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Hospital stay from 2/27-3/28
February 27th-- Tonight at 7:00 I checked
on Timothy and he was gray in color and having difficulty breathing we
watched him for a couple of minutes and he had multiple apnea spells. We
hooked him to his apnea monitor and the low heart rate light was going
off as soon as we would reset it, at this point George said he needed help
right away he called rescue/ambulance. They arrived a couple of minutes
later and gave him some oxygen and his color improved once he was a little
more stable Timothy and I went for a ride in the ambulance to Primary Children's
Hospital. While telling the drs. what had happened he had multiple apnea
spells. It was decided that would have some tests run and in the mean time
that he would be given a breathing treatment. 5 minutes into the treatment
he crashed and he had to put on a ventilator. We were told he most likely
either had pneumonia or RSV.
February 28th-- The test results came back
today and Timothy does have RSV. Today at 3:00 he was taken off the ventilator
and put on the CPAP(Continuos Positive Airway Pressure). While listening
to his lungs the drs. heard a heart murmur that isn't affecting his RSV
right now so once he is out of the critical stage they will do an echo
of his heart and learn more about it.
March 1st--Today Timothy is having to work
pretty hard to breathe. He has had multiple brady spells.
March 2nd--Timothy had to be put back on the
ventilator today when his heart rate dropped into the 40s and his sats
dropped and he wasn't able to bring them back up on his own. He is sedated
and resting right now. He has a lot of mucus build-up and is being suctioned
to clear his airways. He also had a NJ tube(tube put in through his nose
into the intestines for feeding) put in.
March 3rd--Today
Timothy is heavily sedated and is resting comfortable letting the ventilator
do his breathing so he can rest. He had an uneventful day.
March 4th--Timothy's blood pressure was low
this morning due to his iron level being low so after a dose of iron it
came back up. They also discontinued his sedatives except for as needed
so he could start trying to breathe more on his own. Tonight at 8:00p.m.
Timothy started having problems, his sats went down into low 80s and his
respiration's went into the mid 80s and he couldn't calm down on his own.
His oxygen level was turned up into the 50s and he was sedated after that
he calmed down and his respiration's went back down into the 20s. (Normally
we would want his respiration's in the 60s or 70s but for right now he
is suppose to be letting the ventilator do his breathing.)
March 5th--This was updated at 10:30p.m. mtn.
time. Timothy's secretions have gotten worse and he is having a harder
time breathing now. His oxygen level has been turned up to 39% and the
ventilator has been turned up to 24. (He was at 17) He is now resting and
is stable. The drs. decided to take Timothy off the vent today around 2:00p.m.
and see what happens. As of 10:00p.m. Timothy was still on CPAP but his
blood gases are not great. They are going to see what happens during the
night. He is struggling right now to breathe. He has been having 4 or 5
Brady spells an hour and goes apnec once every couple of hours.
March 6th--It is now 7:00 a.m. Timothy is
still on CPAP but not doing any better than last night. His blood gases
are borderline and he is having a hard time. He is having another x-ray
done this morning. The drs. are suppose to decide when they do rounds if
they are going to put him back on the vent. His feeding tube became dislodged
from his intestine last night and they had to put in a new one. UPDATED
AT 9:00 a.m.
Timothy is back on the vent with the same settings
as yesterday. 10:00 p.m.
Timothy has had a hard day. He is
having a hard time relaxing and letting the vent do the work. He is staying
pretty sedated at this time. They are going to try and wean him off the
sedatives very slowly. His blood gases are still not great but they are
within an acceptable range.
March 7th--Timothy's vent settings have been
turned up to 30 and his oxygen is in the low to mid 30s. He had a chest
x-ray done today and it looks the same as it has. So, although he isn't
any better he isn't any worse. He is still receiving formula through his
NJ tube. He is getting 45 ccs every 3 hours and he is getting 27 cal. formula.
He weighs 5 pounds 1 ounce which is what he weighed when he was admitted
to the hospital so at least he hasn't lost.
March 8th--Today's problem is that Timothy's
lungs have collapsed and he isn't able to move any air to trigger the ventilator.
So, they had tried a continuos albuterol treatment yesterday for an hour
and it seemed to work a little bit. So, when he started having trouble
to they decided to try another continuos treatment but run it all day instead
of only an hour. After about 4 hours his heart rate hit 203 his blood pressure
dropped to borderline low and the treatment didn't seem to be helping much
so they discontinued it and gave him a sedative so he could calm down.
By 6:00 this evening he had calmed down and wasn't fighting the vent as
much.
