Ryan's January '08 Blog

January 1, 2008 - Happy New Year everyone!  We hope the new year treats you all very well.  Our year has not started off so well.  This morning when we checked in on Ryan he was doing well, had just taking a feeding and was happy in his bouncy chair.  The nurses seem to think going to full strength formula made a difference.  About 2 hours later as we were working our way down to the hospital we got a call that he was having problems breathing and that they have paged the neurosurgeon.  When we got to the hospital they said Ryan is having seizures.  These are not the kind there you shake, they are the kind where you drop your oxygen.  His eyes fluttered but they said this was not part of the seizure.  When he would have the seizure he was sucking on his binky like nothing was wrong.  It was very odd.  They were monitoring him with an EEG so they could capture the data and give it to the neurologist, who also had been paged.  Ryan has never had seizures so we were all a little shocked and concerned why this was all of a sudden happening.  The thoughts of why were he just came off of Adavan and could be having a withdrawal plus with the tap and taking hardware out of his head he might be having problems adjusting and his brain could be irritated.  What ever it is, it is scaring Mom & Dad.  They gave him some Phenabarbatol and that seemed to help the seizures.  He was able to work through them and they weren't as frequent.  When Mom left this evening he had not had one in 4 1/2 hours.  They are hoping these are temporary but we don't know yet.  After the EEG was done and there was data showing that the left & right side of the brain were connected with the seizures, they did a head ultrasound.  The radiologist came back with he thinks there is more bleeding in the brain, which they seemed to attribute to the draining of the cyst but he wasn't sure - it was hard to tell so off to get a CT we went.  From the CT we know the cyst on the right side has filled again and there is a little blood in the cyst but it does not look like a lot.  On the left side there is a lot of blood in the ventricle but we don't know if it has leaked into the brain tissue and caused more damage.  It was not there on the 12/15 CT scan and I do not believe anything was seen on the head ultrasound from yesterday so it seems to have been caused by the pulling of the external drain (as far as we can assume) and happened over night.  Is this bleeding causing the seizures?  We do not know.  We're concerned that this bleeding could lead to some brain damage on the left side but we don't know as of right now.  The neurosurgeon had been in contact with the doctors but this afternoon they have not been able to get a hold of him.  He had been skiing with his kids today but we had expected him to pop in this evening but as of 8:30 p.m. he had not come by.  So as of right now, the medication seems to have stopped the seizures and we have no idea what all of this means - is surgery needed, will we have to wait for the bleeding to break down again, etc.  Tomorrow we'll be meeting (hopefully) with the neurologist and neurosurgeon and we'll see what all this means. What a crappy way to start the new year.  Obviously Ryan did not listen to Mom's lecture yesterday that in 2008 we were not going to have any more issues - that we were going to get over the ones we currently have and then get healthy.  Please say a prayer for our little man to get healthy and that this new issue is nothing serious. 

January 2, 2008 - Ryan has not had any more seizures so everyone is pleased about that and he has been happy being fed again (they stopped yesterday for about 14 hours until they had an idea if he needed surgery or not).  He is acting normal and enjoying being held.  They spoke with the surgeon on his ostomy and he will go up 10 ml of formula every day as long as the output in his ostomy bag is not 160 ml or more.  If he has a lot of output then they will stop going up and reevaluate.  The neurologist came by and said with the amount of surgeries Ryan has had on his head plus the prematurity and ventrical hemmorage he is not surprised he is having seizures and a little surprised that they hadn't happened sooner.  Ryan's brain is irritated and rightfully so.  Had Ryan not been on certain drugs that have an anti-seizure feature to them he may have had seizures when he came back in with the infection.  For now we are going to keep the Phenabarb going.  Eventually we will stop and see if he has anymore seizures.  If he does then he will go back on the medicine and if not then he won't need it.  Right now we do not know if the seizures will be long term or short term.  The neurosurgeon stopped by and apparently yesterday his pager did not work and he lost his cell phone (but eventually got it back at lost & found) so he was very surprised this morning to hear from the PICU doctor saying they paged him like 30 times yesterday.  The neurosurgeon thought since he didn't hear from anyone in the afternoon that Ryan was ok.  So now as to what is going on.  The cyst on the right side he now believes is part of the ventricle that is its own separate pocket.  Not sure why there is a little bit of blood in there but it could be from tapping it.  The left side he is not sure why it bled since he didn't have any issues when he pulled the external drain out but has to assume it happened when the external drain was pulled out.  Unfortunately now we have to wait for the blood in the left ventricle to break down before Ryan can be reshunted with the temporary shunts (external or kidney).  He is thinking about putting the external drain back in at least the left side on Friday or Monday to see if that will help get the blood to drain out of the ventricle so we can get it to heal.  The right side he is toying with shunting or putting the external drain back in.  We're leaning towards external drain if the other side has to be.  So Ryan will be staying in the PICU for probably another month until we see how this all unfolds.  The one good thing is the bleeding is only in the ventricle - it does not look like it bled out in the brain tissue so we do not seem to be dealing with any new brain damage.  Whew!  So again poor Ryan is throw a curve ball.  He is getting little breaks like no new brain damage but not a big enough break of no new issues so he can heal from the old ones.  He is just such a champ - he just plugs right on through like ok what's next.  As long as Mom or Dad is holding him and he gets fed nothing else seems to be that big of a deal to him.  He is definitely the strongest person we know.  Please, please, please say a pray for Ryan.  We need him to get a big break so he has time to heal. 

