Sidenote: We are playing around with the pictures and
layout of the blog so it may look different from time to time. The skyline
picture was taken from the roof of the parking garage as I was leaving the
hospital. I love this city.
WOW, it has been two weeks
since our last post and we have lots of updates. I will try to keep it as short
as I can because I have been told I am “very detailed” when I write. Pretty
sure that is code for “do you ever stop talking/writing” . . . nope.
Wednesday, 5/16
Right as I hit publish on
the previous post we had some huge changes to our story. On Wednesday the Nurse
Practitioner for the Pediatric Surgeon (Dr. C, the man who will put in JD’s
G-Tube) came by to chat. After introducing herself she said we could discuss
JD’s upcoming surgery to which I said “great, would you mind coming back on
Friday afternoon when my husband is here so we can both talk to you.” She
paused and said, “well we can chat on Friday but that is the day James is
scheduled for surgery.” WHAT?!?! Considering we have been asking to speak to
someone regarding the G-Tube surgery for a week with no luck a surgery
scheduled for two days time was quite the shock.
Needless to say I was taken
aback as was the NP who thought this was going to be a quick stop by. I told
her we would not be ready for surgery on Friday if we did not have the chance
to speak to the surgeon prior. To her credit she said if we were uncomfortable
we could push it back but we at least know he is on the schedule for Friday.
She left me with a packet explaining the G-Tube and told me she would come back
to discuss in more detail. Guess what, she never came back.
Frustration and nerves were
filling my emotions as Nate and I talked that night. Neither of us would be
comfortable with surgery on Friday without talking to someone in more detail.
In our minds the surgery would be canceled for Friday unless someone convinced
us otherwise in the next two days.
Thursday, 5/17
Happy 4th Anniversary
to us!
Nate went to the hospital
early Thursday morning as he always does and was able to schedule a consult with
Dr. C. A last minute conference call with the surgeon had me running around
just like my last minute client calls use to do. With Nate at the bedside and
me at home with Super Why playing in the
background we discussed G-Tube surgery. To ensure I stay away from the “very
detailed” label I will give you the outcome. Dr. C recommended we wait until JD
gets a few more kilos on his body and few more months under his belt before we
do the surgery.
Hmmmm, on Wednesday we were
full speed ahead on the surgery train expected to arrive Friday and yet on
Thursday we were asked to get off. Why was the team on board with the surgery on
Wednesday but on Thursday everyone was head nodding with this change?
I needed to discuss this
change with Dr. D, our pediatrician, as he was in agreement with the G-Tube
from the start. After speaking with the team, Dr. D agreed it would be best for
JD to wait until he was bit older to have the surgery. With JD’s growth and
weight gain the surgery was not a need to
have at this time. Rather than put him under anesthesia this early we
should wait until he was older to make it easier on his little body. UGH.
Every reason we were given
makes perfect sense; yet, I was really looking forward to getting the OG tube
out. JD is not a fan of the OG tube and his feedings with the bottle are going
okay but I believe they would be better without the tube in his mouth. Plus,
the doctors don’t like sending kids home with an OG because it is easier to
pull out, meaning we would have to put it back in at home (scary). The other
option is the NG tube (through the nose) but with his cleft palate it can get
caught up and cause more problems. In my mind neither option sound optimal to
me.
Ultimately, we decided to
wait a few months to be reevaluated before receiving the G-Tube. I will not go
into the ridiculously pointless conversation we had with one of the doctors but
while this means we have to come back for another extended stay it also means
we are ready to chat about discharge.
Week of 5/21
Last week was spent trying
to nicely get the doctors to nail
down a general date for when we can be discharged. We continued to nicely remind the doctors with the move
coming up on June 9th there really is no reason to keep JD at the
hospital. He is tolerating his feeds, growing, and extremely stable with no
special treatments needed. Why would they want to move an extra kid that does
not need the help? And each time we say something the doctor ever so smugly
says “if he needs to be here we will not rush him out” (I may or may not like
the current Attending). I get it but COME ON we are only waiting for services
to clear him. If something is wrong, please by all means keep him here but if
we are only waiting for ophthalmology to check his eyes one more time lets get
on with it.
Don’t get me wrong; I want
to make sure he is healthy and ready to come home. Plus, having two kids at
home with me will be a challenge but we would like our family of four to be
together. Everyday I look forward to the moment Connor gets to meet his little
brother. When he sees a picture he shouts “JD” or when you ask who his little
brother is he knows “JD” but yet it can’t be real for him until he is actually
home. Can you tell we are excited to bring James home?
As a way to keep us happy
(or so I think), they have moved us back into our favorite room with the view
and natural light. Oh how it makes the days so much more cheerful.
Discharge
Now that we know we are
going home with an OG tube there are few more things we need to learn prior to
leaving. Over Memorial Day weekend Nate and I checked a few things off our
list.
