Ryan's March '08 Blog

March 2, 2008 - Ryan weighed in at 13 lbs 14 oz today.  We think those cheeks are getting bigger again.  Ryan had a good weekend.  Lots of play time, walks, wagon rides, cuddling, and snoozing.  We let him have a break from his pjs and put him in overalls - he was so cute.  He got his RSV shot on Saturday so he was a little fussier Sunday but we attributed it to the shot and hunger.  He is on 1/2 strength formula and takes about 20 ml per mouth every 2-3 hours and over night gets 11 ml per hour on a continuous drip.  He hung out with Grandma & Grandpa Saturday night so Mom & Dad could go to a birthday party and he got a visit on Saturday & Sunday from his NICU RT Linette.  Today's video is very cute.  Ryan was playing with his kicking toy and ended up kicking off the probe on his toe (for the monitors) so he was setting off all sorts of alarms.  The nurse came in to fix it and he just couldn't be bothered so as she was trying to fix the probe on his foot he just kept kicking.  Luckily Dad grabbed the camera and got the end part of it on film.  Dad said it was so funny. 

March 4, 2008 - Today has been quite a day.  Mom ran over to help Dad change the ostomy bag as it was coming off but instead while Dad was on a conference call in the lobby Mom was told they were taking Ryan down for a Barium (sp?) enema study to make sure that his colon and everything looked ok for surgery.  So Mom took Ryan down and the nurse that went down with us (who also works in the PICU) said she saw Ryan is on the surgery schedule for tomorrow.  Excuse me????  We go through the test, which Ryan is not happy about having something shoved up his rectum, and the radiologist says everything looks good.  Whew.  We get Ryan back up to his room and asked the nurse to find out if Ryan is on the surgery schedule for tomorrow or Thursday.  Tomorrow at 11.  Sure would be nice if we knew this.  So we change his bag and are thinking happy day we don't have to do this anymore and then physical therapy arrived and Mom & her worked with Ryan and discuss things we can try to help him with his eating.  Mom's theory is tricking him to eat through his binky is working but shouldn't we by trying it through a bottle nipple so he can re-associate the bottle with food and not the binky.  The physical therapist tried it and he did pretty good with it.  Mom also wanted to try him with a bottle of Pedialyte because he had done wonderful with it like he had no issues eating.  So we tested that theory and he did do much better.  Ok is it still a taste thing - could be but we don't know so we'll keep working on this.  Later Mom got a call at work that the surgeon would be coming to talk to Mom at 4 so she got back over to the hospital in time.  The nurse told her she had just talked to the surgeon and surgery is not tomorrow or Thursday but Tuesday.  UGH!!!!  Are you kidding me????  The surgeon arrived and apologized for the problems with the dates.  Apparently she always thought the surgery was tomorrow and doesn't know how we heard otherwise.  But apparently the neurosurgeon misunderstood the timing needed for the shunt surgery.  After the ostomy take down surgery, in about 4-7 days we'll know if he is having any issues.  As long as all goes well at 7-10 days is the optimal time for the shunt surgery because at 14 days up to 2 months is when the adhesions develop and that is what we are trying to avoid.  She does not recommend doing the shunt surgery at 14 days.  If surgery is tomorrow or Thursday then the neurosurgeon will be out of town at the timing for the shunt surgery so it was best for her to change the date.  Plus her partners are out of town so if there was an emergency surgery needed there could be an issue.  In the end it works out - we just thought this had all been figured out a month ago.  The surgeon will also take a look at the hydroceal that Ryan has (similar to an inguinal hernia) and see if that is something that can be fixed or if we need to see a pediatric urologist (which there is not one in state so we will have to travel for that).  We had also wanted his circumcision done but apparently there is some skin that is not tacked down as it should be so it is recommended that when Ryan is about 1 we go see the pediatric urologist for this as well.  UGH!  It may be some time after surgery that Ryan will get to try eating again.  They will put a tube down his nose (a little bigger than his feeding tube) to suck out the stomach acids.  The acids will start out green bile and as they go to yellow and more clear then he will be able to start eating again.  Of course when he is also ready too - we don't want to push him.  But the surgeon warned me it could take us up to 2 months to get him off of IV nutrition.  This could mean we won't be home until May/June time frame.  More UGH!!!  Tomorrow should be a head ultrasound and they are also going to do a swallow study to see if there is anything else going on with Ryan that could be causing him issues eating.  He didn't sleep well last night and was fussy again throughout the day.  Dad talked to the pediatrician about it this morning and at this point we don't know what it is - just a fussy day, left over from the RSV shot, he has a belly ache, he has a head ache, he has a tooth coming in, he's getting sick or who knows.  It definitely seems to be something related to pain as he will be happy and smiling one minute and screaming the next.  We sure hope tomorrow is not such a circus of a day.