January 4, 2008 - Yesterday Ryan finally had an eye exam.  His eyes look good and no longer has ROP!  Whew!  The eye doctor does not want to see him for 3 months.  Another little break!  The neurosurgeon came by and said he is putting external drains in at 7:30 a.m. today.  So Mom & Dad got to the hospital about 6:30.  Ryan was not happy - he was a hungry boy (they had not fed him since about 2:30 a.m.).  We got him down to the OR and told them to put him under soon - he was getting so upset about being hungry.  The surgery was only to last about an hour and a half - he got back to his room about noon - so 4 hours.  The right side was harder than expected to put the external drain in.  The neurosurgeon had to go through the cyst like part of the ventricle, through a wall/barrier to then get to the ventricle.  He used the endoscope and ultrasound to see where he was going so he did not go out into the brain by accident.  He said the wall/barrier between the two ventricle pieces was very tough and it took some work to tunnel through it.  This side took him about an hour and a half.  He scared Mom when he talked to us after surgery saying the right side was really bad so of course Mom was thinking the worst but then he explained it and it didn't sound that bad after all.  The left side went much quicker.  The neurosurgeon just put the drain into the fluid in the ventricle and not into the blood.  He is hoping the fluid will drain and then the blood will start to break down and drain out.  Mom & Dad were expecting to hear it would take 4 to 8 weeks for this to happen but the neurosurgeon said with the external drains the blood should drain out in the next week or two.  Let's pray/keep fingers crossed for this time frame!  Poor Ryan needs a break from surgeries so he can heal!  He will have a CT scan on Monday to see how things are draining.  Let's hope all drains well and there is no clogging of the tubing.  The neurosurgeon also said that it appears the bleeding has stopped so there isn't anything continuing to bleed - we just have this clot we have to get rid of.  That is good to know that there is not continuous bleeding.  After Ryan was all settled back in his room and awake, he was mad that the tube was in.  He gave sad pouty faces and cried - oh it was sad.  He even had what we thought was another seizure so they gave him more Phenabarb.  Mom & Dad ran to get lunch and then came back and they said he was having bronchialspasms, which basically his whole body tightens up and his saturations tank and he has a hard time breathing.  So maybe he did not have a seizure earlier and it now has Mom questioning if what he did on New Years Day was seizures because they acted about the same as the bronchialspasms.  He did this repeatedly and then the doctor had them adjust the vent settings and that seemed to help.  At 8 p.m. tonight they pulled the breathing tube out and so far no issues and he is a happy boy about that but now he is unhappy that he is hungry.  They expect to start feeding him at midnight.  A case of RSV showed up in the hospital in the last day so Ryan got his RSV shot this afternoon as well.  We should be able to hold him tomorrow.  In the last few days he has really been acting like he can hear (where we have had times where we worried he can't and he failed all those hearing tests).  He was very responsive to Mom & Dad's voices and would jump when the IV's signaled they were done or certain loud noises.  He really acted like he was hearing it all and was curious as to what he heard.  Let's hope this continues!

