NICU Journal as recounted by Jessica
During the next 2 1/2 months, many different events would take
place. It is sometimes hard to recollect what happened on any particular day.
I will recount the most prominent events and dates, which I am able to remember because I
kept a journal throughout Josh's stay. Looking back on these 2 1/2 months, the days
all seem to blend together. Each day consisted of basically the same routine; get up
in the morning and go to see Josh until sometime in the late afternoon, come home and have
dinner, then Joey (he worked all day) and I would make the half hour trip back to the
hospital and stay a few more hours. The following picks-up where "Week 1"
leaves off.
 FEBRUARY 16 - Dr. K was going to do
a dye study on Josh's intestines when she noticed that his abdomen was measuring too large
in diameter. An X-ray was done and they saw what they called "free
air". "Free air" was explained to us to mean that the gases in the
intestines were leaking into the abdominal cavity. She was concerned that there may
be a leak in one of the sections she had pieced together so the dye study was
postponed. Josh was placed on ampicillan to ward off an infection.
FEBRUARY 17 - The doctor's started to monitor Josh's
kidney function and his creatinine was 1.6. Creatinine measures how well the
kidneys are functioning. The staples holding Josh's incision from his heart surgery
were removed as well. These were, however, the last things on our minds as today we
learned that 3 of the 8 connections in Josh's intestines had let go. This was
devastating news knowing that Josh would be facing another surgery. Dr. K explained
that this was very concerning to her because she felt she may have to take out the 3
pieces that leaked and may not be able to salvage them. She explained that since
Josh already had a shorter bowel than normal, this part of the intestine was very crucial
to him. There was a possibility that the intestine may not be large enough to absorb
the proper amount of nutrients for him to grow. Due to this, Dr. K mentioned that it
was possible that she may have to bring Josh's intestines outside of his abdomen, placing
them in a bag to let them grow for about 6 months, then doing surgery at that time to put
them back inside. This was shocking to hear for poor Josh's sake and also to face
the reality of over 6 months of hospital life.
Joey and I spent the night in the waiting room at Hasbro
Children's Hospital where the surgery was performed. A few hours later, Dr. K came
out and said that he was doing fine and that she was able to piece the 3 connections back
together. A tube was also placed into the lower part of Josh's intestine for
drainage. She said that she had decided to give Josh another chance to heal because
he is such a fighter. I want to say right now that Dr. K was and is the nicest
doctor and more importantly, person. She was just incredible throughout
everything and she really cared about Josh. She told us they were going to wrap
things up in the operating room and we could meet Josh back at the NICU in a bit.
We went over to the NICU and awaited Josh to return with his
entourage. After waiting a while, we were getting concerned. They told us
there was a delay and we waited patiently. Finally, Josh arrived from Hasbro.
We found out that the delay was a result of Joshua's heart stopping momentarily after
surgery. I can't express how hearing things like that give you the chills.
FEBRUARY 24 - The dye study was performed today on
Josh's intestines. Barium dye is usually injected to test these types of things, but
a water soluble fluid was used due to the possibility of leaks. My heart was in my
throat as I escorted Josh to the X-ray room. He looked so tiny in his
incubator. He was placed on the cold, hard X-ray table in the dark room. I got
to watch from an adjoining room, through a small window. I was so nervous as Dr. K
first injected the fluid into the tube leading into Josh's intestines. I watched the
screen as the fluid filtered in and slowly filled up the spaces. It was very hard to
decipher if the fluid was inside or outside of the intestines on the continuous
X-ray. I watched with great anticipation as I saw the fluid back-up into the
stomach. I remember thinking how sad it was that this was the first time Joshua knew
what it felt like to not be hungry, it was the first time his stomach was full. The
fluid that was injected for the study then had to be suctioned out of Josh's stomach,
because his intestines would not yet be able to handle the volume of the fluid. Dr.
K came into my room with a smile on her face and said "No leaks!" I let
out a great big sigh of relief and I think Dr. K was as relieved as myself.