March 5, 2008 - Today was not a circus like yesterday.  Ryan slept all night long and was in a much better mood today than he has been.  We took him down for the swallow study at noon.  They put him in some sort of booster chair up against the x-ray machine (which Aunt Lindsey got to run for us).  Then Mom fed him some Pedialyte and he did wonderful - much better than he has done before.  We kept saying it was because there was an audience.  Then Mom fed him some formula and he did good but started losing it so we finished up.  The speech therapist said he looks pretty good - no issues really found.  Ryan just has a weak swallow and a strong suck so we just need to work on those swallow muscles by eating often.  They are also recommending putting in a feeding tube during surgery on Tuesday.  This would come out around his belly button and go directly to his stomach so we would lose the one in his nose.  The benefit to doing this would be we lose the negative stimulus of something being shoved down his nose and sitting on his soft pallet.  The down side is we don't want him to have it knowing what a good eater he had been.  We will be discussing with the doctors to make a decision.  It would only be a temporary item but it would have to be done on Tuesdays surgery or it won't go in with everything else we have going on.  We will see.  We decided with the physical therapist we needed to start feeding more upright so they grabbed a high chair.  When we moved out of the PICU this last time we were put in a much smaller room that we had before in the oncology ward so we weren't sure where we could fit the high chair in his room along with the wagon and chairs and his equipment so Mom said it sure would be nice if we were still in that other room which was much bigger to house all his stuff.  They said we can move rooms so we moved next door to the bigger room.  The physical therapist brought in the high chair and we got Ryan in it and started working with him.  He did ok and enjoyed sitting in the more upright chair we think.  Mom tried feeding him this evening and it did not go so well.  He wasn't happy when we moved him to the high chair so it took a bit to settle him down and then he took the bottle well until he lost the rhythm he was in and then it was a struggle so we stopped.  Ryan had a head ultrasound today after the swallow study.  The neurosurgeon came by this evening and said Ryan is starting to accumulate fluid but not very rapidly.  He believes the shunts are probably clogged but he is pleased with where we are at and how much time we have left for the next shunt surgery.  On Sunday or Monday he will tap both sides.  This will relieve any pressure building and will allow us to test his spinal fluid to make sure no infection as he will be off antibiotics after tomorrow.  Then he should be ok until his shunt surgery on the 20th.  Oh the fun never stops.  We know we ask often for prayers but we sure could use some for his eating and the next couple surgeries.   

March 9, 2008 - Ryan weighed in at 15 lbs. 2 1/2 oz. today!  Holy cow he's a fat boy!  He gained 18 oz. in 7 days - my goodness!  Those cheeks have exploded in the last week.  :-)  He has been pretty happy for the most part with a fussy time from about 6-7 p.m. most days this week, which we think is caused by gas, so we've started giving him Mylacon which seems to help.  Ryan has been doing well absorbing his food so we are up to full strength formula and 19 ml per hour tonight.  We have not been doing so well giving him food orally.  He'll do great for Mom about once a day but today just acted uninterested.  Grandma Connie came down for a visit this weekend.  Ryan is much larger than the last time she same him the beginning of December.  Our move to the new room a couple days ago about gave our pediatrician a heart attack - we forgot to pass word to her that we moved.  When she came in and didn't seem him in his room, she thought something bad had happened and hadn't been notified but was very happy to hear he just moved rooms.  She paid Ryan a nice compliment on Friday.  She told Dad that of out of all her 24 week old preemies, Ryan is the best in terms of weight gain (as we always say thanks to good genes from Mom & Dad) and developmentally.  You do not know how pleased this makes Mom & Dad.  We think developmentally he has done wonderful and doesn't seem to be too far behind for his adjusted age of 4 months (tomorrow).  Ryan was very cranky yesterday and we think that was because we tried to get the house cleaned and some errands ran before we headed to the hospital so we didn't make it until the afternoon and he was making sure we knew he was not happy about it.  Oh he let us have it the rest of the day.  Such a cranky boy but today we got down there early and he was happy all day.  We took him on a wagon ride with his new ducky that Grandma Connie got him for Easter and he had so much fun.  We went to the PICU and visited all his girlfriends there.  He was smiling and talking.  Then we went around our circle and he continued talking and beating on his duck as you'll see in the video.  Mom hopes she didn't make anyone motion sick.  It has been decided that he will get the feeding tube in his belly.  It won't be permanent and it should help us remove the negative stimulus around his face.  He hates that tube down his nose so much.  He just picks at the tape trying to get it off or tries hard to grab it and get his fingers under it by his nose so he can pull it.  He is fast too so you have to stay on top of it.  He was being a little turkey about it tonight.  The neurosurgeon didn't make it in today so we should be seeing him tomorrow.   

March 10, 2008 - Ryan has had a good day.   Dad said when the pediatrician came in to see Ryan this morning, Ryan went from being quiet to chatty & smiling at her (what a flirt).  He was chatty and happy for basically the rest of the day.  The neurosurgeon came by and tapped 20 ml from each side of Ryan's head.  The spinal fluid has been sent down for testing and we haven't heard if the gram stain has come back yet.  Let's keep our fingers crossed it all looks ok.  When Mom & Dad were at the hospital around lunch time they both noticed that Ryan's stoma seemed a little swollen and thought it was odd.  When Mom came back this evening and checked it, it was even more swollen.  She called the nurse in who agreed it was worse so she paged the general surgeon.  The surgeon came by with in the hour and agreed it was swollen but at this point didn't think it was anything to worry about and is glad that take down is tomorrow.  If it gets worse emergency surgery could be required.  Let's hope he holds on a little longer!  The surgeon expects Ryan to go down to surgery about 12-12:30 and again it could take anywhere from 2 to 5+ hours.  The surgically implanted feeding tube is now a no go.  Apparently the surgeon and neurosurgeon talked and decided it could cause more problems than it is worth.  Plus the surgeon said because Ryan has eaten orally previously and he passed the swallow study she medically doesn't have a reason to put one in.  That is fine by Mom & Dad - we didn't want one.  Mom also talked to her about Ryan's gas.  The surgeon said that the stoma can cause a blockage which can cause cramping with gas.  We think this explains his fussiness and we'll be interested to see if this gets better after surgery.  He got a visit from Aunt Lindsey, Great Aunt Debbie and Great Uncle Mike this evening.  Debbie & Mike haven't seen Ryan since he was maybe a month old - some 12 lbs. ago.  He was quite different from then!  Ryan has been on Pedialyte since 3 p.m.  He has to be on clear liquid from then until 2 hours before surgery.  Oh he is going to be one cranky boy tomorrow!  We are not looking forward to that.  He was smacking his lips and acting hungry most of the evening but didn't get fussy over it (thank goodness).  He definitely did not want to go to sleep.  He must know something is up.  He'd fall asleep, wake up, fall asleep and wake up.  Finally Mom got him content in his bouncy seat about 10 p.m. and headed home.  Tomorrow is a day we've been waiting for since Dec. 17th.  It is hard to believe we're finally at this point.  We ask for prayers for tomorrow's surgery to be a success and for Ryan to begin healing quickly with no infections or issues.

