Saturday:
I have to say that
even though there are so many issues with Nathan at the moment, we have to look
at the positive. This weekend had both
ups and downs as to be expected. Saturday
was definitely the “UP” portion of the weekend.
Nathan’s urine output all day was actually very good. At Midnight (Friday Night) he had 9ml,
followed by a 5 mL at 4 am, a 4 mL at 8 am, 5 mL at noon, an 11 mL at 4 and
then a 7 mL at 8 pm. Those full diapers
are what kept pushing us through the day.
Nathan’s skin was still extremely bad.
The more edema he had, the worse his blisters got.
His nurse was Molly
again today. She definitely was growing
on us and we were enjoying her company.
And maybe I am partial to anyone who allows me to do skin-to-skin with
my baby. Yes, I got to hold him once
again. I seriously didn’t think that was
going to happen until his edema went down and his skin became less
sensitive. I even told her that I didn’t
need to do it if it would hurt Nathan because that is the absolute last thing I
wanted to do. Everyone said that it
would be fine, so of course I took their word for it.
I felt like I
needed to be extra EXTRA careful when I held Nathan today. His skin was so fragile that I was afraid
that if I grabbed him wrong then I would hurt a blister or an open soar or
something. Again, Nathan couldn’t scream
to tell me that it was hurting or uncomfortable; we just had to let the numbers
do the talking. They laid his swollen,
fragile body on my chest and as always, my heart melted. There was nothing I loved more in the world
than this little baby that was in my arms.
He did actually very well. His
SATS were mid 90’s the whole time but he was on 100% oxygen, which wasn’t
ideal. I tried to keep my hands off his
back to minimize the heat between the two of us so I just kept the blanket that
my parents got for Nathan against his skin.
After about an hour
and a half of holding Nathan, it was time to put him back. As they were taking him off, I noticed that
two blisters had popped on the secretions got on my bra, my stomach and the
blanket. Poor little guy. If I knew what the next time I held him would
be like, I wouldn’t have put him back.
Because Nathan’s
skin was really bad, they were going to call wound care to have them come and see if there were any other tactics they could do to help heal his skin or make
it less painful. At the moment they were
putting this gauze like substance over the blisters; both full ones and popped
ones. It had some type of medicine in it
that would help keep it moist and protected.
Wound care would probably come that Monday since it was the weekend. You can see in these pictures the gauze on
his skin and how fragile his skin is.
It was just so hard
to look at him without crying. Nothing
about this is right and I couldn’t do anything but love Nathan. I couldn’t take his edema away, I couldn’t
make his skin normal again, I just couldn’t.
I would sit and stare at him just feeling sorry for my son. I felt bad that he was in this situation and
although there was never anything that I could have done to prevent what had
and was happening, I still couldn’t help but feel sorry for my innocent child
who didn’t deserve any of this. Unless
you are a mom, you don’t really get how much love you can give someone. You can love your husband, you can love your
parents, but the love you have for your child is a love all its own. You love your child so much that it
hurts. You would do anything in your
power to protect them from harm. I would
have given my own life if it meant Nathan and Colin got to come out of this
alive and healthy and send them home with their Dad. I finally understood how my mom feels about
my brother and me. It’s an indescribable
feeling that a mother feels for her children.
No one can touch that. So seeing
my baby in the state he was in was literally killing my heart little by little.
I think his kidney
function and the skin condition are the biggest concerns at the moment. But I continue to stay hopeful and positive
for my child and hope for better days ahead.
Jonda was his nurse again that night and a familiar face always makes me
sleep better at night since she knows Nathan and knows his personality somewhat. More of the days details are in his Nightly
Update. So when we left him for the
evening, we went to the RMH and I wrote his Update. It said:
Nathan’s Nightly Update 1/4/14
Hello!
We had yet ANOTHER uneventful
day! My Favorite! We did get to do skin to skin again for about an
hour and a half and he tolerated that pretty well. He was Sat-ing in the
mid 90's most of the time. His skin is still very fragile and probably
will be until his edema is gone and he skin can rebound. They called wound
care to get a consult just to make sure they are doing everything they can to
make sure Nathan isn't in pain, the popped blisters don't get worse, and give
the nurses any suggestions on either preventing skin tears or help them heal.
So we are still waiting to hear from them. It might happen on
Monday but we are not sure. You can see in the Picture that is attached
how swollen his little hand is. It was actually not swollen yesterday but
today I would say he is a tiny bit LESS swollen in certain places which is a
good sign.
