Hi friends. First I want to thank you for the prayers last month for Briannas ear tube and adenoid surgery, it went very well except for the fact that it took twice as long as they told me. She was just about her normal self by day 3.
Unfortunately... things have turned for her, for us, again. Since August 2nd and 3rd she started getting fussy, but nothing obvious of pain or discomfort. She was just not sleeping and being crabby throwing and hitting. I dismissed it hoping it was the heat or she just wasnt having a good day, daddy did start a new job and he wasnt spending nights at home so I thought maybe she was feeling out of sync.
By August 4th she actually started crying at bedtime, non stop crying. Literally. She wouldnt stop crying no matter what I did... so then I realized she wasnt feeling good, having no fever, no cough, runny nose none of the "obvious" signs of illness I immediately thought she may have an ear infection (since she had just had ear tubes placed 2 weeks prior). Off to the ER we went just my baby girl and I past midnight, that was only the 2nd time I go alone to the ER with her, daddy started his new job and couldnt miss already. This was a tough visit... she didnt stop crying all night.
Well her ears and nose and throat were looked at and they were clean no infection and tubes were in place. SO then what? We decided to do chest xrays due to her history of lung collapses and intestinal malrotation, some blood work, and some urine tests. If nothing came up they were going to do xrays for broken bones (since Brianna cannot communicate with us well enough and her speech is very very limited she cannot tell us what hurt, what was wrong... at all, just cried and screamed in pain, none stop.) Well the xrays showed she had backed up poop in her intestines so an enema was given to clean her out. She pooped about 20 mins later and she stopped crying. She actually started walking around the ER we immediately thought that was what was bothering her, and we took her home to continue pooping. We got home around 6:30am and tried to nap... that lasted 2 hours and she was back up and crying. I hooked her gtube up to eat and her stomach blew up it distended and got rock hard... bingo something else was going on with my baby.
For the record, these are the moments when I break down about her Agenesis of the Corpus Callosum and the developmental delays it has caused her especially in speech, it hurts that she couldnt communicate to tell us WHAT was wrong. (Or her chromosome disorder either or or actually both contribute to this).
Back to the ER we went after having been there a few hours prior that day. They did abdominal and chest xrays again. At this point she was so dehydrated her tongue was so dry it had not the least bit of oral secreations. They did blood work and a catherized urine test again. The chest xrays showed what they thought was pneumonia, (which we later found out by comparing them to her old admission xrays from January and February for the pneumonias and lung collapses that its chronic permanent damage that looks like lower lobe pneumonia to someone seeing her xrays for the first time... sad, very, it hurts to know that her little left lung is so damanged that we will always hear "she has pneumonia" "oh wait no she doesnt thats permanent consolidation....") anyway they started an IV and started antibiotics for a possible pneumonia, they said her intestinal lobes were very dialated and there was a lot of backed up stool that she had an ileus (intestinal paralysis...) so she was being admitted.
She was admitted from Aug 4 to the 7th, they gave her some bowel rest kept her hydrated on IV fluids and slowly started her on clear fluids through her gtube at a slow rate overnight by day 3. They took her off the antibotics when they agreed there was no pneumonia just permanent white spots. She tolerated two feeds at her home rate by day 4 and she was discharged, she was happy and running around we thought that was the end of that... we were wrong.
The same night we took her home (sunday the 7th) in the middle of her first home feed her stomach distended like a basketball, rock hard, and started getting fussy. We were all so very exhausted knowing she had just been taken off an IV we agreed she was hydrated enough to wait until the morning, since she no longer had fevers either. I vented her tube took all the contents out and her belly went down. Late that night I went out for pedialyt to try and give her a slow drip overnight to keep her hydrated until we went to see her pediatrician the following morning in hopes that he could help us without sending us back to the hospital. I had her at a miserable 15 mls (half an ounce) an hour and she didnt tolerate it. We went into her peds that morning and he wasnt there so we saw the Dr taking care of his patients she couldnt help us, all she did was make us an appt for the following day with our GI (it would have normally taken us 3 weeks min to get in there) she adviced to keep her on small amounts of pedialyte until then (this was monday). So Tuesday the 9th we went into Gi and she wasnt helpful either, her thought was that she still had some ileus (pralyzation) and that she needed a more aggresive clean out of her intestines. She put her on 3 different types of laxatives... milk of magnesia (her norm) miralax, and enemas. She adviced to keep her on pedialyte again for the next 24 hrs that makes sunday, monday, tuesday, and now wednesday on just pedialyte... and to try half pedialyte and half pediasure by thursday... argh.
OK so we did that that day kept her on pedialyte which she didnt tolerate even an ounce. I thought the idea of keeping her on pedialtye 4 days was ridicules I could already see her weight loss... which if you are a FB friend you know how hard we worked on helping her gain weight for surgery she actually gained 3 lbs which needless to say she has lost already :(
Wednesday afternoon I just brought her back to the hospital... frustrated for answers... this is our last try at CHOC in Orange, if we dont get answers which we havent we are pulling her from here and driving her to CHLA childrens in Los Angeles CA in search for answers.
ALL the same damn tests were ran again. Blood, urine, chest and abdominal xrays. Well xrays showed her ileus had "returned" (i say never receovere/went away). That her dialated lobes were worse, twice as bad to be exact. and yeaaaah again they tried to push that she had pneumonia.... I had them check the notes from last 'pneumonia scare' and they agreed her lung is just that screwed up, permanently. Sigh.
