Ryan's June '08 Blog
June 1, 2008 - Ryan weighed in on Thursday at 20 lbs 6 oz. He is still growing but slowed down a little bit this week. We met with the endocrinologist who said we're going to keep Ryan on the thyroid medicine. While it is good that his level have been good without needing a higher dose, we need to keep him on it for growth and brain development. When he is 5 or 6 we'll take him off of it for a couple months and test his levels and hope to have him off of it by age 8 but until then it isn't going to hurt him to have the boost - it could hurt him without it. With the brain damage we know he has - we need all the help we can get in that area! This weeks OT appointment was late in the afternoon when Mom was home to work with Ryan. Of course it did not go well. He was such a stinker taking the bottle. Dad had given him one earlier in the day and he took 35 ml. For Mom - nothing. I think OT was a little worried (where she had been happy to hear we were getting him to take in the 40-50 mls the prior week) but in the end she said just keep working with him. Thursday night - he took 60 mls for Mom. He has taken in the 30s since then until this morning when he took 57. Late tonight we'll increase his rate per hour to get it so he gets 12 hours off during the day. We will be doing 3 hours on, 3 hours off and work with the bottle as much as we can. PT came on Thursday and he had a good workout with her. She gave us new exercises on the exercise ball. He seems to like them. This weekend he got to see a lot of Grandma & Grandpa, which he enjoyed. He was quite the talker at the dinner table. Saturday afternoon we put him in his baby bjorn and took him to a nursery. He enjoyed walking around and seeing all the flower colors. This next week we have no doctors visits - just home health nurse, OT & PT. Dad is looking forward to that. Ryan continues to get stronger and stronger and is making progress. Over the last few days he has seemed to find his tongue more than normal. He is now talking more with it and sticking it out. He'll make what you think is going to be a pouty face but he then pushes out his tongue. It is rather cute. He has also been a talking machine lately and he isn't quiet about it either. For 3 mornings in a row now, in the 4 a.m. hour, he starts talking. One of us will go see him and see if his pants need to be changed or rock him - see if we can get him back to sleep. Usually we get him settled in bed and let him talk until he falls asleep. He usually will after about an hour where he will sleep for maybe another hour before he starts talking again and then you know he is up for the day. Stinker! Thanks for checking in on him and us.
June 6, 2008 - Ryan weighed in yesterday at 20 lbs. 14 oz. It was a nice week with only in home appointments. We've been able to get Ryan to take more 60 ml bottles although until you get him to close his eyes and focus, it is a bit of a struggle but we're still making progress. Enough progress that OT feels she only needs to come every other week unless we feel we need her. Ryan is now getting 14 hours a day of breaks from the continuous feed. He basically eats for 2 hours and then is off for 3 hours. There is one 2 hour break in the a.m. to get this to even out. Hopefully he will do good with this amount and we can get him up to 16 hours off during the day by the end of next week. That is basically eating 1 hour and off for 3. He threw up quite a bit yesterday and Dad was worried that it was pressure from his head but today he has done really well. His belly must not have felt good yesterday. Nurse Suzi came to visit him on Monday and it was so nice to see her. He was getting hungry and tired when she was here so she didn't get to see him at his finest but she still couldn't believe how big he is getting and she is so happy he is doing well. He has continued to be very talkative and smiley. His laugh is starting to be more of a normal laugh and he has had a few squeals lately. He really loves being at the dinner table with Great-Grandma & Great-Granddad. He'll do something that makes them laugh and he just loves it so he'll start smiling and/or laughing too. It is so cute. He adores them (and they adore him as well). When Mom has had to get up with Ryan in the middle of the night this week he has wanted to chat. It's like dude - it is 2:30 in the morning, it is not time to talk it is time to sleep. Of course he doesn't agree nor does he chat quietly either. He will talk as loud as he can to make sure you hear him. Mom is worried that the grandparents will be woke up by little man but they don't seem to. She finally lets him talk himself right back to sleep (which usually takes about an hour). He is so funny. Ryan has wanted to be held more this week and has preferred sleeping on his side over his belly. He also wants to sit up more. He likes when you sit him on your lap up against your chest so he is facing away from you so he can see what is going on. He can sit like that for a long time and then every now and then he'll turn his head so he can see you. This weekend should be a quiet one but we do hope the weather will be decent enough that we can take him on some sort of adventure!
