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Hospital stay from 3/29-5/1
March 29th-Timothy has had multiple Brady
spells today where his heart rate has dropped down to at least 80 and 1
apnea episode. He is having little to no breath sounds in his left lung.
After talking with a friend we decided it was best to have his sat level
checked. The fire dept. came out and Timothy was sating between 77 and
83. He should be at least low 90s to mid 90s. But with the oxygen he shouldn't
be sating that low. So then we decided to take him back to the hospital
to be looked at. George called at 5:50 p.m. and they had to turn Timothy's
oxygen up to 1 liter to get him to sat in the mid 90s they are going to
try an albuterol treatment to see if that helps his lungs at all. If not
they'll do an x-ray to see what his lungs look like. I will update as soon
as possible. Updated at 9:30 p.m. The albuterol treatment helped
a little. They were going to release him with orders to move his oxygen
from 1/8 of a liter to 3/4 of a liter and albuterol treatments every 4
hours to help keep his airway opened up. But we felt uncomfortable with
the way he was retracting so George called up to the PICU and asked one
of the respiratory therapists to come down and look at Timothy since she
knew him and how he was when he was there. She came down and said in her
opinion Timothy needed to have an x-ray and be admitted for at least overnight
for observation. While she was discussing it with the dr. Timothy started
turning blue around his mouth and nose and was retracting harder than when
he arrived at the E/R. The dr. agreed to keep him overnight so he ordered
an x-ray and depending on how collapsed the left lung is will determine
if he goes to the PICU or just to the infant unit. I will update when I
know more.(BTW..I'm at home because we couldn't find anyone to sit with
the other kids.) Updated at 9:45 p.m. George just called, Timothy's
oxygen has been turned up to 1 liter. Another albuterol treatment was done
but it didn't help his breathing this time. The x-ray showed areas in both
lungs that have collapsed. So Timothy is going to the infant unit for 3
hours and 1 more albuterol treatment if he hasn't improved by 12:30 a.m.
then he will be transferred back to the PICU and be put back on CPAP.
March 30th-Timothy is still in the infant
unit. Timothy is requiring deep suctioning right now to keep his airway
clear and his oxygen goes from 1/4 liter to 1 liter. The dr. called and
said they will keep him until he doesn't requiring suctioning and until
his oxygen levels are stable. They put in a NG tube(goes to his stomach)
so that he could have his formula. They want him to save his energy and
not use it trying to eat.
March 31st-Timothy was moved to a private
room today to lessen the risk of him being exposed to something else. He
was retested for RSV but it was negative. He has had multiple Brady spells(his
heart rate drops below 80 beats per minute) and is unable to recover from
them himself. His oxygen requirements are the same as yesterday. Another
x-ray was done his left lung shows some improvement from sundays x-ray
but his right lung looks the same.
April 1st-Today was a very bad day. Timothy's
brady spells increased to 5-10 an hour some he could recover from on his
own most he had to have lots of extra oxygen and stimulation to recover.
We tried to take him to radiology for a Barium Swallow test to check for
reflux but he Bradyed down so low that he was blue by the time we got to
the room. So, they decided against the test and are just going to treat
him with medication for reflux. He had an EKG done to check his heart rhythms
it was pretty normal. He is also getting steroids through the nebulizer
to try and open his airways. Tomorrow we will consult with a pediatric
genetics counselor to talk about Tuberous Sclerosis.
April 2nd-Today Timothy had a sweat test done
to check for Cystic Fibrosis it was negative. The NG tube was removed today
and we were going to bottle feed but Timothy gets to worn out so they put
the NG tube back in. Timothy has had fewer Brady spells today but he is
still unable to recover from the ones he has. As far as his oxygen goes,
his cannulas are set at 1 liter and he also has blow-by(a cone set in front
of him for extra oxygen).Because of the way he is retracting when he breathes
they want to put in an NJ(goes to the intestines) tube instead of the NG
but the docs are worried that the procedure would be to traumatic for him
so we will continue with the NG feedings. They also started him on a diuretic
today to remove any excess water on his lungs.