The ER attendant was ready to send her home on pedialyte again. I was pist and told them that that was not acceptable that I wasnt going to allow her to waste away on pedialyte when she cant tolerate a single ounce at almost 4 years old.... she left never came back a new Dr came back and admitted us without telling us what the plan would be.
Now we have been admitted since Wenesday the 10th today is Friday the 12th and by the looks of it will be here for quite some time. As we have no definite answers.
We have heard it all... from its just her and there is nothing they can do.
To we rushed her feeds last stay lets take it slower this time and allow more bowel rest.
To her stomach isnt digesting anymore we need to try predigested formula.
To she may need a gjtube or worst case TPN... I dontd want to go here yet, I will if I have to... this is either a new feeding tube that would feed into the intestines and bypass the stomach or TPN which is intravenous nutrition which feeds directly into the blood stream, the life expectancy isnt fantastic with this so we are leaving it for absolute last resort.
To there is no reason for this it just happened give it time.
To this is a secondary issue as a result of a primary problem of something we arent seeing.
To even pushing the supposed pneumonia again even though she has no fevers, and her cultures are all negative for viruses and bacteria.
Whats the plan? Not sure... I dont think they even know but my patience is growing thin.
They are giving her bowel rest again they are giving her ezythromicin not as an antibiotic but as a motility med and zantac to help with acidity even though she has a nissen fonduplication for GERD.
They ran more extensive blood work and another urine culture and all was negative. I keep requesting a ct scan or ultrasound but they keep telling me its not necessary. I feel there may be something else going on. They did do an upper GI with small bowel follow up and there was no obstruction or malrotation present but still something tells me there is something more going on than just severe constipation and her suddenly not digesting formula.
I feel that since she has two underlying conditions (acc and chromosome issue) they find it easy to say "its just her, its her anatomy" instead of looking into other possible reasons why this is happening.
Tonight they tried feeding her infalyte at a slow rate of 60ccs an hour thats two ounces and she didnt tolerate it, shes even distending without food in her belly and having lots of clear discharge.
I am going to demand a ct scan or ultrasound or a dang endoscopy/colonoscopy to the a.m drs or I will threatent to take her to CHLA and sue them if they find something they didnt that could have/be life threatning/altering.
I am frustrated, shes loosing weight has had pediasure 3 times in days... I have missed so much work I havent been able to pay my August rent, Septembers is around the corner... and we are broke.
My husband isnt a good advocate he takes what the Drs say and I dont, I speak up for my child so I have to be here with her. He works at night now which leaves me alone 90% of the day with her and its exhausting. I miss my Hailey girl so much, even if she doesnt lol.
I dont know what is next, I dont know what to demand but i will demand more tests. Please pray for her, for strength and for guidance for the doctors caring for her to figure this out. Please pray for us, her family to be able to stay positive.
Its getting very hard.
Today is also my baby sisters 13th birthday, I was able to run out for literally 2 hours to have dinner with her, it hurt very bad to have Bri at the hospital and not be able to join us in celebrating Jess. It was hard not to be able to join them for cake and presents and not have Brianna there but God willing she will get through this, and we will spending lots of time together.
Thank you all for listening to my rant more than an update update. I will try to post as we find anything else out or as things change and hopefully progress.
Prayers are much needed and much appreciated God Bless you all.
Friday, August 12, 2011
Thursday, July 21, 2011
Prayer request, please...
Hi my followers... if anyone still follows my blog :( I am sorry for being so bad at updating. I would like to do a more detailed update but at the moment I cant, physically and emotionally. I will, soon, promise. I wrote a prayer request to my ACC support group and I would like to copy it here for some additional prayer and support from others who may not be on the list. thanks <3
Hi everyone. I wanted to request a little prayer and positive thoughts and vives from you all, our ACC family.
My daughter Brianna 3.10 years old C-ACC is having surgery this Friday 7/22 and we are having a hard time with it. Her procedures are "minor" and are expected to be outpatient but our main concern is having her put under general anesthesia again.
She has had some bad and good experiances with general anesthesia, the scary part is that due to her lung disease her her lungs still not being fully recovered from her lung collapse a few months ago (some may remember this she had failure to recover complete lung collapse for months this being her 3rd left lung collapse in a year) she will have to be put on a ventilator straight away they even intubated her for her bronchoscopies and laryngoscopies because the risk is to great.
The worry for us is how well or how not well she will handle anesthetics and intubation how dependant she will become on the ventilator after surgery etc she had had 3 previous surgeries and with one she had to remain ventilated for over 3 days until they slowly weened her off... plus her apnea spells start again after being on GA and they vary from simple to life threatning..... she usually ends up in ICU for at least the night after any procedure...ok enough negativity.
Please pray that she handles the anesthetics, and the procedures well, and that she may come off the ventilator right after surgery... the simple thought of another IV on her fragile scarred veins freaks me out and saddens me.
She is strong, this I know... God will be with her holding her hand and get her through this, this I know (hope for)... but I am human and I am her mommy and I worry sick.
(shes having an adenoidectomy and ear tubes)... I know I feel silly for being so overly worried but again its not the procedures its the risks of it all.
Thank you all like always for being there for us, for the thoughts the prayers and the support. I will update Friday morning surgery is scheduled at 6am with a 5am check in yikes!