His Urine output has been
AWESOME!! So last night (Friday) he had 7ml's at 8 pm, 9 ml's at
midnight, 5 ml's this morning at 4 am, 4 ml's at 8 am, 5ml's at noon, 11 ml's
at 4 pm and then 7ml's tonight at 8 pm. Those are good consistent
numbers. He is just getting his TPN and Lipids right now. He will
get his antibiotic tonight at 11 which is an every 48 hour dose. His
Creatine level is 2.2 today which they are considering that Stable from his 2.1
yesterday. Hopefully we will see that number go down. They said
they will see the number plateau and then decline. When they were not
worried about his kidneys, his creatine level was about .92 so I think we want
less than 1. Nathan needs to create more albumin which is something produced
by the liver which will break down the fluid in his tissue and pull it into the
vessels which in turn will help get the swelling and edema down. And
they are giving him nutrition in his TPN that will help make the albumin.
Last night he did loose a
little weight. Thursday he was 1406 grams, then last night he was 1390
grams then tonight he was 1427 grams. His night nurse said that he is doing
great on his ventilator. Last night he was around 50% oxygen.
Another thing new today is
that Nathan is all alone in isolation. We got there this morning and his
other two friends moved into a different Pod. There are 4 separate rooms
in Isolation and now he is the only one back there. They are going to
keep him back there because of his infection and they also don't want to expose
him to anything the other babies might have. Kevin and I are completely
fine with that. He is still the smallest baby in the NICU so his immune
system is basically little to nonexistent. So it is just him and the nurse!
Well I think that is it!
Hopefully these uneventful days continue since Dad is going back home
tomorrow.
We love you all!
Kelly, Kevin and Nathan
Sunday:
Sunday had arrived: the day of rest. Maybe for some people, but for Kevin and I,
it was another day in the life of NICU parents.
When we got there that morning, nothing had really changed overnight. Meaghann was his nurse again this morning! I wish
she worked 24 hours a day and could just stay with Nathan. She had such a kindness about her and a
caring demeanor. She was only going to
be there till 3 though and then Pam was taking over. They called infection control to see if when
they care for him, they can just glove instead of gown, mask, and glove
since they think his infection is gone.
We would just glove because his skin is extremely sensitive.
They called in for a specialist to look at Nathan’s
skin. Dr. Hoath was his name. He apparently was a NICU Attending Doctor and
had since retired but continues to do research and is now a world-renowned
doctor that specializes in skin conditions.
After he inspected Nathan, he said that it might be Stevens Johnson
Syndrome. It is an inflammatory
condition that is usually caused by certain medication. He said that this was very “RARE” and he has
only seen this on a few other babies in his entire career. Shocking, right? Wrong.
Everything that has happened since we got diagnosed with TTTS has been
Rare, so the fact that Nathan has yet another rare case is not surprising. It sucks beyond belief but I am not surprised
he used the word “Rare” while talking with us.
He did begin to tell us that this can also be a fatal disease but only
in the fact that it can cause the throat to swell, which causes the child to
stop breathing. This was not the case
with Nathan. He was already intubated so
if that were to happen, he would still be able to get air through his
ventilator. So because SJS can be caused
by medication, they were going to stop giving him the sephtazadine and give him
an IVIG. I am not sure what that is but
it was medicine to help with the skin.
Another issue with his skin was around his genitals. Even though his urine output was somewhat
decent today, they did want to get a urine sample to run some tests. So they put a cotton ball around his penis to
hopefully catch any urine. But his skin
around his penis was blistering and then they would pop so they couldn’t tell
if the weight in the diaper was actual urine or secretions. But even so, his diapers weighed 3 ml at
midnight last night, 4 mL at 4 am and again at 8 am, then only 1 ml at noon. After that, there really were just tiny drops
that you could make out. At one point,
Pam and I were doing his care and while I was changing his diaper, one of the
blisters popped and the fluid in the blister started squirting everywhere. Pam got excited because she though he was
peeing so I told her with a sad face that it was one of his blisters. It was so disappointing. My heart sank. His creatinine level ended up going up a bit
to 2.38 so it seemed like as the day went on, his kidneys were slowing down. In one of his diapers, there were drops of
blood on the cotton ball but we couldn’t really tell if he was urinating blood
or if that was from his breaking skin.
Blood wasn’t only making an appearance in his diaper. That afternoon as I was sitting by his side,
I noticed that he started spitting up blood.
So I called Pam over to tell her and she suctioned him to make sure his
lungs weren’t full of blood. They
weren’t so then we knew it was just within his mouth. Stevens Johnson Syndrome breaks down the skin
inside the mouth and that was why there was blood being spewed out. I just sat there and would suck up all the
bloody saliva when I could. That was one
thing I was able to do and knew how too.
But to see your baby having blood come out of his both was yet another
thing to add to the “Breaking Mommy’s Heart” list. It hurt beyond belief to see this happening. My helpless child: what’s a mother to do?
In the afternoon
before shift change, Kevin left to go back to Columbus. We asked Dr. Valentine her thoughts and she
said that Nathan was still day-to-day.
If he was hour to hour than Kevin would have stayed but since he was
still day-to-day, he decided to go home to work. He would keep his phone on him incase things
took a turn and he would have his bag packed and in the car ready to go.
