|Purpose of page||I will try to update these pages daily when
I get in. It is not that I mind people asking me how he is, but it will
save me repeating the same story over and over again which is a little
hard for me, especially if he has had a rough night.
(Plus, my Boss may feel that I am accomplishing more work if I am not always talking about Sullivan when he comes to my door!)
Feel free to ask questions, but if you want a quick update, check here first to see if I have made an update. (Note: my schedule will probably be such that I will arrive between 8:45 and 10 am and I'll make this update my first task of the day)
(When available, I will put images in here too, or at least links to them.)
|Dec. 2, Wed.
|Sullivan had a good night. He is still at Sick Kids (though I suppose
I should start calling it Hospital for Sick Children!, or HSC
for short). He was transferred there from Mt. Sinai on Sunday with Necrotizing
Enterocolitis and a possible perforated gut (intestines).
Drains were put into his lower abdomen on Sunday night and he had a good Monday.
Tuesday he seemed to be getting more lethargic, although all his vital signs are doing well (heart rate, breathing, ventilation rate, oxygen level (a little more than room air to help him fight the infection), blood pressure etc.)
He was weighed Tuesday morning, and he weighed 630 grams (down 20 from Sunday, but still up 30 from birth weight). It may be a little hard for him to gain weight immediately because his feeds of breast milk have stopped and he is back on TPN in his IV. But he does need to put on some weight to help him fight the infection (he is on wide spectrum antibiotics) so we hope he starts gaining again soon.
Overnight Tues./Wed. there was concern because his belly was getting red again, and a little more distended. So he was given X-rays every 6 hours to look for gas in the abdominal cavity. They have shown no change from 2 pm Tuesday, so the surgeons are in a watch an see mode (if necessary, they will operate to remove the bad section of intestine , but because of his size they do not want to have to resort to that.)
He is holding his own today, no better than yesterday, but no worse.
I hope this helps, Andrew
|Dec. 3, Thurs.
|Sullivan is doing better. The surgeon came by yesterday when he
wasn't looking so good, and she pulled the drains out about 1 cm in case
they were kinked. He drained some more and now is once again looking better.
His weight is back up to 660 grams, so although he is only on an IV, he is back to putting some weight on. That is exactly what he needs to do.
|Dec. 4, Fri.||Sullivan had a good day yesterday and a good night last night. His
belly is looking a lot better, and he is more animated that he has been
in the last few days. So, things are looking up.
I have put together a page of images from the last roll of film I got back.
|Dec. 7, Mon.
|A very good weekend. As he celebrated his 4 week birthday on Sunday,
he weighed in at 740 grams. That translates to 1 lb. 10 oz, and a very
good direction for Sullivan to be taking.
He had visits from both sets of grandparents. He also got to sleep on his stomach for the first time in 7 days.
One drain has been removed, and the other will probably come out tomorrow.
AND, I did forget to mention this ...
I got to hold him for 40 minutes on Sunday night. Outside the incubator, bundled in 2 large flannel blankets, me in the rocking chair, him on my shoulder, he connected to the ventilator, and all his other monitors.
It was wonderful. He handled it well (temperature and breathing wise), and so did Dad and Mom.
|Dec. 8, Tues.
|A rough night again. He weighed in at 790 grams, which is good,
but then it was decided that his recent breathing problems where he has
required more oxygen, was due to fluid in his lungs.
He was given Lasics (sp?) which draws fluid out of the body, and that improved his situation. He is resting comfortably today.
So, part of his recent weight gain is probably due to the "water retention".
We'll see when he is weighed next.
(for clarification, the 740 grams measurement was Sat. night/Sun. am, and the 790 gram measurement Mon. night)
|Dec. 9, Wed.
|Sullivan had a quiet night. They weighed him again, and he is now ringing in at 807 grams. He is still requiring more oxygen on a regular basis, and that is being watched by the doctors. There are a few possible causes, and thus more than one possible solution.|
|Dec. 11, Fri.
| I hope no one got worried with no update yesterday. I had
a dental appt., so took the day off.
Sullivan slipped back a little to 802 grams. This is due to the Lasics (sp?) he has been given to reduce the fluid in his lungs.