Hi everyone. I wanted to request a little prayer and positive thoughts and vives from you all, our ACC family.
My daughter Brianna 3.10 years old C-ACC is having surgery this Friday 7/22 and we are having a hard time with it. Her procedures are "minor" and are expected to be outpatient but our main concern is having her put under general anesthesia again.
She has had some bad and good experiances with general anesthesia, the scary part is that due to her lung disease her her lungs still not being fully recovered from her lung collapse a few months ago (some may remember this she had failure to recover complete lung collapse for months this being her 3rd left lung collapse in a year) she will have to be put on a ventilator straight away they even intubated her for her bronchoscopies and laryngoscopies because the risk is to great.
The worry for us is how well or how not well she will handle anesthetics and intubation how dependant she will become on the ventilator after surgery etc she had had 3 previous surgeries and with one she had to remain ventilated for over 3 days until they slowly weened her off... plus her apnea spells start again after being on GA and they vary from simple to life threatning..... she usually ends up in ICU for at least the night after any procedure...ok enough negativity.
Please pray that she handles the anesthetics, and the procedures well, and that she may come off the ventilator right after surgery... the simple thought of another IV on her fragile scarred veins freaks me out and saddens me.
She is strong, this I know... God will be with her holding her hand and get her through this, this I know (hope for)... but I am human and I am her mommy and I worry sick.
(shes having an adenoidectomy and ear tubes)... I know I feel silly for being so overly worried but again its not the procedures its the risks of it all.
Thank you all like always for being there for us, for the thoughts the prayers and the support. I will update Friday morning surgery is scheduled at 6am with a 5am check in yikes!
Thursday, June 2, 2011
FINALLY AN UPDATE (LONG)
I am long overdue for a blog update, and I apologize to those who still visit my blog. There has just been way too much for me to try to catch up from my last post to today so I will update on a few random ones and I will TRY to be short.
For one, THANK GOD, Brianna still has her THE VEST and we have not yet had to invest a cent as of right now. The expiry date of the insurance authorization is June 5th meaning this Sunday. We are waiting to see what the insurance will say, but for now our pulmonary DR already put in another 5 month request, keeping our fingers crossed that it gets approved. We have also not had a problem getting pulmozyme (remember the very expensive medicine) we have had our monthly supply now for 5 months (expiry date was yesterday we received our “last refill”) awaiting insurance response on this also.
** For those of you who donated, or know someone who donated to Brianna’s fundraiser for her THE VEST and pulmozyme please know that we have deposited all the CASH into an account for Brianna and it has not been touched in the least** Please note we have not deposited most checks but will do so soon if any of you donated checks and would like me not to deposit or deposit at a later time please let me know before this weekend** Thank you ALL again for all the love and support the money is cushion for any further needs for Brianna (medical necessities/therapies) or if we get denied an extension on the THE VEST we will now be making an offer.
Since my last update Brianna has been doing failry well. She has had to do 3 different courses of antibiotics for respiratory infection PLUS as a preventive for pneumonia during these infections, she is currently on a 10 day course now as well as a 5 day steroid course for a respiratory infection. She had her first ear infection and was treated with antibiotics as well. (This child has had too many antibiotics). Besides that her left lung continues to recover amazingly she seems pretty much back to normal besides the little bumps with allergies and respiratory infections (but we have been able to treat them at home! That’s a major plus).
Medical update for Bri… we had our first two visits with Infectious Disease/ Immune Deficiency/ and Hematology they started doing their main T branch immune system testing which requires a whole lot of blood from our tiny Bri so we did this in two sections… we received the results looks like she has within normal results for what they have tested so far and even tests above average in some antibodies… we currently have the lab paperwork to take her for the second part of the testing (we are waiting for her to feel better from her respiratory infection) now they will start testing the smaller branches of the main branch of the immune system. These visits have not been fun much less easy to handle and absorb information… ultimately they may not find anything that they will be able to help her with (Drs words) and the cause of her reoccurring pneumonias may just be her anatomy (her chromosome build up which is very unique (she’s a very unique girl J) and treatment will continue to be physical (THE VEST, the breathing treatments, CPT chest percussion therapy, antibiotics/steroids as needed and hope she gets stronger in time to fight these pneumonias. Not easy to swallow then again he says the further they get into testing the least possibilities there are about finding something “terribly bad” … yeah so a whole lot of nothing in something. He said we will eventually test her for “everything” even X (male linked) disorders just to make sure she isn’t the small percentage before dismissing it as just her anatomy. Lets see what happens there.
Brianna’s adenoidectomy and ear tube placement surgery (surgery #4) will take place July 22nd at CHOC Childrens Hospital. Yes, the ear tubes is a new one… she recently had a second hearing test which showed mod-severe hearing loss and they suspect its fluid retention based, her ear fluid is jello like and isn’t draining on its own, the only good thing here is that she will have both procedures during the same surgery and wont have to be put to sleep two separate occasions. We are hopeful that this will promote her speech she is so eager to speak and besides her ACC (brain abnormality) there is no physical reasons why she cannot speak (besides them now suspecting is her poor hearing). She will not be getting her tonsils out further testing revealed her tonsils are small and are not the reason for her obstructive apnea only her adenoids which are 3X’s larger than they are supposed to be. Pre op on July 14… will keep you all posted.