January 5, 2008 - Today was rather quiet for Ryan.  No new changes.  They are just watching his external drains pretty closely to make sure that the blood does not clog up the tubing.  He got held in the morning for a few hours by Mom and then again in the evening for a few hours by Dad.  He enjoyed eating his bottle (he's at 60 ml still) and watching his mobile.   

January 7, 2008 - Ryan has been doing well the last couple days.  He had a CT scan this morning and the neurosurgeon is pleased.  The fluid is drained but the blood hasn't drained much (didn't show much difference on the CT scan) so the neurosurgeon put some anti-clotting drug into the left drain to mainly keep the line from plugging.  He will be monitored closely while this drug is being used to make sure it doesn't go into the ventricle and open up where the blood originally came from and cause more bleeding.  They put him back on a 4 hour feeding schedule.  We had wondered if he needed to be back on his normal schedule and so far it seems to be better for him.  He is more hungry at 4 hours.  He has been eating well and took 80 ml at his last feeding that Mom was at.  He has been sleepy since last night and hopefully it is just him needing a day of sleep over anything else.  Mom checked with the doctors regarding if the New Years Day seizures might have been bronchialspasms and they said no they were seizures.  If they were bronchialspasms they would look different on the EEG.  Darn - was hoping that theory might hold true but oh well. 

January 8, 2008 - Ryan has been a little cranky today.  Dad went down about 6:30 a.m. after he got off work (he has moved to working nights so he can stay home with Ryan during the day, Mom will work during the day and stay with him at night when he comes home) to see him and he was cranky if the binky was not in his mouth.  Finally the nurse gave him some Tylenol and that seemed to help settle him down and he went to sleep.  This afternoon while Mom was there he was pretty happy until Mom put him back in bed when the neurosurgeon came in to give the anti-clotting medicine again.  After the neurosurgeon was finished Ryan realized he wasn't being held anymore and got mad.  He would get to where he would settle down but if he looked at Mom he would get upset again.  Finally Mom held him again and he settled down.  He did have Mom & the nurse laughing - he would give these weak whimper cries with the big pouty lip - oh it was so cute.  Ryan has been draining a lot of blood out of the left external drain so the neurosurgeon is pleased but the CT scan from today really didn't show much change (although the neurosurgeon did think the blood was a little less dense).  Ryan finished up his course of antibiotics for the spinal fluid infection and none of the tests of the fluid have come back positive for infection.  He is up to 90 ml of formula every 4 hours and is doing well with that.  We know it has been a long time since Ryan was born but we know not a lot know exactly the story of what happened that day so if you click the link you can go back to July 25th and read how it all happened.

January 10, 2008 - Ryan has been more cranky and does not want to eat.  He will start and then he stops all upset and refuses to eat so they feed him the rest with a feeding tube.  We think it is a belly issue but not sure what is causing it at this point.  He started on 24 calorie formula yesterday and they think that could be it but he started having issues taking his feeds the night of the 8th so Mom & Dad don't know if that is it.  At his 10 a.m. feeding within 30 minutes of eating he had a lot of output in his ostomy bag - almost as much as the feed - so they knew something was wrong.  The surgeon that did his ostomy said stop feeds for 6 hours and then try again using the 22 calorie formula giving 90 ml.  He took about 20 of that from the bottle and then refused so they fed the rest with the feeding tube.  He had basically no output with that feed.  Mom just talked to the night nurse and he was asleep during his 8 p.m. feed so she just fed it via the feeding tube and he did ok until about an hour later when he woke up screaming.  She said his ostomy bag was full but it only ended up being 45 ml instead of 80 ml but it is still not good.  It means his body is not absorbing the feed.  So they are going to stop the feeding for tonight and increase his IV nutrition.  Hopefully it is a little stomach bug and nothing else but his bowels could be irritated and going on strike again (what we don't need).  The first thought when all of this started was that the pressure in his head was causing him to have issues eating.  They adjusted the level that the externals drains drained from to see if that put less pressure on his head, which would cause less issues on the belly but that didn't do anything.  The CT scan today looked better - the blood is definitely draining good and the neurosurgeon is pleased.  He is talking of doing temporary shunts later next week.  If it is not one thing it is another with this boy.  Mom & Dad so wish he could get enough of a break to have time to recover and time just to feel good.  Please say a prayer for the little man - we need him over this tummy issue soon!  Oh by the way, Ryan turned 2 months today - adjusted age based on due date.  This adjusted age is what most everything is based on - development, clothing size, etc.  He turned 24 weeks yesterday based on birth date. 