I stayed in the
NICU until shift change and then came back right after. Jonda was his nurse that night. 2 Days ago, the Occupational Therapist had
put this pillow type thing in Nathan’s Incubator for him to lye on. Instead of keeping him completely flat, this
pillow allowed us to put Nathan in a position and then form the pillow around
him so he would stay in that position.
Since his edema was so bad and he wasn’t as pliable, this helped him and
hopefully made him more comfortable. We
couldn’t put his arms under him or really bend them that much for that
matter. It looked like it helped him, at
least in my eyes.
His O2 was pretty
good most of the day and he seemed to still be doing well on his
ventilator. At his 8 pm care, Jonda and
I put him on his belly and he went from 60% oxygen to 45% oxygen. We also weighed him at that care and he was
1432 grams. Along with his oxygen being
fairly decent, his blood/gas levels were fine but his CBC kept clotting
again. So there are a few good things
going on with Nathan. The best one is
that he is still here and still fighting.
But even so, I was scared.
That night when my
mom picked me up, I remember getting back to our room and I broke down. I was completely PISSED off. Why Nathan? I
remember cursing God because what kind of God would do this to a child. What kind of God would do this to ME? I am a
good person, a great mother, and I have had one child die in my arms and I
couldn’t help but think that was going to happen again with Nathan. I hear all these drug babies in the POD next
to ours and I can’t help but be so angry with their parents. Kevin and I WANT children. We would be excellent parents. We ARE
excellent parents. And then here are
these awful people who can’t keep their legs closed and can’t refrain from
doing drugs while pregnant and it is their fault that their sweet baby has to
start off their life like that. I told
my mom if I ever saw a parent of a drug baby in the NICU, I would seriously
punch her. There is no excuse for that
when it is preventable. My
situation….not preventable. There was
nothing I could have done to prevent this.
It wasn’t something I ate or did to cause TTTS. It is just extremely BAD luck that his has to
happen and my sweet boys. I think that
night I just snapped. I couldn’t pretend
that everything was OK anymore. I needed
to start realizing what was right in front of me and prepare for the worse….AGAIN!
After I cried, took
a hot shower and calmed down a bit, I wrote his Nightly update:
Nathan’s Nightly Update 1/5/14
Hello!
Since Nathan is the only one
in isolation now and is pretty much over his blood infection, then they were
going to consult infection control to see if we can not gown and mask while
caring for him. We would still wear gloves because his skin is so
sensitive now but we will see what they say tomorrow if they come. So we
are supposed to hear from wound care and infection control tomorrow. He
does have a few more blisters that have popped on his stomach but his back is
looking much better with almost no blisters. There was a Doctor here
today that they asked to come see Nathan. He used to be an attending and
has since retired but is still doing research and is supposed to me a world
renowned Doctor specializing in Skin. He thought it might be
Stephen-Johnson Syndrome that is caused my certain antibiotics (he said this is
very RARE in babies). Of course it is RARE! Through this whole
experience, everything has been RARE!! Kevin and I hate that word). They are
going to stop the antibiotic cephtazadine and give him and IVIG (some sort of
medicine) to hopefully help with his skin. He started bleeding from his
mouth because his lining in his mouth is having the same effect as his skin.
Poor little guy. But at least the blood is not coming from his
lungs. We did ask how serious is this Stevens Johnson Syndrome.
They said the mortality rate is pretty high BECAUSE usually an antibiotic
would be given to a child that would be home and the reaction to it would cause
their throat to swell and they wouldn't be able to breathe. Nathan is
already intubated so that is not a concern.
He got some plasma today and
another thing of blood. His blood/gas levels came back fine. His
creatinine level went up a little bit to 2.38. We thought his diapers
were weighing a lot because of his urine, but now since his blisters are oozing
fluid (that is also yellow), that is in his diaper as well and not just
urine. The doctors want a urine sample from him to measure the creatinine
level and other things that way. How do you get a urine sample from a
baby you ask? They put a cotton ball around his penis in hopes that he
pees in that and then they squeeze it out. So the cotton balls actually
haven't had a whole let in them.. just drops. So his kidneys are
slowing down again. Kevin and I are again worried.
So today our worries are his
kidneys (AGAIN) and his skin.
Some good news! Yes!
Lets talk about the good news. He is doing very well on his ventilator.
Tonight while I was there, we turned him on his belly and he was at 60% oxygen
at high-sating around 100! So his nurse put him at 50% oxygen and he was
still at 100 sats. So she weaned him down a bit more to 45% and he stayed
around 96/97. So that is good news. Heart rate is good, potassium
is good, other blood/gas levels are good. He only gained a few grams
since yesterday so that is good. He didn't gain a whole lot which is
good. If you haven't noticed, I am trying to say GOOD a lot when I can!
That's it for now. Wish
for a good week where things get better and not worse since Kevin went home
today.
Love you all!
Kelly, Kevin and
Nathan
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