April 3rd-Today Timothy is somewhat better
his cannula oxygen is ranging between 1/2 and a full liter and he only
needs the blow-by occasionally. Timothy will remain on reflux meds for
3 to 4 months then will have the Barium Swallow done and if its negative
we will discontinue the meds. He is still on the diuretics but they are
going to lower the dosage so he can be on them for a longer amount of time
without causing to many other problems. He has been having 1 or 2 Brady
spells every couple of hours that he is able to recover from and then 1
or 2 spells that he can't recover from. We tried bottle feeding again today
but it is just to much for him right now he wore himself out trying to
remember how to eat. He is also going to receive a dose of respigam(sp?)
to help him fight off RSV since the hospital is still seeing quite a few
cases of it. They are estimating that he'll be in the hospital for another
2 weeks. The woods lamp test was done to to check for discoloration of
the skin which would be a sign of Tuberous Sclerosis(we had a son that
was born with TS and died shortly after birth) but it was negative. Christopher's
TS was by spontaneous mutation and there are only 10 cases in the world
of TS affecting siblings from spontaneous mutation so the chances of Timothy
having that are less than 1/2 of 1%. Timothy was weighed today and he has
lost 3 ounces, he now weighs 6 pounds.
April 4th-Timothy had a rough night and his
morning isn't any better. The Brady spells are increasing any number again
and his oxygen requirements have gone up continuously throughout the night.
He is almost in need of another blood transfusion. His number is 30 and
at 27 or below requires transfusion. Today Timothy was seen by a neurologist
who ordered a cat scan to determine if there are any tumors in the brain
causing Timothy's Bradycardia and Tachycardia. He is also going to order
an EEG to see if there any signs of seizures. He will also get to together
with the cardiologist that looked at Timothy's EKG to see if what the results
of that were and if there is any other test that can be. Today Timothy
weighed in at 6 pounds 4 ounces.
April 5th-Timothy is really starting to wear
out now. The docs came very close today to just moving him down to the
PICU because he is dominating the nurses time to much. He is still having
multiple Brady episodes and is Tachycardic most of the day with a heart
rate between 200 and 215 unless he is having a Brady spell then it drops
to between 60 and 80. Instead of using blow-by we have put him underneath
a hood for his extra oxygen. His crit today was 26 so he received 30 ccs
of blood. They have taken out the NG tube for now and he is back on I.V.
fluids until he is out of danger of having to be intubated and put back
on the ventilator. Monday he is going to have the c/t scan and chest x-rays.
Tuesday he will have the EEG done. On Wednesday they are going to do a
Ph Probe(they put a tube down his nose into his stomach, he then drinks
apple juice and over a days time they monitor the Ph levels to see if he
has reflux.).
April 6th-Today Timothy had an ultrasound
to check for signs of tumors and a c/t scan for signs of tumors. Both tests
were negative. He has also had chest x-rays done and they look better than
the x-rays done when he was admitted although he isn't doing any better.
While he was in radiology they went ahead and put in a NJ tube so he can
eat. Timothy has developed wheezing over the last couple of days so they
are pretty sure he is having problems with asthma which we knew would most
likely happen we were just hoping it wouldn't start developing now.
April 7th-Timothy had an EEG today. We will
know the results in the morning. The docs may not do the Ph probe. To do
it they are pretty sure we have to pull his NJ tube and they won't do that
just for the Ph probe. To help break up secretions and try and open Timothy's
airway we re going to be trying a couple of new things. Tonight he started
oral steroids and tomorrow he will start an enzyme that is given through
a special nebulizer. I will know more about the new things tomorrow also.
Timothy's day wasn't to bad he had a couple of bad hours but nothing really
serious today. He didn't like having his hair washed after the EEG but
we had to get all the glue out of his hair. He weighs 6 pounds 4 ounces.
April 8th-Timothy's EEG was normal. The Ph
probe can not be done with the NJ tube in and they don't want to take it
out and have to put it back in. So, we are going to let Timothy rest a
few more days and then see about taking out the NJ putting in an NG and
doing the Ph probe. The reflux meds are not working even with the NJ tube
and they should be since he has no food in his tummy. So, he either doesn't
have reflux(but shows signs of it) or the meds aren't going to work and
that means major surgery and they will have to turn his stomach. (The dr.
said we would discuss that more though when depending on what the Ph probe
shows. He is still on 1 liter of oxygen but he has been able to hold on
his sats at around 94 so we are now going to try and start weaning the
oxygen down very slowly. I got a list of all the meds that he is on right
now..thought that would be interesting to list:Tylenol every 4 to
6 hours, Zantac for reflux 3 times a day (neutralize acids),
Propulsid
for reflux 4 times a day (empties stomach),
Prednisone-steroid
once a day given oral (open airways), Pulminoid-enzyme
given once a day by nebulizer(break up secretions),
Nasalide-steroid
every 12 hrs. by nebulizer (open airways),
Atravant-for
asthma(comparable to albuterol) (usually 1 or 2 times a day)
April 9th-Timothy didn't do well with turning
down his oxygen. He is still on a liter. We are going to possibly pull
out the NJ tube tomorrow. Timothy is now 71 days old and has been home
12 of those days.