January 12, 2008 - They stopped feeding Ryan the night of the 10th and decided to give him a day off and see if he feels better.  He was a lot less cranky yesterday and enjoyed hanging with Dad.  We have no idea what is wrong with his belly.  They thought maybe he had c diff which is a bacteria you can get from being on antibiotics a long time but that test came back negative.  They tried to get a hold of the surgeon that did the ostomy but last we knew they were never able to get in touch with her.  By the time we left he was really acting hungry so the doctor said they would try feeds in the evening and see how he did but they would be starting slow.  They fed him 30 ml around 9 p.m. last night and he did ok for 20 ml (taking by bottle) but then didn't want to take anymore so they did the rest via feeding tube.  He seems to be absorbing more of the food (not dumping it straight to the ostomy bag) so that is a good sign.  Mom fed him at 10 a.m. this morning and he took 40 of 60 ml before not wanting anymore and fell asleep.  At least he didn't flat out refuse and get all upset like he did the previous days.  He hung out with Mom this morning for a few hours and was very unhappy when he was put back.  We thought he was acting a little hungry so the nurse started feeding him a 1/2 hour early and he was taking it when we left.  Hopefully he quieted down for her after we left.  One improvement is he is on 1/32 liters of oxygen (meaning basically nothing) and doing great!  We have not got to this point before so it is nice to see his lungs are getting better and stronger even through all of this.  The neurosurgeon came by last night and put more anti-clotting drugs in Ryan's left external drain as he had no output yesterday.  He drained overnight but by the time Mom & Dad arrived this morning he was not draining again so we think the line is clogged with a blood clot.  The neurosurgeon will be called this afternoon and will most likely come in to put more anti-clotting drugs in the line. 

January 14, 2008 - The neurosurgeon came by first thing yesterday morning to flush Ryan's line and give another round of the anti-clotting drug.  Not much has drained since then and what has drained has not been very bloody.  Mom met with the neurosurgeon late this evening and he said as the clot gets older it changes characteristics and those characteristics don't work with the anti-clotting medicine so he thinks the drug is not working and the drain is clogged.  So either tonight or first thing in the morning Ryan will have a CT and then at least the left drain will be pulled out tomorrow morning.  We'll have to wait to see the right side on the CT before the neurosurgeon decides if he will pull that one now or later.  Then once we know more on how the blood looks and how the ventricles look, we'll plan our next course of action.  Ryan has been fussy again the last two days and has started not wanting food again and is not absorbing it.  Dad spoke with the doctor this morning trying to find out if there is something we're not looking for or if this is common with kids who have had all this trauma.  The doctor said it is normal and they are not worried about it at this point.  It will just take time.  For Mom & Dad it is big because Ryan loves his food and for him to not be interested in eating - there is something wrong so we're pushing them to make sure they are looking at everything while trying not to be the annoying parents.