My sweet little 3 year old girl continues to amaze me daily, literally. She is still a perky, jumpy, little miss attitude, happy happy little girl. She is learning new “acts” like walking off the couch daily and learning new words/signs all the time. She is my hero.
Now a few other updates.
Hailey, my big beautiful girl, turned 6 on May26… I cant believe it!
We had a cake and piñata and a whole lot of presents for her at my house. (Piñata was her request I don’t know where she got the idea she hadn’t had one since she was 2… J ) we had a blast celebrating our big girl, she is so proud to be the big 6!
Her bday was a busy day… (besides Briannas dr apt in the a.m and my apt in the afternoon after I got off work)… she had open house that evening before her birthday celebration (omg shes almost done with Kindergarten!) I will post pictures of all this soon… have to upload them J Hailey like her baby sister continues to melt my heart daily… she is growing into such a loving compassionate respectful little girl I couldn’t be more proud to call her my daughter. Times haven’t been the easiest for her but she is coping and is learning. I haven’t posted about this really but we finally talked to her around November/December 2010 about my husband being her step-dad (her HEART dad by choice) and who her biological-dad (her BLOOD dad by birth) is. She shocked me by how well she understands this (for her age of course). Slowly this will be natural for her. She has been around her biological fathers family now for a few months and really enjoys visiting, especially meeting her 9 (or 10) year old older sister. She is asking a lot of appropriate questions and really understands that she must appreciate her HEART daddy for stepping in and choosing to be her daddy and raising her so lovingly yet appreciate the man who gave her life and slowly understand that he does not have much of an option about being near her at the moment. I want her to know she was a product of love and to never feel unwanted by her BLOOD dad, because its not a pretty feeling and because it simply isn’t true.
- Not sure if I already posted this but Hailey was hospitalized for a week in March for a bad UTI and kidney infection, dental abcess and an oral herpal virus that caused her to loose the ability to eat or drink anything to keep her alive so she had to be on supplemental IV fluids the entire time. Shes much better now fully recoverd… ummmmm did I mentioned she cracked her forehead today running into our fire extinguisher? Lol shes clumsy but shes ok.
Anywho… she will be graduating Kinder soon will post pics of my big girl. Transitioning from K to 1st wont be a biggy for her as she has been in full day Kindergarten since day one, and she’s technically been in school for 12 months (she started a year round school in June and then moved to the regular schedule school months later) so she’s got it down.
Update on me.
Sigh. There is so much more going on Id like to have time to update all but it would get too boring.
A while ago I was diagnosed with a complex ovarian cyst, had been causing me horrific pain for months I assumed it was still there. Yesterday I was diagnosed with Endometriosis and was put on birth control pills for hormone balance, lets see how that works out for us. I will be on a 3 month trial, if this does not work we will opt (discuss) gynecological surgery to remove the endometric tissue or something. My big cyst is gone, but now I have a bunch of tiny ones and a big fibroid we need to keep an eye on. I have also been put on blood thinners due to a blood clotting stress test testing high and my family history of stokes and blood clotting disorders. I have been having weird shock like sensations throughout my body for a while and back and stomach pain for some time (which they are now guessing it’s the endometriosis) but are sending me for a transabdominal ultrasound of all my major organs and blood work again to check my liver and pancreas function. Will update on that. (Oh yeah did I mention Ive had heart cavity swelling twice for no apparent reason and am on 600mg ibuprofen for that daily 3 xs a day as an anti inflammatory med) yai lots of fun.
Yai I updated a gloomy post… its really not been all that bad as it sounds its just that I know people expect more of a medical update at this point. I also celebrated my 23rd birthday on May 29 (yep Hailey and I are close in bdays) and we have been enjoying the warm weather with Zoo trips and outings J will post pics of that also.
I have been reading EVERYONEs blogs who I follow, I have to admit I get sad when I don’t see an almost daily update from you guys yet I am horrible at updating mine LOL. I am Facebook addicted you guys can find me there also under Araceli Sandoval-Reynoso I tend to update that daily and do throw in medical status updates on my kids and self on there.
I am probably missing a lot that has been going on but ill do that on a later post J much love to all my family and friends <3
_ I have a nice story to post about a man I met driving down the street who is a father to a 3 year old with C-ACC but Ill leave that for its own post, its deserving_
Araceli
Mommy to the most precious princesses on earth… Hailey 6years and Brianna 3.8years
For one, THANK GOD, Brianna still has her THE VEST and we have not yet had to invest a cent as of right now. The expiry date of the insurance authorization is June 5th meaning this Sunday. We are waiting to see what the insurance will say, but for now our pulmonary DR already put in another 5 month request, keeping our fingers crossed that it gets approved. We have also not had a problem getting pulmozyme (remember the very expensive medicine) we have had our monthly supply now for 5 months (expiry date was yesterday we received our “last refill”) awaiting insurance response on this also.
** For those of you who donated, or know someone who donated to Brianna’s fundraiser for her THE VEST and pulmozyme please know that we have deposited all the CASH into an account for Brianna and it has not been touched in the least** Please note we have not deposited most checks but will do so soon if any of you donated checks and would like me not to deposit or deposit at a later time please let me know before this weekend** Thank you ALL again for all the love and support the money is cushion for any further needs for Brianna (medical necessities/therapies) or if we get denied an extension on the THE VEST we will now be making an offer.