June 12, 2008 - Yesterday we had an appointment with the NICU Follow-up Clinic. This is a free clinic for NICU graduates that meet certain high risk factors (which of course Ryan meets). The goal of the clinic is to make sure those high risk kids are progressing on their development and if they see any issues to get the parents in touch with the right specialists and programs. We met with one of our NICU nurses, who was happy to see Ryan doing well and getting so big, and then we met with a physical therapist who checked how Ryan was doing and then we met with a developmental doctor. He basically said for all Ryan has gone through and for as long as he was in the hospital, he is behind developmentally and he is at high risk because of the brain bleed for motor skills issues, which we knew, but he did say that it really should not affect his intelligence. We told him we were told Ryan has 100% chance of having cerebral palsy but what we would have to wait and see is to what degree. He agreed with that. We also told him that Ryan appears to display that he is intelligent, which he said was good for us to pick up on and watch for. Overall, it is what we expected to hear and we did not get referred to anyone else. They told us to keep up the good work. We will go back in November for our next check up. Ryan did weigh in at 21 lbs 5 oz yesterday. Still growing like a weed. On our way out from this appointment we ran into our neurosurgeon and he was glad to hear Ryan seemed to be feeling well and wasn't having any issues. We told him it probably would all boil down to what he tells us the next day on the MRI. So this morning we went and had an MRI, which Ryan screamed like crazy. This was the first time Mom could hear him out in the waiting room. We had about 45 minutes to kill so we decided to go up to Pediatrics & PICU and see who was working. As soon as we got to the first nurses desk on the "dirty" pediatric side we ran into Ryan's favorite aide and nurse from oncology. They were happy to see him. We also many others while we were standing there. We made our way to the oncology ward and ran into the social worker. On oncology we saw another favorite nurse. We went into PICU an only saw one of the charge nurses, unit clerk and an RT. Everyone else was busy (it was surgery day) and unfortunately his most favorite PICU nurse was not working today (she works tomorrow darn it). Overall it was nice to see everyone and everyone was excited to see Ryan so big and doing well and glad he was only visiting. Many told us they had been thinking about him and wondering how he was. It is nice to know they still care for him.
We then went to meet with the neurosurgeon. He told us what we expected - Ryan's ventricles are getting bigger on both sides and while it is great he is still doing well, we have to be careful to not let it get to the point where he starts doing worse developmentally. We need to watch and if we start to think Ryan is getting stagnant in his development but not showing any other signs - then it is time to do something. The neurosurgeon pumped on the shunt valves and said they flushed nicely. Mom asked if we would still try to flush the shunts with a needle and he said it probably was not going to help. He said we also need to start thinking about when is going to be the right time to really open Ryan's right side of his head (open up the skull) so all those webs and nasty pockets can be cleaned out. This could help there not be as much debris that can clog the shunts. All of us agreed that we should give him more time and let him get a bit older before we open his head up so until then we'll do shunt revisions until we decide it is the right time. So as of right now we have an appointment for another MRI on July 1st and then will meet with the neurosurgeon right after. If things still are progressing like they have been we will schedule surgery for that week. If we start seeing signs or feel Ryan is stagnant and not progressing in his development, then we'll call sooner and we'll get the ball rolling. Not what we want but we knew it was coming. Hopefully this will be a quick in one day and out a day or two after. We definitely will be making sure that the neurosurgeon uses new shunt kits and does not reuse pieces since we still think that is what caused the infections in the first place. Other than that Ryan has been doing good. He is still super chatty and smiley. He has wanted a lot more attention lately and wants to cuddle more. We haven't made much progress in anything and we do kind of feel, now that we have had time to think about it, that he is kind of stagnant on his development. The neurosurgeon is out next week so we'll see how Ryan is the following week. We may call and bump up our appointment. All Mom knows is she wants surgery over and him recovered in time for his birthday because with all the little guy, us and our families have gone through with Ryan this past year - it is time for a party to celebrate how far he has come! We are going to take Ryan up to McCall this weekend and enjoy a little mountain air. Grandpa's golf course is open for play now that the snow is gone so Mom, Dad, Grandpa, Great-Grandpa and Great-Granddad are going to go play it while Grandma, the Great-Grandmas and Auntie watch him. Yes we're taking the majority of Dad's side of the family with us. It should be a lot of fun. Mom & Dad are looking forward to it - for us to get away and excited for Ryan to see a new place and get to spend some quality time with the family. Luckily he has his new big boy car seat, which he appears to love. That should make the 2 hour ride much nicer for him. We hope everyone has a Happy Father's Day and we'll update next week.