March 11, 2008 - The little turkey decided he didn't want to sleep last night after all.  He fell asleep about 15 minutes after Mom left last night and slept for 4 hours and was awake the rest of the night.  We got down to the hospital at 7:30 and he was awake and happy.  Mom cuddled up with him and got him to sleep for 2 hours before surgery.  Then we gave him a breathing treatment and took him down to pre-op at about noon.  They wheeled him into the OR a little after 1 and as they were wheeling him away he about rolled over (he's been getting close but this was the closest).  We went and got lunch in the cafeteria and then waited in Ryan's room.  By the time we got back up to his room surgery had already called up and said the surgeon was going to fix the hydroceal.  About 3 p.m. surgery called and said the surgeon had just finished cleaning up Ryan's scar tissue and that it was mild and she was not going to put him back together.  At 5:30 we got a call that she had just closed and he would be up in about 20 minutes.  That usually means 30-60 minutes from prior experience so after 30 minutes we decided to go wait in the PICU.  We weren't there maybe 10 minutes when the RT said she just got a call saying they were going to pull the breathing tube and monitor Ryan for a bit before sending him up.  We had asked to have the breathing tube left in because of prior apnea issues but they did not listen to us - we hope it doesn't bit us later.  About 10 minutes after that one of the nurses from the oncology ward said the surgeon was over by his other room waiting to talk to us.  So we went over there and she said he would not be going to PICU and wasn't sure why anyone had thought that.  She said she is pleased with the surgery.  She said the hydroceal went great but there is one area we'll have to watch out for later on.  She thought his intestines looked great and everywhere else - skin layers, fat layers and muscle.  She was pleased with how much scarring he had and believes when we reshunt him next week it has a good chance of working.  Ryan will be pretty sore for the next few days and we'll have to watch his urine output and belly.  He'll be on drugs for pain for the next few days but hopefully won't need it for too long.  Ryan finally made it up to his room a little after 8 p.m.  He is definitely in pain and definitely wanted someone to hold his hand.  He sounds like a duck from having the tube removed but he looks great.  His belly looks beautiful - man it is so nice to not have that stoma!!  Mom will be staying at the hospital tonight since he is not in the PICU.  In the PICU the nurses only have 1 or 2 kids each so he would get more attention, which he needs tonight.  On the oncology side they have more than two kids so we want to make sure someone is there in case anything should happen plus he is at the age where he wants us around for comfort.  It has been a long and stressful day worrying about how this would go.  Now we wait to see if any issues develop here over the next 5 days.  Please say a prayer for no issues!!!

March 12, 2008 - Ryan had a rough night, which meant so did Mom.  He did ok until about 1 a.m. and then he was upset and in a lot of pain.  The nurse gave him what was prescribed but it was not enough.  We tried everything to calm him down and in the end Mom holding him was the best solution.  It helped some but not enough so about 4 a.m. we paged the on call surgeon.  He changed one medication to every hour instead of every 6 but we didn't see much improvement.  After 2 doses this way the pharmacy was questioning why Ryan was getting this med like this and said another narcotic would have to be prescribed as this drug could not be kept this way so we told them to call the on call surgeon.  The on call surgeon called back around 7 a.m. and said put the med back to every 6 hours and change the morphine to every hour.  Ryan has built up a tolerance to morphine so we had not been seeing it helping him at all over night.  Mom had wanted them to also give him a sedative to help get him comfortable as well but the on call surgeon would not do it.  Poor Ryan was in severe pain and was so upset - his resting heart rate was what his normal awake heart rate was and his awake heart rate was pretty high so Mom knew he was in a lot of pain.  Mom was racking her brain on what to do.  She was hoping the pediatrician would be in soon and hoping the surgeon that did the surgery would be in so we could get things changed up.  Mom woke Dad around 7 and asked him to come down.  When Dad arrived he got to see Ryan in action and was a bit upset to hear this is what Ryan has been like most of the night.  The pediatrician and the surgeon arrived around 9 a.m. and they were on board that something had to change.  Apparently there was a range in the amount of morphine that Ryan could be given overnight and he was given the lower end of that range.  Mom should have questioned the amount but thought were giving him the most prescribed.  This amount has now been increased.  We are now playing catch up on trying to keep Ryan comfortable and getting him to sleep.  His heart rate has been coming down to a more normal range and he was getting bits and pieces of sleep.  As the hour from the last dose of morphine winds down he definitely starts getting upset so our goal today is to keep the morphine coming every hour and keep him comfortable.  One of us will be staying the night again tonight.  Hopefully tomorrow Ryan will be doing better.  Other than that he is a little puffy from the fluids he is given but is peeing like a race horse so the surgeon is pleased with that.  She is also pleased with how his belly looks and feels.  Let's hope tonight is a better night...

March 13, 2008 - Ryan had a much better night and much better day.  They have been able to spread the morphine out to every 1 1/2 to 2 hours instead of every hour.  This evening with Mom he had a nice quiet awake time and he was in a good mood before she left - he was kicking at his boppy (that was at his feet), smiling and acting like he was going to talk.  The surgeon is pleased with his belly still but would like him to start farting - that will be the biggest sign of everything working.  The nurse was holding him earlier today and she thought he was having smelly farts as she thought it smelled like his ostomy but she wasn't sure.  Mom also thought this evening he might be farting but wasn't sure.  He had a huge wet diaper this evening, which is a good sign after having the Foley catheter taken out this afternoon.  We're hoping the feeding tube that is down his nose to suck out the stomach acid will be removed tomorrow.  They started his IV nutrition back up late this afternoon as well.  We're slowly making some progress.  We're hoping to wean him off the morphine in a couple days and have him about back to normal about then as well (just in time to go back to surgery on Thursday).  Hopefully it will be a quiet weekend.

