Wednesday 11.17.10
Blake woke up at 5am screaming, not the I'm-hungry-come-get-me cry, but screaming! This went on into the afternoon. Being a first time mom - and not knowing what the heck I'm doing - I decided we needed to go to the doctor, maybe it was his ears?! (and since we were going on Seattle on Sunday, I didn't want him to have a raging untreated ear infection while flying.) But wouldn't ya know it...as soon as I made the appointment, he stopped screaming and turned back into the happy Blake I know. I then attributed the crying to teething, although his gums really weren't swollen. (remember...first time mom, okay?!)
Side note: Having a kiddo with hemophilia you always assume the worst. Anytime they aren't acting like themselves, you automatically think, "He's got a bleed." Since this constant screaming was just like how he acted with his previous bleed I was sure he had to be bleeding somewhere. But after checking him over, I couldn't see a thing...besides some superficial bruises.
Thursday 11.18.10
Blake was a little whiney, but NOTHING like the previous day. He played like normal and got fussy when tired or hungry...all normal for him.
Friday 11.19.10
Blake and I got a tour of the fire station with a friend's joy school group. Blake was happy and silly with the kids...until the engine's siren came on! See his grumpy face? =[
As the day went on, Blake continued to be sad. His cry was constant, he was clingy, and wanted to be held with his head on my shoulder...totally opposite of the Blake I know. Again, I was worried, so we went to see the pediatrician who said his ears looked fine and as far as she could see Blake was well. So, first-timer over here...thought maybe it really is just his teeth...and if this is teething, this stinks!
That night we had dinner at the Nydegger's and Mr Blake continued to scream. He'd have small moments of smiles and laughs followed by long bouts of crying. I kept thinking, "Can this really be teeth?!" Before we left for home - because he wouldn't stop crying - I noticed Blake's shoulders were in shrugged and even said to Kellie, "It looks like he doesn't have a neck." Not thinking much about it we left. At home Blake nursed and fell asleep.
Around 9:30pm he woke up with an ear piercing scream. I ran in thinking he'd hurt himself...scooped him up and tried to calm him down while he clung to me and cried. About this same time I noticed he wouldn't look up, his chin stayed down toward his chest, and his shoulders still shrugged.
Worried, I called Rustin, (who had been out of town in Idaho since the beginning of the month) my mom, the pediatrician, and then the on call hematologist at Oakland Children's. The hematologist said go right to ER...so off to our local ER (my work) we went.
When the doctor saw Blake's limited movement paired with hemophilia, I could see the concern on his face. He left and we waited. Then a nurse came in and said, "The ambulance is on it's way." Wait...what?! Ambulance? Apparently, the ER doctor had spoken with the hematologist and decided we better head to Children's.
Us, while we waited...see that little face, that's not my Blake.
The ambulance arrived and away we went with the most nice paramedic guys. They were really so sweet with Blake. Blaker boy fell asleep soon after we left and managed to stay asleep even though we hit EVERY pot hole from here to Oakland.
When we got to Children's ER, I noticed the staff was wearing masks when in our room...they said they were ruling out meningitis because of Blake's stiff neck. Meanwhile...Blake had stopped crying but would cry if we laid him flat ...his preferred position was still on my left shoulder with his chin down. (I loved the snuggles, but not the reason for the snuggles!) Blake's IV was started, he was given factor, and also sedated for a CT of his stiff little neck.
Then we waited...
and waited...
and waited.
Finally the nurse said Blake was going to be admitted for observation and that his CT was negative. The CT, however, had not been officially read by a radiologist.
Saturday 11.20.10
By 6am we were in our room on the 5th floor...after spending a loooong night the ER. I was exhausted, Blake was exhausted, and we still had no answers! A resident rounded and said she thought Blake stiff neck was caused by a muscle spam, I just smiled and let her speak...but I knew this was no muscle spasm! Eventually, the hematology attending, Dr. Singer, and her residents came to see Blake. She told us the CT was fine so far and they really didn't know what was causing the limited range of motion. I made it very clear that there had to be something wrong...this was not Blake...he is not a sad and snugglie boy and asked if we could maybe do an MRI? She said it may come to doing an MRI, we were waiting for a radiologist to officially read the CT. (ugh...darn weekends with limited staff!)