His hemoglobin level was a little low on Wednesday night, so they decided to give him a blood transfusion. Also, since he was having some trouble oxygenating his blood, they decided the transfusion would help. This is the 2nd one he has had. (The underlying reasoning, is that a premature baby does not yet produce its own red blood cells, so every bit of blood taken for blood tests, reduces the number of red blood cells)
He responded well to the transfusion, and is doing well.
He still requires more oxygen, so he does have some lung damage due to being on the ventilator for so long (approaching 5 weeks). Since his lungs are still developing, he may be able to outgrow the damage, but we'll have to wait and see. Once his body weight approaches 1 kilogram, they will try to get him off of the ventilator, and that will help the situation.
He has started being fed breast milk again (via a feeding tube right to his stomach), though that is only 1 cc every 6 hours. It will be a slow process to get back up to a full feed of 8 cc in 2 hours!
|Dec. 14, Mon.
| A very good weekend. Sullivan is now up to 870 grams. He
is fast approaching 908 grams which is 2 lb. and approaching 1 kilo, which
is the milestone where they will consider removing him from the ventilator.
He is on steroids to help improve his lung condition. His ventilator rate has been turned down to 12bpm (breaths per minute), and he is getting along on 29-35 percent oxygen, which is better than it was (though still up from room air of 21 percent).
I held him outside the incubator for about 40 minutes on Saturday, and he did well, looking at me for the first bit, and sleeping for the rest. My mother was visiting at the time.
On Sunday, Maureen got to do Kangaroo care, where he is placed on mom's chest, skin to skin, without the flannel blank in between. He gets to feel warm skin, and learn what mom and dad smell like. It was a great experience, and he slept the whole time.
|Dec. 15, Tues.
| Last night his Long Line started acting up. (It is
a "long" intravenous that goes in his arm and into a larger vein in his
chest. It allows for higher volumes of fluids, and can stay in longer.)
Sullivan's had migrated, and instead of being in a vein, it was now in tissue. This caused him to swell up immensely. His face, upper arm and chest were really puffy. The line was removed, and they attempted to put one in his other arm, no luck. Then they shaved part of his head and tried an IV there, no luck. They were finally able to get one into his foot, and they have scheduled a visit to interventional radiology Tuesday, so another long line can be put in. (i.e. send him in a portable isolette to radiology, put in the long line, and then use the X-ray machine to verify the proper location of the long line. Also, he'll be given a paralysing drug, and some morphine about 1/2 hour before he is sent down.)
His weight last night was 910 grams (yea, over 2 lb., BUT a lot of that fluid, but I'll take it).
Also, his oxygen level required is now down to 29-31%. This is due to the steroids which appear to be doing their job. His blood gas test was the best ever, with his C02 level the lowest it has been. His breathing rate is now set at 12.
Mom got to hold him again last night. Also this morning, his Aunt visited.
Lastly, I have put together a new gallery of photos. Enjoy!
(Dec 2 - 12)
|Dec. 16, Wed.
| Sullivan's weight gains are hard to believe, but he is really
rocketing now. He may even be 1000 grams by the weekend.
He did have a rough day yesterday, physically. He went to radiology in the late afternoon, where they tried to put a Long Line in his arm. They were not successful so they had to put in a central venous line to his jugular.
Very scary sounding, but apparently very common. As I said yesterday, for all this procedure they gave him a paralysing drug, and morphine. The line is then inserted in his upper right chest, and threaded, using X-rays and ultrasound, to his jugular under the skin.
When we saw him last night, he was still knocked out from the procedure and the drugs, and was breathing solely with the ventilator which had been turned up to 40 breaths a minute. He looked like a truck had hit him. Bruised arms and hands, partially shaved head, and the only movement was his chest from the ventilator, and a twitch every now and then. No eye movements, no tongue movements, and his arms were limp. He looked a real sorry sight!
He woke up later after we had left.
Today, he is sleeping peacefully, looking a little better. His Uncle also visited this morning.
|Dec 17, Thur.
| If it wasn't for his IV problems, there might be nothing
to talk about! His central line started acting up last night. His neck
started swelling up with a collection of fluid under the skin. It isn't
blood, so it is probably somehow connected to the IV that goes into his
jugular and either its placement, or some sort of blockage.
Today they will have radiology and intravascular take a look to determine where the Long Line is placed. They will be injecting a dye into the IV and then use X-rays to trace the path of the fluid. We hope he doesn't have to get a new line because it was such a tough procedure on him!
