday showed that she was a little dehydrated and her X-ray of her right leg was neg. Surgeon wants an MRI of her brain, neck and spine ASAP. She got sick again with a cough that she has had for MONTHS and a fever on Sunday. Pediatrician set us up with a Pulmonologist ASAP. We had that appt. today. Alexa was a trooper. She had a pulmonary function test, lab work, H1N1 shot, and X-ray. Then they want her tested next week for Cystic Fibrosis. The Dr. did clear her to be sedated for her MRI whenever we can get her in!!!! We can't get her in for the MRI until Dec. 7th do to the need for anesthesia. As the days go by and her symptoms increase...my hope of a negative MRI decreases.
Nov. 5, 2009
This AM AJ went to clinic and had his shunt readjusted. Turns out that I thought he was set at 60, but in Sept. when he had his new shunt placed, they set him at 80. So we set it to 60 today and we will see what happens. If nothing gets better I guess that means that the shunt is not draining, but hopefully this will work!
Tonight is Alexa's last dose of steroid for her asthma, so next weekend we can get her testing started.
Alexa Nov 3, 2009
I know not much here about Alexa. Chiari 1 with decompression. Feeding disorder with feeding tube and Nissunfunduplication.
She has been complaining increasingly over the last couple months of leg pain. She is also increasing her complaints of headache. Although her and AJ seem to get a lot of sympathy pain for each other and with AJ being bad...we never know what to think! Anyway her leg is getting worse. It is always the right leg that she complains about. It is to the point that it is now an everyday problem. She trys to insist that she needs a cart at any store we go in because her leg hurts. We don't let her have the cart because we didn't want to make her leg an excuse or a big deal. Now she is beginning to explain what sounds more like her leg is falling asleep or becomming numb and tingly.
She had an appt with the pediatrician today because we had to start her on her steroid for her asthma the other day and I brought all this up with her. I told her that we initially thought it was growing pains and asked if they could measure her. Well she quickly told me that that is a myth and that by the way...she did not grow. I told her that when she says that her leg hurt the other day I felt both legs and her muscles seemed even and not crampy. She ordered labs to be done after she is off the steroid and she ordered x-rays on her hip and right leg. I also sent a message on to the surgeon when I updated him on AJ. I let him know what has been going on and what the pediatrician has ordered. We wanted him informed to see if he had any input for us. He said that it sounds like it could possibly be spinal in nature and if everything comes up negative with the pediatrician he would want an MRI of her spine to check for changes.
This is shaping up to be another great year!! It would be nice if I could get a few straight weeks of work in and I know the kids would both love a break from Dr's and hospitals. Please pray, thanks
Oct-Nov 2009
Okay so our camping trip was turned into a day trip in the rain. Still had bad results with AJ needing to be taken to the ER late in the evening for flu symptoms and bad headaches. The ER Dr. did a ct-scan and his scan did not look good, so AJ was again admitted to the hospital. They tapped his shunt to ensure that nothing was still infected and they drew labs. His flu swab was lost so we will not know for sure if he had H1N1 but he did stay in the hospital to be hydrated and observed to see how bad his head symptoms were and what was from the flu. The head pain was mild after he started feeling better so we were able to go home in time for AJ to attend his field trip at school to the Dutch Apple Dinner Theatre! It was great! We both had a good time. THe surgeon was gone last week and wanted an update for when he returned. AJ said "Tell him that I still have headaches at night but it gets better in the day. My head gets puffy over my shunt when I lay down, but it goes away in the morning after I am up awhile. I get some headaches in the daytime, but it depends on what I am doing."
The surgeon decided that he would like to try to adjust AJ's shunt again before he goes back to the OR. Hopefully we will be able to get him into his Thursday morning clinic so we can try it out. So much for Lucky 13 :-(
2009 update
WOW I just realized that I never told you what happened in NY. AJ was not permitted to leave the state until after his first surgery. AJ had a VP shunt placed first. Then AJ could not tolerate the pressure release with not having the decompression so over Halloween AJ had his Posterior Fossa Decompression. Before surgery Dr. Bolognese said that he did not understand. From his testing, he was expecting a kid that was handicapped, mentally impaired, unable to communicate, ect. But AJ was talking and coloring and very smart. He said that AJ was compansating and who knows how long he will be able to do that. He said that the "seizures" that the daycare thought they saw was his cerebellum quivering and that ment that it wasn't going to last much longer. After decompression surgery Dr. Molerhat said that he was "not sure how AJ was alive" He said that everything was so tight in there that him surviving as long as he did was nothing but a miracle.
AJ's little sister, Alexa, was sick 6 months later and diagnosed at 18 months with Chiari 1 Malformation. She was a bad as AJ. During her Decompression they found that what was saving her was that she had no back to her C-1-2 and some part of the occipital bone that is to fuse at birth did not and things were able to buldge there. She has some neck instability and was in neck and back braces for about a year. She still has a slight instability but not much of a problem and should go away with growth. She was diagosed with extreme reflux into her lungs and had stomach surgery, Nissinfunduplication, and a Mickey button, feeding tube, placed. Alexa was found to not gain weight so we still have the Mickey button and a feeding pump. At 5 1/2 years old Alexa is just shy of 42 inches and weighs 33-34lbs if it is a good day. AJ is now 46inches and 49lbs.
Let's see... AJ had surgery end of Feb and then Beginning on March 2009. First was shunt revision and then he had a complication of his stomach swelling everytime he stood up. So he was taken back to the OR to check to see what the problem was. Nothing found. He now had surgery on Sept 24th, 2009 for a shunt revision and right and left septal fenistration and hole placed in the bottom of his 3rd ventricle. This was surgery number 13. It was also our first incision infection. We are still waiting to see if antibiotics are going to work or if he will need surgery to have his shunt externalized and placed in the ICU until the infection clears. I don't think this will need to be done.
AJ loves cub scouts. He loves the camping (which we are doing in the rain this weekend) and he loves all the activities. He is getting used to being in the hospital, but he hates the thought of having to go back. He is on a baseball team and just loves being a kid. He was started on Growth Hormone shots about 1 1/2 years ago and is now growing great!! His shunt was moved to his left side after his 10th surgery failed.
AJ is a happy, loving, and very smart kid that just wants to be as close to normal as he can. AJ can do anything he sets his mind to. He is awesome and loves his little sister like crazy.
01OCT 2004
Today was a good day! After NY called and confirmed that the testing was approved yesterday, I called Tricare back about what I needed an approval for again and who needed to fill it out. I told them that he had been to a neurosurgeon before and I didn't need approval. She said that she read the notes from when I talked to the woman earlier in the week and that that woman confused me for having tricare prime and not standard......She said that I need no approval from anyone. The only things that I would ever need approval for is things expensive like brain surgery or heart surgery. So that means that IF they say that he needs the surgery then the Dr would call for approval. So everything is set to go like I had initially thought a month ago and all this worry was for nothing. Everything is taken care of and we are simply waiting to leave. AJ is doing well. We are having more falling difficulties and his sleeping pattern at night time is horrible again. But he is doing great!