January 15, 2008 - Last night while Mom held Ryan he got warm and was running a little temp, which he sometimes does when we hold him but he usually cools right down when we put him back.  Last night he also increased his heart rate and kept it there and was taking short breaths.  Mom alerted the nurse and they assessed him and did some cultures to be safe.  He cooled down within an hour and settled his heart rate so we had hoped it was an isolated incident.  Well overnight he kept running temperatures so they did more cultures/lab work on him.  When we got there this morning nothing had come back yet.  The neurosurgeon came to do the drain removal and said the CT was looking pretty good as far as the left side was concerned.  Because the left side didn't have much fluid in it he could not tell if the blood was to the point where it looked like fluid or was showing on the scan looking like brain so we won't know for sure until Ryan's ventricle starts to accumulate fluid.  He wasn't sure if he wanted to pull the right side because of the issues he had putting the right side in (poking through some tissue/membrane).  His plan was to leave the right side drain in until we knew we were ready to reshunt and then he would pull out the tubing but leave the catheter in so the hole created from poking through tissue/membrane would not close so he didn't touch the right drain today.  Yesterday they sent off spinal fluid for testing and the gram stains came back negative.  This afternoon we got word that they grew a new infection in the right ventricle.  This is a different type of infection than what we had before - this one is not a staph infection but is (if we heard right) a type of strep and it does not sound like it is as bad as what Ryan had before (even though an infection in your spinal fluid is never good).  He is now on 4 different antibiotics and we are not sure how long this course of drugs will be.  At least the fevers are explained and will hopefully stop by tomorrow.  We knew that the right drain would have to come out - you don't want it left in the ventricle where it could colonize the infection.  The neurosurgeon plans to do it tomorrow but does not know yet if he will just pull it and let the hole close or if he will pull the existing and then put in a new one so the hole won't close.  So again we have another new issue that poor little Ryan has to deal with.  He so needs to get to the point where we have no new issues - that we can just get over the existing ones.  Please pray for our sweet boy.  Again we need all the prayers we can get.  He has got to catch a break one of these days.  

January 16, 2008 - When we got to the hospital this morning, they told us the neurosurgeon will be in surgery at 10:30 so they expected him to come by and pull the drain beforehand.  They didn't think he was going to replace it - just pull it.  10:30 came and went with no neurosurgeon.  We knew his case would be at least a 4 hour surgery so we figured we were looking at sometime around 4.  While we waited, the infectious disease specialist stopped by and said the infection is a weak one but Ryan would be on antibiotics for 7 days.  The PICU doctor stopped in and said he talked with the surgeon that did the ostomy and she is having a gastro specialist come in this week and see Ryan.  Hopefully he can help us get Ryan able to eat.  They did not feed him at all yesterday and today they have been giving him 5 ml per hour on a continuous pump and will see how he does.  This will be a slow process.  The neurosurgeon made it in about 4:30 and said while he didn't want to lose that hole that the catheter is in, he had decided to just pull the drain and let the antibiotics have a chance to work.  He pulled the drain and all went well.  We believe Ryan will have a CT in the next day or two to see how the fluid is building, see if we can see the blood and check for any new and see if we have a timeframe for putting the temporary shunts in.  Ryan seemed to be feeling better today.  The night nurse said his fever seemed to break by about 6 a.m. so the antibiotics must be kicking in.  Ryan did get pretty warm while Mom held him so we put him in his bouncy seat and let him cool down.  Hopefully he won't have any other raise in  temperature this evening.  He was alert and chatty and pretty darn cute today.  Our little guy has the nurses & RTs in the PICU wrapped around his little finger just like he did in the NICU.  Mom & Dad are exhausted from the last two days.  Hopefully the rest of the week and weekend will be quiet with no new issues.   

January 17, 2008 - Today has been a relatively quiet day for Ryan.  He seems to be feeling better and looks great.  The nurse's chart said he weighed in at 5.4 kilos today so about 11.9 lbs.  What a chubby boy!  Ryan has had some great wakeful periods today and some good sleep.  He slept on Dad's shoulder for a couple hours this morning and this evening Mom put him on his tummy on the Boppy and he was on that for 3 hours.  He took about a 30 minute nap on it but the rest of the time he was wide eyed, sucking on his binky and looking around.  He loved it.  The PICU staff kept coming by saying how cute he is, which of course made Mom proud.  The gastro specialist came by during the noon hour.  He had spoken with the pediatric surgeon and read Ryan's chart.  He figures that part of the reason for Ryan's tummy troubles is that Ryan has been on so many antibiotics, which kills good and bad bacteria so the good bacteria he really needs in his bowels is getting killed.  So he put Ryan on a medicine that will create the good bacteria, plus put him on an antifungal drug, which will make sure that there isn't too much bacteria in the belly as well as a drug that will help heal his esophagus and belly.  The gastro guy said it will be a slow process and we'll go at Ryan's pace but seemed to think we'd get him back on track.  Ryan had a head ultrasound today and the neurosurgeon came by this evening and said it looked pretty good.  There is no new bleeding (whew hoo) and the infectious disease specialist told the neurosurgeon he did not want anything in Ryan's head for at least 10 days from the day we got the first culture back with infection, which puts us at about next Friday for surgery.  If Ryan starts getting too much fluid built up the neurosurgeon will do a tap to relieve the pressure, which will allow the fluid to be tested to make sure the infection is clearing up.  The infectious disease specialist also asked the neurosurgeon if he was thinking of putting the subgaleal shunts back in for a temporary solution.  These are the first shunts Ryan got back in September that caused the bubble on top of his head.  Initially when Mom asked this question weeks ago the neurosurgeon said no but tonight him and Mom had a chat about it and it may be back on the table of options - it may be a better option than kidneys or external drain.  The issues are they haven't really done them on kids this old (by now you get the long term vp shunts that we had) and where the horns of the ventricles (front portion of the c shaped ventricle) have been collapsed he could not put them in at the same position as it would not drain anything.  He may have to put them in the back of the ventricle and drain them up to the top, which has not been done but could be done.  This would mean Ryan would get his bubble back on his head but I think we'd take that over possible infection to his kidneys or having to mess with the external drain.  The neurosurgeon said the scalp is a great area to drain to - it usually absorbs really well.  One other possible issue could be that when Ryan had the subgaleals last time at first he did absorb the fluid rather well but then he really slowed down at absorbing it - if he was absorbing it at all.  Our worry would be that his body wouldn't absorb it but we think it may be worth trying.  Ryan will have a CT or ultrasound over the weekend to see how things are progressing and then we'll just wait and see.      

