Monday, February 7, 2011
I am glad he is there but man do I miss those guys. Being 7 months pregnant makes it hard for me to stay at the hospital and sleep on their pull out couches :o( But I am getting some nice one on one time with Noah.
I'm going to try to keep people updated on here about what we are finding out...i haven't done the best with blogging lately but hope to get back to it!
Tuesday, November 30, 2010
Wednesday, May 26, 2010
Micahs apnic episodes went from over 30 an hour without the bipap to........5 an hour with the biapap...this is WONDERFUL news! The dr feels confident that the bipap is right for Micah and feels that his pulmonilogist will be very pleased!!! So for now the bipap is his way to go!
Micah has a swallow study on June 11th where hopefully they will tell us that he's not aspirating anymore on thin liquids (wishful thinking I am sure as whenever he drinks anything without thickner in it he chokes and coughs...but at least he's coughing and trying to protect his airway).
Then on June 18th (I think this is the date). Micah will have another echo to check out the pulmonary hypertension that has developed from his sleep issues...and then we will see his pulmonilogist the same day for the results and where he wants us to go from here....
And on July 20th we will be taking the crew and moving back to the St Louis area for another year!
We have alot coming up...staying very busy and enjoying the warm weather!
Wednesday, May 5, 2010
Tuesday, April 13, 2010
Here's what we have found out in the last 2 days...
Had a lung CT done yesterday. It went alright. They tried to get an IV in Micah to do it with contrast but had no luck with the IV. I gave them 3 tries to get it in...they only tried once! (we've had many problems with getting IV's in poor Micah...we've also had horrible luck with people trying to get them in and sticking him over and over which is no fun which is why I have a 3 tries and your done limit now!) They looked to see if they could find a vein to work with but had no such luck...so the CT happened without contrast which was fine.
Next up was Cardiology. The cardiologist looked at Micahs Echo and said "yep he has pulmonary hypertension and yep it is most likely caused by his sleep apnea/hypoventalation issues". Which in my head I was saying "duh we already knew this!!!" but I kept that to myself. Anyway, he says that we have to treat the sleep issues instead of treating his heart...um...okay...So what does he want us to do? Well he wants us to make the bipap work. Alright so we are back to square one...alright so maybe no square one but back to the place we were in on Friday. Anyway, he doesn't want to treat it with medicine because he feels that too many dr's are over using the medications on little kids and there is no true evidence that it really helps and anyway the reason why he's having PH is because of the other issues so again...treat the other issues. He doesn't want to put Micah through a cardiac catherization right now so that is off the table.
We went back to see Dr P in pulmonology this morning and here is what he said. Micah's CT doesn't look horrible...there are a couple of things to notice but not huge. He wants us to go back and see G I because in the CT Micah's esophagus is really big and this isn't normal...this could be what causes him to have swallowing issues. He said that if G I ends up wanting to sedate him and scope him that we need to call him (Dr P) because he'll then try to get Cardiology to go ahead and do a Cardiac Catherization since he's already out...haha...kinda funny I think. Also...he says that while Cardiology told us to get an ECHO done very 6 months to keep an eye on Micahs heart he wants us to get it done every 2 months at the very least. So the next ECHO is schedule for June. (can you believe that in 2 months it will be June already?!?!?! crazy!) Then we will have a follow up with Dr P again...we have until then to get him on the bipap and get it working...if it's not working then we will have to seriously consider other options...ie trache...We really want the bipap to work!!!!!!! So...I think this is all we found out today.
We have a sleep study scheduled for next Thursday, it may get canceled though because the whole point of it was to see how Micah was doing on the bipap and well right now he's not even on it while sleeping yet becaue we are trying to get him to not freak out with it...tonight we got him to wear it for 20 minutes while awake...yes he screamed and hated it the whole time but he didn't try ripping it off the way he had the last couple of times we have tried! Yeah! Progress! I am just waiting to hear back from Micah's sleep dr to see if she wants us to keep the study scheduled for next Thursday or reschedule it...we are praying for her to reschedule it for when we can get good results with the bipap.
Next Friday Micah sees neurology again. I'm not sure what all they are going to tell us but we will see, we are still waiting to hear back on a genetic test they had run...hopefully we will hear the results on this soon!