April 10th-The pulminoid hasn't done what
we thought it would so the pulmonologist decided to look over all of Timothy's
x-rays. She said it looks like he has permanent irreversible lung damage.
They are going to do a c/t of his lungs ASAP(hopefully tomorrow) and then
early in the week they will put a probe down into his lungs and actually
look at the damage. The doc said that Timothy is in for a long stay at
the hospital.
April 11th-Timothy is having the c/t scan
done today but it might be monday before we get results from it. We will
update the site just as soon as we can. Updated at 10:00 p.m. We
didn't hear anything today so it will be Monday before we know the results
from the c/t scan. Timothy's probe is most likely going to be on Tuesday.
April 12th-Timothy's dr. let us know late
last night that his c/t results were inconclusive. It confirmed what the
x-rays showed but they didn't find out anything more. His scope is still
planned for sometime Tuesday. He is on just under a liter of oxygen and
occasional blow-by.
April 13th-Timothy's pulmonologist came in
today and let us know that he didn't feel that Timothy needed to have the
scope done of his lungs right now. Timothy is sounding better than he has
in awhile and the added risk of the procedure is not worth it. So, for
right now we are going to continue with the nebulizer treatments and other
meds and try to increase his feedings through the NJ tube so he can gain
back his strength.
April 14th-Timothy is doing very well(knock
on wood). His oxygen is down to .1 and they have increased his NJ feeds
to 20 ccs an hour. For the rest of the week we are going to let him rest
and continue with the NJ feeds but give him water by bottle for practice.
Then Monday we will decide what to do about testing for reflux if we decide
to test.
April 15th-Timothy is doing well. He weighs
in at 6 pounds 4 ounces which is just a little over his admit weight. We
were able to take him for a short walk today and get him out of his room.
His oxygen requirements have been small, he's been needing between .1 and
.3 on his cannulas and hasn't needed blow-by for a couple of days.
April 16th-Timothy weighs almost 6 pounds
5 ounces and we have decided to go ahead and try feeding him with the bottle
very slowly. He'll start with just a couple of ccs at a time so if he aspirates
into his lungs there won't be much there. Depending on how his feeds go
over the weekend will help decide how and if to test for reflux. He is
getting stronger by the day and holds his head up very well. He has 2 or
3 awake periods when he is awake and looking around for 2 or 3 hours at
a time.
April 17th-Timothy isn't going to start bottle
feeds until Monday. His dr. wants a speech therapist to consult and see
if his sucking and swallowing are O.k. The dr. says Timothy might be aspirating
into his lungs when he swallows instead of refluxing. The speech therapist
will be able to determine if he is sucking and swallowing correctly but
they aren't available to see him until Monday. Today Timothy also decided
to pull out the NJ tube on his own but then had to go through the trauma
of having it put back in. Timothy also had 2 Brady Spells today.
April 18th-Timothy is doing pretty well today.
No Brady Spells. He hasn't gained any weight at all since Thursday(the
hospital does his weights in grams and he should be gaining a little bit
each day).
April 19th-Timothy had an uneventful and restful
day today.
April 20th-Today Timothy weighed in at 7 pounds
2 ounces. The swallow test was done and it was normal so, his swallowing
is not causing any problems. He is starting his bottle feeds tonight at
5 p.m. he had 5 ccs of formula and he will go up one cc per feeding which
will be every 3 hours until such time that he stops tolerating it or shows
any signs of problems. Today Timothy is 82 days old and has spent 70 days
in the hospital.
April 21st-They've decided to go ahead and
increase his feeds 3 ccs at each feeding. At 9:00 this morning we put Timothy
on room air for a trial run and as of 10:00 tonight he was still on room
air. We are hoping to have him home the beginning of next week.
April 22nd-Timothy started having problems,
when his feeds got to 30 ccs(1 ounce) he started having Brady spells and
gagging after feeds. He is on a maximum dose of reflux meds(Propulsid and
Zantac) so they are going to decrease his bottle feeds to an amount that
he was O.K. with(25 ccs every 3 hours) for the rest of the afternoon and
gradually start increasing later this evening. He is also still on the
NJ feeds so they are averaging the two of them out so he gets 21 ccs an
hour of 24 cal. formula.(Lactofree)
Updated at 10:00 p.m. When Timothy
was weighed today he was only a little bit away from weighing 7 pounds
5 ounces. He hasn't had any more problems since we went back to feeding
him 25 ccs a feeding. The drs. are going to leave him at that for tonight
and start increasing tomorrow. Timothy is still on room air.