FEBRUARY 26 - Since there were no leaks in the
intestines, the possibility of a leak occurring would lessen with every day that
passed. Today they started to inject breast milk into the duodenostomy tube in
Josh's lower intestine. Injecting milk would force the intestines to start to
process food, making them stronger. This was started via continuous drip at 1cc/hour
(an incredibly small amount, 30ccs equal an ounce).
FEBRUARY 28 - The continuous drip was increased to
2ccs/hour. Josh passed his first poop since birth. I know it doesn't sound like
much, but it was such a fabulous accomplishment for him. Over the next few days the
feedings were increased to 3ccs/hour.
MARCH 2 - A new neonatologist, Dr. Padbury took over
Josh's case. A different team of doctor's came on every month. We had already
been in the NICU an entire month, and outlasted the first team of doctors. Josh's D
tube and G (stomach) tube were "vented". This means they were elevated
above him and opened to air. For a long time an ugly green liquid, which we learned
was bile, would back-up into them.
MARCH 4 - Feedings through Joshua's D tube were
increased slowly, today they were up to 5ccs/hour. Josh was visited by the
Occupational Therapist who regularly assesses babies in the NICU. She was quite
impressed by the way Josh followed you with his eyes and that he was bringing his hands to
his face and mouth. It was also assessed at this time that Josh was very light
sensitive. A blanket was hung over Josh's incubator to shade the light.
MARCH 5 - Dr. K said to start to feed Josh
sugar water by mouth, which would drain out into the G tube, not affecting his
intestines. This would at least give Josh the comfort of eating, something he had
not yet been able to do. There were previous concerns that Josh wouldn't be able to
swallow, something that can occur in kids with lissencephaly. It wasn't a problem
for Josh, we could tell he was going to be a good eater! The green bile backing up in the
tubes was sent to the lab for testing.
MARCH 8 - The culture from the previous day came
back on the bile with yeast and staph bacteria present. Kanamycin and Nystatin were
the antibiotics started.
MARCH 9 - Josh had his nephrostomy tube and bag
changed, as well as, a dye study to see the condition of the right kidney. Almost
immediately after this test, Josh became sick, we just didn't realize how sick. At
night, his heart rate was fluctuating a little, and we weren't sure what was up, but we
figured it was just temporary.
MARCH 10 - At about 12:30am we awoke to the phone
ringing. It was a call from one of the NICU doctors. She said that Josh was
having apneas (when the heart periodically stops) and had a fever. Needless to say
we didn't get any sleep after that. They took a urine sample for testing and also
decided to take some spinal fluid. The thought of Josh having a spinal tap wasn't
appealing, but there wasn't much we could do. This was definitely a bacterial
infection, they just didn't know how far it had spread. Ampicillan and Gentamicyn
were the antibiotics started (along with him still getting the previous
medications). Josh needed to have a blood and albumin transfusion because his counts
were so low and he wasn't in any condition to produce them himself. Josh would later
somehow get his IV lose and the blood leaked all over the place. Thank God it wasn't
coming from him! Later in the day Joey decided to donate blood for Josh because
luckily they are the exact same blood type.
MARCH 11 - Josh's heart rate continued to drop
periodically (called bradycardia). The doctor said that this is common in children
who have urinary tract infections. It was determined that Josh became sick when the
dye study on his kidney was done. When they inject the dye it goes through the
nephrostomy tube, pushing any bacteria in the tube back into Josh's kidney. Not very
smart, if you ask me. The label for this little medical diversion was that he had a
septic episode.
MARCH 12 - Feedings started again at 2ccs/hour and
were increased by 1cc every 12 hours to reach a max of 8ccs/hour. They had stopped
his feedings a few days prior when he got sick. Amanophlin (caffeine type drug) was
started to keep Josh from having apneas and bradys (bradycardias). I met the
Geneticist for the first time today. She said that she wanted to send Josh's MRI to
a Dr. in Chicago (Dr. Dobyns) whom she thought knew of a Syndrome which matched Josh's
multiple problems. Next she proceeded to open Josh's diaper while saying, "Does
he have any abnormalities of the genitals?" Poor Josh was still recovering from
his urinary tract infection, and she was pushing in on his bladder, the poor boy was
squirming in pain. Josh was born with undescended testicles, and I guess that is
what she was looking for. She also wanted to send a photo of Josh, but at this time
I declined. At no time did I want Josh to become part of a study. I think I
was still a little defensive about the legitimacy of Josh's condition. Sometimes I
feel you need to be that way depending on the attitude the doctor conveys.