Alright well I think that is all about Micah for now...through all of this he has held his head high, done a wonderful job, and takes everything in stride...if only mom and dad were as laid back as he was!!!!!!!
Thank you so much for all your prayers, we still need them...especially Micah!!!!
Friday, April 9, 2010
Alright well where to begin. Micah had a sleep study a few weeks ago. Turns out he is doing worse off than before. He is struggling still with all sorts of sleep apnea and hypoventalation (under breathing) which in turn causes his Co2 to build up in his system...not a good thing. :o( This can cause his heart to have issues so we have to get him to use a bipap machine while sleeping...not an easy task with an almost 17 month old. He will wear the headgear and mask around as long as it isn't plugged into the machine...the machine scares the poop out of him, understandably, so we are in a process of trying to get him used to it while awake for small amounts of time so we can "hopefully" get him to use it all night every night...
Alright well the sleep doctor said (after me asking about it) he should get an ECHO of his heart done...so we did. After a week of waiting for the results because our dr was on vacation a resident finally called us at 5pm on Good Friday and gave us the news we didn't want to hear. Micahs heart is being affected negatively by his hypoventalation/sleep apnea/co2 issues...he has now developed Pulmonary Hypertension, but from what he told us it wasn't that bad.
Today we saw Dr.P the pulmonolgoist. Well he looked at Micahs ECHO and said that the right side of Micahs heart is enlarged and his pressures (blood pressure) in his heart are ALOT higher than they should be. He is confused to as why all of this is going on but feels that Micah has lung disease or CCHS (congenital central hypoventalation syndrome) and all of this is playing a part in the issues with his heart now. So...he said Micah needs a CT of his lungs done, needs to see a cardiologist, and we need to think about doing a cardiac cath to check the pressures of his heart, and if the bipap machine doesn't work soon then we have to truly consider doing a tracheotomy for Micah and putting him on a ventilator while sleeping. WHAT???? So we've been told this many times recently and it's starting to get to us...we have a very "normal" 17 month old that has complex medical conditions that even dr's at Mayo are confused about...really it kinda blows. And all of this needs to be done fairly quickly since he is already having heart issues.
So right now we are still confused about ALOT of things but hope to get more answers next week. Micah has his Lung CT on Monday morning, he sees Cardiology on Monday afternoon, and then we go back and see Dr. P (pulmonology) on Tuesday morning. Hopefully next week we will find out what the next step is to help Micah!!!!!!!!!!!!!!
Hope this isn't all too confusing as it's confusing to me and I was the one who went to the dr appointment with Micah today and don't fully understand everything.
God is good and He is watching over our little man this much I do know!
Prayers for health are greatly appreciated!
Will update more when I find more out!
Monday, December 14, 2009
I could say that this is the way Micah looks right now. Crawling around on the floor of our house, working on walking but alas right now this is not the case.
Right now little Micah is laying in his hospital crib in the PICU of the local “children's” hospital feeling pretty puny. The nurses have been wonderful to him and are working on managing his pain as much as possible. We have been treated exceptionally well (hint: to be treated well you can bribe the nurses with double cheeseburgers from McDonalds…lol)
Micah did great during surgery. The ENT pulled out his tonsils and adenoids and was able to extract some fluid from his lungs for further testing. We should hopefully receive the results in the next few days of what the fluid in is lungs look like. (to be totally honest I am not even sure what they are looking for, i’m just trusting them).
As long as all continues to go well Micah will be breaking out of this place tomorrow sometime. Please pray that he gets to go home as we all do much better when sleeping in our own beds!
As for Noah, he is getting some wonderful one on one treatment with Papa Flick! He is having a blast, playing trains and cars!
Thank you for your prayers. I hope to have good news of breaking out of here tomorrow. Until then I sit and reflect on Joshua 1 vs 9.
Saturday, December 12, 2009
will be having surgery on Monday to have his tonsils and adenoids out. Please pray that all goes well and that he is in the least pain possible. Micah will be staying the night in Peds ICU for one night to watch for bleeding and complications. I will update how he does later!
Monday, November 30, 2009
Noah: Turned 2 on 10/10/09.
He's amazing. A very busy, energetic two year old who is loving, sweet, yet 100% boy! He LOVES all things trains right now...mostly Thomas the train!