Since my last update Brianna has been doing failry well. She has had to do 3 different courses of antibiotics for respiratory infection PLUS as a preventive for pneumonia during these infections, she is currently on a 10 day course now as well as a 5 day steroid course for a respiratory infection. She had her first ear infection and was treated with antibiotics as well. (This child has had too many antibiotics). Besides that her left lung continues to recover amazingly she seems pretty much back to normal besides the little bumps with allergies and respiratory infections (but we have been able to treat them at home! That’s a major plus).
Medical update for Bri… we had our first two visits with Infectious Disease/ Immune Deficiency/ and Hematology they started doing their main T branch immune system testing which requires a whole lot of blood from our tiny Bri so we did this in two sections… we received the results looks like she has within normal results for what they have tested so far and even tests above average in some antibodies… we currently have the lab paperwork to take her for the second part of the testing (we are waiting for her to feel better from her respiratory infection) now they will start testing the smaller branches of the main branch of the immune system. These visits have not been fun much less easy to handle and absorb information… ultimately they may not find anything that they will be able to help her with (Drs words) and the cause of her reoccurring pneumonias may just be her anatomy (her chromosome build up which is very unique (she’s a very unique girl J) and treatment will continue to be physical (THE VEST, the breathing treatments, CPT chest percussion therapy, antibiotics/steroids as needed and hope she gets stronger in time to fight these pneumonias. Not easy to swallow then again he says the further they get into testing the least possibilities there are about finding something “terribly bad” … yeah so a whole lot of nothing in something. He said we will eventually test her for “everything” even X (male linked) disorders just to make sure she isn’t the small percentage before dismissing it as just her anatomy. Lets see what happens there.
Brianna’s adenoidectomy and ear tube placement surgery (surgery #4) will take place July 22nd at CHOC Childrens Hospital. Yes, the ear tubes is a new one… she recently had a second hearing test which showed mod-severe hearing loss and they suspect its fluid retention based, her ear fluid is jello like and isn’t draining on its own, the only good thing here is that she will have both procedures during the same surgery and wont have to be put to sleep two separate occasions. We are hopeful that this will promote her speech she is so eager to speak and besides her ACC (brain abnormality) there is no physical reasons why she cannot speak (besides them now suspecting is her poor hearing). She will not be getting her tonsils out further testing revealed her tonsils are small and are not the reason for her obstructive apnea only her adenoids which are 3X’s larger than they are supposed to be. Pre op on July 14… will keep you all posted.
My sweet little 3 year old girl continues to amaze me daily, literally. She is still a perky, jumpy, little miss attitude, happy happy little girl. She is learning new “acts” like walking off the couch daily and learning new words/signs all the time. She is my hero.
Now a few other updates.
Hailey, my big beautiful girl, turned 6 on May26… I cant believe it!
We had a cake and piñata and a whole lot of presents for her at my house. (Piñata was her request I don’t know where she got the idea she hadn’t had one since she was 2… J ) we had a blast celebrating our big girl, she is so proud to be the big 6!
Her bday was a busy day… (besides Briannas dr apt in the a.m and my apt in the afternoon after I got off work)… she had open house that evening before her birthday celebration (omg shes almost done with Kindergarten!) I will post pictures of all this soon… have to upload them J Hailey like her baby sister continues to melt my heart daily… she is growing into such a loving compassionate respectful little girl I couldn’t be more proud to call her my daughter. Times haven’t been the easiest for her but she is coping and is learning. I haven’t posted about this really but we finally talked to her around November/December 2010 about my husband being her step-dad (her HEART dad by choice) and who her biological-dad (her BLOOD dad by birth) is. She shocked me by how well she understands this (for her age of course). Slowly this will be natural for her. She has been around her biological fathers family now for a few months and really enjoys visiting, especially meeting her 9 (or 10) year old older sister. She is asking a lot of appropriate questions and really understands that she must appreciate her HEART daddy for stepping in and choosing to be her daddy and raising her so lovingly yet appreciate the man who gave her life and slowly understand that he does not have much of an option about being near her at the moment. I want her to know she was a product of love and to never feel unwanted by her BLOOD dad, because its not a pretty feeling and because it simply isn’t true.
- Not sure if I already posted this but Hailey was hospitalized for a week in March for a bad UTI and kidney infection, dental abcess and an oral herpal virus that caused her to loose the ability to eat or drink anything to keep her alive so she had to be on supplemental IV fluids the entire time. Shes much better now fully recoverd… ummmmm did I mentioned she cracked her forehead today running into our fire extinguisher? Lol shes clumsy but shes ok.
Anywho… she will be graduating Kinder soon will post pics of my big girl. Transitioning from K to 1st wont be a biggy for her as she has been in full day Kindergarten since day one, and she’s technically been in school for 12 months (she started a year round school in June and then moved to the regular schedule school months later) so she’s got it down.
Update on me.
Sigh. There is so much more going on Id like to have time to update all but it would get too boring.
