My Unique Flowers: The Monkey In The Asylum *Day 5* Party Like A Rockstar!

Sunday, May 10, 2015

The Monkey In The Asylum Day 5 Party Like A Rockstar!

Previously .... on the Crazy Hospitalization ....
The Monkey In The Asylum *Day 1-2* ,,,,
The Monkey In The Asylum *Day 3* ....
The Monkey In The Asylum *Day 4*

DAY 3 IN THE HOSPITAL

So .... first off .........

I figure, if I can spend my birthday in the hospital with him last summer, I can certainly celebrate this Mother's Day - ROCKING the hospital room!

I got the best and worst Mother's Day gifts today!!!

Facebook Update: 6 AM Sunday - Mother's Day - Update: So last night Nathan took a bit of a turn. For whatever reason the redness was coming back on his face. Even the white of his eyes again. His blood pressures haven't been real good either. The ICU team was consulted when we were in the ER because they were on the fence of admitting him to the ICU or reg. Ped Room... and the ICU staff thought he could be in a reg. room - however, they have been following and checking in multiple times a day (and night) and they were going to say he's good, he's on the mend yesterday, she said "I'll come back one more time" and then... low and behold, it's no longer "we think he's good" it's back to "yeah, we're worried." He was awake for maybe 3 hours TOPS yesterday, with other mini wake ups here and there to holler at us about pain, potty, or what not - then back to sleep. After throwing a fit for hours in the ER after he couldn't eat or drink - he is only taking a few bites here and there (of mostly fruit) and sometimes I have to threaten to cry if he doesn't drink, and he'll finally drink for me. (He is on maintenance fluids right now.) He got his feed last night and tolerated it. One of his two IV sites blew so he's back down to one. His heart rate has been pretty good.... 100's 110's ... His kidney functions are definitely better. He is still on IV antibiotics. Um..... can't think of anything else to update on. Happy Mother's Day!! I spent my birthday in the hospital with him last year, why not Mother's Day this year!?!? LOL.... Anyway - I am tired. I'm going back to sleep (6:15 AM) ... I got up because Nathan was crying .... yep, going back to sleep.

After today - I cannot even EXPLAIN how much this kid is my HERO!! I am not even kidding.

Okay - so let's get on with it.

Nathan has spent a lot of time teetering back and forth on the line. He'll get better, he'll get a bit worse, he'll get better, he'll get worse. ICU checked on him a few times during the night and they said that they were okay with him - thought they were pretty confident that things were on the up swing. Which was WONDERFUL news!!!

Thank you SO MUCH Canida!!!!

He managed to eat a stalk of celery .... a couple bits of a watermelon .... 1/4 a strawberry ....

And I got the bright idea to color in his pain scale so maybe he'd use it ........ NAILED IT ....

He slept a lot today too - but he was awake a little more. He lost both the IV's that were placed at Harrison at this point. They replaced one in his right hand. So at this point, he has one IV in his right hand.

And then dinner happened and he ate HALF OF A GRILLED CHEESE SANDWICH and drank some CHOCOLATE MILK!!! I was soooooooooooo happy!!!!

If that didn't thrill me to the bone - THIS DID.... he got up and walked down the hall!! He took a break at the half way point...

And then........ I GOT A SMILE!!!! I mean - what could be better!?!?! WHAT? I mean other than going home... but WHAT??? Seriously??

8PM walks (he got up twice to walk. The first time he walked down to the parent lounge, and took a break inside the lounge, and then we walked back to his room. So then he wanted to get up again and walk but I had made him wait for about 20 minutes or so before we walked up and down the hall again, this time it was a little shorter walk, but no break.) .... that turned into 9PM meds and bed.... into about 9:30 Vomiting ... (He is coughing in the picture, I promise) ....

Luckily he fell asleep after he threw up his meds.

I remember when he announced he needed to throw up, he didn't have a bucket and I had rushed across the room because I had one they had given me to put some stuff in. So I literally dumped it out and rushed back to him, and he coughed and in a few minutes the vomiting started.