Noah has been behind on his talking so we had a hearing test done which showed decreased vibration in his ear drums...a second hearing test will be done on Friday to see if there is any change in vibration. If he is still having decrease vibrations we will have him seen by an Ear Nose and Throat doctor. Due to his slow speach is in the process of being evaluated by Rochester Early Intervention Program to see if he is in need of speach therapy. Good news though...his speach has increased dramatically in the past 2 months. He is finally beginning to put 2 and 3 words together and says well over 100 words on a regular basis!
Micah: Turned 1 on 11/13/2009
Also an amazing little boy! Micah is close to walking, we expect that to happen very soon! He is talking up a storm for a 12 month old and never ceases to amaze us with what he repeats! Some of his favorite words are "Bye Bye" "Hi" "Tickle Tickle" "Go" "Thank You"...just to name a few.
We contiune to be confused with Micah's medical situation. Micah contiunes to have destats while sleeping and uses supplimental o2.
He had a sleep study last night and we received the results today. Unfortuantely Micah's nasal cannula isn't providing enough help with his breathing while sleeping so we will be switching him to a cpap machine or a bipap machine...most likely a bipap. He contiunes to underbreath causing his co2 levels to rise. His sleep doctor wants him to meet with a nurse tomorrow to start getting him used to the mask and then we will see the Ear Nose and Throat Dr to see if he needs his tonsils taken out (he has obstructive sleep apnea). This appoitment is next Tuesday. On December 18th he will have a follow up sleep study (this will be his 4th in less than a year) to get him acclimated to the new machine.
We are still without a dignosis, still confused as to why he is struggling with all of this but we are thankful that it is managable right now...we pray it contiunes to be managable!
Seth and I are doing alright. We are exhausted and frustrated with Micah's situation. We both wish Micah was healthy and didn't have to go through alll of this but we are so thankful that we are here in Rochester with the help of the wonderful nurses and doctors at Mayo!
Please contiune to keep Micah in your prayers (as well as the rest of us) as he contiunes to have test run in order to figure out what is truly going on in his little body! I hope to have more answers to questions after next Tuesdays appoitment with the ENT.
Sunday, October 4, 2009
The boys and I (Melinda) have been keeping very busy. Currently we go to two different classes/groups during the week...soon to be three. On Wednesdays we spend the morning at a church in Bible study...okay well the boys go to their wonderful daycare they have for the moms while I go to Bible study and hang out with some amazing women!!! The boys seem to enjoy the time with other kids and I definilty enjoy some adult only time!!!!!! Thursdays Noah and I attend a toddler/twos class (as he will be two in less than a week...ahhhh!). Noah and I hang out, play, and sing songs together for a while and then the kids go and play and the parents get to talk and dicuss current issues going on with our children lead by an amazing facilitor. During this time Micah goes to "Sibling care" where he gets to play with another little boy who is the same age as him! Starting at the end of this month Micah and I will be starting a class on Tuesdays called "tiny toddlers" where we will play with other kids his age and Noah will go off to "sibling care". So yes we will be busy Tuesday-Thursday. On top of these awesome activites we are meeting some wonderful friends whom have kids the same age and we are doing "playdates".
Micah is doing pretty darn well. He is almost 11 months. He has been crawling up a storm (army style). Pulling to a stand and cruising around the furniture...i see walking in our near future. SCARY!! (Noah didn't walk until 17 months!). He also has a tooth and a half (yes they are slowly but surely coming in). And is turning into a HORRIBLE sleeper. He has totally given up his morning nap but along with this he has been waking for HOURS in the middle of the night allowing mommy and daddy to get great..i mean HORRIBLE sleep cause when Micahs awake so are we.
Micah was supposed to have a sleep study a few weeks ago but we had to cancel it and need to reschedule due to a cold that we have all been wonderfully blessed with. (grrr). Micah now has glasses (not sure if i've shared this in previous post). He has been cancer free since April!!!!! Praise God!!! We will have another CT scan sometime this month to make sure all is still going well. I think that's all for now on Micah.