June 18, 2008 - We had a really nice time in McCall over the weekend. Ryan did really well and enjoyed all the attention. Tucker, the grandparents dog, did not like that Ryan got all the attention. At one point he got so jealous when Aunt Lindsey was giving Ryan attention and not him that he practically attacked her with licks and pawing in an effort to get attention. It was very funny. We got some cute video and photos while we were there (although none of the jealous Tucker). We celebrated Mom's birthday over the weekend as well and yesterday on the actual day she spent it with Ryan at home, which was a great gift.
We met with the pediatric surgeon that did his ostomy today. She is still wanting to do a G tube and fundo (wrap the stomach) and apologized that we have not done it sooner. We are against this and told her so. Ryan can eat from a bottle we just have to get him hungry enough and focused to do it. We have adjusted his feedings over the last week so he is off the feeding pump from 8 a.m. to 6 p.m. This should help us get him hungry and we're hoping he will eventually learn that you have to eat from the bottle to make the hunger pains go away. We've also started hiding his feeding pump. OT thinks this will help him forget that he is magically being fed and we're going to get it to the point where he is only being fed when he sleeps. The G tube would be to get the feeding tube out of his nose (remove the negative stimulus). This would be inserted into his stomach and come out down in his abdomen. This is the same thing we did not want to do back in March but were going to reluctantly give in to but now that we know more and know that he can make progress with the feeding tube in his nose, we are against it. The wrap would be because the G tube can make his reflux worse so you do that stop it but then he will have to have it forever and will not be able to throw up or burb. Mom has heard of a person at work that has one and all the problems he has. We definitely do not want this so we will continue to fight her on this. We are all interested to see what kind of progress he can make if his head is draining. We think we'll call the neurosurgeon on Monday and get the surgery done next week. We need to get moving forward again and right now we are not. Feeding has been a struggle and we're not making any progress in anything else.
June 23, 2008 - Thursday Ryan weighed in at 21 lbs 11 oz. PT came on Thursday and she got a decent workout with Ryan. Friday we had Ryan's buddy Carter over with his parents for dinner. We put the kids on the couch to get a picture and Ryan would look everywhere but at Carter while Carter was checking Ryan out. Then we got to the dinner table and Ryan was chatting away and then Carter chatted back - it was really cute - we wish we could have got that on video. Having not been around any other babies in forever, we realized after seeing how flexible Carter is - Ryan is still pretty tight and we need to work on stretching him out better. It was nice to have him around another kid so we'll be having more play dates in the future - hoping that Ryan will see that Carter drinks from a bottle and it is ok, that he sits up, rolls over, etc. and hopefully will try to do it himself.
The weekend was rather nice - Ryan spent a few hours with the Great Grandparents Saturday afternoon so Mom & Dad could run some errands, a good chunk of Sunday we were over at Aunt Lindsey's house and then Sunday evening we had dinner with the Great Grandparents. Ryan for the most part has been acting ok - still chatty, smiling, kicking and playing but the nights have been rough. We don't know if it is his head or just a phase but he would scream bloody murder just as he was falling asleep. He has kept Mom & Dad up quite a bit over the last couple nights. He has also done worse at taking the bottle - only in the 20 mls over the weekend but tonight he took about 40 and Mom got him to take almost half with a regular Dr. Browns bottle (not our special bottle). Still making some small improvements.
We met with the neurologist's physician's assistant this afternoon and we're to come back in a month to do an EEG to see if he is still having any kinds of seizures. If so we'll adjust his med off of phenobarb to something else. If he isn't showing any then we'll get off of it. She hadn't met Ryan before and she said after reading his file she was expecting to see a baby in much worse shape. She was pleasantly surprised to see how well he is doing and told Mom & Dad that we're doing a good job. Mom called the neurosurgeon this morning and he was over at the other hospital working on a trauma so his assistant said he would be in later and he'd call us back. He called later in the afternoon and Mom & him chatted about how things were going and that we wanted to get the surgery knocked out this week. He was ok with is especially when he heard Ryan was doing worse with the bottle. So tomorrow morning we go get another one shot MRI and then Thursday morning we have to be at the hospital by 6 a.m. Surgery is at 7:30 a.m. His pre-op friends are going to die when they see us back! Mom talked to nurse Karla from the PICU and told her he'd be coming back so his girlfriends will be ready to see him Thursday. We really hate having to do this but we need to see if we can get his head drained. The poor kid has a migraine and is acting way better than Mom or Dad probably would. It is truly remarkable how all he wants to do is be happy, be around people, laugh and play. He can ignore a migraine like it is nothing. What a champ! So as we start this crazy rollercoaster again - please say a prayer for a successful surgery and a very short stay in the hospital. We truly hope to be out of the hospital by early next week - just in time to celebrate 4th of July. We'll update Thursday night or Friday morning.