So Blake and I tried to make ourselves at home while we waited some more.
The sweet nurse that Saturday morning gave me a toothbrush, soap, and washcloth...she must have noticed I felt disgusting. After, I washed my face and brushed my teeth, I felt a little more like a real person. Oh but I wished the ambulance could've stopped by our house so we could've grabbed a few more comforts of home! Poor Blake barely had any toys.
But then again...Blake had a water bottle and I had my phone loaded with Baby Einstein...he was pretty entertained.
My wonderful mom got ahold of my Relief Society president from church and told her what was going on. Soon she and her sweet husband were at Blake's bedside with snacks, a car for me to use, and to give Blake a blessing. I will forever be grateful for them that day...I know the blessing Blake received that day aided in the rest of his hospitalization!
Dr. Singer made rounds again later in the day and said the radiologist had read the CT and saw a little area he wanted to look at closer, so they were ordering an MRI. YAY!! I was hoping now we'd have some answers. (I would also like to mention...MRI's usually aren't done on the weekends, said the nurse, but just so happened that Saturday a MRI tech was in house, as well as an anesthesiologist! Lucky? No...blessed!)
For the MRI, Blake had to be perfectly still, so he was sedated for the 40 minute test.
I waited.
40 minutes turned into 50 minutes...then Alex, the hematology resident sat down next to me and told me the news. He said Blake had an epidural bleed in his spine and the radiologist was speaking to the neurosurgeon. WHOA! We now had an answer, but I had a billion more questions.
Is Blake going to be okay? Neurosurgeon?!! How bad is the bleed? When/how can Rustin get home? How did this happen? Why was this happening to my little guy? ? ? ? ? ? ? ? ? ? ? ? ? ?
When I got to see Blake again, he was in recovery. His eyes were closed and he was calm. When I got close and said name, he opened his sleepy eyes and smiled that big gummy grin...and then I knew everything was going to be okay.
Love this clip...loopy and goofy, just like his dad.
While in recovery, Blake got more factor...a double dose this time...due to the nature of his crazy bleed. (I am so thankful for factor that helps this little man clot!) Then we were off to our new room in the pediatric intensive care unit.
In the ICU, Blake had new gadgets attached to him, which he was constantly playing with and trying to eat...Mr Curious! As you can see...he was a bit more happy! When we were settled in, Dr Sun, the neurosurgeon called and told me about the bleed, AKA: hematoma. There was no spinal cord compression which meant no surgery! He went on to say there were no activity restrictions for Mr B and that he would closely monitor Blake over the next couple days. What a relief!
Blake got a lot of attention in the ICU...med students, residents, fellows, attendings, and nurses! I think he was loving it. Everyone thought he was so cute and smart! ("DUH...I know!" I thought.)
To save Blake from multiple pokes for frequent lab draws...the doctor ordered for a second IV site...which turned out to be a central line in his neck. =[ They kicked me out for the procedure and when I came back I could hear Blake crying from the ICU doors. =[ That is the worst...hearing your kiddo cry because of pain and/or fear. Ugh...hated that! After some snuggles...he went to sleep...so cozy!
The doctors were really surprised with Blake and this crazy bleed...especially because there was no recent trauma, other than the fall off the couch 10 days prior. So, Dr. Singer, along with Dr. Matsunaga, our hemophilia doctor, decided to treat Blake with factor every eight hours to allow the bleed to stop and the blood to reabsorb. We were now on the road to recovery!
Sunday 11.21.10
Rustin got home on Sunday!! His amazing parents trudged through the snow and icy roads so Rustin could be with us...THANKS so SO MUCH! It was so fun to see Blake's reaction to seeing his dad...his best buddy was home. And I was thrilled to have him by my side.