A while ago I was diagnosed with a complex ovarian cyst, had been causing me horrific pain for months I assumed it was still there. Yesterday I was diagnosed with Endometriosis and was put on birth control pills for hormone balance, lets see how that works out for us. I will be on a 3 month trial, if this does not work we will opt (discuss) gynecological surgery to remove the endometric tissue or something. My big cyst is gone, but now I have a bunch of tiny ones and a big fibroid we need to keep an eye on. I have also been put on blood thinners due to a blood clotting stress test testing high and my family history of stokes and blood clotting disorders. I have been having weird shock like sensations throughout my body for a while and back and stomach pain for some time (which they are now guessing it’s the endometriosis) but are sending me for a transabdominal ultrasound of all my major organs and blood work again to check my liver and pancreas function. Will update on that. (Oh yeah did I mention Ive had heart cavity swelling twice for no apparent reason and am on 600mg ibuprofen for that daily 3 xs a day as an anti inflammatory med) yai lots of fun.
Yai I updated a gloomy post… its really not been all that bad as it sounds its just that I know people expect more of a medical update at this point. I also celebrated my 23rd birthday on May 29 (yep Hailey and I are close in bdays) and we have been enjoying the warm weather with Zoo trips and outings J will post pics of that also.
I have been reading EVERYONEs blogs who I follow, I have to admit I get sad when I don’t see an almost daily update from you guys yet I am horrible at updating mine LOL. I am Facebook addicted you guys can find me there also under Araceli Sandoval-Reynoso I tend to update that daily and do throw in medical status updates on my kids and self on there.
I am probably missing a lot that has been going on but ill do that on a later post J much love to all my family and friends <3
_ I have a nice story to post about a man I met driving down the street who is a father to a 3 year old with C-ACC but Ill leave that for its own post, its deserving_
Araceli
Mommy to the most precious princesses on earth… Hailey 6years and Brianna 3.8years
Friday, March 18, 2011
Lots going on, and LOTS of pictures to show for it!
AAAAAAh, where do I start? I wish I had time to blog daily so that I didnt have to jump around in my posts. Lets see, first Brianna's medical update then I will post everything else going on under its designated pictures.
Brianna is now officially cleared from pulmonary to get her tonsil/adenoid_ectomy surgery (removal of her tonsils and adenoids)... sigh... which is good and bad. Good because that means her collapsed left lung is recovering so well that they feel she is fit to undergo surgery... and those words exactly are the bad part "undergo surgery"... sigh... having to put our sweet child through yet a 4th surgery in her short 3 years of life is hard, very hard, but she will benefit from this and I am thankful for medical science, doctors/surgeons, our CHOC Childrens Hospital and mainly to God. As soon as the authorization goes through for ENT we will schedule her for surgery consult. YIKES! So surgery coming up in the next 2-3 weeks.
Brianna has had many many pulmonary follow ups and now 2 extras since discharge from the hospital Feb 7th. She actually saw pulmonary again 2 days ago and they continue to see improvement, means the Vest and Pulmozyme along with her regular meds are doing their job, which is FANTASTIC! So we will continue to do them as regularly scheduled. The bad part is that now Brianna has PERMANENT DAMAGE to her left lung and brochials... called ATELECTASIS OF THE LEFT LUNG, and BRONCHIECTASIS :( I dont feel like putting their meaning here Im tired of reading about them, you can google them and itll explain them. Basically not the worst thing that can happen, it is expected damange but still hard to swallow that your child now has PERMANENT DAMANGE TO HER LUNG! :( Well treatment for these is continuing the clearing of the lung and preventing and treating respiratory infections ASAP when they happen. Surgery could be a possibility to help repair but its only in severe cases and by how pleased and happy the doctors express themselves about Briannas RECOVERY of her lung collapse I do not believe its anywhere near severe...
What will we do next? Figure out WHY this pneumonia was SO BAD. Shes had plenty in the past, even a lung collapse in March of last year... and it was never so bad, so the big question is "why did it take such a toll on her THIS time... and why did she have SUCH a hard time recovering from it?".... how will we try to figure this out? Infectious Disease Immuno Deficiancy Specialist...... yeah even the sound of that gives me the creeps, but I am hopeful... there is a plan and I feel very good about it. We suspect an immune deficiancy now I am hoping its something we can have a cure/fix to... or treatment I should say like immunity boosters of some sort, I hope that if she does have a deficiancy that its one that we can treat. Prayers greatly appreciated. We had an apt on Wednesday with ID specialty but it turns out that they booked us in a 20 min window and the Dr needs us for 1 hour so they had to reschedule us.... wish us luck.
I think in my last post I mentioned that Brianna was sick again? She received steroids, antibiotics and an additional nasal spray that helped immensly and now shes back to her normal happy silly self. Wheezing and crackling here and there but her doctors said just 2 days ago that her lungs sound clear its all in her nose/throat and she is coughing it well.
Oh yeeeeah... more fun... Brianna is being refered to a Pediatric Endocrinologist Specialist for testing of her pitutary gland to see if she has Growth Hormone Defiancy or if she has something else relating to short stature. They are leaning towards GH deficancy and want to do GH shots... will update more about these later I am looking forward to helping her grow especially in how beneficial this would be to her respiratory health problems but not looking forward to giving my daughter a nightly shot...
During wednesdays visit they scrapped Bris nose again to test for Celiac Disease AGAIN last time they didnt get enough cells to test so the results were inconclusive.
Looks like we have a good treatment plan for the present issues and a good treatment/testing plan to prevent these from happening again and to help her. I am thankful, I am hopeful, I AM HAPPY.