June 25, 2008 - Ryan is 11 months old today. Hard to believe in a month he will be a year. Surgery is bright and early tomorrow. Mom has to stop his feeds at 1:30 a.m. and then he can have clear Pedialyte until 5:30 a.m. As if on cue Ryan has been making some progress in a couple areas and so Mom & Dad wonder if we pulled the trigger too soon to have surgery but we assume that the neurosurgeon would have called us if the MRI showed improvements. Ryan has been doing better taking feeds from a bottle. Since Monday Mom has been switching bottles after Ryan gets his suck, swallow, breath rhythm down. He has been improving on the Dr. Brown's bottle. Today Mom put 80 mls in the Dr. Browns and 20 in the special feeding bottle. Mom started with the special bottle and then after a few minutes switched to the Dr. Browns bottle and Ryan almost drank it all. Out of the 100 mls total between the 2 bottles - he only had 30 left - that is the best he has done. Now Mom is wondering if the flow on the special bottle gets too slow after he gets his rhythm down. Today the Great Grandparents were watching Ryan so Dad could sleep and they said that Great Granddad sat Ryan over his leg so Ryan's feet were touching the floor and Ryan kept standing up. Usually he just kind of jumps up and down like in the video when we were in McCall but they said this was actually standing and then would take a break and then he would start again. They said he did this for a half hour. Good boy! Oh we hate that our sweet boy will have to be back in the hospital tomorrow and soooooooooo hope it is a short visit. Thanks to everyone that has sent well wishes on the surgery.
June 26, 2008 - Oh what a long day! It is after 9 p.m. and we have been at the hospital since 6 a.m. Dad has been up over 24 hours and Mom has been up since 3 a.m. We are pooped! We got to pre-op around 6:20 a.m. The normal folks rolled through - anesthesia, nurse anesthetist, OR nurse, and neurosurgeon. He had not looked at the MRI yet so we looked at it together. The ventricles are definitely big and defined. Even the pockets that are on top in the middle that have never done anything are bigger. Where we were questioning our decision yesterday - today we are not - there is a lot of fluid that Ryan needs to get rid of. Ryan was in a great mood all morning - so happy, kicking, talking, playing. They wheeled him in to the OR at 8 a.m. It usually takes a good hour for setting up, getting an IV started, getting Ryan under, and getting him intabated. About 9:45 a.m. the OR called out to the surgery waiting room. The neurosurgeon got on the phone and said he had just started on the left side and the catheter was working ok but the tubing down into the belly was blocked and stuck. NOOOO!!!! Not again, please not again... Luckily our general surgeon was in surgery a few ORs down so he called her and she was just finishing up and would be over in 5-10 minutes. Mom asked if the neurosurgeon thought that the tubing could be stuck/plugged by the adhesions in Ryan's belly - he said it was a definite possibility. He said they would call out later. 3 hours went by and no word. We finally decided at 12:45 to go get lunch so we were checking out at the surgery waiting room desk when they asked when was the last time we had an update. We told them 3 hours so they called back to the OR desk and asked to have them call out. They quickly did and told us that they basically had not done anything yet. The general pediatric surgeon went in and was exploring around and cleaning up adhesions and now they were determining the best course of action. To us that meant - do we even try to put to the belly, if so where do you put the tubing or do we go to gallbladder. Thank goodness there was nothing said that the intestines were wrapped up in the tubing - whew! We went to lunch and just over an hour later, at 2 p.m., we got another call saying they were working on the right side and were working on tunneling the tubing. About 3 p.m. we got a call that they were done and the neurosurgeon would be out to talk to us. He came out closer to 3:30. He said when he detached the valve from the tubing the spinal fluid was flowing out of the catheter so it led him to believe that it was the tubing. He had troubles irrigating the tube and when he tugged on it and it didn't move, he immediately stopped and called for the other surgeon. When she got in there she found that the tubing was wrapped up in the adhesions and clogged by them. The right side was slightly working but was also kind of clogged and the adhesions had formed a type of scarring around the tubing. They got the tubing out, the surgeon cleaned up some adhesions and looked for a place to put the tubing. Mom had wondered at lunch if they should just make the tubing shorter so it didn't go down so far - this would eliminate the possibility of getting wrapped up in adhesions and intestines. The neurosurgeon then said that is what they did but that they also tunneled the tubing from the left side over to the right. Ryan now holds the record for the longest shunt surgery for the neurosurgeon. Great - just what we wanted - leave it to Ryan!