January 18, 2008 - So Ryan's weight from yesterday does not seem to be correct.  Mom checked today and he was 4.6 kilos.  She checked 2 & 3 days ago and he was 4.6 kilos so we think the 5.4 was a typo.  4.6 kilos is like 10.1 pounds.  His cheeks still seem to be chubbier than they were a few days ago.  He has had a good day - good wakeful periods and good sleep periods.  Ryan has still been putting out a lot in his ostomy bag so the doctor changed him down to quarter strength formula (3/4 Pedialyte, 1/4 formula) and his output has come way down.  The gastroenterologist came by and was glad the doctor made the change and is pleased that the output numbers are coming down.  He thinks we start seeing some progress in the next few days.  Ryan has been rooting around and acting hungry but he is still very hesitant when you put his binky in his mouth.  He is either worried that food is going to hurt or that we are trying to give him Pedialyte again (he does not like the taste of it - which all of the doctors say it tastes nasty).  The neurosurgeon stopped by this evening and is pleased with how Ryan's head felt.  He said we are shooting for surgery Friday and Mom told him to go research on our options.  We'll chat more with him about it beginning to middle of next week.  So we are hopeful that it will be a quiet weekend. 

January 20, 2008 - Ryan has had a quiet weekend - just what we wanted.  The staff has been spoiling him by holding him a lot and are very apologetic to us but we're of the opinion that he has been so sick and missed out on so much holding in his short life that go ahead and hold him.  Not many changes this weekend.  Today they upped his feed to 10 ml per hour on a constant feed.  He has been acting so hungry the last two days - rooting, smacking his lips and the binky isn't enough.  He has been doing well on 1/32 of a liter of air so in talking with the doctor today he said we could start trying Ryan with no oxygen and see how he does.  We took him off about noon and he did great until about 6:15 p.m.  He fussed at Mom a few times and dropped his numbers but rebounded very well.  He fell asleep about 5:30 and that is when he started needing a little bit more help.  We were very happy for the guy.  If he keeps it up we may be able to get him off oxygen during awake times and only have it on during periods when he sleeps - that would be nice!  He has been a lot of fun this weekend and we've enjoyed it so much. 