He lost some weight last night, so that is probably a reflection of him losing some of the fluid he was retaining. He only got 1 of his 1 cc breast milk feeds last night, because he had to be ready for this investigation today.
Another thing, his belly did increase 3cm in girth in 1 day and that is of some concern. It could mean the NEC problem has returned, but they don't seem overly concerned yet because all the other signs are good. They'll just watch him, and we'll hope it is just gas.
Last but not least, Sullivan grabbed a hold of his ventilator tube last night and gave it a good yank "trying to get it out". He dislodged it enough that the nurses had to come and reposition it (actually he might have been given a new one!) and now he has bags on his hands to stop him from grabbing it! Now he can't put his fingers in his mouth like he had been doing.
Such is yet another day in the life if Sullivan Nash (at the hospital he is still referred to as Sullivan Riley .. I'll have to get that changed soon!)
|Dec 18, Fri.|| Sullivan wasn't weighed last night. They were giving him
The doctors decided that the swelling in his neck was simply inflammation due to the irritation of putting the long line into his jugular. He looked better thursday evening. He still has his boxing gloves on, but they don't seem to be bothering him too much, except he can't put his fingers in his mouth.
He is looking a little pale because his hemoglobin is low, but since he is still oxygenating his blood well, they won't be giving him another transfusion unless things change.
His 6 week birthday will be on Sunday.
|Dec 21, Mon.
| Good weekend. His weight fluctuated during the weekend. He
reached 960 grams, slipped back to 930 grams, and is once again back to
He needed a third transfusion, and was given lasics (sp?) on Saturday. That gets fluid out of his system after the transfusion, and he "peeed" 45 grams after that! No wonder his weight swings high and low.
The bags remain on his hands so that he won't grab onto any of his tubes. His feeds of breast milk are slowly increasing and are now up to 3 ccs every 4 hours. There is talk about moving Sullivan back to Mt. Sinai, though no beds are currently available. But he may be back there before Christmas. He's a boy on the move.
|Dec 22, Tues.
| Sullivan was ready for transport back to Mt. Sinai last night.
We had been notified on Sunday that they were thinking of sending him back
there. We got a call from his nurse last night saying they were ready to
transport, and that his bags were packed. The Resident who was looking
after him had said her good byes to us. Then we got a call saying that
Mt. Sinai had just received two admissions and Sullivan couldn't be moved.
He'll be moved when a bed (isolette spot) becomes available.
Transport back to Mt. Sinai is good news. It means he is not sick enough to require staying at HSC. We are a bit concerned though, because he has not made it back to full feeds yet, and we have just become comfortable with his nurses, but we know he is only just across the street if there are any concerns.
|***Bonus***|| Here is an image special! Sullivan's
This is Sullivan's first picture taken without any tubes in his nose or mouth. He is pictured here with Dr. Alexander.
The picture was taken as he was being reintubated (the ventilator tube being changed) and the doctor thought we might like a picture (we were in the waiting room while this was happening).
It is from around Dec 10th or so.
|Dec 23, Wed.
| 10 grams to go. Kilo Boy has almost arrived. 990 big
huge grams were measured last night. At one point the scale actually registered
1.00 and I thought he had finally made it, but the nurse lifted the tubes
and wires a little higher, and it registered .99!
He was transferred from Hospital for Sick Children back to Mt. Sinai in the afternoon on Tuesday. He even has the same spot back that he had prior to leaving Mt. Sinai, though we haven't determined if he will have the same primary nurse. Her schedule may be full, so we may get someone different.
Sullivan Nash! He now has his correct name! On transfer we had him reregistered with his correct last name, instead of using his Mom's last name as he had been registered previously. That also means I'll no longer be Mr. Riley, as I was constantly being referred to (though Maureen will now be Mrs. Nash).
The environments between the hospitals are quite different. Sick Kids has 10 smaller rooms, that hold 7 beds each. Much of the time, the fluorescent lights are turned off, so the lighting is lower. Sullivan was beside a window looking south which actually made his isolette quite warm during the day.
At Mt. Sinai there is 1 room with 28 beds, it is usually quite bright, and very noisy. There are no windows, so you don't know if it is daytime or night time!
Each took a bit of getting used to.
