Such a long week and so glad that is
finally over. Surgeries, hospitals,
doctors, pain, sickness, hard beds…..all make for one very tired momma but one
that is willing to do it as many times as needed. I am just so glad to be home tonight though
and here with Rob and Brittnie again. I
really did not think we would be home until at least tomorrow but I will count
it as another tender mercy from my Heavenly Father.
Skyler had surgery six days ago. He had a birth defect called pectus excavatum….basically
his chest muscles were not strong enough to hold his rib cage out so as his
heart and lungs got larger, they began to get squished due to the chest not moving
out. The fix for that was to put a
titanium rod into his chest between his ribs and his heart and lungs. That rod
will allow the muscles to strengthen so eventually they will push the chest
wall out on their own. The rod will be
removed in two years with the hopes that it will be stong enough to do the
job. This surgery has been known to be
one of the most painful surgeries that there is. If you can imagine someone constantly pushing
out from your insides and never stopping – that is the pain. His body will eventually get used to it and
the pain will lesson. He will have to
take it very easy for a few months to prevent any type of injury taking place. I was not excited for the surgery and neither
was he. He was trying to be so strong and brave and not admit that he was
scared, but I could read thorugh his eyes and knew that he really was.
We had to leave Bullhead at 5:30 last
Thursday morning to be at the hospital by 7:30.
It was dark as we left and silent tears rolled down my cheeks. I was scared.
My little baby was going to put under anesthesia and have someone work
very closely to his tender heart. I am a
worrier and imagined any and every thing that could go wrong. Once we got the hospital, we waited for
almost three hours before they called us back.
I could not believe we sat there for that long. They took us back to the pre-op room where he
put on one of those lovely gowns, got his IV started and we waited – another two
hours. He was starving, we were nervous and
yet we waited. Finally the doctor came
in and asked if we had any more questions.
Then the anesthesiologist came in and talked to us about the epidural.
Skyler was more afraid of the big needle in his back than he was for the
surgery. He asked if he could be asleep
when the epidural was put in but was told he needed to be awake to help guide
it into the right spot in his back. This
made Skyler cry which started me crying too.
I suddenly saw how scared my little boy really was and it hurt. We told him it would be okay and not to worry
– that the angels would be with him and to be strong. Then we had to say
good-bye and more tears came. The sleepy doctor had started to walk away then
suddenly came back. He asked if we were
LDS and said he was too. Then he asked if we would like to say a prayer before
the surgery. He even offered to say it for us.
I have never had a doctor do that before – not even when we lived in
Utah. We had to say good bye again so
more tears. As they took him down one
hall way and told us to go the other way, I clutched Rob’s hand and the tears
came. We just walked around for a few
minutes then went to wait some more. It is
so hard to sit there knowing your child is in someone else’s hands and there is
nothing you can do but pray.
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| waiting for surgery |
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| Recovery Room Phone Break |
About two hours later the surgeon came
out and told us that it was beautiful – it all went very well. He did say Skyler had a hard time with the
thought of the epidural but he was pretty much out of it when they put it in –
had given him meds to calm him down. He told us again he would be very sore and
it would now be a waiting game. We were
allowed back to see him about 20 minutes later. As we got there, he was just
starting to wake up and was moaning with pain.
The tears were trickling down his cheek.
We comforted him and told him we were there and that seemed to calm him down
some. However, the pain was enormous.
They had meds going into his epidural at a rate of 6 but about an hour
later raised them to an 8. He finally
had some relief and was able to sleep.
We spent the next 7 hours in the recovery room with a very kind nurse waiting
for a bed to open up in the ICU. Skyler
kept waking up to check to make sure we were still there. I even got some video of him snoring (actually
snorting) which is very funny. He slept
most all afternoon and does not remember anything about the recovery room.
About 9:00 that night we finally got put into our own room in the ICU. They continued to monitor his pain and tried
to keep him comfortable. Rob left for
the hotel room about 10:30 that night and I tried to get comfortable on one of
those chairs that pull out into a bed.