FACEBOOK UPDATE - 10:37 PM - ‪#‎SuperNathan‬ just took a turn. 10:20 PM Sunday night. Just spent the last hour trying to figure out what happened. (He is coughing, not puking in that pic).... So, 9 PM he got his night time meds and his antibiotic. A little while later he started screaming, he told me he hurt EVERYWHERE (was a 10 on the pain scale) and was itchy. Really itchy. He screamed he needed to poop and we went to the bathroom, he didn't. Got back in bed, he was trembling. After a while his shaking was out of control. Then he started curling into a ball. At that point he was telling us he needed an ice pack (for his belly) screaming it really ... He was an 8 on the pain scale now. Then he screams "I am going to puke".. And about 5 minutes later he was. Doctors were called (I later found out a Rapid Response was called on him). They came in, saw this at full glory. No one knows what is going on. Do a blood pressure and the machine can't seem to figure him out, really confused, goes up - registering a high BP - then down - with a low BP - and back and forth, he's screaming cuz it's tight and hurts... And it registers.... -?-/-?- .... Not even joking. Do it again, same confusion, but this time it's 166/130.... Doc asks him where he is hurting and he yells "I trying to sleep!!!" Doc is like.... Um okay then.... Poor doc. So I start asking him, head hurts, belly hurts, legs hurt, arms hurt ... Everything hurts and he is a 10 again. His heart rate is way up, his breathing is rapid, feeling warm again. Just did his BP again and it's -?-/-?- again... He is miserable. I can really only sit by and watch. It's just not cool. Temp of 100.8 ATM. Mom is freaking out.

He managed to fall asleep.

At this point - his heart rate was anywhere from 135 to 189 - his respiratory rate was crazy rapid... they were trying to figure out what was going on. What caused this --- doing so well --- to crashing so hard. There was some speculation that it may be a reaction to the oral antibiotics they started him on.

Bactrum.

The same meds he had just started before he started to throw up on Thursday - spiked the 105 temp and the red body rash.... could it be an allergic reaction. The one doctor insisted there was no way. Other's disagreed.

Continue Onto: The Monkey In The Asylum *Day 6* Crashing Down Down Down

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Ongoing Fundraising ....

We are currently running a fundraiser for our kids, Nathan and Noah - who both have different rare genetic disorders. Please take a moment and read about them! We are trying to raise money for some things insurance doesn't cover, and to get to a conference next summer (2014) if we can. We are focusing on two things right now, both costing over $5,000. If you can donate, wonderful, every dollar counts and is greatly appreciated. Please click the link and check out our FUNDRAISER.. You can read their stories more by clicking on the page links above...

CALAHAN JOSEPH ~ January 5, 1996

Calahan was a surprise.. My ex-husband and I haphazardly decided to try to have a baby after we got engaged. I was only 18, he was 19 ... and it was silly - I was ready for a baby but he was NOT. Course you don't realize that until you fast forward yourself through life. He was due December 25, 1995 - Christmas Day. He was born January 5, 1996... coming overdue and in at 8lbs 7oz and 20 1/2 inches long.

Pregnancy Complications: (Mom)...Hypertension.... Limited Activity/bedrest, water leaked for a month (Delivered via natural labor, semi-induced, 13 hours 56 minutes, 2 hours of pushing)

Complications at Birth: Broken Collarbone (didn't find out until he was 6 months old) ... bleeding hard to stop after circumcision

Complications Past & Now: Night Terrors starting at 8 months old... nose bleeds & bruising since he could walk... at 2 1/2 he went through a Leukemia Scare (found out he didn't have it via bone marrow testing - very scary!!) ... Diagnosed with ADHD at 4... mild ODD at 5... ITP (Idiopathic Thrombocytopenic Purpura) Bleeding Disorder

May 29, 2009: Calahan broke his left arm in two places after having an accident on his bike.

September 2010: Calahan went through testing and was determined that he has a learning disability called Dysgraphia.

June 2012: Calahan started therapy again, he has severe anxiety issues and mild depression.

February 2013: We have realized that Calahan also has PTSD

NOAH ALEXANDER ~ February 1, 2002

Noah was a baby faught for... Found out at 4 months pregnant that he has a rare genetic disorder called MOSAIC TRISOMY 16. He was due St. Patricks Day 2002. He was born February 1, 2002... coming in at 1lb 12.2oz and 13 3/4 inches long. He was a fighter from the moment of conception.

Pregnancy Complications: diagnosed with rare genetic disorder MOSAIC TRISOMY 16 @ about 18 weeks, severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid
(Mom) Hypertension... Pre-Eclampsia ... Limited Activity to complete Bedrest, (Delivered via emergency c-section)

Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...

Complications Past & Now: Small size (At 5 he was 30lbs), mildly physically delayed (mostly due to his small size)... he has dealt with and continues to... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone (very bothersome)... hearing loss in his left ear (hearing seems to have gotten worse - 2007)... surgery to correct the hernias @ 6 months, surgery to correct the hypospadious @ 13 months, surgery to put tubes in his ears at 2 years.. went through various gastro testing due to mysterious vomiting issue...