At this point, let me mention that during the entire previous
month, doctors speculated frequently about how Josh would be affected by the issues with
his brain. We had really been focused on his physical issues and we saw him getting
better. We refused to give up our belief that he would be fine. But every once in a
while, someone offered an opinion about what his limitations were going to be.
MARCH 13 - Josh was given 5ccs of Pedialyte by mouth
4 times in the day. This was the most Josh had ever eaten.
MARCH 15 - Josh had a nuclear scan done on his
kidneys. The yeast had multiplied in his urine so he was put on another medication,
diflucan.
MARCH 16 - Josh had 7ccs of breast milk by mouth for
the very first time.
MARCH 17 - Josh got to eat the most ever
today. He had 55cc the whole day, but threw-up 20cc because they tried clamping the
D tube. I guess this was just too much for him to process without the food having a
tube to rise into. The J (jejunial) tube which Josh was still being fed through, as
well as, by mouth occluded (clogged). Leave it up to Josh to always decide when he
no longer needed a tube.
MARCH 18 - We got the results on the scan of the
kidneys. It revealed a blocked right kidney (which we knew) and poor function on the
left side despite adequate urine output. Apparently even if the kidney's aren't
functioning very well, the urine will still be produced, but the blood remains
unclean. This would begin a more intense focus on his kidneys. Josh was very alert
today and really is beginning to love eating.
MARCH 19 - Today was a very hard day. I
arrived with my mom early in the morning to see Josh. Upon walking in, and before
seeing Josh, I was confronted by one of the doctor's. "Your son will have
kidney failure at some point. It may not be now, but it will definitely happen at
some point." Unbelievably, this is the same doctor who cornered me the first
day I saw Josh after delivery about his brain. This was the first time that things
just became very overwhelming to me and I broke down in tears in the NICU. It seemed
as though everything with Josh's intestines was coming into place and now I was confronted
with this. No longer was it an issue of having to face more surgery, but being faced
with the reality of losing Josh at some point in the future. We thought that these
types of concerns were in the past, but that wasn't the case. Later that night Joey
called Dr. Caldamone, who had a much cheerier outlook. We set-up a meeting with him
for the next morning.
MARCH 20 - Our meeting with Dr. Caldamone went very
well. He said that Josh's creatinine was .9, that was good for Josh at this age, and
also that he expected it may even go lower. He also said that surgery may not be
necessary since the kidney was only partially blocked. He did tell us that the right
kidney was working somewhat, but that the left had little function. Between his 2
kidneys, he had about the equivalent functionality of one. This meant that neither
could get any worse or Josh would be in trouble. Josh had two bradys at night.
MARCH 21 - At the beginning of every feeding Josh is
having bradys. This happens because he is so excited to start eating he forgets to
take a breath. Again bacteria is found in the culture taken from his nephrostomy
tube. More medication is given to Josh.
MARCH 22 - Dr. Brewer, who works with Dr. K, came by
and said that Joshua's feeding has been phenomenal, and reminded us that they hadn't
expected him to eat until he was about a year old. Throughout all of this, Josh has
been on artificial food (TPN) because he is not capable of taking in enough food to
provide his body with all of the essential nutrients. The IV food is reduced today,
which is great because the longer a person is on artificial food the more the liver is
damaged. Later in the day the IV food was turned off.
MARCH 23 - We had a meeting with Dr. Caldamone and
Dr. Padbury and staff. Dr. Caldamone said that Josh's kidney function at where it
was right now (.9) would give him about a 50-50 chance of needing a transplant at some
point in his life. He told us that other possibilities for Josh's kidneys included
that they could get worse sooner, or they could also get better quicker. He said
that Josh could come home with a nephrostomy bag and that it could stay in for 4 - 6
months if surgery needed to be postponed. One thing which bothered us about the
meeting was the fact that if a child was place on a transplant list, any medical
conditions or mental impairments were taken into consideration. This would mean that
Josh would more than likely be put at the bottom of a transplant list, if added at
all. Again, we had to believe he would get better. After the meeting we
learned that Josh's creatinine was down to .8. That's my boy!