Once Rustin got settled in...I rushed home, in the car that my sweet friend Jennie let us borrow...showered, packed bags, grabbed the camera, and got a bin full of toys for Blake. Then it was right back to the hospital.
That evening...one of the nurses got an order for us to leave the unit and go for a walk. It was SO NICE to just be us three. We could tell Blake was thrilled with the change of scenery too...a much needed outing!
isn't he adorable in his hospital jammies?!
Blake was loving the lights. and LOOK, he's tilting his head back!!
We ended up in the hospital chapel, it was quiet and secluded. Blake was in heaven crawling on the couches and being free from 'the cage' (his metal crib.) While he crawled around and played with dad, I laid my head down...and woke up two hours later alone. Uuuuuuh...I wandered back to the PICU to find Rustin and Blake playing. Did I mention HOW NICE it was to have Rustin back?! LOVE HIM!
Monday 11.22.10
Blake's turned 8 months today - what a way to celebrate...in the ICU.
Blake's neck range of motion continued to improve each day and every time the doctors rounded they too could see the improvement! During one of their rounds, Blake was watching a movie on my phone and they had me raise the phone up in the air to watch Blake tilt his chin up and head back...we dubbed it "The iPhone Test." And each day after we used that as our gauge!
We were so happy it was finally Monday...normal work day which meant we got to see our hemophilia nurses and doctor! We learned the plan for Blake was to get his factor levels with a certain range, >50% at it's lowest, insert a long term IV access device, then send us home with daily treatments . Rustin and I had decided a portacath would be best for us and our active little man. However, the surgeon said Blake was too small and needed to weigh at least 10kg...he was only at 8kg. So, a PICC line was scheduled to be inserted on Tuesday.
In a previous post, I think I mentioned how Blake loves to tap everything with his right hand, using it as a drumstick. Well, since his IV with arm board was on the right, he bashed - not tapped - everything with that arm hand! You had to watch out once he got swinging!
Blake was finally able to take a bath today! One of the things Rustin noticed when he got to us was that Blake didn't smell like Blake. Instead, he smelled like hospital laundry and sterile gauze...we needed our clean baby-lotiony boy back!
And here he is!
PICC line day!
At 9am we were kicked out for Blake's PICC placement. We left him surrounded by strangers...it was terrible. We were told it would be about 1-2 hours until we'd be able to snuggle him again, so we went to the cafeteria to get breakfast. Around 11 we checked in, and they were still at it.
So we waited.
At noon we checked in and were told they had to take him to radiology, but that everything was okay.
We waited some more.
At 12:30 we happened to check back in and we could hear Blake was back and screaming. His eyes were so so puffy and looked like he'd been crying for a long time, plus his little voice was so horse! =[ The nurse said he needed a lot of sedatives to keep him calm during the procedure. I could just picture Blake laying there with these strangers, being scared and crying...I was sick. I wish we could have stayed with him!!
The doctor came by soon after and explained they had a hard time getting the catheter to curl the right way, so they took Blake down to the cath lab to confirm placement using fluoroscopy. The good news is they only had to poke Blake once! I was just sad he was so sad.
See those puffy eyes. Poor guy.
Here's the PICC line (under that stretchy stuff on his right upper arm)
His IV in his hand was discontinued so he could munch on his favorite thumb again! (and no more deadly weapon)
See Blake's new trick...he learned to pull himself up to his knees. I think being in that darn cage a lot of the day helped speed this skill along, he wanted out! My favorite was how move his hip thrusts once he was up...so silly!
Wednesday 11.24.10
During rounds, the residents called Blake their happiest patient. It's been so nice to see his little personality return as he's feeling better! To the staff in the ICU Blake is known as Mr. Flirt. He loves to have our curtain open so he can watch the goings on within the unit...and of course smile and giggle at everyone that walks by. The nurses also mentioned they've loved having him as a patient...they usually don't get to interact this much with their critically sick kiddos.