March 14, 2008 - Ryan had a pretty good day.  He had some good happy periods and some not so happy periods.  He also slept a few hours for Dad today, which he needed.  They have been slowly extending the time between morphine doses.  This evening we were up to 2 1/2 hours.  We haven't heard any toots out of him but Mom & Dad each thought they felt a vibration while holding but who knows.  The tube down into his belly did not get pulled today as he was putting out some greener stuff so we'll watch it and see if it gets better tomorrow.  Other than that he just keeps trying to get his nasal cannula out of his nose so we've started putting socks on his hands to make it harder for him.  Granted when we do that he still rubs at it and still gets it out - stinker.  Not sure if he is irritated by it because being on 1/4 of a liter instead of 1/32 (a little more pressure into his nose) or a reaction from morphine. 

March 15, 2008 - Ryan has had a really good day.  When Mom arrived this morning he was happy and talking - it was so nice to see.  They had been able to extend his morphine to once every 4-5 hours.  He was kicking so Mom put in him his Boppy so he could play with his kicking toy which he did over an hour before Mom left to go get Dad.  The surgeon came in and is pleased with what she sees although she did not remove the tube from his stomach yet as it was still green but was happy that the amount of output had decreased by half.  Hopefully the stitches will come out tomorrow and possibly the tube.  When Mom & Dad arrived back at the hospital Ryan was asleep and looking pretty cute in jeans and a onesie.  When he woke up Dad grabbed him and they played and Ryan was talking, kicking, laughing, smiling.  It was very cute.  Every now and then Ryan kept acting like he was straining (pushing out a poo - although no poopy diapers - or toots) or he would act like he was hurting from gas.  We think he is moving stuff out and the nurse said his belly is rumbling so she believes it.  It was a great day with him but he started getting tired so we got him changed into PJs and finally got him to sleep.  When we left it had almost been 6 hours since the last morphine so we're pleased about that.  Hopefully tomorrow is as great as today!

March 16, 2008 - Ryan had poopy diapers today!  Mom & Dad can't tell you how excited we are for this!  We can tell you how pissed off Ryan is about this.  He hasn't used those parts in 3 months so it was something new.  He was fussy at times and finally it started being because he was working out a poopy!  The first one was thick and pasty so the surgeon was worried he was plugged up so she wanted the nurse to start giving enemas as we need to get the thick stuff out as the surgeon wants to see runny poop.  Within 20 minutes of her leaving - she got her wish without the aid of an enema.  Mom & Dad got him changed and settled.  After about 15 minutes he pooped again so we had to change him.  Unfortunately as we were changing him he was either still going or it was so runny it ran down his backside onto the new diaper and his clothes.  UGH!  So we changed his diaper and clothes and then got him settled again.  Within 20 minutes he pooped again!  This one was not a lot.  Aunt Lindsey had come to visit so she held him after this poopy and then he peed out the side of the diaper and leaked through his clothes.  What a circus!  We changed his diaper and clothes again and left him on this bed in case he did something again.  Finally he had enough of staying in his crib so Mom tried to get him to sleep, which she did but only for about 30 minutes and then we could not get him back to sleep.  We left at 9 p.m. and he was awake and playing with his kicking toy (after trying for 1 1/2 hours to get him to sleep).  At 10:30 we checked on him and he had just fallen asleep in the last 15 minutes.  What a stinker!  The surgeon did take his stitches out and he is to get the tube out of his nose (that is suctioning his stomach acid) over night.  Over last night they were able to do morphine every 6 1/2 to 8 hours and today he lasted 12 1/2 hours before he got some.  We are excited that he has made good progress today.  Hopefully we will get him totally off of morphine in the next day or two.

March 17, 2008 - Happy St. Patties Day!  Ryan was dressed festive today and looked pretty darn cute.  He'll probably kill us for this later in life but he is too cute to not put in these outfits while Mom can.  He was the hit of the floor and got many compliments on his hat.  Luckily for him, Mom only has a bib for Easter for him to wear.  Mom was hoping he'd last all day in it but with his runny poop - of course he wouldn't.  He pooped all over it and threw up all over it by 3 p.m.  Darn!  Apparently pulling the tube out of his belly last night wasn't a good idea.  He just wasn't ready yet so when the surgeon came by this afternoon and got to see him throw up for herself, she said the tube needed to go back in to help relieve the pressure and to not ruin what she'd fixed.  The throw up is basically caused by acid reflux.  We'll have to watch if he continues to throw up as he is throwing up stomach acid that burns the esophagus raw so we need that healed before we can even think of feeding again or we'll be right back where we were in January.  We'll see how he does and the tube may come out tomorrow or the next day or whenever.  Other than that the surgeon was pleased with his pooping, as is his pediatrician.  He has been pooping and farting a lot today.  It has gone from the green bile looking poop to yellow, which is the direction it needs to go.  He hasn't slept much today but Mom got him to sleep before she left and she is keeping her fingers crossed he'll sleep all night.  Mom found out that the shunt surgery is Thursday at 9 a.m.  Please say a prayer many times this week for it to be a success with no infections.  This is the one Mom & Dad are really nervous about - that it will work and that we won't have a repeat of infections that started this whole mess in December.