Also, "feeds increasing" is radically different at the two hospitals. At Sick Kids, they kept the same feeding level for 48 hours (i.e. 1cc/6hrs then 1cc/4hrs are all done 48 hours at a time). At Mt. Sinai, they increase the feeds every 2 feed cycles (i.e. after Sullivan was at Mt. Sinai for 8 hours, his feeds were increased.) We'll see how Sullivan's gut tolerates that!
|Dec 23, Wed.
|Just to show you how quickly things can change, this is an update
from my morning report.
As the morning progressed today, Sullivan began requiring more and more Oxygen. Room air is 21%, and he had been doing well on 27-31% Oxygen, but near noon, he was requiring 80%!!!
They took out his ventilator tube, and tried nasal prongs, but he was still requiring 80%. They think it could be a "rebound" from his treatment of steroids (4 days of Dex were given last week, which improved his lungs, and had decreased his Oxygen requirement). He was reintubated (long ventilator tube back into his lungs) and he was still requiring more oxygen, but he did bounce back to the mid 30's. They may put him on another session of Dex but they want to wait to see if he recovers on his own.
|Dec 24, Thurs.
| KILO BOY has arrived.
He broke the kilo barrier last night. Our boy is off to better and brighter
things now. This should mean they can seriously consider getting him off
of the ventilator. But, Sullivan's Oxygen requirements are still higher
than recently at 35%. They still have the ventilator turned up to 18 breaths
per minute, a lot higher than his previous 10 breaths per minute, but that
is to give him a break, and allow him to rest a little more so his Oxygen
requirement will be less.
He'll have to recover from this latest change before they can get him over to the C-pap type of ventilator (nasal prongs, instead of tube into the lungs).
We're looking forward to a quiet christmas, with relatives visiting.
|Dec 29, Tues.
| Sullivan has gained weight, and then held steady. His weight
for the last 3 days has been 1070 grams.
He had a busy weekend with many relatives visiting.
He is not tolerating his feeds of breast milk very well! Mt Sinai had increased his feeds to 4 ccs every 4 hours, but found too much undigested milk before the next feed. So they scaled back to 2 ccs every 4 hours, then increased it again to 2 ccs every 2 hours. But he would not consistently digest his milk!
To try to solve that problem, they have gone to a continuous feed, of 1 or 1.5 ccs every hour. We'll see if he tolerates that, but he may have a stricture in his intestines from the NEC that he had, that is affecting his ability to digest.
On Monday the Doctors tried ex-tubating him, and trying out a short tube ventilator. He was on it for about 5 hours. With the short tube, it goes down the throat a bit, but not as far as the long tube that goes right into the lungs. Instead of the short tube forcing a breath, it simply provides constant +ve pressure so that his lungs don't collapse, and when he breaths in, the lungs fill better.
But, on the short tube, even though he was essentially breathing on his own, he was requiring 60% Oxygen, to keep his blood Oxygen saturation level up.
So after a 5 hour try, he was put back on the long tube ventilator.
They will wait a few days before trying again.
He is quite calm, and a nice pink colour. He tolerates the handling quite well, and he doesn't cry much (once again, we hear no crying because the breathing tube bypasses his vocal cords.) But occaisionally he does open his mouth in a crying gesture but he usually settles down quite quickly.
|Dec 30, Wed.
| Sullivan holds steady at 1070 grams (4 days in a row!). The
continuous feed seems to be working. He still isn't getting a high volume,
but he is tolerating the feeds.
The breaths per minute are down to 12, and his Oxygen requirement is about 26 - 31%.
He has developed a good sucking reflex, and will suck on my pinky finger for over 20 minutes, off and on. Pretty good suction. That will come in handy later.
A few more images have been uploaded: Sullivan Gallery 4
|Dec 31, Thurs.
| Sullivan would have been 35 weeks gestation today. He'll
be 8 weeks old this Sunday and he has already had his first 15 seconds
of fame! He was on CITY-TV news last night at 6pm. Lauri di Batista was
filming in the NICU, and they wanted to talk to a mom (and show a small
baby) in connection with the story about the moms that were flown
to Windsor. So, mother and son Sullivan (identified by name on air) were
shown during the news.
Also, because she was signing a waiver for CITY-TV, CBC radio asked if they could ask some questions, and so Maureen did, and then had a couple of sound bytes played on CBC radio news (at least at 5pm last night, and 7am this morning) from her interview with the Health correspondent (A. Winthrop)
Fame is fleeting, but the relatives and friends we were able to contact beforehand enjoyed the brief glimpse of Sullivan.