The night was long as they kept coming in to take x-rays (at 2:00 a.m.
mind you) and check his levels and draw his blood. No wonder no one ever sleeps in the
hospital. I was very tired so lept okay
but kept waking up to check on him…..he was pretty out of it.
The next day was Friday. Brittnie came up after work that night to
stay for a few days too. It was so tender when she came over to stand by his
bed. I looked at her and huge puppy dog tears were rolling down her
cheeks. I asked her if she was okay and she
said it hurt to see him that way. She
really does love him! That day was
filled with lots of sleeping, nausea, throwing up, pain and more pain. He would try to stay awake for a little while
but mostly just slept. We told him that is what his body needed to encouraged him
to do so. That night, we both slept very sound. I only remember the nurses coming
in one time but I guess they were there every two hours.
I wish I could say that Skyler snapped
right out of it and everything was great.
However, that was not the case.
He struggled. The pain meds were making him nauseated so they had to
keep giving him stuff for that. However, the first med they gave him (for three
days) did not help at all. He would try
to eat but had no appetite. They did turn the epidural back down to a five that
day so his pain meds were decreased. He
did so well with that. He actually went
one time for almost 6 hours with no breakthrough pain meds in his IV. That night they gave him Benadryl (after he
threw up yet again). That seemed to take
away the nausea and he slept all through the night….and so did I!!
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| His new chest |
Sunday was the day they were going to
take out the epidural….however, they had not turned it down far enough yet and
the nausea was still too bad. Skyler did very well all day though with being
alert and awake. He watched a lot of TV
and talked to us. He still did not eat tons but was doing better it
seemed. He did not complain as much
about the pain and things were looking up.
But then Monday came….
Monday morning was just like the
others. Got him breakfast, watched some
TV, visited with doctors. They did take the epidural out that day which was
such a relief. That meant that he also got the catheter out. However, that meant he had to sit up now to
use the bathroom as he no longer had a tube to do it for him. That afternoon Dan from Occupational therapy
came to visit us. He had Skyler actually get out of bed. He sat on the edge first and then stood up
for about one minute. He got so dizzy and nauseas that they put him back in
bed. They said that was pretty good for his first try and told him to
rest. They next day would be
walking. Well, that started the bad
night. Rob and Brittnie left that
afternoon about five which was hard for Skyler. He wanted his dad to stay with
him too. He cried really hard when they
left. It really broke my heart. Then the nausea started to come back really
strong. I could always tell when it was coming
as he would get really hot and start to sweat.
He had these little blue bags to puke into and they usually did pretty
good. However, this time it did not. He
threw up so hard and violently. It hurts his chest to do so and he exploded
everywhere – including all over me. I
was alone with him at the time so I hit the call nurse button and one came in.
I told her what had happened and she went and got me some wipes to clean him up…then
she left. I could not believe it. His
nurse eventually came in and we had to strip the beds, his clothes, wash him
completely off and get him comfortable again.
It was pretty bad. He did feel better though – for a while. Then it hit again.
For some dumb reason that we do not know
of, his doctor that day and discontinued the Benadryl and so they would not
give it to him for his nausea even though that worked this best. The nurse called the doctor and they ordered
Ativan. When they told me what it was, I did not have the best feeling about it
and I should have said so – but I hate to tell a doctor what to do.i regret
that decision now. Within minutes of him
getting that med through his IV – not even having it all yet- he lost it. It
was supposed to calm him down and help him sleep but it did just the
opposite. He had a horrible panic attack
that lasted almost two hours. He told
the nurse and I as she was giving the med that he felt really funny and did not
like ti. She told him it was just the med and to relax. Before long, he was crying. He kept asking me
what was happening and said he was scared.