MARCH 24 - Epogen was started to help Josh produce
blood. This is administered in a series of 6 shots over 12 days, in the hope of
avoiding another transfusion. Oil was added to the breast milk to add calories for
better weight gain.
MARCH 25 - Today a technician came by to perform the
newborn hearing screen which is done on all newborn babies. An ear piece is inserted
into the ear and attaches at the other end to a laptop computer. I watched as the
technician fiddled with the ear piece, saying that he couldn't get a tight fit on Josh.
He assured me that there was nothing to be concerned about, that the results were
not accurate unless the fit in the ear was good.
MARCH 26 - We had a family meeting with the doctor's
who said that Josh was doing great, and if Dr. Caldamone decided to hold off on surgery,
we would be going home in about a week. At the meeting, Joey asked the
representative from our HMO how much we have incurred in cost. She wouldn't say, but did
say that we were already approaching a million dollars. Both Joey and I were so
excited to even think of the possibility of having Josh at home. Josh was also put
on unlimited feedings, which he loved. Dr. Brewer came by and took out the stent
which had been in Josh's intestines since his first surgery.
MARCH 27 - Dr. Brewer took out the D tube.
For the first time Josh's intestines didn't have an invasive tube in them. Dr. K
changed the G tube later on during the day. By nighttime, Josh had started to run a
temp of 99°.
One thing about being in the NICU for as long as we had, you
develop friendships with the nursing staff and other parents within the NICU. We had
a great team of nurses. Josh's primary day nurse was Claire. From day 1 in
the NICU, Claire had Josh everytime she worked. I remember many occasions where
Claire stayed after her shift was over so that she could accompany Josh to one of his many
procedures. This was a big comfort to us because we knew she would look out for him
just as much as we would. She not only took excellent care of him, but was also a
good friend during our stay in the NICU. Some other nurses who were also great
during our time in the NICU were Beth, Kendra and Robin. They were all unbelievably
helpful and made our situation much easier to handle. We knew we could leave Josh
and he was getting great care. The other parents in there too were good to have
around. We could share experiences and relate to similar situations. We were
veterans in there as were some others who had gone through various issues with their
babies. On this particular day a baby had come into the NICU for jaundice
(yellowing of the skin). Every once in a while these babies would come into the NICU
and stay under the lights for a day or so to help get their coloring corrected.
Joshua was jaundiced for his first 3 months, but this was due to his medical conditions,
and couldn't be treated with lights. When the parents came in for this particular
baby, they were told that the baby would have to stay a day or two. The mother broke
down and was hysterical. The doctors had to help her stand up. Now, I know
this is hard to take and disappointing, but in a room surrounded by people who had babies
holding on for their life, it was kind of annoying.
MARCH 28 - Josh was very sluggish today, evidently
not feeling well with a temp of 100.6. The doctor's decided to do a work-up on his
urine, blood and spinal fluid. Bacteria was found in his urine, probably growing
inside of the nephrostomy tube again. Ampicillan and Gentamicyn were started in the
afternoon. They added a third antibiotic, Bactrim that night. A nasal canular
was placed on Josh to help with his bradycardias. Later in the night Josh had to
have another blood transfusion.
MARCH 29 - I walked into the NICU and was confronted
by a doctor who said that Josh's bilirubin (measures liver function) had risen from 3.3
the previous day to over 7 today. A normal level is below 1. An ultrasound was
ordered and both the liver and gallbladder looked normal structurally. Of course we
were told that just because everything looked ok structurally, the ultrasound would not
tell them how well these organs were functioning. It was just another thing that we
had to keep in the back of our minds and be aware of. Sometimes it was like every
day you were expecting some kind of news to hit you. Unfortunately, it tended to
make the visits with Joshua difficult, because you kept getting hit with these
obstacles. The blood taken from Josh's broviac (central line) came back positive for
bacteria... again.... more medication!