April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure, he almost died.

April 2009 - Noah's heel cords are very tight again, and he needs stretching out every day. If his tone is not better, then by early next year he'll have to be casted for 3 weeks.

August 2009 - Noah has been having increasingly more blood in his urine showing that his kidneys are getting worse. Right now the kidney tests are coming back okay but it's being kept an eye on.

March 2011 - We found out his tone issue isn't just below his knees but effects his whole leg, so they took casting off the table. Also, he doesn't really let anything hold him back. He doesn't really run, he sorta side skips quickly sometimes, and there are times he will actually run, but over all, Noah is just Noah. His kidneys are just something we're going to have to keep an eye on. Noah ended up being hospitalized for a night at Seattle Childrens when he had Influenzia A ... it was attacking his kidneys and he was spilling out a large amount of blood in his urine, his kidney's bounced right back but it was a scary moment. His hearing seems to be getting worse so he's got some hearing tests coming up.

August 2011 - Noah fell down the stairs to our apartment and broke his nose and had to have surgery to fix it. He couldn't go outside and play for awhile due to everyone being afraid he might hit it and trying to avoid another surgery.

September 2011 - Noah failed his hearing test in his left ear. Not only is it typical hearing issue but it's in his ear bones too. So it's a lifetime loss, it's not just because he gets fluid built up. So he was fitted with a hearing aid on his left ear. He was super excited to get it, but once he got it - it was very weird and sensory issues ... it was overwhelming for him. So he's only wearing it for school at the moment, even that was a fight.

NATHAN PATRICK ~ April 19, 2007

Nathan was a surprise.. My Husband & I were going to start TTC the month following the month we got pregnant... we found out at 20 weeks, there were complications... with another pregnancy... needless to say, I felt useless and broken. He was due May 13, 2007 - Mother's Day. He was born April 19, 2007... coming in at 3lbs 4oz and 15 3/4 inches long.

Pregnancy Complications: diagnosed with 2 Vessel Umbilical Cord, IUGR, Dandy Walker Cyst/Varient, ..(around 20 weeks pg)
(Mom) Fibroide Tumors, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but kinda last minute)

Complications at Birth: Low Birth Weight @ 36.5 weeks, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Dandy Walker Variant, Soft Cleft Palate/High Palate, Heart Issues (gotta look it up)

Complications Past & Now: Came home on an NG Tube (ended early June '07)... Feeding Issues .. Oral Sensitivity... Torticollis ... Hydrocephalus (August '07, Sept '07)... a Bifid Uvula (explained to me as an upside down heart shaped uvula), he also has some tone issues where they are very loose. Undescended testicles....Aortic Septal Defect...

9 months old: Poor kid has his first Ear Infection, pneumonia, his first diaper rash AND cut TWO teeth all in ONE WEEK! Poor baby!!!

updated April '09 .. there are now suspicions of Russell-Silver Syndrome, hypothyroid, and he has been showing some signs of some sort of Autism (has genetic tests pending, along with more blood work to be done and a evaluation with the Autism Clinic pending) ... He has officially been diagnosed with Failure to Thrive. He also has mild Scoliosis, and is most likely going to start HGH (human growth hormone) in the Fall.

updated August '09 ... All of Nathan's genetics tests have come back fine, including the RSS. Not sure what that means exactly since I read that the genetics test may not be 100% ... and the way he seems to fit. However at this point, it just seems to be one more diagnosis in a long line. He had tubes put in his ears in June and seems to be doing much better with hearing and slowly progressing with speaking. His appointment with the Autism Clinic is Sept. 16. It was determined that Nathan would need more testing before officially diagnosing him with "Autism" however there is more signs there to warrant further testing.

update November '09 ... Nathan had his first hypospadious surgery, and had his undescended testicle on his right side moved down to where it is suppose to be. It went well for the most part, but he came home with a catheter which had to stay in for several days. He'll have to have the second surgery in about 6 months.

Update April '10 ... Nathan has officially been diagnosed with Russell Silver Syndrome

Update August '10 ... Nathan has been going through a lot. He had started Autism testing early in the year, but we stopped due to the fact that we were making a big move from WI to WA State... we have re-started the process of the Autism testing here. We also have talked to his new Urologist about the 2nd surgery for his hypospadious, and in addition, he will need a 3rd surgery for his undescended testicle that has gone back up, they aren't sure if they can try to move it down again or if it'll have to be removed. We also ended up going to the endocrinologist for his hypothyroid and to discuss starting HGH (human growth hormone) after his official diagnosis of the RSS. The process has begun and we'll be going to "train" to give him the daily injections soon.