CPR – we took a class before we had
Connor but we wanted a refresher
OG Tube Training – before we can go home with JD’s OG tube we need to
learn how to change it (scary). Both Nate and I have to “pass” changing the
tube twice before we can leave. It is not hard and I know it does not hurt him
but I dislike feeding a tube down my little man’s throat. If it comes out at
home we will have to Rock, Paper, Scissors to see who has to put it back in
(although I am sure Nate will be super dad and be the one to put it back in)
Endocrine
Labs – sent out on Tuesday, 5/29
Echo – completed Tuesday, 5/29
EKG – completed Tuesday, 5/29
Baseline EEG - completed Thursday, 5/31
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| The more electrodes they use the smarter the child |
The remaining items:
ABR – hearing
test
·
Ophthalmology
Exam
·
Car Seat Test
·
DVD – every
parent needs to watch prior to taking their child home
As we mentioned our fabulous
Resident, Dr. N, put together this list as well as started making all of our
follow-up appointments (12 and counting) and OF COURSE Friday was her last day
on our rotation. Not again! She promised me the new Resident would be even more
detailed . . . we will see.
Thursday, 5/28
Today felt like the last day
of freshman year in college. JD’s new BFF (Little J) was discharged. After
being moved into the loud, cave room we starting chatting with the family
across from JD. Little J’s mom was at the hospital even more than I was so it
was nice to have someone to talk while sitting holding our kids for hours.
Like I said, it felt like
college. Little J has been at Children’s for awhile so I was extremely excited
they were going home, yet, I was sad I was losing my mom friend. With an
exchange of emails and phone numbers and a “stay in touch” I was left wondering
if we would actually get together in the summer (we have been texting so maybe
we will “see you this summer”).
With Little J leaving it
made me realize how close we are to taking JD home. Oh. My. Goodness. How am I
going to have two little ones at home all day? Excited, nervous, anxious,
thrilled . . . was how I felt all weekend.
Memorial Day Weekend
Another fantastic weekend in
Chicago!
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| Family run to the Farmers Market |
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| Connor used daddy's head as the drums |
Saturday Farmers Market with
Connor
Sunday night dinner with the
family then afterhours with JD
Monday Nate passed one OG
tube changing
But best of all, we started
discussing discharge. No one actually likes to say the word H-O-M-E because
they don’t ant to jinx anything but everyone seems to agree it should be early
in the week of 6/4 . . . squeezing it in before the move.
Just to keep things exciting
and dramatic most of the kids who get a discharge date tend to have an
“episode” before leaving. And our little munchkin was no different. In the 56
days JD has been at the hospital his heart rate has never dipped. . .but on
Monday he had a Bradycardia (a slowed
heart rate of less than 80 beats a minute – more info in Medical Jargon) with a Desat (a blood oxygen level drop). The
episode occurred while we were moving him, which could have caused the drop due
to bad positioning of the collar, but he did “gray out” a bit and the heart
rate dipped. It sounds scarier than it really was because he cried the whole
time so we knew he was getting oxygen but he has never dropped his heart rate.
Similar to when you get in
trouble and beg mom “please don’t tell dad” it is the same thing with an
episode. I wanted to run to the computer and shout to the nurse “please don’t
record it” because I knew when the doctors saw a Brady it would push back our
discharge timing.
Tuesday, 5/29
Went to the hospital early
for rounds to meet the new Resident (Dr. R) and Attending (Dr. P). Confused by all the doctors read the Meet
the Cast section to keep everyone straight. As Dr. R was reading the updates she mentioned the Desat
with the heart rate drop to 70 (BLAST, it’s on his permanent record). She was
nice enough to ask if it actually “counted” because it was during a position
change. Dr. P said “yes it counts.” Then she turned to me “when we have a Brady
it is procedure to watch the baby in the hospital for 3 – 5 days to ensure it
does not continue. It is my policy to watch for the baby for the full 5 days so
I am sorry if that changes your thoughts on when you can head home.”
While it is great he is
being watched closely it just makes us nervous about saying H-O-M-E. Luckily,
the Brady occurred on Monday 5/28 and we were not talking about discharge until
the week of 6/4 so it did not technically set us back.
Thursday, 5/31
Today I got a call from Home
Healthcare saying they received an order for the OG tube equipment for James
and they are ready to deliver to us tomorrow. WOW!!!!! This is getting real. We
are getting everything in order.
- Nate and I have
both passed the OG tube changing
- We have all 12
follow-up appointments set
- The nurses have
us doing just about everything for JD while we are at the hospital
- Neurosurgery
said JD will have the collar on for 3 months but we can take it off for baths
and for feeding as long as we support his neck
- Tomorrow Nate
and I will watch the going home DVDs
- This weekend JD
will do the car seat test
- Nurses are
coming up to us in the hall saying “I hear you are on your way out” meaning
they are talking about it behind the scenes
This time next week we could
be snuggling with BOTH of our little pumpkins. How lucky are we to have watched
our son grow into such a wonderful little baby. With the exception of the first
few days of life JD has been stable and working on growing. No oxygen, no
additional meds, no surgeries (so far), no episodes, very low maintenance. Many
other babies have come and gone who are in a far worse place than James.
Everyday I realize how blessed we are to have a champ and a fighter and another
little boy to add joy to our life.
One last thing, JD now
weighs . . .5lbs 15oz!!!!!!! And yes, that was a long post. Good night.
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| One of many, many rockin' dance moves |
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| "Hmm, how can I get out of here before they put that tube back in" |
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| "Look mom, no collar. . . I promise to be good" |
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| "You wanted me to gain weight but you did not specify where so I am storing in my cheeks" |