March 19, 2008 - Well tomorrow is the big day.  Mom & Dad are a bit nervous but hopeful that the shunts will work.  The surgeon thought the lining of Ryan's abdominal wall looked good last week during the ostomy take down surgery and thinks Ryan's body should absorb the spinal fluid.  Ryan is still pooping but it has gone from the yellow/brown color to green again.  The surgeon says she isn't worried - she just wants farts and poop to come out and doesn't care about the color.  The stuff coming out of Ryan's tummy is a brown color - old blood which the surgeon said is pretty normal.  Didn't seem too normal to Mom.  Yesterday Aunt Diane got to see Ryan as she was in town on a business trip.  Ryan had been pretty happy while she was there and then was getting a little unhappy so Mom picked him up and put him on her shoulder.  Within a couple minutes he started acting like he was choking and gagging.  Mom put him down in his bed but kept him upright and he kept doing it.  Mom had flashbacks to Dec. 14th when we thought he was choking and then he stopped breathing.  We got the nurse in there and she said he was trying to throw up.  He did it a few more times.  The nurse sucked the air out of his tube, which there was a bit but she also got some fresh blood that worried Mom.  The nurse called the surgeon who figures the blood is from irritation of the tube being in and the choking/throw up has to do with not having much in his stomach or something to that affect.  So it seems that there is a double edge sword on having the tube in Ryan's belly.  You keep it in and it can cause this to happen but if you take it out too early you can get pressure build up which could cause rupture of the sutures and cause him throw up as well.  Ryan has not had any more of these throw up incidents that Mom or Dad are aware of.  The surgeon wants Mom & Dad to keep a fart log of when Ryan passes gas.  The nurses are also to note it in his chart when they hear him pass gas.  It is kind of comical to have a sheet of paper in his room called Ryan's Fart Log.  We'll have to keep that to show him one day.  Won't he love it when we pull it out and show it to a girlfriend?

Ryan got a visit today from Great Grandma Betty & Great Grandpa Don.  Mom got to the hospital this afternoon just in time to take Ryan down for his abbreviated MRI.  Before we headed down the surgeon came by to check on Ryan and ask if we had any questions about tomorrow's surgery.  She said she spoke with the neurosurgeon for awhile today and they have a plan of attack.  The incisions will go off to the side just below Ryan's ribs to get the tubing as far from the bowel as possible but above the current incision from the ostomy surgery.  There is no concerns still on what Ryan has been putting out - as long as he continues to poop and fart.  But while his daily x-rays have been looking good, she does believe he has a bowel obstruction.  She thinks higher up and that there might be a kink in the bowel that is causing Ryan the issues he has had over the last couple days.  This type of obstruction is common and will resolve on its own.  Ryan pooping and farting is a good sign that it is not a complete obstruction.  If he was not doing either one of those then she would have cause for concern and might have to go in and check him.  She is going to leave the tube in his belly until we get through with surgery tomorrow just to be safe.  She is going to test his stool to make sure we have no infections as well.  About an hour after the MRI, Mom met with the neurosurgeon.  He said the MRI looks like the last MRI we had before the subgaleal shunts were put in.  It looks nasty on the right side and Ryan is pretty full of fluid.  You can feel this when you touch his head.  Luckily his head being full means the neurosurgeon can see if any new spots show up, which he did not see any.  He is encouraged by what the other surgeon said about how Ryan's abdomen looked but as all the surgeons & doctors now know - Ryan goes to his own beat and we will have to wait and see what he does.  Ryan has been very unique and complicated and while we think things should go one way he likes them to go another way.  He definitely is making everyone earn their money!  Since Ryan's head is pretty full there will be a bit of a fluid shift after surgery so we've asked the neurosurgeon to put him in the PICU at least over night.  We don't want apnea spells from the shift so we'd rather be safe than sorry and he agreed.  Plus Ryan's PICU girls didn't get to see him last week like we told them they would so we need to get him back over there so he can see them.  So as always, please say some prayers for our little guy to have the shunts work, have no infections, clear this bowel obstruction so everything works ok so we can start feeds, have no new complications or issues, and get healed up so we can go home!  (We know that is a pretty big prayer but we need all the help we can get!)