January 22, 2008 - They started Ryan with no cannula about 1 p.m. yesterday and he is still going strong with out it - 30 hours and counting!  He has had a few times where he needed a little blow by but it seems like with a little repositioning or settling him down from being pissed off, he is good to go!  We are so excited for the little guy.  Maybe he has realized how nice it is not to have prongs stuck up his nose and is going to work to not need it.  The doctor ordered an echocardiogram to make sure with the lung disease Ryan has and now not using oxygen that he doesn't develop pulmonary hypertension.  They did the echo late in the day and when Mom left this evening there wasn't a radiologist report yet so we'll update tomorrow how it turned out.  Let's hope he gets a break on this.  Yesterday Ryan had a head ultrasound and it looked pretty good.  The neurosurgeon is pleased and I think we are all hoping the next ultrasound doesn't show much increase in fluid so we can push off surgery until next week.  Keeping the hardware out of his head for as long as possible would be nice for the little guy.  (Ultimately we all hope the blockages he has to make the spinal fluid move through his body on its own will become unblocked so we don't need shunts after all but know the likelihood of Ryan needing shunts is pretty high - but we can always hope & pray!)  There will be another head ultrasound tomorrow and hopefully we'll know more about Friday.  The doctors changed the formula Ryan is on to one for kids with absortion issues and Ryan seems to be absorbing it better and not dumping as much in his ostomy bag.  They have increased him to 12 ml per hour today.  It may take quite a while for us to get him taking bottles again.  It may end up being after they take down the stoma and put it back together, which is about 4-6 weeks away.   

January 23, 2008 - Ryan has gone over 48 hours without oxygen support and is still going strong!  Ryan has been doing really well since they changed his formula.  His ostomy output has come way down.  Tomorrow they will go up to 1/2 strength formula and up the feeds to 14 ml per hour.  The results from the echocardiogram were that everything looks normal - no pulmonary hypertension found.  Whew!  The neurosurgeon came by this evening and there is really no change on the head ultrasound done today.  He has an OR booked for 9:30 a.m. Friday.  We talked about it and decided to wait on surgery.  The longer Ryan can go without hardware in his head the better.  It will be better to let the ventricles fill up more so we can see what areas fill up - to see if we have other pockets.  We just don't want to let it get to the point where he is feeling the pressure.  Every few days an ultrasound will be done to watch what is going on.  We'll probably expect surgery to be next week or the week after.  The neurosurgeon is going to do the subaleals.  He researched it and cannot find anyone who has put these in a kid as old as Ryan (usually done on 30-35 weekers) or who has put them in to the back of the ventricle.  Leave it to Ryan to be the first.  There is no increased risk with trying it and it still seems like a better solution than external or kidneys.  The worst thing that could happen is Ryan's body does not absorb the fluid or he develops new pockets so we have to have another surgery.  Time will tell that one.  The neurosurgeon talked with the pediatric general surgeon about the timing of the ostomy take down and the timing of the shunts to the belly.  It was decided that they will do the take down the end of February and put the shunts in 2 weeks later (so mid-March).  Originally the neurosurgeon wanted to wait 2 months but the surgeon thinks that in theory the fluid in the belly should help lubricate things and should reduce the scar tissue (I think he said scar tissue but it might have been something different).  We will see if that theory holds.  So we will continue on the wait and see path that we are on. 

January 25, 2008 - Ryan is 6 months old today!  It is hard to believe we have been going through all of this that long.  He weighed in yesterday at 12 lbs!  He is almost 6 times his birth weight!  We think this number is correct as he has been steadily increasing his weight for days on the charts.  He was still off oxygen until this afternoon when he was keeping his saturations around 89 (so he kept setting off the monitor) so they put him back on nasal cannula to give him a little break - which is ok with us.  He went 4 days without any - that was wonderful.  The only changes have been they have gone to 1/2 strength formula and he seems to be tolerating it and he is at 15 ml per hour.  He came off the antibiotics today and he will have a head ultrasound on Monday.  He was totally spoiled today - Dad got to the hospital around 7 and held Ryan.  When he left, Ryan's nurse wanted to hold him and when we got back at 4, the unit clerk had just finished holding him.  He was in his bouncy seat when we arrived and as we were washing our hands (there is a sink right outside his room) he was watching us and then as soon as we got up next to him he just started smiling at us and cooing.  Mom tried to quickly get the camera and got a little of it on film.  He was so cute.  We are hoping for another quiet weekend!