March 9th-- As of 3:00 p.m. Timothy is doing
the same there have been no changes. Updated 11:00p.m. At
5:00 today a blood gas was done it came back really bad. The docs decided
that Timothy was just to worn out to get rid of the gases in his body so
they put him on an I.V. drip of Pavulon and Versed. Pavulon is a muscle
relaxer and Versed is a painkiller. This will let him totally relax and
save his energy while the vent is doing the work for him. His lungs are
still very tight and he is still having trouble moving air. If his lungs
and blood gases don't improve over the next couple of days they will consider
putting him on a different ventilator(Oscillating jet). They also added
another monitor(Rentrax) that measures his flow patterns when he breathes.
March 10th--Timothy had another bad blood
gas they made some adjustments to his ventilator to try and compensate
for it. Updated at 12:45 p.m. Another blood gas was drawn,
it came back worse than the last one. At this point the drs. Are doing
some research to decide what the next step will be. The drs. also asked
us about donating blood for Timothy because of the amount they are having
to draw from him and the fact that he isn't able to replace his red blood
cells fast enough. We were told this morning that Timothy is 3rd worse
case (the other two have been released) they have had this year. Comparing
him to the other two kids Timothy should be on the ventilator for another
2 weeks. Updated at 8:00 p.m. This afternoon's gases came
back borderline. Around 5:00 they changed the vent settings some more and
did a blood gas at 5:40 it came back at 6:00 with a pH level of 6.99(should
be around 7.30) and a CO2 level of 113(it should be around 60). They moved
his vent settings back to pretty much where they were so they can at least
get his blood gas results more to normal. His levels have come down to
a tolerable level.
March 11th--They are starting to wean Timothy
off the Versed. Once he is weaned off it then they will discontinue the
Pavulon. Hopefully he won't have to be put back on them. He has been able
to keep his blood gases at reasonable levels today. Updated at 5:30
p.m. The nurse called at 5:00 to let us know that Timothy needed
a blood transfusion. We aren't able to be donors for him, because it takes
3 days for our blood to be usable to him and he needs it now. We aren't
exactly sure about the meanings of the numbers in the testing that was
done to check his red blood cell count. But we were told that 27 and below
would require a transfusion. His test last week had a number of 29 today's
test came back at 20. Timothy received 35 ccs of blood and that boosted
his number up to 31. He received 35 ccs tonight. He will receive a little
more blood tomorrow to boost him up a little bit more.
March 12th--Timothy is receiving another 20
ccs of blood this morning. When I called to check on him the nurse said
that his blood gas this morning was very good. After he has been suctioned
they are able to hear a difference in his lungs, before he sounded the
same no matter what they did. He is off the Pavulon as of this morning.
But he is still taking painkillers.
March 13th--Timothy was put back on the Pavulon
early this morning. He started fighting the vent again and got back a bad
blood gas. They have taken him off the versed and put him on a different
pain medication. On his x-ray there is a dark spot where his intestines
are and his abdomen is hard as a rock so they discontinued his formula
feedings and put him on I.V. fluids. After a few hours they put him back
on formula and discontinued the I.V. fluids. The drs. were discussing putting
him on the oscillating ventilator jet but have decided to hold off on that
for now. His good sounding lungs yesterday after his suctioning was a fluke
he is back to sounding the same as before.
March 14th--Timothy's abdomen is still causing
some problems. They stopped his feedings again this morning for a little
while then started them back. They will continue to do this until they
can figure out what is wrong. His blood gases are still a little off but
coming back to normal.
March 15th--The hospital called at 1:00 a.m.
because the suction tube that connects to his vent tube shattered and they
had to reintubate him. In the process of putting the tube back in his NJ
tube became dislodged so they took that out and they will try to put in
later until then he is on I.V. fluids. They are going to take him off the
Pavulon again today and see what happens. Updated 10:00 p.m. Timothy
is off the Pavulon and so far so good we'll see how he does through the
night. They attempted to put in his NJ tube this afternoon but it didn't
want to go in right. So they are going to keep him on I.V. fluids for today
and tonight and try the NJ tube again tomorrow. So far today his blood
gases have been O.K.
March 16th--Timothy's blood gases are still
acceptable at this time. They have been able to turn the rate down on the
ventilator to 22 from 30. They are going to continue to wean him off the
vent instead of extubating right away. He is retracting alot and having
a hard time but as long as his blood gases come back o.k. then no changes
will be made. He is not on the Pavulon and George said he was awake off
and on today trying to cry. They will put the NJ tube back in later this
afternoon. Updated at 11:00 p.m. They were able to get the
tube back in place but for some reason his feeds are still making his lower
stomach expand and the docs don't know why. He is now on I.V. feeds until
they can figure it out. They tried to lower his rate to 20 but his blood
gas came back bad so they moved him back to 22.