In the afternoon, we were moved to the hospital's hematology/oncology unit. We were sad to leave the amazing staff of the PICU, but happy that we were another step closer to going home! Plus our new room was much more spacious and quiet. (however, Blake missed all the attention) After our move, Blake's treatments were changed to every 12 hours instead of every 8 because his factor VIII levels were almost 300%. (now...I don't understand how you can get more than 100%...but apparently you can...and a concern with factor levels this high is clot formation..thus the change in frequency.)
Thursday 11.25.10
We celebrated Blake's first Thanksgiving in the hospital. (oh...did I mention how Blake and I were supposed to be in Seattle visiting grandma and grandpa for Thanksgiving, darn it!) Here's our turkey family we made at the hospital...I know, I know...they look more like peacocks but they made our room festive! Words cannot express the gratitude we felt during this crazy week...gratitude towards the hospital staff, doctors, friends and family, and the prayers offered in our behalf! We really did feel blessed despite our long hospital adventure.
Blake's neck range of motion was basically back to normal...maybe slightly stiff, but purty darn close! With treatments still every 12 hours, we did a lot waiting. We kept ourselves busy playing with toys, napping, dancing, looking out the window, and singing songs.
During some of our downtime we go to hangout in the unit's playroom. Blake was in heaven! There was a play area he could crawl, a craft area where he I made our sweet turkeys, and kids galore to watch run around (Blake's favorite!)
Around noon, the hematologist came by to see Blake and noticed he had a runny nose and cough (that developed while in the hospital!!), so he put Blake in droplet precautions, meaning he was stuck in the room! This happened just after we talked with our nurse and she said we could take Blake to the cafeteria for our turkey lunch. =[
So we enjoyed our Thanksgiving meal at Blake's bedside.
Blake enjoyed his sippy cup...while eyeing our food and saying "num, num, num!"
Our roommate was discharged earlier in the day...so we had the room and giant window all to ourselves! Blake loved watching the cars and BART zoom by and we even had a view of the San Francisco skyline - if you squooshed your face against the window and looked right. It looked like a beautiful day outside...we enjoyed it from room #5324.
Today Blake got another bath...which was a challenging because his PICC line must not get wet. And since this boy loves to splash in the water, baths are definitely a two person job! After his scrub down...he smelled so yummy!
He is one tough kid. Isn't he looking like a little boy...no more baby.
These next few photos are how we spent the last hours of our Thanksgiving. Poor Blake spent lots of time in that cage...but it was really the only place he could crawl.
And we spent lots of time laughing at our reflections in the window.
This may be my favorite pic...thanks iphone.
Friday 11.26.10
Today we anxiously waited for our doctor. It was rumored we'd go home! We even started taking things to the car...at one point I told Rustin it was going to be a pain if we really did stay another night.
We waited.
And we waited.
At 10:00 pre factor VII levels were drawn, factor was given, and post factor VII levels were drawn.
We continued to wait anxiously.
Finally...we saw the hematologist, who said Blake's factor levels before his dose was around 30%, lower that she'd like. Ugh. But...she said the dose ordered for home with be fine and we'd be able to go home today. YAY!
As we drove home that evening I thought about our week in the hospital that seemed both so long and so short at the same time. I thought about the love and support we felt through visits, texts, emails, and phone calls. I thought about how sad and miserable Blake was, and how happy and better he is now. I thought about the things I was thankful for...
- Rustin, he's one amazing husband & dad
- Blake, and that he's back to his happy self
- Doctors, good doctors who know their limitations. Doctors who listen to a worried mom's concern. Doctors who know how to fix sick kids.
- Nurses, there sure are those who are made for the job and they make being in the hospital okay. The PICU RNs at Oakland Children's are fantastic.
- Medicine, that has helped make Blake clot normally, allowing his bleed to resolve and heal; also getting him back to his regular self.