Noah is going to be TWO on Saturday. AHHHHHHH!!!! I can't believe it. Although his attitude sure shows that he's two. We've had some majoy independence needs lately along with a few tantrums (still). In the last few months he has begun talking ALOT more and says about 50 words. We just had his two year dr appoitment on Friday and he is now 35lbs 4oz (down three lbs since his last appoitment) and is 3ft 1 inch!!! He's is finally chartable...he's still >97% but still at least he's on the charts! We will be having a hearing test in a few weeks for him because of the way he speaks..we just want to make sure it's not caused by hearing issues. He will also be seeing a sleep study dr because he "snores" when he sleeps...just for a consult and make sure that all is well with him. The dr. is just being a little bit more cautious because of all of Micah's history!
Seth is doing great. (aside from his cold as well). He has jumped into his positon and is enjoying it! He's very busy but is making time for us as well....doing a wondeful job at that as well. He contiunes to be the most amazing dad and husband!!!
I am also doing well. Staying busy. The boys keep me on my toes.
I'll try to upload a picture later...gotta get ready for church!!!
Sunday, August 23, 2009
Micah had his 9 month well baby appointment on Friday. I truly enjoy well baby appointments, I go in there not worrying that they will tell me something else or that we need to run some other test. This appointment did not disappointment me! I found out that Micah is weighing in at 23lbs and 4oz and he is 28 inches long...he is in the 75% for everything! He is developmentally on track! He only had to get one shot! We have been referred to a pediatric optomologist though due to his "horners syndrome" in his left eye. If you remember (or don't that's okay) after Micah got through surgery his eye became droopy and the pupil doesn't react the way it is supposed to. The surgeon said that due to the location of the tumor it is possible that he nicked a nerve while removing it, this nerve controls part of the eye. We were told it should correct itself within three weeks of surgery, well...it hasn't fixed it self so we are off to the oncologist on Friday to check and see if it has affected his eye sight in this eye at all. Otherwise we don't need to return to the pediatrician until November when Micah turns a year!
This coming Friday we have an appointment with the pulmonologist in the morning and then the optomologist in the afternoon. Should be a busy day but we are hoping to find out if Micah is going to do another sleep study any time soon and what else (if any) test this pulmonologist thinks need to be done on Micah (we are praying none and that he says he's gonna grow out of it...that's what we hope at least!). Then the following Wednesday Micah has a follow up with his oncologist where we should find out the results of his next urine test...we pray that the numbers go down into "normal" range instead of "up" as if they begin to climb we may have more testing needed in order to find out what is going on.
Noah is great...busy as always. Nothing really new with him other than he's starting to say a few more words! *FINALLY!
Seth and I are doing great. Seth is super busy of course with vicarage. I am enjoying the weather here in MN and loving the town!!! The boys and I will start some parent/toddler classes twice a week starting in Sept!
Monday, August 17, 2009
I know it's been a while since I last updated the blog. Alot has been going on in our lives for the past month or two. We have moved to Minnesota and are pretty much settled into our new house which we LOVE!!!! We are enjoying the town and have found many really neat, close parks that the boys (well Noah) really likes. The boys and I are also enjoying the beautiful weather and go on walks daily, exploring the downtown and finding fun adventures to go on!
Noah is now 22 months and getting bigger and more talkative by the day. I cannot believe that my baby is going to be 2 in 2 short months. He says between 15-20 words which is considered "behind" from what i've read but we aren't too concerned as he definitely lets us know what he wants in one way or another.
Micah is also growing very quickly. He just turned 9 months and will be having his 9 month well baby appointment on Friday! These appointments are the ones I actually look forward to as they generally are easy and we hear about how well he is growing! Micah had his 3 month post surgery CT scan two weeks ago which came back GREAT...he also had his blood taken and a urine test done. The blood work came back great and the urine test was "so so". I'm not sure what it all means or stands for but what I do know is that one of the numbers on the urine test is supposed to be 35 or lower...before Micah had surgery to remove the tumor he was in the 20's which is great, but this last urine test came up at 41. What does this mean? Well it could mean nothing at all or it could mean that his body is hiding more neuroblastoma and we haven't found it. His new oncologist here in Minnesota isn't too worried about it but instead of going back in three months we will be going back monthly for urine test and follow up appointments to keep an eye on the levels and make sure they don't go up any higher. Please pray that the test was just extra sensitive and easily messed up and that his numbers are lower when he goes back in two weeks!
Otherwise Micah is busy busy busy. He's not crawling yet but getting very very close. He has his own personality for sure!
Thank you for all the prayers, please keep them coming!!!!
oh and Micah will see his new pulminologist in about a week and a half.