Update September '10: So ...he had his 2nd hypospadious surgery, and it ... for the most part ... went well, but we had the blessing of dealing with another catheter ... at least this time we didn't have to deal with the bag and whole deal, he just had the tube there so it could leak into the diaper. We actually had to double diaper him, the inside diaper to catch the poo and there was a hole for his plumbing to be supported (due to the surgery) where it could leak into the outside diaper. It was a very very rough week after the surgery, and even after.... but we managed, and survived. He was in a lot of pain. A little while after, we discovered that he had a couple of holes (fistulas) open up and so he has urine streaming through a few holes... so, hopefully he doesn't need a 4th surgery! We'll see though. But ... Part 2 is done! He also had dental surgery to put caps on all of his teeth due to them all rotting thanks to his high calorie diet. :/

Update January 2011: It's official, Nathan has been diagnosed with Autism (specifically, PDD that they believe is due to his multitude of medical issues) ... which I completely agree with. IN addition to that, it has been mentioned based on his last MRI that he is actually MISSING some of his cerebellum, specifically the Vermis .... and that he may not have Dandy Walker, but rather Jouberts (pronounced Joe-Bear's) Syndrome... we are seeing one of the nations #1 expert genetics Doc about it. So we shall see..... we... shall... see.... (no Jouberts Syndrome, sticking with Dandy Walker Varient & RSS)

Fall 2011 ... We've seen cleft palate specialists and they said that if he failed his hearing tests (which he did) that he would have to have surgery on his sub-mucus cleft palate. Also - a speech lady came in, she feels he has a speech disorder called "Dyspraxia" ... and she feels he's going to only be able to communicate properly through communication devices.

December 2011 ... Nathan had a one hour EEG done and then a 24 hour video EEG ... we recently saw Neuro and found out everything is a-ok :D No seizure activity found.

May 2012 ... My amazing Nathan has been through a lot this month! He has been approved to get a communication device, which we won't get for 4 to 6 months (thanks to insurance red tape) and on May 25th he had surgery to repair his cleft palate, got tubes in his ears again, and his uvula was patched. Now he's home and recovering!

September 2012: After a little debate and several failed hearing tests, Nathan was fitted for hearing aids in both ears. He will be getting them in November.

KAEDYN PHILLIP RUSSELL ~ September 9, 2008

Although I we knew we wanted another baby, that pregnancy test turning positive was a shock. Things were crazy after we found out that we were pregnant again. Dennis was worried about money and my health, and everything else. At 18 weeks we got the perfect amnio results showing everything was genetically fine and it was indeed our FOURTH boy!! I did get sick again, but I felt GREAT! For the first time I developed GDD, and I flirted with Pre-eclampsia like usual. But over all the pregnancy was great and I even ended up going into labor on my own 10 days before his September 19th 2008 due date. We had gone in for an amnio to check his lungs to see if he could be delivered and found out I was having contractions every 2 minutes and was 3 cm dialated! Oooooh boy! Things moved quick from there, and I was in the c-section room before I knew it. Kaedyn Phillip Russell was born September 9th, 8lbs 3oz and 18 3/4 inches. He started crying before he was even out of the womb (or had his mouth clear!) ... and he showed the world he had a GREAT set of lungs by not stopping until he was in my arms. He also baptized everyone showing his boy parts worked REALLY well over and over and over.. just when you thought it was done, it started back up!

Pregnancy Complications:
(Mom) Gestational Diabetes, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but moved quickly after found out I was in labor)

Complications at Birth: Jaundice

Complications Past & Now: None really - yay!!! He has eczema and that's about it.

January 2010: Kaedyn had a scare with his heart last fall. His murmur got load and everything turned out okay but it did freak Mom out a lot. And his eczema is horrible. It's full body and I can't seem to get rid of it for him. Now we've been back to the DR about it and got a stronger ointment to put on it (with steroids) and a ton of different lotions we bought to try to see what helped him. After only a few days on the new ointment he's much better.

April 2012: Kaedyn is taking after me by more than just looks! He has apparently grasped my allergies too. After a few days with extremely bad hives, he had to go into the allergist. He definitely has allergies, and I suspect it's to more than just dog, cat and grass ....

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Sunday, May 10, 2015

The Monkey In The Asylum *Day 5* Party Like A Rockstar!

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The Monkey In The Asylum Day 5 Party Like A Rockstar!