He kept telling me there were people in the room and that there were
black spots on the ceiling. I will never
forget the scared look in his eyes when he would look over at me with red eyes
and ask me what was going on. He kept
saying “mom, I am scared”. He told me over and over again that he loved me and
that he was afraid something was going to happen to him. He kept asking when it would stop and if he would
remember it…if it was a dream. At one point, he told me I had four noses then
as he reached for my nose and felt only one, he cried harder. I wanted so bad to cry too – I admit tears
did run down my face when he would settle for a minute or two only to jerk
awake and start it all over again. I called Rob – but he did not answer so I called
my dad. I told him I needed him to pray and do it right then. Then I got hold
of Rob and told him the same thing. I had him try to talk to Skyler to calm him
down but that did not work either. He had the kindest nurse that night that had
the magic touch. She gently placed her hand on his chest and repeated over and
over again “breathe, one, two, three, four, five.”. It seemed to work – until we stopped saying it. For two hours I saw such fear and panic in my
son’s eyes. I fell asleep at the side of his bed holding his hand. He finally slept – until about 4:00 then a
smaller version started again. He asked me if it was a dream or if it was real.
I told him it was real but that he was fine. Then he started to panic again and
tell me how afraid he was. He finally
slept about 4:30 – and did so for most of the day.
That day was very long. I was all alone,
scared, wondered why I had not listened to my gut, and it was so quiet. We let
him sleep – for almost 8 hours he slept that day. He did not ask for pain meds but did not eat
either as was still upset to his stomach.
They did get him out of bed again and made him sit in a chair for half
an hour which he really hated. He told
me he could not do it and wanted to go back to bed. When he finally did, he slept again. I so hated that day.
Tuesday morning we had a nurse who was
not very kind. She was the worse one we
had. She was mean and cruel and so was the surgeon that day. He basically told
Skyler to stop being lazy and get out of bed.
Tell him to do that when you get so sick and dizzy you can’t stand
up. We did get transferred out of ICU to
a regular room which was much nicer. I finally saw a smile on his face when he
saw an x=box in his room. They did not
have any good games though so we watched Disney movies instead. He was feeling better that night and they
made him get up again and he actually walked this time. That meant he could start using the bathroom
too. Skyler did not sleep at all last
night even with the Benadryl. He woke
after two hours and was awake for four. I told him to watch TV but he would not
turn it on as he did not want to keep me awake.
He had such manners the whole time we were there to everyone – always telling
them thank you even when he was doped up.
They gave him more Benadryl about 1:30 and again it only worked for two
hours. I slept laying my head on his bed again holding his hand. About 6;30 we decided we were done fighting
and put in a movie. I dosed somewhat during
the movie but he did okay.
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| Dad came! |
He
got up to use the bathroom (which he had done all night be himself) about 7:30. The door opened as he went in and there stood
Rob. I wanted to cry. I so needed him on
panic night. Skyler had just told me
last night too that he was afraid his dad was not proud of him and was upset
that he was not strong and fighting harder. He said he missed him. When he threw up so bad, it got all over his
pillow. So I sent it home with some
friends to get washed. Rob had brought it
back. We put it on the bed to see if Skyler would notice and Rob hid around the
corner. Skyler came out and sat on the edge
of the bed talking to me. He suddenly noticed the pillow and asked where it
came from. I told him Kim had brought it back but he did not believe me. Then
he saw Rob – he stood up with no pain and ran into his dad’s arms. They both
cried. It was so awesome! From then on it was downhill…he sat by us on the
couch and opened presents, he played games with Rob and the x-box; he walked
all over the hospital when the therapist came – he wanted to go home. The nausea suddenly disappeared and so did the
feeling sorry for himself. The pain was at a one. They came in about 1:00 and told us the
surgeon had forgot to come in, but he was okay with us going home if we felt okay
about it. You did not have to ask twice. We were gone within an hour. It was so great….we finally are home and now
the healing can begin. He is a totally
different person tonight – he still hurts some but is doing all that he
normally does. He is so awesome. I just have to put a reign on him to keep him
from doing too much. As Skyler says’ I
hate hospitals”.
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| Final Stop on Way Home |