APRIL 2 - The audiologists were back today to do a
more accurate hearing test. An ABR (Auditory Brainstem Response) was performed.
Joey and I waited patiently as the audiologist whispered to each other, pointing to
their laptop with puzzled looks on their faces. It was almost like we knew the news
wasn't going to be good. One of them approached us and said that the results needed
to be interpreted, and she would be back to let us know the results in about twenty
minutes. She returned to talk to us and asked if we wanted to sit down or talk
somewhere else. We looked around for the social worker, that had been the usual m.o.
for something like this. I guess there wasn't anyone available. Basically she
said that they did not get any response from Josh's left ear and possibly a very minimal
amount from the right. She then proceeded to hand us a couple of pamphlets on
"Coping with hearing loss" and "Living with your hearing impaired
child". Yet again we had another major medical issue thrown in our faces.
Joey and I handled it as we had all of the previous issues, feeling that this was not the
final outcome. Josh had survived too much for us to get caught up in this.
APRIL 3 - We decided to tour Hasbro Children's
Hospital today since we had pretty much decided that we would be moving Josh over.
His issues were no longer ones that a neonatologist would handle, rather on the surgical
side. We also felt that there were just too many doctors in the NICU, all of whom
were too quick to order tests on everything imaginable. It was no wonder that Josh
required so many transfusions on his stay at the NICU because they took blood a couple
times a day, everyday.
APRIL 4 - It was Easter Sunday and Josh had his baby
picture taken in the NICU.
APRIL 7 - A "Whittaker study" was done to
check Josh's right kidney. In this test the kidney is filled to capacity, then
pressure is added to see how much urine can get through the partial blockage. Josh
had only a small amount get through. It was becoming clear that the blockage wasn't
going to clear itself, that Josh would need yet another surgery.
APRIL 8 - We moved Josh to Hasbro today. It
was a good feeling to be in a private room here, but it was also hard to leave all of the
great nurses behind in the NICU. Claire wheeled Josh over from the NICU. It
was so hard to say goodbye after our long stay. Dr. K was now totally in-charge of
Josh's care, which was great, and she said he would be here for a couple of weeks.
APRIL 9-14 - Most of Josh's stay at Hasbro was
uneventful. The best thing that happened was Dr. K deciding to let him go home after
only a week there. She said he was ready and felt we would do a better job at home
with him than having him stay in the hospital. The funniest thing that happened was one
night when Joey was holding Josh, his IV line occluded (clogged) and it leaked all over
Joey's pants. IV lines tend to have a little blood back up in them, and when they
occlude, it becomes worse, so Joey's pants had a stain from part water and part blood.
The funny part was walking out of the hospital with all the people looking at his
pants with the big red stain. I hoped that we wouldn't get pulled over by the police
on the way home for anything, how would we explain that!
APRIL 15 - Today Josh came home for the very first
time since being born on February 4!! When Josh left the hospital he weighed 6lbs.
12oz. I can't even say how happy and relieved we were to have him in the protection
of his home and with us 24 hours a day. We knew that he would start to thrive once
he was home. It had been 2 1/2 months that seemed like a life time, but
also seemed like a flash. We were just glad it was over. - Today Josh came home for the very first
time since being born on February 4!! When Josh left the hospital he weighed 6lbs.
12oz. I can't even say how happy and relieved we were to have him in the protection
of his home and with us 24 hours a day. We knew that he would start to thrive once
he was home. It had been 2 1/2 months that seemed like a life time, but
also seemed like a flash. We were just glad it was over. - Today Josh came home for the very first
time since being born on February 4!! When Josh left the hospital he weighed 6lbs.
12oz. I can't even say how happy and relieved we were to have him in the protection
of his home and with us 24 hours a day. We knew that he would start to thrive once
he was home. It had been 2 1/2 months that seemed like a life time, but
also seemed like a flash. We were just glad it was over.
We removed some of the more detailed pages since we had some stalkers sending
crazy emails about following Josh.....but you can check the
Josh News page for current information
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