- Family
- Friends
- Ward family, their support and prayers have strengthened us.
- Cell phones, that allow us to keep in touch, document the happenings of our day, and entertain a little boy
- Cleanliness, after going waaaay too long, Friday - Sunday, without showering.
- Airplanes, so Rustin could get here quick.
- Family House, the place we made our temporary home where we slept, showered, and got food from.
15 comments:
Phew, I had no idea you were in the hospital for so long! We're so glad to hear Blake is all back to normal.
I'm sorry you had to go through all that, but I am glad that everything turned out well in the end. Thank goodness for doctors who know what to do!
wow u guys are AMAZING PARENTS!! i cried thru the whole story and i cant only imagine how you weren feeling. He is one of the sweeties, most blessed big boy in this earth, he got amazing parents, great doctors and a beautiful smile that can light the sky!! he is such a tough and strong boy!! we love you guys and are greatful that things went well and he is back to his happy self!!let me know when we can stop by the girls want to bring him something!
same here with the crying part. I wanted to scream every time you were "kicked out of the room!" That would be torturous to a parent.
I'm glad everything was okay in the end!
I am also VERY impressed with your journaling of this experience. This is a treasure to have!
WOW! For you to go through that for so long by yourself, you are amazing Lisa! But I agree with you, Rustin is an amazing dad and your family and his are just awesome to have helped all that they could from so far away! Thanks for the journal. It was nice to hear everything that was going on! I am glad everything is back to normal!
Wow. Not a dry eye here! I am reading this to Josh and we are both tearing up! It's so sad to see your baby in the hospital. I'm sad that he had to go through all of that and be left alone with strangers at times to feel fearful! BUt I'm so grateful for the blessing you received with the doctors too!!! THat is the worst tug on a mommy's heart! GLAD THAT YOU ARE HOME!!!
That is SO hard. I was teary through this whole post and I am so glad that Blake is okay. It is SO hard to see your baby go through so much and not be able to explain why they are scared, hurting, or alone. I am so impressed with you and Rustin and your attitude and optimism through the whole scary ordeal. And Lisa, I bet you are one of those amazing nurses made for the job.
WOW!! I can't believe all that you have gone through in just the eight months of being a parent. I am so happy that all is well for the Stephensons this week and hope for a hospital-free Christmas for you!
OOOOHHH Leese... :( I'm so very sorry you've had to go through all of that with your precious lil' munchkin. There's nothing harder than watching your lil' one struggle in the hospital. WE LOVE YOU GUYS! I love that lil' blakey boy so very much and glad you guys are home, safe and sound!
I'm so thankful Blake is ok. Can't imagine going through all that. So glad you are all together at home. I love you Lisa! You are a perfect mommy for Blake and a perfect wife for Rustin.
You are so strong!! All of you Stephenson's.
You are such great parents.
It hurt my heart when you had to leave the room!!! I can't believe they had you do it....so hard!
Thanks for the updates while you were there. You were so busy but I'm glad things are on the up and up!
Can you believe these boys are almost 1???
Thanks for journaling your hospital saga! We are so glad all is well and Blakey poo is ok. He is such a good looking kid! I know you know that.
You're awesome, Rus and Lees!
Oh man! the pictures and your recap had me teary eyed. Your little man is just so darn cute and I kept imagining it was my little dude.
I remember with my sister spending months in the NICU at a time and how even though the nurses and doctors were all so nice we still just wanted to be home.
Glad that he seems to be on the mend. You amaze me for sure!
let me know if you need anything from me EVER. I know that might sound strange but really don't be afraid to take me up on this offer.
Okay, just now catching up on blogs...wow! I mean, WOW! Love you guys!!!!!!!!!!!!
i don't get over to your blog enough girl!
so i read this and cried because my little forest was in the hospital for just under a week and it was so so hard. but now he's fine. :) i'm so sorry blake had to be in the hospital. i am so glad he is doing better at home!
he is such a cute little guy.
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