March 20, 2008 - Mom & Dad got to the hospital just in time this morning as they were just getting ready to take Ryan down to pre-op.  Ryan was a happy boy when we got there and did well in pre-op.  He started to get fussy but was just tired and fell asleep.  Last night the surgeon decided to run some tests on Ryan's stool for C Diff and Rotavirus.  Both are very contagious so while we are in pre-op, we changed Ryan's diaper and Dad is basically accosted by the pre-op nurse about we have to be in isolation because of the tests (so you have to gown up), we can't throw the diaper away, blah, blah, blah.  He has been tested for this before and never been in isolation for it.  Before they took Ryan into surgery the test came back on C Diff that it was negative but it still sent pre-op and the OR into a tizzy.  His nurse up in pediatrics said the OR was pretty unhappy about it.  If he had come back positive for it - it could have been a huge deal because he really could have contaminated the OR and that would have been bad bad bad.  Luckily Ryan doesn't have it.  We met with the neurosurgeon and surgeon and decided Ryan would get extabated if he was doing well otherwise they would leave the breathing tube in and either way we agreed on Ryan going to the PICU over night.  They wheeled him off to the OR about 9:30.  They called us at 11 and said one side was done and it went well.  After 1 p.m. the surgeon called and said everything went well and she was pleased with the amount of adhesions Ryan had so far in his belly.  She said the neurosurgeon would be up with Ryan later.  While we waited we got the results of the Rotavirus test and they were negative as well.  We should not need any more isolation.  About 2:30 we met with the neurosurgeon who said it went great.  The catheter piece of the subgaleals were still working and so he used those and then they tunneled down his skin into the right place in Ryan's abdomen.  Left side was a piece of cake and the right side was a little more challenging with the Broviac and then when the surgeon made the incision some bowel had adhered to the abdomen wall so she had to separate them.  The neurosurgeon is hopeful that this time he did get the cyst like space on the right side that he just missed last time but we'll have to wait and see how Ryan drains over the next few days.  We'll do another abbreviated MRI on Monday to see how things look.  Ryan finally got up to the PICU about 30 minutes later.  The team that brought him up was all gowned up like he was still in isolation and they had isolation stuff outside of Ryan's room.  We asked why as he was C Diff negative.  They were like what?  They were happy now they didn't have to go take showers after handling him but apparently the recovery room was told he was C Diff positive.  UGH!  Anyway, Ryan was a bit fussy and apparently recovery didn't want to give him morphine (they eventually gave him a small amount but it wasn't enough).  They tend to be hesitant on pediatric patients so the PICU nurse and intensivist spent the next few hours getting Ryan's pain management under control.  That is why we are happy that we are in the PICU tonight and glad we asked for Ryan to be sent there.  They will be on top of it, the nurses and intensivist know Ryan pretty well and are able to dedicate more time to him.  By the time we left tonight he was resting and doing well.  We also were able to finally put a couple entries into his fart log.  The surgeon hopefully will be pleased to hear he was moving stuff out after surgery.  We were hoping with how odd pre-op was this morning that surgery would have to be a success and are so happy it was.  We expect Ryan to be sent back to his room in oncology tomorrow sometime as long as everything else goes well the rest of the night and into tomorrow.  Mom & Dad will try to get enough rest tonight as one of us may need to stay tomorrow night.  Now we have to get through recovery over the next couple days, hope we won't have an infection in 7 days and that we'll be able to start working on his feeds by the end of next week.  Could we really be on the homestretch?  We hope so but are not holding our breaths right now.  Ryan likes to throw us curve balls constantly so for now we'll just continue to take it a day at a time.

March 21, 2008 - Ryan's night was not the greatest but it was not as bad as after the last surgery.  After Mom & Dad left last night he got fussy for a few hours but they finally got him to sleep.  When Mom & Dad arrived this morning he seemed comfortable because they had to give him a sedative because he got so worked up.  Dad ran out to the waiting room to make a phone call, Mom was talking with the nurse and Ryan was doing good when all of a sudden Mom noticed Ryan's oxygen numbers tank and then his heart rate started to go.  Luckily the doctor was outside Ryan's room and he said, "Guys what's going on?"  And we were like we don't know.  He rushed in, they called the respiratory tech in and they began to work on him.  Ryan was crashing.  His oxygen got down as low as 5 and his heart rate got down in the 50s.  Not good.  Mom rushed out and got Dad and by the time we got back to his room he was coming back up.  We are not sure if it was caused by his medications or because he was sedated that he had some junk in his throat that he couldn't get rid of so he stopped breathing.  It was a little reminiscent of December when we brought him back in and he wasn't breathing.  We watched him for awhile and didn't give him any more medications for a while.  After that we had no problems.  He just received morphine with a newbane chaser and it seemed to do the trick.  We even got him so he only needed it every 2 to 2 1/2 hours.  Dad held Ryan for a couple hours after the morning fun, we ran to lunch and then Mom held Ryan for 4 hours and he slept really nicely for about 90% of the time.  About 6 we put him back, gave him a bath, put lotion on him, changed his bed and then snuggled him in.  He was happy, kicking, looking in his mirror when we left but he was definitely still tired and we are hopeful that he will have a better night tonight.  The surgeon and neurosurgeon came by hours after he crashed and were pleased with how he looked (not so happy about him crashing).  No concerns at this point out of either of them.  We won't know for 1-3 weeks if Ryan doesn't absorb the fluid in his abdomen so we will have to continue to keep an eye on that as well as any symptoms of infection.  No poopy diapers but the surgeon said he doesn't have much left in him to poop so she is not concerned.  Ryan has had great wet diapers and more farts.  We are not sure if we'll get sent back to our other room tomorrow or if they will keep him one more day.  We just hope tomorrow is not as exciting as this morning and we can begin to wean his drugs more. 

March 23, 2008 - Ryan has been doing really well the last two days.  Yesterday they booted us out of the PICU and put us back in oncology.  We got Ryan to only need drugs every 5-7 hours and last night we had them start just giving Tylenol and that is what he has been on ever since if he needs it.  He was feeling really good yesterday and played with his kicking toy for over an hour before he fell asleep.  Grandma & Grandpa came up to visit him and Grandma got some good cuddle time.  Today Ryan got to start taking formula.  He was getting 10 ml every 4 hours by mouth if he would take it otherwise it goes down his feeding tube.  We tried the bottle first but he immediately threw a fit so we changed to the binky with the hole that the feeding tube fits through where we push the formula in with a syringe.  He took it no problem.  For the next feeding Dad rigged it so it was with a bottle nipple instead of the binky.  At first he was not sure about it but ended up taking 9 ml before he didn't want anymore.  He did really well absorbing the food, had 3 poopy diapers today but had a lot of gas.  The gas killed him.  He was so fussy and uncomfortable that when the surgeon stopped by to check on Ryan we asked if we could give him some Mylacon and he was ok with that.  About 30 minutes later Ryan was doing much better.  Tonight they are going to do 30 ml every 4 hours and before each feed they will check his residuals.  If he has 10 or less then they will go up 5 otherwise they will stay where they are.  They will also give him Mylacon after each feeding so he doesn't have too much gas issues.  Mom & Dad realized today that his issue with feeding does appear to be his weak swallow.  If we regulate it and get him on a steady flow he does well but if he does it he takes such a big suck that he scares himself.  Us and physical therapy will have our work cut out for us!  This is going to be the biggest obstacle.  Otherwise, Ryan's belly is looking good and his x-rays have pleased the surgeon.  The neurosurgeon is pleased and we will do an abbreviated MRI tomorrow.  By touch his head is draining nicely - his fontanel is sunken and feels great and so far his belly doesn't seem to be not absorbing it but we won't know for anywhere from 1 to 3 weeks if this is really true.  We're saying our prayers that the shunts work, his belly absorbs, no infections and he'll get to taking his feeds so we can come home (we've been back almost 4 months).  We hope you'll say some too.