The neurosurgeon even brought us pictures. Below is one showing intestine in the left lower corner, abdomen wall in the top right corner, adhesions are the web like areas and you can barely see the tubing tangled in the web at the top just to the left of the middle.
We got up to the PICU and Ryan was getting settled and doing well. He got upset from time to time but they are on top of his pain meds and sedation. At times he was trying to feel well and was smiling, kicking and wanting to play. They left him on the ventilator over night as the neurosurgeon remembers all too well what happened last time and decided to let him ride the vent so the nurses can stay on top of pain meds without worrying if they were going to make him stop breathing. Unfortunately Ryan's tolerance to drugs is very high so you have to give him a lot to make it help him. Before they left surgery to go to the PICU they gave him a paralytic and by the time they got to the PICU it had wore off - does not usually happen that fast. As long as all goes well over night he should be taken off of the vent tomorrow morning. He did do one funny thing that we think was a seizure which does not make sense since they did not poke around in the ventricles. They will continue to watch to make sure he does not have any more. They find it odd if it was a seizure because the sedative is an anti-seizure medicine and they gave him phenobarb which is also for that.
We have no idea when he will be coming home. Based on how he has recovered from the last 2 shunt surgeries, Mom thinks he may get to come home by Monday. But as usual it all depends on little man. Please say a prayer for quick recovery and healing and that the shunts will work well this time! Hopefully we didn't gross anyone out with the picture! As much as we hate the stinker to not be at home this evening - Mom & Dad are looking forward to a few solid hours of sleep!
June 27, 2008 - Ryan had a good night. When Dad got to the hospital at 7, he heard the plan was to get Ryan off the ventilator after they got back from going to CT. Then Ryan decided to do one of his famous get mad and hold his breath episodes. He tanked his oxygen saturations to about 14 (you want to be at 100) so they gave him a paralytic and off to CT they went. He slept most of the day and when he'd wake up he would get mad but nothing like in the morning when he tanked his oxygen. Mom arrived at noon and the afternoon was very quiet - he only woke up once and didn't get very mad but was complaining. Mom met with the neurosurgeon and he wasn't happy to see Ryan still on the vent but happy to hear the plan was to get him off today sometime. He was pleased with how Ryan's head felt and pleased with the CT. He showed it to Mom and it shows the ventricles are slowly getting smaller - there is a noticeable difference from the MRI on Tuesday to the CT today. He even was pleased to see there is more water over the surface of the brain which means Ryan's brain is relaxing or decompressing. From his end, it sounds like as soon as Ryan is up to go home we can. We'll have him scanned again in a month to see how the ventricles are doing. About quarter after 5 p.m. they took Ryan off the ventilator. He sounded like a duck but he let everyone know of his unhappiness. He sounded horrible - he like had a lot of junk in his chest and wheezy - not what he normally sounds like when he gets off the vent. He was having problems and the RT had to do some work on getting rid of some of the junk They had to give him a neb treatment many times to try to break stuff up and help him out. He was unhappy for the rest of the night. He'd settle down and then cry and then settle down and then cry. Finally about 9:30 p.m. Mom got him in her arms hoping that would help but he still sounded so junky - he really needed to cough and he wouldn't. She held him for a little bit and then they wanted to do another breathing treatment on him. They had said he fell asleep after the last one so Mom put him back, hoping he would settle down and sleep the rest of the night. He did settle down and fall asleep so we left around 10:30. Hopefully tomorrow the swelling in his throat will be down and the junk in his lungs will be less and we'll have a better day.
June 29, 2008 - Ryan has been doing really well. When Mom showed up yesterday around 8 a.m. he was smiling, kicking, playing, talking. He still had some issues with his breathing, called strider, so they gave him decadrone 4 times over the last 2 days to help with that. He has had some fussy times but overall been really good. We got moved out of the PICU today in the afternoon and we kicked up his feedings tonight almost back to where we were. The plan is for us to go home tomorrow. We're hoping early but it will depend on the neurosurgeon.
June 30, 2008 - Ryan came home today! We got home about noon. Before we left he had been sleeping nicely and he was woken up to having his feeding tube changed. He has been moody ever since. He is currently complaining to Dad and the Great Grandparents as Dad is checking Ryan's oxygen saturations. We got sent home with an oximeter this time to check his oxygen levels so we can wean him back down. We came home on a quarter liter where normally Ryan is on 1/16. We'll get there soon - he usually takes a week to get there after surgery. We're already seeing improvements - he took 92 mls by bottle for Mom around 1 p.m. Let's hope as he feels better he continues to take off.