January 27, 2008 - Ryan has had a nice quiet weekend.  Saturday Mom & Dad went down to Parma for the day so the nurses loved on Ryan all day.  They held him during the morning and then decided he needed to go on a field trip to the nurses desk, where he spent the afternoon.  He loved all the attention and was very curious looking around and loved the vacuum when it came through.  He was awake most of the day and the staff just loved it.  He was doing pretty good when we got there in the evening.  This morning he had a bath, got put in a cute outfit and then headed back out to the nurses desk until we got there at noon.  Oh it was so cute seeing him out there.  We don't think he was too happy having to go back to his room when we got there.  But he enjoyed being held for a few hours and then we put him on his belly on his Boppy and he passed out for 3 hours.  Then they decided to move us out of the PICU.  They had got 1 RSV case in and were getting another so the doctor decided Ryan needed to move to a place a little safer so we got moved (to the PICU staff dismay) over to the oncology ward (luckily it is connected to the PICU).  We now have a room with a bathroom in it - that is a bonus for Mom & Dad.  We got him all settled and then Dad held him until he passed out.  He was sleeping nicely when we left so hopefully he will sleep all night.  The PICU nurses said they would be over to see him tomorrow - we think he will be missed.  Luckily for them we will probably be around a lot for the next couple years so they will get to see him often!  Tomorrow is a head ultrasound and we're hoping it is still looking good.  The PICU doctor said he thought it was a little less full today (which would be a good thing) but we will see what the ultrasound says tomorrow!

January 28, 2008 - Ryan hung out with Dad and Grandpa this morning.  He had his head ultrasound and Mom met with the neurosurgeon late this afternoon.  His ventricles do have more fluid in them but it is not a large increase from last Wednesday.  The neurosurgeon thinks that Ryan should probably be feeling pressure on the left side but is happy to hear Ryan is acting great.  We will have another head ultrasound on Wednesday or Thursday and then most likely surgery Friday.  We don't want Ryan to get too much of a headache.  The ventricles are showing up in little pockets instead of one fluid piece.  We'll have to see how they fill the rest of the week.  These pockets will determine how the neurosurgeon goes in and how he connects them all so they drain.  Then our issue will be making sure no new pockets develop so he has to go back in.  They have decided to let Ryan try taking a small amount of formula to see how he does twice a day.  They turn the feeding pump off 30 minutes beforehand and then let him have 10 ml.  When he is finished the turn the pump back on.  This evening was his first try and he did pretty well.  He was very interested but then backed away - either had too much in his mouth or was unsure if it would hurt his belly.  He routinely did this and Mom was not surprised but in the end he took all 10 ml.  It was probably the right amount until we see how he handles it and he can see how it makes him feel. 

January 30, 2008 - Not a lot new to report.  Ryan has been doing well.  We are working with him on taking the 10 ml of formula.  The physical therapist thinks he has such a strong suck that he takes in more than he is ready for and possibly scares him so tonight when Mom gave him the formula she just used a syringe and put a little in his mouth as he sucked on the binky and he seemed pretty happy with that.  The neurosurgeon stopped by tonight and is pleased with how Ryan's head looks and feels and is also happy to hear that he does not seem to be showing signs of pressure.  The ultrasound is ordered for tomorrow.  We're hoping it will be done early and then Mom & Dad are to meet with the neurosurgeon at 10:30 to go over it and decide if surgery will be Friday or pushed out to next week.  If the ultrasound isn't done early then Mom will meet with the neurosurgeon after 4.

January 31, 2008 - We close out January on a good note - no surgery this week!  The head ultrasound looked pretty much the same as Monday and Ryan is still acting good so we will tentatively plan for surgery the end of next week.  Monday will be another head ultrasound and we'll see how it looks!  RSV cases are invading the hospital.  I believe there is close to 10 cases.  We have to be extra careful now about those germs getting near Ryan.  Luckily in the oncology ward they won't let those kinds of cases in unless it is an oncology patient that has it and Mom learned tonight that 3 doors down from Ryan is an oncology patient with RSV.  We will definitely be careful to wash well after being outside Ryan's room (at the nurses desk or in the kitchen) to make sure we don't bring those germs back to him.  Ryan will be getting his next RSV shot tomorrow - thank goodness!  They have told us that if they get too many cases and it isn't safe for Ryan to be in the hospital they will send him home (but we'll be on IV nutrition still so that will be a big pain)!  Ryan did well with his 10 ml of bottle feeding and his ostomy output has been low so tomorrow we go to full strength formula!  Ryan got visited by Aunt Lindsey and Grandma today and we got some cute pictures and video.