March 24, 2008 - Ryan has been doing well with his feeds and was up to 45 ml every 4 hours when Dad arrived this morning.  They give it to him on the pump over 30 minutes.  By the end Dad said Ryan looked bloated and like he was so full he wanted to throw up.  We think they are going too fast with him.  Dad had the nurse page the surgeon and she agreed that the on call surgeon was too aggressive with Ryan.  She bumped him back down to 30 ml every 4 hours given on the pump over 30 minutes with us working on his oral feedings during the day.  Anything he doesn't take by mouth would be put down the feeding tube.  Physical therapy came to work with Ryan at noon and he wasn't too interested so he only took 7 ml.  We need to get him to a point where he is hungry plus she agreed that we should not be using the bottle at this time but use the nipple/feeding tube/syringe system we have and we'll work with him on that for a while.  Mom met with the surgeon this evening and she is going to change it a little bit to do a continuous feed overnight of 12 ml per hour.  She is hopeful that this will help reduce his gas and not get him so full so fast.  If we go too fast it can cause bleeding and a big setback.  She figures 3 weeks before we'll get to full feeds if we have no other issues.  That is what Mom & Dad figured.  Ryan had an MRI today and Mom met with the neurosurgeon this evening.  The right side is draining nicely but the left side isn't.  UGH!!  Ryan will have an ultrasound at the end of this week and we'll see if the draining has picked up.  If not the neurosurgeon will try flushing the shunts and hope to break loose anything clogging it.  If that doesn't work then we may have to have another shunt revision surgery.  We're saying our prayers that the flush will work.  Ryan was happy most of the day and Dad said he even had Ryan giggling.  Ryan hasn't quite got down the breathing while you laugh but Dad said it was very cute.  Ryan was fussy with Mom this evening - discomfort from gas and pooping even though he is getting his Mylacon.  Mom got Ryan to sleep so she put him back in bed just to have him wake up and want to play.  It took Mom 2 more hours to get him to go to sleep for the night.

March 26, 2008 - Ryan turned 8 months old yesterday.  Can you believe we have been going through all this that long?  Ryan has been doing well.  They continue to advance his feeds via feeding tube and this afternoon the surgeon advanced his oral feeds to 40 ml even though by mouth we've only got him to take 10 to 15 (the rest is fed via feeding tube).  Yesterday the surgeon said for oral feeds we could use the formula that Ryan used to like and take to see if that would help him remember that he liked to eat.  Last night for Mom at first he was hesitant but then it was like a light switch went on and he was acting hungry and wanting it.  Granted he only took 10 ml but that was a good start.  This morning for Dad he didn't seem interested but late morning with the physical therapist he took 14 ml.  We will continue to work with him and we're also to bring food in so he can smell the aromas and see us eating.  If he were home it would be a normal thing that would help him get hungry but in the hospital there aren't many aromas.  The main problem he is having right now is diaper rash.  The poop he is putting out is so acidic that it has his little bottom red and nasty.  They are caking on the butt paste, careful how they are wiping him down, and checking his diapers often so he doesn't sit in it too long.  It has been quite a deal today.  It seems his gas has not been bothering him today so now that Mylacon is regularly given maybe we're on the right path there.  Tomorrow Ryan will have another abbreviated MRI to see how his left side looks and then we'll find out if the neurosurgeon will need to flush the shunt or not. 

March 27, 2008 - Today's MRI showed a slight decrease in fluid on the left side since the last MRI.  Since Ryan's head feels good, he is acting good, and there was a small decrease in fluid on the left side, the neurosurgeon wants to wait on flushing & tapping the shunt.  We'll check how things are next week.  Ryan's bottom looks slightly better today than yesterday but it still looks nasty.  The surgeon has asked us to stop oral feeds for a couple days and let her just do continuous feeds instead.  She says by looking at his rear end Ryan is dumping sugars and fats so putting him on these continuous feeds might help his body rebound and start absorbing.  Ryan has still been pooping and farting pretty good and been rather happy.  This evening with Mom he was acting like he was starving and the binky was not cutting it even though he was on the continuous feed.  Mom almost got 1 ml of formula to give him by mouth but he settled down and fell asleep.  It was nice to see him hungry.  He weighed in at 15 lbs. 8 oz. today.  We're hoping for a quiet weekend.

March 28, 2008 - Ryan has had a pretty good day.  The surgeon was pleased with how Ryan has been absorbing his food since we went to 24 hour continuous feeds.  The physical therapist brought us in a gym mat so we could start playing with Ryan on the floor.  Since we've been back in the hospital we have not been able to.  We tried it out this afternoon and he wasn't wanting any of it.  We think he just wanted snuggle time because he played all morning with Dad and didn't get much.  Grandma & Grandpa came up and gave Ryan lots of snuggle time and loves. 

March 31, 2008 - Ryan had a good day Saturday.  We took him for a wagon ride and took him to see his PICU girls.  They said if we had any errands to run they would take him for a while.  So we left him with them and ran a couple errands.  When we came back he was getting his diaper changed as he had a good poopy diaper.  They said he was happy and flirting the whole time.  They took some cute pictures of him.  We got him back to his room and Mom picked him up and rocked him and within 5 minutes he was sleep.  He slept for quite a while and then woke up when Mom yawned so he was a little fussy.  Grandma & Grandpa showed up and Grandma grabbed him and within 30 minutes he was sleep.  After her holding him for an hour and him sleeping, she put him back in bed and we left for the evening.  He slept the rest of the night until 5:30. 