Ok that was most of Briannas updates I think... Now new with the family in general? Hmmm Hailey got a new haircut pics below, she enjoyed her first St Pattys Day at school, she had to get blood work done again to test her cholesterol levels and AGAIN they came out HIGH! :( Normal levels are between 33-115 and hers were 150 they said she is getting close to needing medical treatment (pills) and think its genetic... I am putting family history down on paper for her doctor to review to see if medicine would be good for her just yet or not. We changed her diet long ago so its not that and shes WAY active.... will post more when I know more.
I got a FULL day of fun with my sisters and daughter at Disneyland last weekend... it was so good for me to have some care free fun! It was AMAZING! I love these girls! It makes me sad to know we only have 4 weeks left on our annual Disney passes and that we wont have the funds to renew them this year again but we look forward to doing so soon in the next yr or two :D
Thank you for reading, God Bless you.
A very happy, hopeful, proud mommy. _Araceli Sandoval
(PICTURES BELOW)
*My first time making Mickey Mouse head pancakes for Hailey girl*
*My pathetic attempt of painting Haileys nails pink with green shamrocks*
*We have all been getting pretty crafty around our house, this is Haileys first art project. This one will not be for sale on our site this is a mommys keeper, check out the rest that we will post on www.silverliningcraftcreations.blogspot.com *
*This was my first pot craft creation for my new crafts for sale site www.silverliningcraftcreations.blogspot.com these will go for $15 I will probably spend the weekend making more characters ((( or worrying about the stupid radiation cloud that came from Japan that is over California right now scaring people that they will get cancer, or worrying about the predictors prediction that California will get hit with a massive Earthquake like Japans sometime this week! ugh!)))) *
*Haileys new haircut! She got BANGS! Silly girl... she looks so cute though*
*Haileys bangs before the haircut*
*Haileys first St Pattys Day in Kindergarten* She had soooo much fun*
*aaaaah Haileys Spring school pictures... and the story behind them.... this was the ONLY day I ever sent her to school without combing her hair it was the day after Brianna had gotten discharged fromt he hospital and we had to get up twice for an hour throughout the night to administer IV antibiotics at home so we were tired... come to find out AFTER the fact that it was picture day... wow she will hate me when shes older but she looks oh so cute*
*My poor baby's bloody nose from the scrape test for nasal cells to test for Celiac Disease*
*Bri killing time at the doctors office, this was a 3 hour pulmonary visit OMG*
*My sweet girl was so patient and so good during this loooong 3 hour pulmonary visit*
*Bri Bri girl checking into CHOC Childrens Hospital of Orange Countys Pulmonary Specialty Clinic*
*This kid is an expert at doing meds and play at the same time*
*Brianna has been showing off her American Sign Language lately, she was signing BABY here*
*More sign language, I am so proud of her here she is signing DADDY*
*YAY more sign language, she is signing MORE here*
*Brianna signing ALL DONE in her slightly modified way*
*The hubbys Mickey Mouse pot creation for our new site www.silverliningcraftcreations.blogspot.com *
*Hailey, me and Jessie on Tower of Terror at Disneys California Adventure ride*
*Daddy and his sweet baby at Disney CA*
*My two beautiful babies Hailey and Brianna and my beautiful baby sister Jessie*
*The Serrano Sandoval Family enjoying sunny beautiful Disneyland California Adventure Theme Park*
*Baby sister Jessie and Big Girl Hailey*
*Us girls on Space Mountain at Disneyland! Mayra, Carina, Jessie, Hailey, Liz, and Me*
*My little sister Cari shes so beautiful and Big girl Hailey at Disneyland*
*My pretty lil sissy Jessie and myself at Disneyland*
*The little sisters, Carina and Jessie with my big girl Hailey outside of Pirates of the Carabian at Disneyland*
*All of us girls on Space Mountain at Disney again*
*My big girl Hailey and I at Disneyland*
* Jessie, Carina, Mayra and Liz at Disneyland*
* Skinny butt Bri and her loveys PACIFIERS lol *
* Tiny B *
* Mommy and Hailey getting tag team blood work, its always funner to get your blood drawn together right ? LOL Mommy and daughter blood test *
*Brianna getting her night time meds through her gtube (mic-key button)*
*These are just her NIGHT time meds along with the VEST and CPT but she gets a heck of a lot more vest and breathing treatments throughout the day*
Thats all for now folks hope the Earthquake and possible sunami doesnt swipe out California !
Wednesday, March 9, 2011
Part 5 of todays post, more videos of 3 years ago today.
My sweet chubby girl, I had forgotten how hard we worked for her to hold her hands flat she would keep her hands in a fist all the time and therefore didnt have a grip she would grab her toys with her fists :P I cant say time has flown and I cant say its gone by slow... steady.... with lots of ups and lots of downs. My poor baby.
part 4 of todays post videos of today 3 years ago March 2011
oooh I remember this days....
sort of....
the pain so vivid and real....
the events so faint....
the words out of the doctors mouth permanently indented in my brain....
Part 3 of todays post pics and video 3 years ago today March 2008
I am going through these pictures and videos today March 9th 2011, 3 years exactly from her first surgery... sigh and they are getting to me more than I expected. She was just so chubby and looked so healthy how were we supposed to know anything was wrong with her if the doctors said everything was fine and she looked this good?! :(
She has been through so much and come so far from this day. Even after this surgery and diagnose of Agenesis of the Corpus Callosum at this time, we didnt expect she was going to go through all that she has in the last 3 years, we thought this surgery _recovery, acc diagnose and move on .... little did we know.