March 17th--They are going to try today to
wean timothy down to 20 on his vent. They are going to put him back on
the 24 calorie formula instead of the 27 and start slowly with his feeds
and gradually increase them.
March 18th--Timothy did fine yesterday with
his rate being lowered this morning his rate was 20 and blood gas came
back O.K. So today they are going to do the same thing and go down 1 number
each shift as long as his gases are O.K. His feeds are O.K. when I called
this morning the nurse said his abdomen was slightly expanded but not nearly
as bad as before and right now its soft not hard.
March 19th--By this morning Timothy's breath
was down to 18 and he was doing well. They are going to do the same thing
today so right now he is at 17 on his breathe rate and as long as his gases
come back good today they'll turn him down to 16 around 11:00 tonight.
On the 17th of March Timothy was weighed and he weighed just over 6 pounds.
So, his hospital stay sure hasn't hurt his weight any. (He was born at
4 pounds 11 ounces on January 28th.) Updated at 11:30 p.m. For
the first time since he was admitted I was able to hold Timothy. I can't
begin to tell you how thrilled I was, so I won't try. Although it did take
quite awhile to calm him down afterwards it sure was nice. But I don't
think I'll be doing that again to the poor little guy until he is off that
ventilator. Tonight at 10:00 p.m. his breathe rate was turned down to 16
and so far so good.
March 20th--Timothy did well throughout the
night. This morning they turned his breath rate down to 15 but his blood
gas came back high so they turned him back to 16. This afternoon his blood
gas came back good so, if it continues to hold they will try turning him
down to 15 around 10:00 p.m. Timothy's chest x-ray does look somewhat better
because his heart is bigger and it isn't being so compressed by his lungs.
March 21st--Last night they had decided against
turning his rate down so they waited and did it today at noon. His blood
gas came back good so tonight at midnight they will turn his rate to 14
and see what happens with that. Timothy's day was actually quite uneventful
for a change.
March 22nd--Timothy's rate was turned to 14
last night and he did O.K. on it. Today they tried a couple different settings
to see if he was ready to do more breathing on his own. He definitely wasn't
ready for that. Because of the other changes that were tried they decided
to leave Timothy at a rate of 14 today and see about lowering it later
on tonight around midnight. Timothy was weighed this morning and has gained
a little bit in grams but nothing pound and ounce wise.
March 23rd--Timothy's blood gas came back
O.k. this morning so they turned his rate down to 13. He is still working
really hard to breath. (I sure hope the doc knows what he's doing) At 6:00
p.m. tonight the rate was turned down to 11 and as long as his heart rate
stays within range and he doesn't desat. his rate will be turned to 10
at 6:00 a.m. and they will most likely try and extubate around 9:00 or
10:00 a.m. I'm quite worried about it right now and we really don't feel
that he is ready(and some of the hospital staff does agree with us). I
do hope that we are wrong and Timothy does well tomorrow but only time
will tell.
March 24th--Timothy's rate was turned down
to 10 at 4:00 a.m. and a gas was done at 5:00. It came back good so, they
started him on decadron(which is a steroid to help with swelling after
the tube comes out) he will be on that for 6 hours and then they will take
out the tube around 3:00 p.m. He will continue the steroids for 24 hours.
Updated
at 5:30 p.m. Timothy was taken off the ventilator at 3:30 p.m.
He is on 100% oxygen (no CPAP as of right now) through the nose canula.
He is doing well. Updated at 11:00 p.m. Timothy is still
doing well and things are looking good. Will post more in the morning.
Sweet Dreams little Timothy and come home soon we miss you!!!
March 25th--Timothy is doing very well today
he is on a quarter liter of oxygen. He had 1 apnea episode around 5:00a.m.
this morning. He is going to get a bottle for the first time in 3 1/2 weeks
and then maybe later this afternoon if he is still doing well he gets to
move out of the PICU and into a normal room. YIPPPEEE!!!!
March 26th--Timothy was not moved until this
afternoon because there was no room for him on the floor. He is on an eighth
liter of oxygen because he has been having brady spells 3 to 4 times an
hour. The dr. said we should expect the oxygen to come home with him this
time. Timothy is eating around 3 ounces of formula every 3 hours. We will
know more tomorrow about when he can come home.
March 27th--He
came home today at 5:30 p.m. He did come home on minimal oxygen(1/8 litre).
A home health nurse will come out next Friday to check him out and see
if the oxygen and his apnea monitor are still needed. Today was Timothy's
due date and it was also 1 month ago today that he was readmitted to the
hospital Timothy received his 2 month shots at the hospital before he left
so needless to say he is a little cranky but I would be also. We are just
very glad that he is home with us.
March 28th--Timothy is 2 months old today!!!
 
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