Then they said he woke up screaming and inconsolable.  We called to check in at 8 and they told us this.  They said they paged the on call surgeon and she told them to give Ryan a sedative.  If he is screaming in pain why would you give him a sedative?  Why didn't she try to find out what was going on?  Mom and Dad a little bothered by this got ready and hurried to the hospital.  Ryan was asleep when we got there but within minutes woke up screaming in pain.  We got the nurse and asked when Ryan last had a poopy diaper.  If he hadn't had one since the afternoon of the previous day maybe he was constipated because he was acting like he was in pain in his belly.  We asked why didn't they check this as a reason for his pain, which we got no answer for.  He was even a pain about finding out when the last poop was.  He told us it was the previous day so we said then Ryan has gone 19 hours without a poop and he needs an enema.  He gave us well kids only have to poop once a day and he can't give one without an order.  We were like he just had take down surgery and is to poop 5 times a day so call the surgeon and get an order for an enema and tell her to get down here to check him and page the neurosurgeon to make him aware. He started to say he couldn't call both, that the surgeon would have to call the neurosurgeon and blah, blah, blah.  That set Mom & Dad off.  We were so frustrated with him.  We said call them.  By then we took Ryan's temp and he was running a fever.  The nurse got a hold of the on call surgeon and she was like find out who his primary is, it is not her.  Oh yes it is.  Mom & Dad were very frustrated with the on call surgeon and the nurse.  The nurse called the Patient Care Coordinator to come deal with us since he knew we weren't pleased. 

When the PCC arrived he was like what is being done.  Dad said nothing.  The PCC said that is not good.  He paged the pediatrician and she arrived within minutes as she was already on her way.  She said the surgeon doesn't want her to write orders on him because the surgeon is primary while recovering from the take down surgery but in this case she will.  They got a hold of the neurosurgeon who was out of town and would not be back in until late evening.  He said either him or another neurosurgeon would come tap Ryan so they can test his CSF for infection.  They took blood cultures to check for infection and did a few other tests as well.  They had x-ray come up and check his belly to make sure there was not a bowel obstruction (luckily there was not).  His temp was climbing - up to 101.4.  We gave him Tylenol and an enema.  Thank goodness for the pediatrician.  Within 30 minutes Ryan pooped his pants and settled down a little bit but was still screaming out in pain.  His heart rate was elevated so we knew he was in pain.  The other neurosurgeon came by after 4 and did the tap.  About 5 we got Ryan to sleep on his belly.  He slept for 3 hours.  We kept giving him Tylenol which may have helped make him a little more comfortable but it never helped his fever and he still would cry out in pain occasionally.  Mom & Dad stayed the night at he hospital - we couldn't leave him feeling this bad and if any of the tests came back positive for infection Ryan would have to have emergency surgery to remove his shunts.  If it came back positive in the blood he would probably have to have emergency surgery to remove his Broviac.  And where Ryan would get so inconsolable we just needed to stay and help him feel better.   

He was up from 8 to 10:30 p.m. and then we got him to sleep some what.  He would sleep 10-15 minutes and wake up screaming.  This continued until about 2 a.m.  Then we got him to sleep on his belly for an hour without waking up.  Then at 3 he woke up screaming and we got him settled down again and he slept for a couple hours.  And then a couple more hours.  He got a lot of good sleep on his belly.  At 7 a.m. he was awake so Mom grabbed him and within 10 minutes he had a big poopy blowout.  We're still wondering if a lot of it has been constipation as he poops have been thicker (more like normal poop) and we wonder if he was just built up.  Still doesn't explain the fever though.  After that Ryan was acting like he was feeling better.  He was smiling, kicking, talking for about 5 hours before we finally got him to sleep.  But in all this time - he was still running a fever.  The gram stains on the CSF have all come back negative but he has elevated white cell counts and one type of these white cell is concerning to the neurosurgeon.  So we continue to wait...The blood cultures so far have come back with nothing growing in them...so we wait some more...   

We will write more later...

We met with the surgeon that did the ostomy take down and she is pleased with how his butt is looking (it has been healing up nicely since we went to the 24 hour continuous drip) and how his poops have been.  She has upped his feeds again and says we're 50-60% of where we need to be.  He weighed in at 16 lbs 1.7 oz this morning so he definitely is absorbing his food!  From her standpoint his belly looks good and she is pleased.  The tenderness could be many things and we will have to wait to see if one of those is an infection in the spinal fluid.  We met with the neurosurgeon late this evening and while no cultures or gram stains have come back positive the white cells are high.  Because of all the surgeries and trauma that Ryan has had the neurosurgeon isn't too concerned with that.  What does concern him is there is a presence of acute white cells which tends to mean there is a new infection.  Plus one of the tests that the pediatrician ran shows an elevated protein level of a type that usually means an infection or virus.  Until the cultures come back with something we won't know if this is really an infection or if it could just be some virus.  If something does come back positive for infection, the shunts will be removed on Wednesday and external drains will be put back in for days to a week.  At that time nothing will be in his head and we will have to wait 3-4 weeks before we can even think of the shunts going back in - possibly longer.  What is odd for us is usually by 24 hours the cultures come back with infection and after a dose or two of antibiotics Ryan's fever breaks.  He is still running a low grade fever that doesn't seem to concern anyone since it is less than 101 now.  Mom & Dad continue to be a bit worried and hate all this waiting.  Of course we are used to it in the 8 months that we have been having to wait but we still hate it.  We ask for continued prayers that this is not another infection and just some virus/bug that he will get past in another day.