April 23rd-The G.I. dr. looked at Timothy
today and suggested that we give him mylanta after his feeds because the
zantac may not be neutralizing the stomach acid enough. So we started doing
that at his 12:00 feeding. His feeds will be going up 1 cc an hour starting
at the 9:00 p.m. feeding. If all goes well he should be able to come home
Wednesday or Thursday.
April 24th-Timothy is having some minor Brady
spells and some desats but so far nothing to worry about. He likes to look
at his mobile and sit in his bouncy seat to play with his activity gym.
We are still increasing his feedings by 1 cc per feeding(every 3 hours).
April 25th-Today Timothy started having more
Brady spells and after his 3:00 p.m. feeding he was had several Brady spells
and started gagging. His Respiratory Therapist looked at him and his lungs
were tight with little air movement because he had started aspirating into
his lungs. He started having real trouble at 38 ccs. The drs. decided it
was best to let him rest for awhile so he back on total NJ feeds until
midnight at that they will start him at 25 ccs(again an amount we know
he is O.K. with)and hold him there until after his 6:00 a.m. feeding, then
the drs. will evaluate him again. Most likely we will start increasing
the bottle feeding gradually but if and when he has a Brady spell(which
seems to be the hint that he is aspirating) we are to discontinue bottle
feeds go back to total NJ feeds and will then discuss the options, which
from hat we understand our pretty much surgery. For some good news though
Timothy now weighs 7 pounds 11 ounces.
April 26th-We are holding Timothy at 30 ccs(1
ounce)per feeding, at that amount his lungs sound clear. We talk
to the drs. in the morning about surgery. Timothy has had multiple Brady
spells today. He is still on room air.
April 27th-Timothy was put back on total NJ
feeds this morning he was having to many Brady spells. Tomorrow morning
we are going to do a scope and look down the tubes in his throat and see
what is in there. We will be doing one of 2 things. He will either come
on home on NJ feeds for 1 month and then be readmitted and we would then
try bottle feeding again if it didn't work he'd have the surgery(Nissan)
or we will go ahead and do the surgery now. It will all depend on what
the scope shows us in the morning.
April 28th-Good news no surgery for now. The
scope showed that Timothy's stomach is 1/3rd the size it should be. It
also showed that the placement of his NJ tube had moved and it was actually
borderline NG and we were over loading his stomach when trying to bottle
feed. We are hoping to be able to bring him home Friday or Saturday. We
are getting his bottle feeds to 20 ccs per feeding(every 3 hours)and continuous
NJ feeds to get the calorie intake where it needs to be. We will hold his
bottles at 20 ccs for 1 week then very slowly start increasing his amounts
and give his stomach time to grow and catch up where it should be.(He'll
be on the NJ feeds for about one month)The dr. did say that he'll need
to be re-evaluated in a month or two and may still need surgery for the
reflux but we should be able to control it for now. Today Timothy turned
3 months old(90 days)and today was day 78 in the hospital. He weighs 8
pounds.
April 29th-I forgot to to add to Monday's
entry that Timothy had his circumcision. He handled it like a trooper and
is over the worst of it now. Timothy's departure from the hospital is planned
for Friday. He is still having multiple Brady spells some of which are
requiring stimulation, it is unknown at this time if they are related to
his reflux or not. It was 1 month ago today that he was readmitted to the
hospital. The doctor changed Timothy's reflux medication he is now taking
Propulsid every other feeding, Prilosec(instead of Zantac) once a day and
Mylanta at each feeding.
April 30th-We had a care conference today
with all of the doctors to make sure we all understood what the plans were
for Timothy's coming home and his treatments. We are still planning on
him coming home tomorrow. H e is doing o.k. with his bottle feeds. He is
still having multiple Brady spells.
May 1st-It happened Timothy came home today!!!!
Our home health care nurse will come in daily for the first 5 days, mainly
to check Timothy's weight. After that it'll be 3 times a week then
once a week. He goes each Friday to see his pediatrician and in 2 weeks
will see the Gastric doctor for a check-up. Timothy cam home on NJ feeds,
a pulse ox monitor, a CR monitor and will need the nebulizer. Timothy has
20ccs(30 ccs is an ounce) of formula by mouth every 3 hours. His NJ feedings
average out to be 19 ccs an hour(57 ccs every 3 hours). For those interested
these are his medications: Pulmozyme(keeps the secretions
broken up, given by nebulizer once a day for 1 1/2weeks for a total of
1 month)Nasarel(steroid given by neb. twice a day until who
knows when)Prilosec(reflux medication, stops the production
of acid in the body given once a day given through NJ tubing),Propulsid(Reflux
medication given 4 times a day which is every other feeding, given by mouth)Mylanta(given
after each feeding)Mylicon(given as needed for gas)Tylenol
as needed.
 
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