March 9th 3 years ago and where we are today. PICTURE OVERLOAD! :)
I am a slacker! Sorry! I have not posted an update in such a long time and I am so sorry for that, things have been very hectic and very crazy. But today, March 9th, I just have to post.
So let me try to go back a little bit. Brianna did not end up staying in the hospital for 3 weeks. She stayed 7 days out of the 3 weeks. The main reason why she only stayed 7 days was because while being in the hospital her doctors pushed the insurance company HARD for approval of the vest and medicines and they approved a 30 day rental through the hospitals equipment (for the Vest) and a 30 day supply of the pulmozyme from the hospitals pharmacy. YAY. The 30 days have come and gone (wow that long without an update, I am terrible so sorry) and we were recently approved for another 30 day rental on the Vest AND another 30 day suppply of the pulmozyme THROUGH OUR PHARMACY! OMG This is FANTASTIC. We were getting ready to make an offer to go half and half on the Vest to the insurance (with the fundraiser money) and pay a months worth of the medicine $3,000!
I may jump around sorry.
Since I mentioned the fundraiser I must mention that with the car washes, donations, fundraiser dance, and i got cha pizza we raised over 16,000!!!! I will take this opportunity to extend my gratitude to EVERYONE involved in the donations events etc thank you thank you thank you this means more than anyone will ever know and we are forever eternally grateful to each and every one of you who donated your time, your money, and extended love and support to Brianna and my family, THANK YOU.
The money thankfully has not been touched yet, and it was deposited under Briannas charity savings account which I will maintain open if anyone would still like to contribute (as some wonderful people have still done) let me know and I will give the info. When the money is used for any of Briannas medical needs I WILL DEFINITELY POST AN UPDATE and show RECEIPTS for whomever is interested.
Ok next. Brianna came home 2/4/2011 after 7 day stay in the hospital with a PICC LINE for the remainder 14 days of antibiotics for those who dont know this is an IV line directly into the heart, hers was 30cm long from her elbow to her heart. We had a nurse train my husband and I on how to administer the antibiotics through her PICC line and we learned very quickly and felt comfortable with doing them at home.
I will post pictures of her line and how we did this at home. The only hard part was getting any sleep they were Q6 (every 6 hours) and couldnt be given more than an hour early or an hour late and she had a 2 a.m dose for the 14 days and you have to wait 30-40 minutes for it to be complete and then flush her line so this was not fun for her or us because she would wake up fuzz and cry and we didnt get much sleep. She was a little disoriented and fuzzy the first 2 days that she came home on the line she didnt understand why she came home with it you could see it in her face she was worried and frightened. She is used to IV lines but also used to having them removed to go home.... sigh.
Since shes had that removed and shes been doing really great (so good she has now been cleared to go into surgery in the next few weeks to remove her tonsils and adenoids) on the vest and pulmozyme (along with the rest of her meds) and her last check up last week her pulmonary said her lung function in her left lung has dramatically improved since discharge! YAY. She was very suprised at how much sound (air) was moving in her left lung and was so pleased with how the vest and meds are working out for her (which is why she wants to continue them perhaps life long).
Unfortunatly Brianna got sick again this week and she is back on antibiotics, steriods and a new nasal spray on top of her other medications to try to prevent this new respiratory infection from turning into a pneumonia or even worse collapse her left lung again while its still in recovery mode... sigh but shes started on meds and we are continuing her vest and breathing treatments and her mood seems to be normal and happy so we have FAITH, as always :)
Next. Ahh the reason for posting. Today marks 3 years since Brianna's (and ours her familys) life was turned upside down and around. March 9th 3 years ago today Brianna stopped breathing and fainted, she had to be rushed to the ER and she ended up having her life saving emergency surgery around 2 am to correct her intestinal malrotation and remove her apendix, this leading to testing testing testing and receiving her diagnose of Agenesis of the Corpus Callosum.... we received anywhere from the worst to the most discouraging information ever at this time the same night... but what they didnt tell me was just how much I was going to learn, and how I was going to learn to love in a much deeper more pure way, that this child was going to completely melt me and change me and our lives and a lot of peoples' around her.
She has over come so so much which I dont have time to go into but you can see in the history of her blog...
I am proud of her.
She amazes me.
I love her so so much since this day 3 years ago this child of mine has endured contless surgeries, tests, procedures, blood work, shots, pokes, hospitalizations, therapies, doctors appointments, and an overload of treatments and medications she is MY HERO, she has come up and out of all this and continues to climb up this rough steep mountain with her own hands and knees basically her love for life is more than my words could ever express, she is strong she is full of life and love for it. she is amazing she is a child who motivates and fills people up with faith and love and hope she re fuels me with energy emotionally physically and emotionally.
I thank God because I know he has been there with her EVERY step of the way holding her hand and never letting her go.
I LOVE YOU BRIANNA! I LOVE YOU MORE THAN LIFE BABY GIRL.
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<3 MY GIRLS MY GIRLS. I LOVE YOU HAILEY AND BRIANNA !
<3 If this caption ends up where its supposed to (next to the dark pic of Bri under the table, she was going around writing on things even under the table to write on the chairs lol.
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Love,
Mommy
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